Caringbridge journal entries 2015 by John McCaul

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Prepared for Sophia's site on January 20, 2015.

Journal First day of treatment Carrie Sapienza, April 26, 2012 Sophia is in the OR right now receiving a bone marrow biopsy and spinal tap. She was so cute as they were giving her the anesthesia. (Thankfully, it was through an IV so she could talk to us.) One of the nurses had an iPhone and showed Sophia how to play a game. Sophia was playing and laughing and pressing all sorts of buttons. The last button she pressed as she fell asleep was Purchase Now. The nurse said, "OK, well I guess I've got a new game."

April 26, 2012 Jane McCaul Sophia came through the surgery very well and woke up to Mom and Dad at her bedside. We explained where she was and her first words were, "I can eat now, right?"

She is still pretty groggy and not talking much. But she's now in her own room with a plate of chicken and fries in front of her. However, she's not eating fast enough and it looks and smellsreally good. KK and I are trying really hard to hold back. (She gave me a scowl the first time I took a fry.)

We read her the messages from friends and family. She seemed very happy.

We are so grateful for all the prayers. Please keep them coming.

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Message from Sophia Jane McCaul, April 27, 2012 Hi Everybody, Thanks for the messages. If you wanted to play x box you might have to wait until I get to the new building (Sunday.) I don't have one in this room, only a Playstation. Bye, Sophia

So I was asking Sophia what else she wanted to say in her message. I offered, "Do you want to tell them about the awesome food you get to order from room service?" She said, "Why in the world would they need to know about that."

We'll try again another time.

And the roller coaster begins Jane McCaul, April 28, 2012 I couldn't write a journal entry for the better part of today because it would have been depressing and sad . . . and maybe a little angry. We had a ROUGH night and LONG, hard day today. Lots of tears all around (I discovered the bathroom is a great place to hide when losing it.)

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But THEN, around 5:00 things began to change. I knew Sophia was beginning to feel better when she crank called her sister: Sophia, in a British accent: "Ello! Is your refrigerator running?" Christina: "Sophia, is that you?" Sophia: "Who is this Sophia that you speak of?"

Then, around 6 she was throwing stuffed animals at me laughing hysterically. By the time her cousins Joey and James got here, she was in rare form.

Her 8:00 meds were taken with smiles and no difficulty whatsoever. (These are the same meds that took 2 hours to take earlier in the day~ with LOTS of tears!)

We're told that one of the medications she is on can cause mood changes, sometimes for the better. I will gladly take hyperactivity over tears. Any day.

Of course, it could also be the prayers from all of you. So PLEASE keep them coming. If we could have another 3 good hours tomorrow, it will be worth whatever difficult times we will also have to endure.

April 29, 2012

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Jane McCaul I am so pleased to report that Sophia (and Mommy and Daddy) slept well for the first time last night. Sophia slept right through a blood transfusion and 11:00 oral med intake. Wheeeeeeeeeew! She woke up, turned to me smiling and said, "We move to the new room today."

We were just told that our scheduled time slot for the big move is 12:40. We're very excited. Sophia will be in the Bloomberg Children's Center, Floor 11, Room 4.

She isn't thrilled with all her morning meds but John and I are keeping her entertained dancing around the room. It's comforting to see her laugh so much. And I think I'm picking up some pretty good moves . . .

Busy, Busy day Jane McCaul, April 29, 2012 What an exciting day we had today! The move to the new building was fun with people lined up in the halls welcoming Sophia at every turn. When we got to her new room, there was a ribbon across the door (see photos.) The nurses said, "What do you say, Sophia? Do you want to break through the ribbon?" She did and we entered a beautiful new room. She was the first patient to play in the new playroom - which has gorgeous views of the city. Soon after, many other children came to play. I am always apprehensive to see Sophia's reaction to the other children, particularly those who have lost their hair. She just seems to to take it all in. Today she said, "That younger boy we saw has had cancer longer because he has no hair. The older boy still had some left." I suggested we have my friend Gina come in and give her a cute short haircut soon. She's warming to the idea.

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We had lots of visitors today! Nanny & Grampy, our friend Tricia, our friends the Paynes, and Sophia's friend Ceci and her mom Elaine all came to help break in the new room. The day ended on a good note, too. We tried mixing one medication she dislikes into chocolate puddingsuccess! She was sound asleep by 8:30. As I left, John was getting ready to snuggle in with her. This is my first night at home. We thought it would be a good idea for me to go home for a night, to sleep in my own bed. I have a feeling its not going to be so easy.

April 30, 2012 Jane McCaul Good Morning! It certainly seems to be one. I arrived back to a smiling Sophia who was eager to take her medicine in the chocolate pudding. Both meds only took 10 minutes total! She and Daddy had a great night's sleep. So did the rest of the McCauls. It was so nice for me to be able to spend time with Christina and Jack. I might have been a little over-enthusiastic, though. This morning I said, "How about I cook bacon?! What else?!" They both just said, "A bagel is fine." I know many people have inquired about dinners for us. I came home yesterday to find enough food for an army. Mimi and Papa Gene had come for a visit Saturday and left us very well-stocked! So we are FINE for the time being. (That Papa Gene loves to shop!) During their visit on Saturday Mimi left us with something even more valuable. She gave Sophia a necklace with a medallion of St. Anne with her daughter, the Virgin Mary. St. Anne holds a very special place in our family. Both of our girls (as well as all the McCaul girls) are named for her. We have her statue in our back yard. Sophia is unable to wear the necklace right now so I am wearing it. I can't tell you how many times I find myself just touching it. It is a great comfort to me. The ultimate mother-daughter connection.

Trying to be brave Jane McCaul, April 30, 2012

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I'm watching this angel sleep and I know I should try to sleep as well before the midnght meds but my brain just won't shut off. She is trying so hard to be brave, She had difficulty with her "pudding medication" tonight so I'm nervous about midnight. She seems to do so much better when she is well-rested. When she finds a dose hard to take and is crying she always says, "I'm sorry. I'm trying so hard." That completely breaks my heart. We did have a really great day, though. She had an awesome time visitng with her cousins Christopher and Nick. Then she decided we were having a Girls Nght. Our fabulous nurse, Joanne, let us pick a brand new nail polish (purple glitter of course) and we gave eachother manicures. (As of last week, my nails are pretty nonexistant so it's kind of funny.) We also made a new door sign, created a mosaic butterfly and painted the windows with window paint. (Thanks, Tricia!) We were supposed to stay up until midnight eating snacks and watching movies but she obviously bailed on me. We had a surprise late visit from Christina, Jack and Daddy. They brought her cards and gifts from friends. She enjoyed reading all the well-wishes. And anything having to do with one particular Harry Styles of One Direction would bring a huge smile. Then the three of them sat on the floor making their beaded necklaces. Sophia gets a bead for every challenge or activity she goes through here. She's up to about 30 beads. Today our socialworker brought over a "Super Sibs" bag filled with activities and information for Christina and Jack. Among the activities~ their own set of beads, each with a different significance. Chrisitna was very methodical about it~ readng about each bead and deciding what order to string them. Jack had all his beads strung within 2 minutes. It was late, Phia was tired, the kids have school tomorrow . . . but it was heartwarming to see the three of them bonding again. Just weeks ago I commented that life was moving way too fast and I wished it would slow down. Now I desperately wish we could fast-forward two years from now. Sometimes I want to say to God, "I'm sorry. I'm trying so hard to be brave." Please keep your prayers coming. We love you.

vgdhfjgjfhhbghbvgsxcgfwsvgenhjhg Jane McCaul, May 1, 2012 hi this is coco the monky and i say ugghurgbvhuhjefcvbehgfyhgryfygffygyg3fgygygfyggfytrftyuhd!@#$% ^^&*()-= sophia McCaul ehntughebyuhurfhjtjkghrtlejrjujubhytjbhuhuhtrugerv uhgeuuhbugbhu jhhhhhhhhhjgdfuibhsjijt'l[ m',nk4yt54huoh kyhnutbhuhuhubhvghwhgcjvystegbdtuunbbiitj ikeh ithijhj h ij i j

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oh j 34ogjiyuhi35ucvjht4iir0uj46h5 igjkg,5oj4oi67ou6o65ir8u8o4j5nygtrteft5redrdfr5ie8yg8ygh8yg8ygry8uytuoprigwe658gyhgrg

I leave the room for a few minutes!!! Jane McCaul, May 1, 2012 I came back to fnd Aunty Catharine and Sophia having fun! (Previous journal entry) The best part of that entry was watching Sophia try to translate it. Then she made it into a song and added dance moves. SO nice to hear that laughter again. Thanks Dexamethasone!

May 1, 2012 Jane McCaul I wish I could say the medicine-taking was getting easier for Sophia. It's still pretty rough. During the midnight dose, as I was hugging her tightly, I decided that my prayers from this point forward would be geared toward making this one particular part of her treatment better ~that her anxiety would somehow be transformed into peace or solace. . .anything to help her through it. We'll see . . . When she wasn't taking medication, Sophia had a FUN day today. Throughout the day she had visits from Grace and Mary Adkins, Fr. Jim Conroy, her Aunty Catharine and Nanny & Grampy. She laughed and fooled around a LOT. It was very comforting to see. Plus, she had a great appetite~ something we hadn't seen for a while. I had an interesting experience today. We were invited to attend a "Parent Lunch & Learn" (which, by the way, was catered by 3 Brothers so . . .BONUS!) The meeting was regarding summer care for children undergoing treatment. Five minutes into the discussion I had the feeling I didn't belong there. I felt like I was listening in on parents' conversations about their children and cancer, something that I wasn't really a part of. When it sunk

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in that this was now our life~ that my child was one of these kids who, among other things, would have to take all these precautions just to be able to go out in the sun and do all the things a 7 year old does in the summer~ I spent the rest of the meeting holding back tears. I was determined to get through it without crying. And I did! It was just so surreal. Catharine stayed with Sophia later while I went for a walk around the campus. There were gardens with a fountain I could see from our window that I wanted to visit. I was walking around in a bit of a stupor from a lack of sleep but I was struck by how beautiful the gardens smelled. I have no idea what flowers they were. I walked all around the outside of the hospital looking for the 20 foot Jesus statue that I had heard so much about. Ready to give up, I entered the building from Broadway and . . . there He was. HUGE. There were two books on either side of Him where people could leave special intentions. I don't remember what I wrote in the book (I know it was something similar to what I prayed to St. Anne & Mary ~ with regard to making the treatment easier) but I rubbed His big toe (which is the size of small apple!) said another little prayer, and left feeling a little better. Baby steps . . .

So grateful Jane McCaul, May 2, 2012 Christina, Jack and I spent a nice night at home last night. We snuggled on the couch, got caught up on Hawaii 50 and ate Combos til we burst.

John and Sophia had a nice visit with John's friend, Sean. He came delivering love, support and gifts from the amazing faculty and staff at Loyola Blakefield. We are OVERWHELMED by their generosity.

We told them and we'd like to tell everyone else who has been so supportive that this whole experience reminds us of the words of St. Theresa of Avila:

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"Christ has no body now but yours No hands, no feet on earth but yours Yours are the eyes through which He looks compassion on this world."

We are so incredibly grateful for the amount of love and compassion we are receiving from all of our family and friends. It means everything.

Bingo! Jane McCaul, May 2, 2012 One of the highlights of staying here for Sophia is the Wednesday Bingo game. It is filmed live and airs on the TVs in the rooms. The children can either attend or play from their rooms. Each participating child's name is called at the beginning of the show ("and we have Sophia from 11 south . . . ") and the child can call in if they win to pick a prize. Last week Sophia won a Build A Bear so this week she couldn't wait to play. Lo and behold, she won again! This time the two things she had wanted had already been chosen so she settled for a Barbie . . . which she ended up playing with for the rest of the day. It was another busy day which is always good for Sophia. My sister Carrie (KK) came again in the morning and gave us a break so that I could go to the gym (I was able to get a visitors pass for the month!) and John could go to the Teen Room to work on his puzzle. Our dear friend John from Loyola came by with a Loyola teddy bear and attempted to steal the MSJ bear that Uncle Chris had brought. Both bears are sitting side by side at the foot of her bed. Sorry, John and Chris! Then Thelma and Louise (Tracy and Kathy) finally showed up after 1. Getting lost, 2. Not finding parking in the garage, 3. Finding parking far away and 4. Taking a cab. Tracy's texts had me laughing more than I have in days. We had a great visit. Every day since we have been here I have felt so incredibly fortunate to have the friends that I do. Whether its daily chats on the phone or heartfelt words in a text or email, I am truly lucky that God placed all of these people in my life.

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One of Sophia's first crushes, Mr. Tibbo, also came for a visit. Shawn spent a great deal of time with us several years ago and when he was finished with our beautiful kitchen Sophia was devastated. Whenever she would ask where he was, I felt like I was explaining a break-up to her: with a dramatic pause,"Mr. Tibbo won't be coming back, sweetheart. He's moving on." She realized today that that wasn't really the case. Christina and Jack arrived today at the same time as more Loyola friends - Anthony Day and Fr. Pesci came for a nice visit, as well. By this point, Sophia was winding down but she was so happy to be with her sister and brother. They stayed for dinner and for her final medication of the evening (can I just mention how awesome my husband is? He is SO much better at the medicine thing than I am.) Sophia was in bed by 8:00, sound asleep by 8:30 and the best news is: she does not have a midnight med tonight!!!!!! They will do blood draws but they don't even need to wake her up for it. I think my baby is going to get a good night sleep. That alone gives me promise for a good night as well. Sent from CaringBridge iPhone app

Breakfast blues Jane McCaul, May 3, 2012 I tried to order Sophia's breakfast almost an hour ago and was told on the phone that she had been bumped out of the system and needed another nutritional order from her doctor before she could order. This particularly stinks because it takes an hour to get the food once the order is placed. I went to the nurses station, told them the situation, they called Food Service and heard the same thing I was told. The nurse told me she would get the doctor to fill out the order then she would let me know. I still haven't heard back and I am very close to pulling a Shirley McClain at the nurses station, banging my fists on the counter, "My daughter needs her pancakes!!!!!" I suppose I ought to choose my battles, though. Sent from CaringBridge iPhone app

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Breakfast Update Jane McCaul, May 3, 2012 So once I had a cup of coffee and the fog cleared, I realized I had wheat bread in the fridge. I made her toast with peanut butter so at least her tummy is not empty. Soon after, we got the go ahead to order so our little angel will have a pancake snack soon. Sent from CaringBridge iPhone app

Elmo is in the House! Jane McCaul, May 3, 2012 We were just visited by Elmo . . . THE Elmo! Unfortunately, Sophia refused to have her picture taken with him (them.) I have a feeling I might have been the most excited person in the Playroom. I was so close to asking to pose with him but figured it wouldn't be appropriate. Then I actually watched from our room as he went around visiting all the kids who couldn't leave their rooms. I love a brush with celebrity! Sent from CaringBridge iPhone app

HUGE news . . . maybe? Jane McCaul, May 3, 2012 OK, so when we first got the diagnosis, we were told she would probably be in the hospital for 8 days or so, until after the second spinal tap. Then she would probably go home, continue with her daily meds and just come back for chemo weekly. A couple of days into treatment, however, they changed the duration of the stay to more like a month because she had spiked a fever a couple of times.

Today, we were told (because all of her numbers have been looking really good) that there is a chance we could

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go back to that original plan and go home tomorrow afternoon. This is contingent upon the outcome of her surgery tomorrow morning as well as her blood counts tonight.

So PLEASE keep those prayers coming.

Quite honestly, when I first heard this news I panicked. I thought she is only doing so well because we are here with the best doctors in the world. What the heck is going to happen when she's not being monitored 24/7?! But I have spent the day practicing with a syringe on a dummy, learning about the timing of the vital signs, etc. So I think we are ready. And that's not just because I want to sleep in my own bed. (But I really want to sleep in my own bed.)

It's mostly because when she is around her siblings, family and friends, she looks great! (See photos from today) When she's not, she has periods of real sadness. John and I try to keep her occupied but she is very much like her parents ~ a major social creature. She desperately misses Ginger (and we're told she's allowed to be around pets so that won't be a problem) as well as Christina and Jack. She spent the past hour crying about wanting to go home. It's so hard to console her because her I don't even know what to tell her. "Let's just wait and see" isn't going to cut it.

I have also read that week 3 is pretty horrible. Anything we can do to make it the slightest bit better would be great. Going through what we will go through at home might make it that much easier for Sophia.

I truly believe that the amount of prayers has helped us get to this point. Even if we end up staying the entire month, the fact that the numbers are favorable are directly related to the outpouring of love and intentions Sophia has received from so many people. I just know it.

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So . . . I guess we'll see.

Surgery Jane McCaul, May 4, 2012 John and I are in the waiting room. It shouldn't be long.

We had her laughing and joking in pre-op but she was really scared when we went back to the OR. She even panicked right before going under. I was trying so hard to control my eyes (which I'm pretty sure were huge with horror) because that's all she could see of me since I was wearing a mask. Thankfully she wasn't looking at me. I hope she didn't hear me when I whispered harshly, "What is this?! This didn't happen before!" But I held onto her hand until she was asleep and they gently pulled me away.

I hate this.

Sent from CaringBridge Android app

Out of surgery Jane McCaul, May 4, 2012 Sophia is out of surgery and back in her room. She is very tired and not feeling well which is to be expected. We are told by her nurse that she will receive another dose of chemo through her IV later today. I imagine they will see how that goes before deciding whether or not she can go home today.

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So for now . . . we just wait. I'm about ready to snuggle in with her for Cinderella 3. (I never even knew there was a 2!) Sent from CaringBridge iPhone app

We're going home! Jane McCaul, May 4, 2012 Sophia got the thumbs-up to go home this afternoon/early evening! Her numbers aren't fabulous and she is now entering the phase of her treatment (NADIR) where she is most susceptible for infection so please don't be offended if we aren't accepting visitors for the next two weeks. Obviously I'm a nervous wreck but I also really want her to be comfortable at home. Thank you for all the prayers. Please keep them coming! Sent from CaringBridge iPhone app

Home, sweet home Jane McCaul, May 5, 2012 Sophia was able to sleep all the way through the night without a single interruption. She woke before 6am, just in time for her treatment. She's having her favorite toast, snuggled on the couch. And there's a fresh pot of coffee in the kitchen. Life is good. Sent from CaringBridge iPhone app

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Talk about a Homecoming! Jane McCaul, May 5, 2012 Once again I am overwhelmed by the outpouring of love. Some of my favorite people in the world showed up at our house today and began working on our yard - weeding, cutting, trimming, planting. Unbelievable. This is absolutely going above and beyond. Thank you does not even begin to cover it. I had been determined that all of Sophia's treatment would not interfere with Christina's upcoming graduation festivities. I assured Christina that we would be present at everything and that we still intended to have her party . . . But I was worried about how we would accomplish all that, especially getting our much-neglected yard ready for an outdoor party. Once again, our friends came through . . . in spades. During the out door frenzy of activity, the Home Health nurse came for a visit. She supervised my flushing of the PICC line (I passed- whew!) did Sophia's vitals and went over a ton of paper work with us. She said since Sophia goes to clinic once a week for treatment, if all goes well we will never see her again. I thought, "Good riddance." Oral medication intake still stinks but all in all, everything is going well. And we have a beautiful yard to boot. It's nice to be able to say prayers of Thanksgiving. I felt like was wearing out the Intentions. Sent from CaringBridge iPhone app

From Heaven above Jane McCaul, May 6, 2012 We were sitting around talking about everything yesterday when Christina said, "Thank God Auntie Lorraine wasn't alive for this. It might have been the thing that killed her." (Lorraine was a dear family friend who was fiercely protective of our family. She passed away 2 years ago.) We then decided the same thing about the great-grandparents.

My maternal Irish grand-father, John Dinan would wake every morning, fall to his knees and thank God for another day. My paternal Italian grandmother Lucy Coelho had religious relics all over her little house. She

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had been known to turn her giant picture of Jesus around on the wall if she was "unhappy with Him."

I'm not exactly sure how it works up there but here's what I believe might be happening:

Lorraine is bugging the heck out of every angel, "What blessings are you bestowing on her today? Exactly what time and how often are you doing this? Explain to me why she is still in pain? What is your plan for this?"

John Dinan is on his knees, praying every morning for another day for Sophia. His wife Gertrude, my grandmother, is singing soft sweet lullabies to help comfort Sophia when she is sad.

And Nana . . . oh boy . . . if she turns pictures around . . . I don't even want to know . . .

I apologize, God.

Ups and downs Jane McCaul, May 6, 2012

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Today was a bit more difficult for Sophia than yesterday. The excitement of being home has begun to wear off with the realization that she still has her daily treatment and medication to take. Thankfully her temp has not creeped above 99.3. If it gets to 100.4 (or even 100.3 for more than 4 hours) we need to go back to the hospital. At one point while crying she said, "Why did God pick me?" Heartbreaking. I said, "He did NOT pick you for this. When He heard this happened to you, He cried and cried. This makes Him so sad. But He's trying to help you get through it. All the love from your friends and family and the nice things you have received are supposed to make it just a little easier to get through this hard time." She did have a nice time seeing her friends yesterday. At first she didn't want to go outside because she was embarrassed to have to wear her mask. But her wonderful friends were more than willing to wear masks, too. Today, she was too tired to go outside at all. She was able to visit with Mimi and Papa Gene, though! Her appetite seemed fine, too, when they mentioned crumb cake. And after another nap, Mrs. Amann came by to deliver well-wishes from the first grade. We are hoping to Skype with the class this week. She's sleeping again now and we're going to let her sleep as long as possible until the next meds. If you think of it, we could always use a few extra prayers for that. Sent from CaringBridge iPhone app

Resting Jane McCaul, May 7, 2012

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Sophia had another restful day today, not a whole lot of energy. But Nanny and I cleaned the screened porch and she spent a couple of hours in her new little room on the iPad, snuggled in the quilt her neighborhood friends made for her.

When John suggested she do a craft or read, this is the dialogue that followed: Sophia: "One time when Jack had the flu, he watched TV all day long. Mine is worse than the flu. Can't have I have a whole day of watching TV?" John: "I suppose so." Sophia: "Actually, it doesn't feel much worse . . ."

Bless her little heart. I'm pretty sure she's never had the flu.

Just took her temp ~ 99.9. We're getting a little too close to the "back to the hospital number." I told her to think cooling thoughts . . .

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No fever Jane McCaul, May 7, 2012 Just a quick update ~ Sophia's last temperature was 98.7 so we are good. Whew . . . another night in our own beds. :)

Amendment Jane McCaul, May 8, 2012 I should have pointed out that the neighborhood quilt also had patches from ALL of Sophia's cousins.

That may seem like a silly thing to mention but for the past 12 days my sister Carrie has been busting her bum, running back and forth from her house to the hospital, to my work, to my house. And in the middle of it all she still found time to get her kids to our neighbor Gretchen's house to get their patches made~ as well as patches representing our not-so-close cousins.

I just think she needs her props. Thanks, KK!

(PS ~ She's probably going to be annoyed by this.)

Amendment Jane McCaul, May 8, 2012

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I should have pointed out that the neighborhood quilt also had patches from ALL of Sophia's cousins.

I just think she needs her props. Thanks, KK!

(PS ~ She's probably going to be annoyed by this.)

Sleeping soundly Jane McCaul, May 8, 2012

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Sophia is already asleep for the night. I will need to flush her PICC line later tonight but she will probably sleep right through it. She had a pretty good day today. The evening med intake was actually quite good, very minimal amount of fussing. During the day, she she still did not want to do a whole lot. She doesn't have much energy these days. There sure hasn't been much crazy dancing. I think I miss that most of all. Sophia was always our . . . sassy . . . . little girl. She knew how to push the limit. People would raise an eyebrow and say to us, "THIS one is going to give you trouble." But she has always been a sweetheart. One of her medications causes mood changes so recently she has been belligerent at times. She might yell at me and I'll just look at her with a sad face or say, "That hurts my feelings, Sophia" and she will burst into tears apologizing. She has no control over her ever-changing emotions. We keep telling ourselves (and Christina and Jack) that it's not her, it's the medication. I just want my girl back. Her fever fluctuated again today but never got above 99.3. I think we will make it until our clinic visit Thursday. We're told to bring an overnight bag with us just in case there's a reaction to the chemo or she gets a fever. I'll pack it . . . but I am leaving it in the car. Sent from CaringBridge iPhone app

Sleeping soundly Jane McCaul, May 8, 2012

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The Signature Sophia

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Jane McCaul, May 9, 2012 Today is a big day for Sophia. In anticipation of the possible hair loss, my friend Gina is coming over today to cut Sophia's hair. She may/may not lose all of her hair but at the very least there will be a great deal of thinning. So we thought a short hair cut might make it a little less drastic. Up until she was about three years old and decided she wanted to look like Rapunzel, Sophia had an adorable hair cut that someone referred to as "the signature Sophia" and it somehow stuck. I'm kind of looking forward to seeing it again. Sophia is a little sad about cutting her hair. I can't blame her- it is beautiful. So I am getting a haircut today as well. I am not getting the "signature Sophia," however. I know my limitations. Plus, Jack (and John) are not exactly thrilled about me cutting my hair. But she feels better knowing we're both getting cuts so hopefully that will make things easier for all of us. I pointed out that Rapunzel had a short hair cut at the end of Tangled . . . and that's when her life really started to take off. Sent from CaringBridge iPhone app

The Signature Sophia Jane McCaul, May 9, 2012 Today is a big day for Sophia. In anticipation of the possible hair loss, my friend Gina is coming over today to cut Sophia's hair. She may/may not lose all of her hair but at the very least there will be a great deal of thinning. So we thought a short hair cut might make it a little less drastic. Up until she was about three years old and decided she wanted to look like Rapunzel, Sophia had an adorable hair cut that someone referred to as "the signature Sophia" and it somehow stuck. I'm kind of looking forward to seeing it again. Sophia is a little sad about cutting her hair. I can't blame her- it is beautiful. So I am getting a haircut today as well. I am not getting the "signature Sophia," however. I know my limitations. Plus, Jack (and John) are not exactly thrilled about me cutting my hair. But she feels better knowing we're both getting cuts so hopefully that will make things easier for all of us. I pointed out that Rapunzel had a short hair cut at the end of Tangled . . . and that's when her life really started

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to take off. Sent from CaringBridge iPhone app

Haircuts Jane McCaul, May 9, 2012

OK so maybe going first wasn't the best idea. When I was finished, Sophia decided she no longer wanted short hair (ouch) and was going to scrap the Signature Sophia idea.

Gina was fabulous and kept her happy throughout the haircut. We didn't quite get to the signature cut but we got close enough.

More fun photos of our adventure are in the Photos section.

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Haircuts Jane McCaul, May 9, 2012

OK so maybe going first wasn't the best idea. When I was finished, Sophia decided she no longer wanted short hair (ouch) and was going to scrap the Signature Sophia idea.

Gina was fabulous and kept her happy throughout the haircut. We didn't quite get to the signature cut but we got close enough.

More fun photos of our adventure are in the Photos section.

Beautiful Day Jane McCaul, May 10, 2012

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It is absolutely gorgeous outside today. I keep hearing the U2 song in my head. (It's one of our family favorites!) I just got back from walking Ginger and said to Sophia, " I can't wait for you to go outside and see how beautiful it is today!" And like a cranky old lady she replied, "Eh." Translation: Whatever, Mom. On another happy note, Sophia slept through the night AND morning meds went very well!! We go back to the hospital today for chemo and blood draws. She's not excited about it but I was thinking we should go early so that we can show Sophia some of the beautiful gardens and the 20 foot Jesus. I feel the need to pay Him a visit. We have a lot to give thanks for today. Sent from CaringBridge iPhone app

Beautiful Day Jane McCaul, May 10, 2012 It is absolutely gorgeous outside today. I keep hearing the U2 song in my head. (It's one of our family favorites!) I just got back from walking Ginger and said to Sophia, " I can't wait for you to go outside and see how beautiful it is today!" And like a cranky old lady she replied, "Eh." Translation: Whatever, Mom. On another happy note, Sophia slept through the night AND morning meds went very well!! We go back to the hospital today for chemo and blood draws. She's not excited about it but I was thinking we should go early so that we can show Sophia some of the beautiful gardens and the 20 foot Jesus. I feel the need to pay Him a visit. We have a lot to give thanks for today. Sent from CaringBridge iPhone app

Clinic Jane McCaul, May 10, 2012 Most important information first ~ we got to come home!

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Sophia did very well during her Clinic visit today. The only difficult part for her was having her PICC line dressing changed. She was fine with the blood draws and chemo.

Her blood counts are still very low but that is expected for this phase of her treatment.

She didn't have the energy to walk around today so we didn't make it to the Jesus statue.

She was in good spirits for most of the day. She Skyped with her classmates in the morning and laughed and joked with John and me a lot this morning before her treatment. In fact, we commented that we hadn't seen her so animated in a long time.

However, this afternoon she got a little depressed. She didn't want to wear her mask to play outside so she had a difficult time listening to all the`fun going on without her. She knows her friends would happily wear masks in solidarity, but she is just sad/angry that she has to in the first place. I think the clinic visit took a lot out of her. Who can blame her? There was talk of hair loss and missed vacations. Just the sort of thing to bring a kid down.

I may have the solution, though. I just suggested chocolate covered strawberries and got a smile. I'm off to the kitchen!

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Clinic Jane McCaul, May 10, 2012 Most important information first ~ we got to come home!

Sophia did very well during her Clinic visit today. The only difficult part for her was having her PICC line dressing changed. She was fine with the blood draws and chemo.

Her blood counts are still very low but that is expected for this phase of her treatment.

She didn't have the energy to walk around today so we didn't make it to the Jesus statue.

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I may have the solution, though. I just suggested chocolate covered strawberries and got a smile. I'm off to the kitchen!

Message from Sophia Jane McCaul, May 11, 2012 Hi. If you were my mom would you let me go to target? If you can call410-945-8970 please tell her to let me go. Call call call call .PPPPLLLLLEEEEEEAAAAAASSSSSSEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!! MoM! Bye Sent from CaringBridge iPhone app

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So here's the story: A little while ago Sophia asked if we could go to Target. I told her we could not go because there were too many people out right now. She promised to wear her mask. I told her I would take her during school hours on Monday when it was a little less crowded. She obviously wasn't interested in waiting. Sent from CaringBridge iPhone app

Message from Mom Jane McCaul, May 11, 2012 I am taking the phone off the hook so please don't (anyone else) try calling. Uncle Chris just called. I answered and the first thing he said was, "Take that kid to Target." So here's the story: A little while ago Sophia asked if we could go to Target. I told her we could not go because there were too many people out right now. She promised to wear her mask. I told her I would take her during school hours on Monday when it was a little less crowded. She obviously wasn't interested in waiting. Sent from CaringBridge iPhone app

Breakfast of Champions Jane McCaul, May 12, 2012 Sophia had a tough night, not much sleeping and ended up in bed with us. However, when my alarm went off this morning she had a huge smile on her face and said, "I want Easy Mac for breakfast."

Sophia is suddenly obsessed with Easy Mac and right now, in a sleep-deprived state, all I can say is . . . thank God.

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She can be a finicky eater; when she was a toddler she went through a phase in which she would only eat Amy's Organic Mac & Cheese. It was great because I knew it was a somewhat healthier option and yet it was a pain in the neck because the rest of the world was eating (and serving) Kraft which she would not eat. She finally came around to Kraft in the box but she was often the only one having it and serves 3 people (or one pregnant lady 14 years ago throughout her pregnancy but . . . whatever.) To avoid the waste, one time I suggested Easy Mac. Her response ~ a grimace.

It was given to us in a care package recently and I hesitantly suggested it. She went for it and the rest is history!

The 3:30 minute timer just beeped so I will now serve my sick child Easy Mac for breakfast. Yes, I may have reached rock bottom.

Sophia is suddenly obsessed with Easy Mac and right now, in a sleep-deprived state, all I can say is . . . thank God.

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response ~ a grimace.

It was given to us in a care package recently and I hesitantly suggested it. She went for it and the rest is history!

The 3:30 minute timer just beeped so I will now serve my sick child Easy Mac for breakfast. Yes, I may have reached rock bottom.

Spring Gala Jane McCaul, May 12, 2012

Sophia had been pretty bummed all week knowing she would be missing the fabulous Spring Gala today at St. Agnes school.

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So . . . with a little help from gifts of family and friends, Sophia came downstairs this morning to a Spring Gala of her own. We completed every item on the list (in photo) except 4. Flower Watering Competition. That one was actually a ruse to get my garden watered. She saw right through it. So instead we added Make Your Own Pizza.

We are wearing our visors, the sun catchers are drying on the ledge, cake is cooling on the island, pizza is in the oven . . . and we have one happy little girl . . . and no goldfish.

Spring Gala Jane McCaul, May 12, 2012

Sophia had been pretty bummed all week knowing she would be missing the fabulous Spring Gala today at St.

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Agnes school.

We are wearing our visors, the sun catchers are drying on the ledge, cake is cooling on the island, pizza is in the oven . . . and we have one happy little girl . . . and no goldfish.

Happy Mother's Day Jane McCaul, May 13, 2012 This Mother's Day could have been a lot different for our family ~as it may be today for many families dealing with heartbreak over the loss of a loved one. My heart goes out to them. I am at home with my wonderful husband and three amazing children. It's a wonderful Mother's Day gift.

When I was pregnant with Sophia a complete stranger said, "I know you probably get tired of hearing advice from people but I'll tell you this: Remember that babies are not ours. They are gifts we are given to take care of." This was absolutely the best advice I have ever received. I had forgotten this for awhile but was reminded of it recently.

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CaringBridge Bringing family, friends and loved ones together when it matters I honestly look at each one of my children in a new light these days . . . and I absolutely adore them.

"And now these three remain: faith, hope and love. But the greatest of these is love."(1 Corinthians 13:13)

I honestly look at each one of my children in a new light these days . . . and I absolutely adore them.

"And now these three remain: faith, hope and love. But the greatest of these is love."(1 Corinthians 13:13)

Target!

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Jane McCaul, May 14, 2012

Dear Mr. Larry,

We made it to Target today and I will gladly take you up on your offer to buy something for me. This TV will suffice.

Much love, Sophia (and her dad)

Target! Jane McCaul, May 14, 2012

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Dear Mr. Larry,

We made it to Target today and I will gladly take you up on your offer to buy something for me. This TV will suffice.

Much love, Sophia (and her dad)

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The fog comes on little cat feet. It sits looking over harbor and city on silent haunches and then moves on. Carl Sandburg

I know it will move on. I just wish it would move a little quicker. It's difficult to remain positive with all this fog. PS This is why some people don't like cats Sent from CaringBridge iPhone app

Fog Jane McCaul, May 15, 2012 I cannot get this poem out of my head. I taught it to my fourth graders years ago. It obviously resonates a lot more these days. John and I feel like we're walking through every day in a fog. With today's gloomy weather, it seems appropriate. The fog comes on little cat feet. It sits looking over harbor and city on silent haunches and then moves on. Carl Sandburg

I know it will move on. I just wish it would move a little quicker. It's difficult to remain positive with all this

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fog. PS This is why some people don't like cats Sent from CaringBridge iPhone app

And so it begins Jane McCaul, May 15, 2012

As if right on cue, Sophia's hair has begun to fall out . . . very slowly. The best part is ~ she's not freaking out. She was actually laughing about it!

The timing could not have been more perfect. Just this morning a package was delivered to our door from a wonderful family whose children attended St. Mary's School where John was a principal many years ago. Among the thoughtful items was a book entitled Kathy's Hats about a little girl who loses her hair during cancer treatment. A little while later, KK, Sophia and I were lying in bed reading the book which describes the girl's journey through the hair loss, how to embrace it, etc.

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Not long after finishing, Sophia was running her fingers through her hair and exclaimed, "AH! Look at this!" She had several pieces of hair on her fingers . . . but she had a huge smile on her face. So KK and I started laughing and clapping, "Yea! It's happening . . . This is awesome . . .Now we don't have to worry about it anymore . . ." etc.

Every so often she tries to gently pull more out. I'm not kidding myself into thinking this hair loss is going to be all smiles and laughter. But I'd say we're off to a pretty good start!

And so it begins Jane McCaul, May 15, 2012

As if right on cue, Sophia's hair has begun to fall out . . . very slowly. The best part is ~ she's not freaking out. She was actually laughing about it!

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Every so often she tries to gently pull more out. I'm not kidding myself into thinking this hair loss is going to be all smiles and laughter. But I'd say we're off to a pretty good start!

Monkey in My Chair Jane McCaul, May 16, 2012

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Sophia is participating in a program called Monkey in My Chair. It is designed to keep children undergoing cancer treatment connected with their classmates. A stuffed monkey (Bananas, in this case) sits in the child's desk and is included in class activities. Bananas went to gym class yesterday!

A Monkey in My Chair bag came home yesterday with school work, a note from a student (Sophia's friend Maggie) about Banana's day, and a joke book created by the 1st grade.

Sophia enjoys being connected with her classmates in such a fun way!

Monkey in My Chair Jane McCaul, May 16, 2012

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A Monkey in My Chair bag came home yesterday with school work, a note from a student (Sophia's friend Maggie) about Banana's day, and a joke book created by the 1st grade.

Sophia enjoys being connected with her classmates in such a fun way!

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Next week is the end of the Induction period. She will have another spinal tap and bone marrow biopsy and then we should have some indication of what her future treatment will be. I was under the impression that this first month was the most intense, treatment wise. However, our nurse believes otherwise. My head is swimming with all this new information. The one positive piece of info is that the port that will be put in (to replace the PICC line) will allow her to be able to swim this summer. I told Sophia how exciting this is and that we will no longer have to flush her line or wear a cover to bathe and shower. What I haven't mentioned is that she will need to get poked each clinic visit to be able to access the port. She hates needles. I'm going to bring that up soon, after we talk more about how much easier this port will be for her. But for now, I'll give her back this iPad so she can play Bejeweled. (I've turned her on to that and she's trying to help me with Temple Run. I am forever falling off the cliff.) Sent from CaringBridge iPhone app

Clinic Jane McCaul, May 17, 2012 We are at the clinic today for treatment. Unfortunately, we were told Sophia needs a blood transfusion so today's visit will be a little longer than we had anticipated. On the bright side, while waiting we were able to bring Sophia to see the Jesus statue. She rubbed his toe for luck and blessings. Then she had "the best pizza of her entire life." Now she is resting and we are waiting for the blood. Next week is the end of the Induction period. She will have another spinal tap and bone marrow biopsy and then we should have some indication of what her future treatment will be. I was under the impression that this first month was the most intense, treatment wise. However, our nurse believes otherwise. My head is swimming with all this new information. The one positive piece of info is that the port that will be put in (to replace the PICC line) will allow her to be able to swim this summer. I told Sophia how exciting this is and that we will no longer have to flush her line or wear a cover to bathe and shower. What I haven't mentioned is that she will need to get poked each clinic visit to be able to access the port. She hates needles. I'm going to bring that up soon, after we talk more about how much easier this port will be for her. But for now, I'll give her back this iPad so she can play Bejeweled. (I've turned her on to that and she's trying to

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help me with Temple Run. I am forever falling off the cliff.) Sent from CaringBridge iPhone app

Sleeping and more sleeping Jane McCaul, May 18, 2012 We were hoping that yesterday's blood transfusion might give Sophia a little more pep. Not so much. The big plan for today was supposed to be an outing to Vaccarro's with Daddy. But, she never seemed to have the energy for it. They chose to do crossword puzzles instead ... and more sleeping. She says her head feels funny. John says he notices that her hair looks more brittle. I guess we're getting closer ... Sent from CaringBridge Android app

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Ending on a good note Jane McCaul, May 18, 2012 Sophia had her longest nap from 4-7 today but has been in the the best mood since she woke up. She's getting ready to go back to bed soon but we have been enjoying our happy little girl! Let's hope her happy mood continues throughout the night and she's blessed with sweet dreams. Sent from CaringBridge iPhone app

GOOD morning Jane McCaul, May 19, 2012 I woke up to see a tentative Sophia peeking into our room. When I held out my arms she came running in RUNNING in with a smile on her face! She has been in great spirits all morning. There were absolutely NO tears during morning meds. She sat on the front porch while I watered the garden and is even talking about an outing for today! (We just

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have to make sure to avoid crowds.) This is really exciting. Once again we are so grateful for all the prayers. Sent from CaringBridge iPhone app

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ten minutes we were outside creating ocean scenes with Christina, Jack, Grace and Lily. I couldn't believe it! She started fading soon after, however. By the time her friend Lauren came over, she was already on my lap, out of steam. It was still great to see her spending time with friends, however short the time might be. Right now, my three babies are sitting on the couch together chatting, laughing and watching a show. Life is good. Sent from CaringBridge iPhone app

Good day sunshine Jane McCaul, May 19, 2012 It was a gorgeous day all around. We made it out! We took a trip to Five Below which, thankfully was almost empty - probably because of the beautiful weather. The best part of the outing was the ride home. A song I am unfamiliar with came on the radio and Sophia began singing. Jack and I both remarked that we were surprised that she knew it. She continued to belt it out. Then Jack joined in and the two of them singing literally brought tears to my eyes. It's amazing how I had taken the simple act of them singing together for granted. It was absolutely beautiful. After a nap, then dinner, Sophia actually suggested we go outside to color with sidewalk chalk! What?! Within ten minutes we were outside creating ocean scenes with Christina, Jack, Grace and Lily. I couldn't believe it! She started fading soon after, however. By the time her friend Lauren came over, she was already on my lap, out of steam. It was still great to see her spending time with friends, however short the time might be. Right now, my three babies are sitting on the couch together chatting, laughing and watching a show. Life is good. Sent from CaringBridge iPhone app

A view from today Jane McCaul, May 20, 2012

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This is was our view for most of today- not bad. We finished constructing and painting our bird house and bird feeder (in the tree.) Then we were able to enjoy watching the birds. We had fun trying to identify them. (Thank goodness for Mr. Peterson!) When we weren't on the porch, we were working on our 1000 piece puzzle. It is an undersea, coral scene and it has pretty much taken over our kitchen table. In fact our last few meals have been in the dining room. John, Sophia and I are slightly obsessed with it. Sophia was in good spirits for most of the day. She looks good and feels "okay." At the moment she can't really concentrate on anything but the biscuits in the oven. "Four minutes til the biscuits are ready!" Sent from CaringBridge iPhone app

A view from today Jane McCaul, May 20, 2012 This is was our view for most of today- not bad. We finished constructing and painting our bird house and bird feeder (in the tree.) Then we were able to enjoy watching the birds. We had fun trying to identify them. (Thank goodness for Mr. Peterson!) When we weren't on the porch, we were working on our 1000 piece puzzle. It is an undersea, coral scene and it has pretty much taken over our kitchen table. In fact our last few meals have been in the dining room. John, Sophia and I are slightly obsessed with it. Sophia was in good spirits for most of the day. She looks good and feels "okay." At the moment she can't really concentrate on anything but the biscuits in the oven. "Four minutes til the biscuits are ready!" Sent from CaringBridge iPhone app

12 minute record! Jane McCaul, May 21, 2012

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Sophia just completed her morning meds in 12 minutes! This is a personal best.

Prior to this morning her record was 26 minutes which we considered fabulous since there were times that it would take over an hour. One night it took over two hours.

It may be rainy and dreary outside but Sophia is excited. We are going to see the movie Chimpanzee today! Two outings in three days~ this is huge.

12 minute record! Jane McCaul, May 21, 2012 Sophia just completed her morning meds in 12 minutes! This is a personal best.

Prior to this morning her record was 26 minutes which we considered fabulous since there were times that it would take over an hour. One night it took over two hours.

It may be rainy and dreary outside but Sophia is excited. We are going to see the movie Chimpanzee today! Two outings in three days~ this is huge.

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Sophia enjoyed the movie . . . and the previews - looks like we'll be seeing Brave and Madagascar III soon. Thankfully she slept all the way home and was rested enough to visit with Ms. Smith who brought Christina and Jack home. Ms. Smith also brought Easy Mac which Sophia indulged in . . . before announcing that she really hoped we could have tacos for dinner. (We did.) After dinner, Sophia took a two hour nap. She woke up and took her meds in 35 minutes . . . while eating peanut butter on toast . . . which was followed not long after by grilled chicken. I'm pretty sure she could take Jack on in an eating competition. Sent from CaringBridge iPhone app

Hungry like the Wolf Jane McCaul, May 21, 2012 Our trip to the movies was a success! The closest showing was in Annapolis so Grampy met us there after lunch. Between the two of us, Grampy and I brought enough snacks to feed an army. . . and we still ended up buying popcorn. Sophia's appetite sure hasn't waned - one of the effects of the dexamethasone. Sophia enjoyed the movie . . . and the previews - looks like we'll be seeing Brave and Madagascar III soon. Thankfully she slept all the way home and was rested enough to visit with Ms. Smith who brought Christina and Jack home. Ms. Smith also brought Easy Mac which Sophia indulged in . . . before announcing that she really hoped we could have tacos for dinner. (We did.) After dinner, Sophia took a two hour nap. She woke up and took her meds in 35 minutes . . . while eating peanut butter on toast . . . which was followed not long after by grilled chicken. I'm pretty sure she could take Jack on in an eating competition. Sent from CaringBridge iPhone app

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Pray for Sophia bracelets Jane McCaul, May 22, 2012

Christina and Jack just came home from school wearing these bracelets that were given out at school today. We are deeply touched by this sentiment. Orange is the color for used for Leukemia awareness. I actually just found that out last night. Jack had said he wanted something to wear for leukemia awareness so we googled it. We discovered the color was orange so I attempted to make him a friendship bracelet made with orange string. What an epic fail that was. As it turns out, I'm not very good at making those. And now I don't have to! Thank you, St. Agnes! We truly appreciate all the prayers for Sophia. It is comforting to know we are not going through this alone. Thank you so much. Sent from CaringBridge iPhone app

Pray for Sophia bracelets Jane McCaul, May 22, 2012

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Another record broken! Jane McCaul, May 22, 2012 The last medication took 10 minutes! SO exciting.

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Sophia has her surgery tomorrow at 3:30 and cannot eat anything after midnight tonight. We are preparing for this surgery tomorrow by making sure she is well fed tonight. I have a pizza in the oven at this very minute.

Please keep Sophia in your prayers tomorrow (particularly around 3:30) and if you wouldn't mind throwing a few in there for John and me, we would appreciate it. We are already nervous . . .

Thanks you so much!

Another record broken! Jane McCaul, May 22, 2012 The last medication took 10 minutes! SO exciting.

Please keep Sophia in your prayers tomorrow (particularly around 3:30) and if you wouldn't mind throwing a few in there for John and me, we would appreciate it. We are already nervous . . .

Thanks you so much!

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Surgery Jane McCaul, May 23, 2012 Sophia is in the OR now. I am relieved that her sedation went so much better than the last time. I explained the last experience to the doctor and he was kind enough to begin sedation in Pre-Op so that Sophia would be nice and calm by the time we got to the OR. He also agreed to let her continue playing on the iPad so that she could fall asleep playing a game. Everyone we encountered was so sweet and kind to her. By the time we got to the OR she actually cracked a smile a few times. I stayed until she was asleep, kissed her then left feeling a huge sense of relief. The doctors and nurses repeatedly assured us that they would make sure she was well taken care of. I don't know about her, but it was much better experience for me. The surgery should take about 2 hours. She is having a spinal tap, bone marrow biopsy, removal of her PICC line and they will insert the port-a-cath into her chest. I know it's all very necessary; I just hate the thought of that little body undergoing so much. Once again I am thankful to be at this hospital. While we were still in clinic earlier today, Sophia cried in the restroom saying that she was scared. I asked her what specifically frightened her. She said, "What if they mess up?" I reminded her that this was the best hospital in the world. She said, "I know. If it weren't, I would be even more scared." I know she's going to be fine. Between the competent, caring doctors and nurses and the prayers from family and friends . . . my baby is in good hands. Sent from CaringBridge iPhone app

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feeling a huge sense of relief. The doctors and nurses repeatedly assured us that they would make sure she was well taken care of. I don't know about her, but it was much better experience for me. The surgery should take about 2 hours. She is having a spinal tap, bone marrow biopsy, removal of her PICC line and they will insert the port-a-cath into her chest. I know it's all very necessary; I just hate the thought of that little body undergoing so much. Once again I am thankful to be at this hospital. While we were still in clinic earlier today, Sophia cried in the restroom saying that she was scared. I asked her what specifically frightened her. She said, "What if they mess up?" I reminded her that this was the best hospital in the world. She said, "I know. If it weren't, I would be even more scared." I know she's going to be fine. Between the competent, caring doctors and nurses and the prayers from family and friends . . . my baby is in good hands. Sent from CaringBridge iPhone app

Home Sweet Home Jane McCaul, May 23, 2012 We arrived back home around 8pm. All is well.

Sophia was given a snack upon waking in the recovery room so she was happy. She also ate a personal pizza on the car ride home and is presently enjoying a peanut butter sandwich. This appetite is surely due to 1. fasting all day, 2. dexamethasone and 3. being part Italian. (I enjoyed a personal pizza on the ride home as well. My husband is awesome.)

The surgery seems to have gone well. There was a possibility of her needing another blood transfusion but the lab work came back OK and she didn't need one. Her port is in ~and it only freaked her out a little when she noticed it. We are expecting to hear the results of today's biopsy by next week. At that point, we will be called in to discuss her treatment plan going forward.

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I think I will be a lot less stressed when we know what to expect. I really like having a plan, a big picture. I'm not usually very good at taking things one day at a time. But under the circumstances, I am getting better at it. (This certainly wasn't part of my "big picture" a couple months ago.) I am incredibly grateful for each day we have, especially here at home, even if the next day is uncertain.

Thank you so much for your prayers and love. You have no idea how much it means to us.

Home Sweet Home Jane McCaul, May 23, 2012 We arrived back home around 8pm. All is well.

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noticed it. We are expecting to hear the results of today's biopsy by next week. At that point, we will be called in to discuss her treatment plan going forward.

Thank you so much for your prayers and love. You have no idea how much it means to us.

Clinic tomorrow Jane McCaul, May 24, 2012 a bit concerned about her coloring, particularly this morning. Her doctor called today with a related concern. It seems her liver #s from yesterday's blood draws were elevated as were her biliruben levels. This would account for the jaundice look. So we are going back to the clinic tomorrow for more blood draws. Sophia slept a LOT today. We were expecting this after yesterday's long day . . . but we were

This particularly stinks because she no longer has her PICC line and her port is too new (it would be very painful to access it this soon) so they are going to have to stick her again in the arm which is always difficult ~ it usually takes more than one try to get a good vein, it's painful and she just plain hates the whole process. We

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should have results from the tests within a few hours. If there is an issue with her liver, the next phase of treatment could be delayed.

We are told that if all goes well she should begin the next phase of treatment on June 4. We do know that on this day she will receive another lumbar puncture and chemotherapy. However, we still don't know into which arm of treatment she will be placed. So we don't know what her weekly treatment schedule will be. We are told we will definitely know that by June 4 and possibly (hopefully) before that.

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arm of treatment she will be placed. So we don't know what her weekly treatment schedule will be. We are told we will definitely know that by June 4 and possibly (hopefully) before that.

Clinic Jane McCaul, May 25, 2012

The visit to the clinic went VERY well. Sophia was nervous but Nurse Susan was a pro and after she inserted the needle Sophia said, "Is it in? It didn't even hurt." There was a collective sigh of relief.

After the blood draws, the three of us had a nice lunch in the hospital and lounged around while awaiting the results. This photo was taken at that time following this discussion:

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Me: "Sophia, when you're grown up you need to wait to find a husband that will be as good to you as Daddy is to me." Sophia: "I will. And I'll make sure he is good to kids, too, like Daddy is." John: "Oh, do you think I am good to kids?" Sophia: "Yeah, and you're the best Daddy in the world."

I snapped the photo through tears.

The tender moment didn't last long. John and Sophia had a great time spelling funny words on the Shake & Spell app. (Her face in the picture (see photos section) gives some indication of the appropriateness of one of the words.

It's GREAT to see her laugh.

The results from today's blood work came back favorable and she is treatment-free until June 4th! Hooray! This is good since she is beginning to feel pain and discomfort from Wednesday. We still don't have the results from the bone marrow but we should know next week.

Mrs. Banks and Mrs. Hiltz stopped by to deliver generous gifts from the St. Agnes community. John and I are completely overwhelmed by the love we are feeling. More on that tomorrow.

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Clinic Jane McCaul, May 25, 2012

After the blood draws, the three of us had a nice lunch in the hospital and lounged around while awaiting the results. This photo was taken at that time following this discussion:

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I snapped the photo through tears.

It's GREAT to see her laugh.

Mrs. Banks and Mrs. Hiltz stopped by to deliver generous gifts from the St. Agnes community. John and I are completely overwhelmed by the love we are feeling. More on that tomorrow.

May 26, 2012 Jane McCaul Sophia is having a tough day today. She is too tired to do much of anything and she can't walk very far without becoming exhausted. We are all trying to raise her spirits but not having much success with it.

She did seem a bit more animated when we began talking about getting an inflatable pool for the backyard

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(since she will miss out on some beach vacations.) She laughed and she said, "No slip and slide, though! That would really hurt my port!"

John and I still can't believe how generous the St. Agnes community has been. It really is heartwarming and we are so incredibly grateful for the support and love we have received. Yesterday, after Mrs. Banks and Mrs. Hiltz left, John commented that he felt a bit like George Bailey at the end of It's a Wonderful Life.

"Remember no man is a failure who has friends." ~Clarence

Thank you for being our friends. We love you.

She did seem a bit more animated when we began talking about getting an inflatable pool for the backyard (since she will miss out on some beach vacations.) She laughed and she said, "No slip and slide, though! That would really hurt my port!"

John and I still can't believe how generous the St. Agnes community has been. It really is heartwarming and we

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are so incredibly grateful for the support and love we have received. Yesterday, after Mrs. Banks and Mrs. Hiltz left, John commented that he felt a bit like George Bailey at the end of It's a Wonderful Life.

"Remember no man is a failure who has friends." ~Clarence

Thank you for being our friends. We love you.

Medication-Free! Jane McCaul, May 27, 2012 Today was the first Medication-Free day! Yea! She is off until June 4th and we are ALL psyched about that. Not much else has changed. Sophia is still very tired - but thankfully not in any pain today. She is also still exhibiting mood swings which I'm hoping will subside once everything is out of her system. She did have an interesting comment that pretty much came out of nowhere: "If you get cancer, you have literally no chance of being on Santa's naughty list. It's a lot of hard work this leukemia." Sent from CaringBridge iPhone app

Medication-Free! Jane McCaul, May 27, 2012 Today was the first Medication-Free day! Yea! She is off until June 4th and we are ALL psyched about that.

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Not much else has changed. Sophia is still very tired - but thankfully not in any pain today. She is also still exhibiting mood swings which I'm hoping will subside once everything is out of her system. She did have an interesting comment that pretty much came out of nowhere: "If you get cancer, you have literally no chance of being on Santa's naughty list. It's a lot of hard work this leukemia." Sent from CaringBridge iPhone app

She's baaaaaack . . . for now Jane McCaul, May 28, 2012

Sophia was just singing and dancing to Swagger Jagger in the kitchen. She even used some of her signature inappropriate moves. I've never been more excited to see them! Nana would be so proud! ("I love it when she shakes her @$$." Nana, June 2007)

All this comes after a really close call last night. Sophia's temperature got up to 100.3. If it had stayed there for 3 hours (or became 100.4) we would have had to go back to the hospital. But an hour later is was 100.0 then 99.8 the next hour. Whew.

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She didn't sleep much at all last night so I'm not even sure how she had the energy to dance in the kitchen. Of course, she is sacked out on the couch right now. But we'll take even a few minutes of fun!!

She's baaaaaack . . . for now Jane McCaul, May 28, 2012

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Hair today, gone tomorrow? Jane McCaul, May 29, 2012

Sophia is in great spirits today! She is having a blast pulling her hair out. It is amazing how much she can get out with a small tug. We have filled an entire ziplock bag this morning. We can't figure out where it's all coming from because she still looks like she has a full head of hair. That certainly won't be the case for long!

Hair today, gone tomorrow? Jane McCaul, May 29, 2012

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Test Results Jane McCaul, May 29, 2012 Our doctor called with the results of last Wednesday's bone marrow biopsy. At then end of the induction phase there was no sign of leukemia in the bone marrow! Thank God. Sophia will now move on to the next phase of treatment ~ consolidation. We will meet with the doctors on Thursday to discover exactly what her treatment schedule will be throughout consolidation.

Meanwhile, I thought the following information might be helpful:

Chemotherapy for acute lymphoblastic leukemia There are three phases of chemotherapy treatment for ALL: induction, consolidation and maintenance. Many patients also receive

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CaringBridge Bringing family, friends and loved ones together when it matters treatment called intrathecal chemotherapy to prevent leukemia from spreading to the central nervous system.

Induction chemotherapy Most patients with ALL are given induction chemotherapy. The goal of induction therapy is to bring the disease into remission. Remission is when the patient's blood counts return to normal and bone marrow samples show no sign of disease. Induction therapy achieves a remission in more than 95% of children and in about 75% to 89% of adults. [1, 2] Induction therapy is usually very intense and lasts about one month. After induction chemotherapy, the next step may be a transplant or consolidation chemotherapy, depending on the treatment plan.

Consolidation therapy Consolidation therapy, the second phase of chemotherapy, is also intense. It lasts about four to eight months. The goal of consolidation therapy is to reduce the number of disease cells left in the body. The drugs and doses used during consolidation therapy depend on the patient's risk factors.

Maintenance therapy If a patient stays in remission after induction and consolidation therapy, maintenance therapy begins. The goal is to destroy any disease cells that remain so that the leukemia is completely gone. Maintenance therapy is less intense than the other two phases. It may last two to three years.

Intrathecal chemotherapy During all three phases of chemotherapy treatment, many patients receive extra chemotherapy to destroy leukemia cells that may have spread to the central nervous system (the brain and spinal cord). This chemotherapy is injected right into the spinal fluid using a lumbar puncture (spinal tap) or an Omaya reservoir (a device placed under the scalp). It is called intrathecal chemotherapy. Children with ALL who have a high risk of the disease spreading to the central nervous system may receive higher or more frequent doses of intrathecal chemotherapy. Some of these children may also be given radiation therapy to the brain. However, radiation to the brain can cause problems with growth and mental development in children, so doctors try to avoid this treatment.

Chemotherapy success rates for ALL One way to measure the success of a treatment is tracking how many patients survive five years or more after treatment. For children, the overall survival rate after chemotherapy is nearly 80%. [3] This includes children with all levels of risk factors. Survival rates are much lower for children with high-risk disease, while children with low-risk disease have even higher rates of survival. For adults, the overall survival rate after chemotherapy is about 40%. [3] This includes adults with all levels of risk factors. For adults with high-risk disease, survival rates are much lower, while survival rates are higher for some adults with low-risk disease.

Relapse Induction therapy brings about a remission in most patients, but over time some patients relapse. A relapse is when the disease returns after a remission. Patients who relapse after chemotherapy may be treated with different chemotherapy drugs and/or more intense doses. Patients who relapse soon after remission or while they are receiving chemotherapy have high-risk disease. For these patients, chemotherapy is less likely to achieve a long-term remission, but a bone marrow or cord blood transplant may be effective.

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Meanwhile, I thought the following information might be helpful:

Chemotherapy for acute lymphoblastic leukemia There are three phases of chemotherapy treatment for ALL: induction, consolidation and maintenance. Many patients also receive treatment called intrathecal chemotherapy to prevent leukemia from spreading to the central nervous system.

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CaringBridge Bringing family, friends and loved ones together when it matters Children with ALL who have a high risk of the disease spreading to the central nervous system may receive higher or more frequent doses of intrathecal chemotherapy. Some of these children may also be given radiation therapy to the brain. However, radiation to the brain can cause problems with growth and mental development in children, so doctors try to avoid this treatment.

What a day! Jane McCaul, May 30, 2012

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Sophia had quite a busy day today . . . and did very well!

She attended Christina's Rose Ceremony at St. Agnes then came to lunch with us then helped make cupcakes for Christina's party this weekend. All in one day!

We were pleased when she said she wanted to attend the ceremony. When she asked if she could go to lunch "with the girls" we were surprised . . . and thrilled. Thankfully, her wonderful big sister was happy to have Sophia tag along. We were thinking she would come home after lunch and fall apart. Instead, she walked in the front door and said, "OK, let's make those cupcakes!"

She did take a nap after the cupcakes, though.

Mimi will stay with her during Christina's graduation tonight ~ and Sophia is happy about that. She has had more than enough fun for one day!

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What a day! Jane McCaul, May 30, 2012

Sophia had quite a busy day today . . . and did very well!

She attended Christina's Rose Ceremony at St. Agnes then came to lunch with us then helped make cupcakes for Christina's party this weekend. All in one day!

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front door and said, "OK, let's make those cupcakes!"

She did take a nap after the cupcakes, though.

Mimi will stay with her during Christina's graduation tonight ~ and Sophia is happy about that. She has had more than enough fun for one day!

May 31, 2012 Jane McCaul John and I met with Sophia's oncology team today. They explained this next phase of treatment and what we should expect. The very short version is that she should have an OK summer - treatment once a week for the first four weeks then once every ten days for the next eight weeks. It's after that where things get a little dicey. But I can't focus too much on that right now as I am desperately trying to take things one day at a time. I am focusing on happy thoughts like the fact that there were no leukemia cells in the marrow . . . and that our doctors think John and I are incredibly funny. I went back to work today and when I asked Sophia this evening how her day went she said, "I was a lazy bum. I'm always a lazy bum." But she's a happy, lazy bum and that's all that counts right now. Sent from CaringBridge iPhone app

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One HUGE thing Jane McCaul, June 1, 2012 So this may not be incredible news to everyone . . . but here in the McCaul house - it's HUGE.

Sophia called me at work today and I could barely understand her she was so excited. In the mail today she received an autographed picture from One Direction. She (and her older sister) are thrilled. I'm hearing things like, "They actually touched this paper" . . . Too cute.

Special thanks to Terri Sapienza for making this happen.

It's amazing how Sophia's genuine smile and happiness can melt my heart these days.

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One HUGE thing Jane McCaul, June 1, 2012 So this may not be incredible news to everyone . . . but here in the McCaul house - it's HUGE.

Special thanks to Terri Sapienza for making this happen.

It's amazing how Sophia's genuine smile and happiness can melt my heart these days.

Another great day Jane McCaul, June 2, 2012

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Sophia made it through another busy day . . . and had fun! Today was Christina's graduation party. We had family in from CA, NY, PA and NJ in addition to our MD families. It was a good sized crowd and I was apprehensive. But Sophia was great. At one point, I looked across the backyard and saw her blowing bubbles and laughing with all the other kids and it just looked so . . . normal. I love normal. Later in the afternoon, while the party was still in full swing, I found her lying in her bed by herself playing a video game. I asked if she felt OK and she said, "Yeah, I just need a little rest. We still have Jack's game tonight." I wish I had half as much common sense as this kid. She made it through the entire baseball game (she lasted 41 minutes last game) and was still happy when we got home. She sat down on the couch to watch TV and said to John, "I can't believe I made it through this whole day. I'm probably going to fall asleep right here." And that she did.

Another great day Jane McCaul, June 2, 2012 Sophia made it through another busy day . . . and had fun! Today was Christina's graduation party. We had family in from CA, NY, PA and NJ in addition to our MD families. It was a good sized crowd and I was apprehensive. But Sophia was great. At one point, I looked across the backyard and saw her blowing bubbles and laughing with all the other kids and it just looked so . . . normal. I love normal. Later in the afternoon, while the party was still in full swing, I found her lying in her bed by herself playing a video game. I asked if she felt OK and she said, "Yeah, I just need a little rest. We still have Jack's game tonight." I wish I had half as much common sense as this kid. She made it through the entire baseball game (she lasted 41 minutes last game) and was still happy when we got home. She sat down on the couch to watch TV and said to John, "I can't believe I made it through this whole day. I'm probably going to fall asleep right here." And that she did.

Pool fun with cousins Jane McCaul, June 3, 2012

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We met up with our out-of-town family for breakfast at their hotel this morning. After breakfast we all went for a swim in the pool. Sophia had an absolute blast.

All the weekend festivities have been a wonderful distraction for Sophia. She knows she will go in for treatment tomorrow and that it will be the first time they access her port. But she hasn't had a lot of time to dwell on it. She even said she wasn't worried about the spinal tap because: "I'll be asleep. I don't even know what they're doing to me. I wake up and it's over."

She is resting right now in preparation for another evening out. She's excited because we're going to Amicci's for dinner. And whenever there's an Amicci's trip ~ it's almost always followed by cookies at Vaccaro's.

Come to think of it, I'm a little excited myself.

Pool fun with cousins Jane McCaul, June 3, 2012 We met up with our out-of-town family for breakfast at their hotel this morning. After breakfast we all went for a swim in the pool. Sophia had an absolute blast.

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Come to think of it, I'm a little excited myself.

June 4, 2012 Jane McCaul Sophia's procedure (all of them) went very well today. She was incredibly nervous this morning but our fabulous nurse Susan was able to access the port in the clinic sans tears!

The day was a little longer than expected because we had to go back to the clinic for another dose of chemo after she recovered from the spinal tap. But she was a trooper once again and had the PACU (recovery) nurses laughing their heads off. They call her "Sassy Sophia." If the shoe fits . . .

Back in the clinic, we ran into one of her favorite Inpatient nurses. Nurse Catharine knew of Sophia's love of One Direction so she was very excited to tell Catharine about the autographed picture! Then our doctor who was listening to the conversation googled the band so she could see just who this Harry Styles person was. (Our doctor decided she liked Zayn better, however.)

All in all, it was a good day ~ which is great because we'll be back next Monday for the same thing.

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All in all, it was a good day ~ which is great because we'll be back next Monday for the same thing.

Sophia's thoughts Jane McCaul, June 5, 2012

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CaringBridge Bringing family, friends and loved ones together when it matters I asked Sophia if there was anything she wanted to share in today's journal entry. Her response: “Bless the monkeys of the jungle.”

I asked her to clarify her statement and she repeated it for me. I just reread the side effects of her new medication and I’m not seeing anything that would explain that response. I have no idea . . . So . . . we would appreciate your continued prayers for Sophia . . . and evidently . . . for the monkeys of the jungle.

Sophia's thoughts Jane McCaul, June 5, 2012 I asked Sophia if there was anything she wanted to share in today's journal entry. Her response: “Bless the monkeys of the jungle.”

June 6, 2012 Jane McCaul

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I got another one direction adigrath signed by all of them. I say bless the monkeys of one direction. Ibless them to I mean monkeys are crazy. like this bye - bye

PLEASE write on the guestbook if you SOPHIA the cute

June 6, 2012 Jane McCaul I got another one direction adigrath signed by all of them. I say bless the monkeys of one direction. Ibless them to I mean monkeys are crazy. like this bye - bye

PLEASE write on the guestbook if you SOPHIA the cute

The best medicine Jane McCaul, June 7, 2012

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This photo was taken Monday by my brother-in-law, Michael, right before Sophia went in for surgery. Her doctor had already administered some "happy meds" so Sophia was in a good place. I just love her laughter. She is doing so much these days (going on outings, playing outside) and we're seeing a lot of smiles. I am definitely grateful for this and trying to live in the moment. But honestly I can't shake the dreadful feeling of what's to come. Her treatment is going to get intense and it breaks my heart to think about her enduring it. However, this is one tough cookie. We will probably all draw our strength from her. Until then, we'll just keep laughing. Sent from CaringBridge iPhone app

The best medicine Jane McCaul, June 7, 2012

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finally found at the last minute in White Marsh after days of searching! Wednesday night she said, "Mommy, I wish I had a poodle skirt like you. I want to look just like you." Gulp. Thus began the frantic search.) She was in great spirits for most of the night. She had her typical "7:00 Insanity Hour" then crashed, had a little bit of a hard time then fell asleep on my lap on the couch. She was trying so hard to stay awake for the Make Your Own Sundaes but it wasn't in the cards. Only when John was carrying her to the car did she say, "I missed the ice cream, didn't I?" We covered that today, though, and took her to Sweet Frog with her good friend Gracie. The girls sat giggling with their frozen yogurt while John and I sat at the next table over on our own little date. When we got home, Grace was sweet enough to postpone going to the pool so she could play in the sprinkler with Sophia. All was going well for about 5-10 minutes and I even went to get the camera to document the fun. However, I never even got a shot because while I was adjusting the sprinkler, Sophia got stung by a bee on her toe. Fun over. A few hours later, she has recovered. She's pretty exhausted, though, and she's not the only one. I see a lovely, cozy nap in our future . . . Sent from CaringBridge iPhone app

Never a dull moment Jane McCaul, June 9, 2012 We never quite know what to expect with each new day and one thing's for sure . . . . I have no concept of the word boring. We celebrated my father's 70th birthday party last night and it was fabulous. A few weeks ago I honestly didn't think Sophia would be able to attend. But she was there and looking adorable in a little poodle skirt (that I finally found at the last minute in White Marsh after days of searching! Wednesday night she said, "Mommy, I wish I had a poodle skirt like you. I want to look just like you." Gulp. Thus began the frantic search.) She was in great spirits for most of the night. She had her typical "7:00 Insanity Hour" then crashed, had a little bit of a hard time then fell asleep on my lap on the couch. She was trying so hard to stay awake for the Make Your Own Sundaes but it wasn't in the cards. Only when John was carrying her to the car did she say, "I missed the ice cream, didn't I?"

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We covered that today, though, and took her to Sweet Frog with her good friend Gracie. The girls sat giggling with their frozen yogurt while John and I sat at the next table over on our own little date. When we got home, Grace was sweet enough to postpone going to the pool so she could play in the sprinkler with Sophia. All was going well for about 5-10 minutes and I even went to get the camera to document the fun. However, I never even got a shot because while I was adjusting the sprinkler, Sophia got stung by a bee on her toe. Fun over. A few hours later, she has recovered. She's pretty exhausted, though, and she's not the only one. I see a lovely, cozy nap in our future . . . Sent from CaringBridge iPhone app

Recovery Jane McCaul, June 11, 2012 Sophia is in the PACU right now, still sleeping. Her doctors said everything went well and that we could probably jostle her awake if we wanted. But earlier this morning, while we were still in the clinic she said she was really tired and looking forward to a nice nap. So I'm going to let this sleeping baby lie. When she does awaken, we will head back up to the clinic to meet with her doctor. I'm very interested to see how her numbers from this morning's blood draws look. The daily chemo she takes at home is supposed to lower the white blood count somewhat so we'll see. Hopefully, all is well and she can continue all the fun things she has been doing lately. We saw Madagascar 3 yesterday and there is more fun to be had!

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how her numbers from this morning's blood draws look. The daily chemo she takes at home is supposed to lower the white blood count somewhat so we'll see. Hopefully, all is well and she can continue all the fun things she has been doing lately. We saw Madagascar 3 yesterday and there is more fun to be had!

Quick Update Jane McCaul, June 11, 2012 The blood counts were good! So if she's feeling up to it, we will be heading to Target shortly to buy a little pool for the backyard. :)

Happiness Jane McCaul, June 14, 2012 Sophia is doing very well! She has lots of energy and despite missing her siblings (who are at the beach) she is in good spirits. Her voice has a bit of a warble to it but she has not been falling down as much so we're incredibly thankful! She has a lot to be excited about- Sophia will spend the day with Gracie today will be able to go to the beach for the weekend on Saturday! Two fabulous things to look forward to. Here's to a great day! Sent from CaringBridge iPhone app

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Boundless energy Jane McCaul, June 15, 2012 If it weren't for her hair falling out, I honestly think I would forget that this child had cancer. Sophia has more energy than John and I put together right now. We have no idea where it's coming from but just watching her is exhausting. Her laughter is what keeps us going. We have told her its going to be an early night tonight so that we can hit the road at the crack of dawn. But it's mostly because I know I can't make it past 8pm. I'm pretty sure I'll be the first one asleep tonight. Sent from CaringBridge iPhone app

Boundless energy Jane McCaul, June 15, 2012 If it weren't for her hair falling out, I honestly think I would forget that this child had cancer.

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Sophia has more energy than John and I put together right now. We have no idea where it's coming from but just watching her is exhausting. Her laughter is what keeps us going. We have told her its going to be an early night tonight so that we can hit the road at the crack of dawn. But it's mostly because I know I can't make it past 8pm. I'm pretty sure I'll be the first one asleep tonight. Sent from CaringBridge iPhone app

Beach weekend Jane McCaul, June 18, 2012

Sophia had a great weekend at the beach. She was so excited to be reunited with Christina and Jack and she got the bonus of playing with her cousins, as well. She went in the ocean, played in the sand and swam in both the indoor and outdoor pools. We went to the ice show Saturday night and Jack even caught a beach ball from the show for Sophia which she then had autographed by all the performers. It was a busy, fun weekend! And we'll do it all again next weekend! Actually, if all goes well today and throughout this week, Sophia will be able to spend the whole week at the beach next week. Her bloodwork results were OK - good enough for them to let us go away for the week, but low enough that we need to be careful. She probably won't be able to swim in the indoor pool (too crowded) which she is going to

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be upset about. She'll still have the outdoor pool and beach, though. We anticipated a drop in numbers so we're not really surprised. I am thankful that she is even allowed to go. I said the same to my dad as we were sitting on the beach Saturday, "I can't believe we're here. And she's digging in the sand. And she's running down to the water. This is crazy." We're in the PACU and she's sleeping right now. John has gone to get her pizza from the food court. There's nothing she likes more upon waking than Mom, Dad and food . . . not necessarily in that order. Sent from CaringBridge iPhone app

Beach weekend Jane McCaul, June 18, 2012

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Her bloodwork results were OK - good enough for them to let us go away for the week, but low enough that we need to be careful. She probably won't be able to swim in the indoor pool (too crowded) which she is going to be upset about. She'll still have the outdoor pool and beach, though. We anticipated a drop in numbers so we're not really surprised. I am thankful that she is even allowed to go. I said the same to my dad as we were sitting on the beach Saturday, "I can't believe we're here. And she's digging in the sand. And she's running down to the water. This is crazy." We're in the PACU and she's sleeping right now. John has gone to get her pizza from the food court. There's nothing she likes more upon waking than Mom, Dad and food . . . not necessarily in that order. Sent from CaringBridge iPhone app

Working Girl Jane McCaul, June 22, 2012 Sophia is at work with me this morning! She was smirking at dinner last night because John and I were "fighting" over who would get to take her to work. I said, "You ALWAYS get her." So we compromised ~ I get her in the morning and John will come pick her up after lunch.

It is nice because she just met a guest who is here receiving radiation treatment for her cancer. This woman is amazing~ has it all together, fabulous personality and looks like the picture of health. It was great to have Sophia talk with her.

Sophia is presently sitting at my conference table working on her iPad. Usually she takes one of my business cards, crosses off my name and writes hers. Thankfully she has the iPad because when she doesn't, she goes into the business center and puts a Post-it over the Business Center sign that reads "Office of Sophia McCaul" while she plays on the computer. (But we have too many guests here for those shenanigans. She's staying in here with me.)

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We leave for the beach tomorrow morning and she plans to organize beach toys when she gets home today. I can't believe she is going to be able to stay all week. I pray that her health and happiness continue at least throughout the summer.

I'm so excited for her!

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I'm so excited for her!

Message from Sophia Jane McCaul, June 22, 2012 Hi I changed my background because it is SUMMER!!! And I LOVE butterflies.

BLESS THE MONKEYS OF THE JUNGLE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

FROM Sophia the cutest in the family

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Message from Sophia Jane McCaul, June 22, 2012 Hi I changed my background because it is SUMMER!!! And I LOVE butterflies.

BLESS THE MONKEYS OF THE JUNGLE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

FROM Sophia the cutest in the family

Making Memories Jane McCaul, June 25, 2012

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Sophia is having a great time at the beach! All three kids slept out on the beach-side balcony Saturday night and had a blast. As I was tucking them in, listening to the sound of the waves, I was wishing I had opted for this sleeping arrangement. A little while later, we could still hear their giggling but none of us had the heart to tell them to be quiet and go to sleep. It was too beautiful.

Sophia is really enjoying all her pool time (even more so than the beach!) Every time I see her swimming under water I am so grateful that she was given a port. If she still had her PICC line, she wouldn't be able to do any of this!

For two nights in a row, we have gone down to the beach in the evening to fly her kite. It's my favorite part of the day. Maybe because the first night it was just the two of us~ not knowing what we were doing . . . but somehow getting that kite to soar high into the sky. Pure joy. We could hear Nanny cheering for us from the balcony. Last night, the five of us each took turns flying the kite. With John there, the kite soared even higher. High enough that both Sophia and I got nervous and asked him to reel it in. I never realized how awesome kite flying can be!

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with lots of memories." He completely agrees (I think. Otherwise, he's really good about letting me get my way.) I'm so thankful for nights on the balcony and evening kite-flying ~ because these are the kind of memories that I want the three kids remembering when they recall the summer of 2012.

Making Memories Jane McCaul, June 25, 2012

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As the kids have grown, each time I suggested a new activity (camping, picnics in the park, etc.) that John might not have initially been thrilled about I would say, "It's all about making memories. We have to leave them with lots of memories." He completely agrees (I think. Otherwise, he's really good about letting me get my way.) I'm so thankful for nights on the balcony and evening kite-flying ~ because these are the kind of memories that I want the three kids remembering when they recall the summer of 2012.

Hmmmm? Jane McCaul, June 30, 2012 Sophia received her second anonymous monkey card in the mail. This one, like the first, had a monkey joke written inside. There was also a paper card with a monkey to color. Sophia said, "If we knew who was sending these, we could use this as a Thank You card." But for now we'll just have to use this site to say: Thank you, anonymous person! :)

We are analyzing the handwriting trying to figure out whom they are from. Sophia has one idea, I have another.

Hmmmm ...

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good) she did not stop enthusiastically talking the entire trip. John and I were laughing.

Last night Christina showed me a video she took yesterday of Sophia singing and dancing to a song. I SO wish I could upload videos onto this site. It was hilarious ... possibly a tad inappropriate ... but hilarious nonetheless.

I am so grateful to have my little, crazy, spunky girl back.

Sent from CaringBridge Android app

We are analyzing the handwriting trying to figure out whom they are from. Sophia has one idea, I have another.

Hmmmm ...

On an entirely different note, Sophia had a fantastic week at the beach! As she, John and I were driving to Dunkin Donuts this morning (no power in our house from last night's crazy storm. No power: no coffee: no good) she did not stop enthusiastically talking the entire trip. John and I were laughing.

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I am so grateful to have my little, crazy, spunky girl back.

Sent from CaringBridge Android app

Another busy day Jane McCaul, July 2, 2012 Sophiaâ&#x20AC;&#x2122;s clinic visit went well today. Some of her numbers are even up so we are relieved. She was given two different kinds of chemo through her port. One of the chemo drugs can make her nauseous so she was also given another medicine to combat the nausea. We are supposed to administer this one a couple times a day. Sheâ&#x20AC;&#x2122;s not particularly fond of this other med (it took a lot of tears and over a half hour to take it this evening) so we'll see how it goes . . . This afternoon Sophia, Christina and I attended a Cool Kids Campaign workshop. Sophia was able to paint and decorate a birdhouse for a project entitled Houses of Hope. She even made a cozy bed and placed it inside the house for the birds. The birdhouses will be displayed at local area malls ~so keep your eyes peeled for a pink and purple striped birdhouse with lots of glitter, sparkles and feathers!

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4th of July fun in the sun Jane McCaul, July 5, 2012

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You might begin to wonder whether something may be wrong with you when your leukemia-stricken child has a TON more energy than you do.

Sophia had a fabulous day yesterday. She played outside, in her pool almost all day. Then we went to our annual awesome 4th of July party where she continued to keep going . . . and going! She played on the inflatable water slide for hours! Right before the fireworks, she finally began to slow down. We watched the display from inside the car (the sound still scares her) while her siblings and friends sat on the roof. Midway through the fireworks, she fell asleep.

I'm hoping she'll have plenty more days of this kind of fun in the sun before Delayed Intensification begins. Right now, I'll use Ben Franklin's words as my mantra: (it's only fitting to quote him on this particular holiday)

"Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight."

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4th of July fun in the sun Jane McCaul, July 5, 2012

You might begin to wonder whether something may be wrong with you when your leukemia-stricken child has a TON more energy than you do.

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"Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight."

July 8, 2012 Jane McCaul Little "heart bursts" ~that's the only way I can describe the feeling. I was watching Sophia in the ocean with her brother, sister and cousins and couldn't help but feel my heart flutter. The kids were in the waves on their boards and Jack was so protective of Sophia, constantly watching and helping her. It was adorable. Then Christina took Sophia out, holding her the whole time. It was just so sweet. Later, when Sophia crashed in the shore break and yelled, "My port!" (when she fell, her chest hit the sand) everyone came running to make sure she was OK. I put a towel around her, walked her back up to our chairs and suggested she sit down to take a break. She shook the towel off and said, "No way, I'm going back in."

The sad part came when it was time for John, Sophia and me to leave. Sophia was clinging to her brother and sister. We finally got her out of there and into the car. Then for the first 15 minutes of the ride she would bring up Christina's picture on her itouch and cry . . . then she'd play a game and cry, "This is Jack's favorite game . . ." At that point, John and I were trying not to laugh; it was quite dramatic. But soon enough she settled into the ride and eventually fell asleep.

Friday night we will be back at the beach. It can't come soon enough.

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Friday night we will be back at the beach. It can't come soon enough.

More ups and downs Jane McCaul, July 10, 2012

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Sophia had a great day today. She and Nanny went to the mall to spend her Build-a-Bear gift card that was given to her by the Anonymous Monkey Sender. Then she came home to find another package from the Anonymous Monkey Sender! Sophia and Grace enthusiastically went to work trying to figure out the identity of the sender. (Speaking of which, AMS, I know who you are! Your first clue: "Dance" had us confused. Your second clue: "fifth card" confirmed my earliest suspicions and today's clue: "blue dolphins" sealed the deal! So thank you, thank you for the cards, coloring pages, gift card, book marks and books. We have had a blast with your fun monkey game!) After dinner, John and I took Sophia to Barnes & Noble to purchase a book she had her eye on and to buy birthday presents for the cousins. We also visited the new Wegmans in Columbia. As we were walking through the parking lot we saw a beautiful rainbow in the sky. (photo) So ... all was well until Sophia became tired. As I was tucking her in, she began to cry about . . . everything. More "Why me?" and all the other questions I can't answer. I tried all the usual suggestions: think about how strong you will be, the hard part will be over by Christmas, etc. . . . to no avail. She continued to cry. The worst was when she said, "But Christina and Jack can laugh." I said, "What do mean? They don't laugh at you?" She said, "No, but they're happy on the inside and the outside. I am sad on the inside and happy on the outside." I wanted to say: you and me both, baby. What I didn't share with her was that I'm not so sure her siblings aren't feeling the same way. Recently, Jack was having a particularly bad day, getting in trouble with us for several reasons. When we finally sat down to talk, one thing he said really hit home. He said, "Things are just so different now. Everything is either Before this happened or After this happened." He's right. John and I had joked about saying our time now is BC (before cancer) and AD (after diagnosis) but it's true . . . and now even our happy memories before all of this have been somewhat altered. That part makes me sad.

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But I will try to take the advise of a very dear friend who keeps reminding me of Eckhart Tolle's words of wisdom. "Realize deeply that the present moment is all you have. Make the now the primary focus of your life." Sent from CaringBridge iPhone app

More ups and downs Jane McCaul, July 10, 2012

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So ... all was well until Sophia became tired. As I was tucking her in, she began to cry about . . . everything. More "Why me?" and all the other questions I can't answer. I tried all the usual suggestions: think about how strong you will be, the hard part will be over by Christmas, etc. . . . to no avail. She continued to cry. The worst was when she said, "But Christina and Jack can laugh." I said, "What do mean? They don't laugh at you?" She said, "No, but they're happy on the inside and the outside. I am sad on the inside and happy on the outside." I wanted to say: you and me both, baby. What I didn't share with her was that I'm not so sure her siblings aren't feeling the same way. Recently, Jack was having a particularly bad day, getting in trouble with us for several reasons. When we finally sat down to talk, one thing he said really hit home. He said, "Things are just so different now. Everything is either Before this happened or After this happened." He's right. John and I had joked about saying our time now is BC (before cancer) and AD (after diagnosis) but it's true . . . and now even our happy memories before all of this have been somewhat altered. That part makes me sad. But I will try to take the advise of a very dear friend who keeps reminding me of Eckhart Tolle's words of wisdom. "Realize deeply that the present moment is all you have. Make the now the primary focus of your life." Sent from CaringBridge iPhone app

This just in! Jane McCaul, July 11, 2012 I heard from the Anonymous Monkey Sender. She wants us to know that she did not send the Build-a-Bear gift cards. The envelope was opened before I got home and there was no signature on the card so we just assumed it was another card from the AMS. I apologize if I missed the name! If there really was no name and the sender wishes to remain anonymous . . . well, then the plot thickens. Sent from CaringBridge iPhone app

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Sophia's new bear Jane McCaul, July 12, 2012

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mention that she does already have a name. However, if she likes your name better . . . ) We are presently awaiting the results of today's blood draws before the chemo can be administered. We'll keep you posted. Sent from CaringBridge iPhone app

Sophia's new bear Jane McCaul, July 12, 2012

Sophia's new bear came with us to Clinic today. It is a Twinkle Toes Bear whose ears light up when you press her paw. She's receiving lots of compliments from the nurses and doctors. She wants to take Ms. Smith's advise and accept suggestions for her new bear's name. So feel free to send in your suggestion! (In fairness, I should mention that she does already have a name. However, if she likes your name better . . . ) We are presently awaiting the results of today's blood draws before the chemo can be administered. We'll keep you posted. Sent from CaringBridge iPhone app

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Quick update Jane McCaul, July 12, 2012

The clinic visit went well today. Sophia's numbers look very good and even better~ she's feeling great. I am certain that her continued good health is directly related to the number of prayers being said for her. Please continue to pray for our little angel~ our little, spunky, crazy angel. Sent from CaringBridge iPhone app

Quick update Jane McCaul, July 12, 2012

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Message from Sophia Jane McCaul, July 16, 2012 I went surfing and paddle boarding. it was fun. So I picked a name and it is... You have to wait till I write next time. You can try to guess the birthday of my bear.

BLESS THE MONKEYS OF THE JUNGLE.

SOPHIA THE CUTEST IN THE FAMILY Sent from CaringBridge iPhone app

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BLESS THE MONKEYS OF THE JUNGLE.

SOPHIA THE CUTEST IN THE FAMILY Sent from CaringBridge iPhone app

Sophia the cutie Jane McCaul, July 22, 2012 Hi I'm Sophia now for the birthday 7/10/2012 and now the name it is .. . Twinkle! Have a Happy Summer everyone. From, Sophia Sent from CaringBridge iPhone app

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Mark your calendars ~ and go shopping! Jane McCaul, July 23, 2012

Sophia's bird house that she created during the Houses of Hope project will be on display at The Mall

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in Columbia beginning August 1st. Stop by to see it! Each bird house includes a bio about the artist as well as the artist's picture. Sophia answered all the questions herself and chose the picture that she felt best portrayed her (of course it's one of her playing in the ocean.)

I'm not sure how long it will be there but I know it will be at least through the 9th (sadly we will miss the reception there on the 9th because we will be in NH.)

If you can ~ go check it out!

Mark your calendars ~ and go shopping! Jane McCaul, July 23, 2012

Sophia's bird house that she created during the Houses of Hope project will be on display at The Mall in Columbia beginning August 1st. Stop by to see it! Each bird house includes a bio about the artist as well as the artist's picture. Sophia answered all the questions herself and chose the picture that she felt best portrayed her (of course it's one of her playing in the ocean.)

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I'm not sure how long it will be there but I know it will be at least through the 9th (sadly we will miss the reception there on the 9th because we will be in NH.)

If you can ~ go check it out!

Good news Jane McCaul, July 25, 2012 Sophia's clinic visit went well yesterday. Her liver chemistry has improved which made our doctors very happy. Her ANC (absolute neutrophil count) dropped to 1100 ~ from 2250 last visit. We are told that this is normal because of the chemo but anything under 1500 makes me a little nervous. Granted, she was at 190 when they let us take her home in May but she was also required to wear a mask. That wasn't a lot of fun. We are back to needing the mask in large crowds and being vigilant about sanitizing. The best news of all is that they are allowing us to push back the start of Delayed Intensification! I had been asking for weeks if we could push it back since it coincides with the first day of school. Two different nurses didn't like the idea of moving the day. When I would stress the importance of Sophia being present for the first week of school (since she will most likely miss much of the following 8 weeks,) they would remind me that we couldn't predict anything anymore and we needed to "go with the flow." Obviously, I didn't like those responses so I pleaded my case with our doctor again yesterday. She spoke with another doctor and they agreed to let us move the start of DI so that Sophia could attend the first week of school. Victory! I'm not sure if the doctors informed the nurses of this change but I imagine it will be fine since they are used to going with the flow. (Snarky, I know. I do love most of our nurses . . . just not that response.) Tonight Jack and I attended the Leukemia and Lymphoma Society's kick off for the Light the Night Walk in October. It is designed to be an enthusiastic, motivating party to get participants psyched about raising money for LLS. Speakers described how their families have been directly touched by LLS and the work they do. I couldn't bring myself to feel enthusiastic, though. I love the work they do and feel extremely grateful for the research that has been discovered as a result of funding from the LLS. I suppose it's still too raw for me. I did enjoy spending time with Jack (who by the way, is pumped to raise money for this cause!) We had a great time at the Orioles game afterwards.

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I was shocked to discover that the 2012 LLS Hero is a boy who was right across the hall from Sophia in the hospital. His mother gave his story and spoke about how his life was saved because of a new drug that was being tested in the clinical trial in which he was taking part. It was wonderful news but I never like hearing stories about children who are in remission then relapse. I feel such deep sorrow for those families. I have faith that Sophia will get through it but I wonder . . . how long is she going to have to endure all of this? It's so much for her right now as it is. If there's a relapse, what other crazy coping mechanisms will we see? (The sassiness reached an all-time high at the clinic yesterday. We had to have a chat.) I'm remaining hopeful that she will finish this treatment and be fine. If not, we will just pray for new strength. Sent from CaringBridge iPhone app

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at the Orioles game afterwards. I was shocked to discover that the 2012 LLS Hero is a boy who was right across the hall from Sophia in the hospital. His mother gave his story and spoke about how his life was saved because of a new drug that was being tested in the clinical trial in which he was taking part. It was wonderful news but I never like hearing stories about children who are in remission then relapse. I feel such deep sorrow for those families. I have faith that Sophia will get through it but I wonder . . . how long is she going to have to endure all of this? It's so much for her right now as it is. If there's a relapse, what other crazy coping mechanisms will we see? (The sassiness reached an all-time high at the clinic yesterday. We had to have a chat.) I'm remaining hopeful that she will finish this treatment and be fine. If not, we will just pray for new strength. Sent from CaringBridge iPhone app

Faith Jane McCaul, July 30, 2012 When we returned home from the hospital in early May, Sophia was given a Pillow Pet from the organization Touching Lives with Comfort. I was given a necklace from the same organization that I wear all the time. The necklace has a big heart with the word Faith and its definition written inside. Part of the reason I don’t take it off is so that I will constantly be reminded that God is watching over us. At this point, I don’t need much reminding; I am confident that we are being blessed daily. The blessings come in the form of loving, supportive family and friends. In the beginning I was blown away (and almost embarrassed) by all the support and love. Now, it is just plain comforting. Sophia continues to receive cards, gifts and invitations for fun times ~outings, swimming, soccer matches!~ from loving family and friends. (So do Christina & Jack!) I know this is why she remains positive and upbeat and full of energy. We are SO grateful for this. We have been blessed as a family, as well. Sophia’s cancer has made us closer. We all seem to want to be near one another.

In our

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CaringBridge Bringing family, friends and loved ones together when it matters week in NH with them!) Then there’s my rock. When I thanked John yesterday for spending yet another weekend cleaning the house (pretty much by himself!) he pulled me close and said, “It’s all part of my new pledge. I am going to do everything I possibly can to make this time easier for you. I promise you that.” Then he quoted one of our songs, “I can’t do everything but I’d do anything for you.” I don’t think I could ask for any more blessings. I truly believe God is with us. However in 2 ½ years, when all of this is hopefully over . . . I am fairly certain I will decide we need a housekeeper. Birdhouse Update: The Houses of Hope project that I previously mentioned will be displayed at local malls from August 1-19th. If you don’t get a chance to visit Sophia’s bird house in person at the Mall in Columbia, you can see it here: http://www.coolkidscampaign.org/houses-of-hope/artists/sophia-m/

Sophia’s biography was written by herself. However, I realize I should have consulted her when filling out the initial information. I inadvertently left off NUMEROUS procedures that she has endured. Oops. (Sorry, honey!)

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In our

home, if someone is missing from the room, it doesn't go unnoticed. When someone is not in the house, they are truly missed. It also makes me cherish my own parents and siblings. (I can’t wait to spend next week in NH with them!) Then there’s my rock. When I thanked John yesterday for spending yet another weekend cleaning the house (pretty much by himself!) he pulled me close and said, “It’s all part of my new pledge. I am going to do everything I possibly can to make this time easier for you. I promise you that.” Then he quoted one of our songs, “I can’t do everything but I’d do anything for you.” I don’t think I could ask for any more blessings. I truly believe God is with us. However in 2 ½ years, when all of this is hopefully over . . . I am fairly certain I will decide we need a housekeeper. Birdhouse Update: The Houses of Hope project that I previously mentioned will be displayed at local malls from August 1-19th. If you don’t get a chance to visit Sophia’s bird house in person at the Mall in Columbia, you can see it here: http://www.coolkidscampaign.org/houses-of-hope/artists/sophia-m/

Great news Jane McCaul, August 3, 2012 We are at Hopkins right now waiting to go into pre-op for Sophia's spinal tap.

In the clinic this morning we received fantastic news regarding Sophia's blood counts. Her ANC # jumped 2000 points. She is back within a safe number. Just in time! We leave tonight to begin our New Hampshire vacation. I'm saying many prayers of gratitude: Thank you, thank you, thank you, God!

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Please keep Sophia in your prayers while she undergoes this surgery at 10:30. Thanks so much!

Sent from CaringBridge Android app

Great news Jane McCaul, August 3, 2012 We are at Hopkins right now waiting to go into pre-op for Sophia's spinal tap.

Please keep Sophia in your prayers while she undergoes this surgery at 10:30. Thanks so much!

Sent from CaringBridge Android app

Update Jane McCaul, August 3, 2012

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All went well today and Sophia is back home resting before the trip.

This photo was taken in the OR before Sophia went under. She wanted me to show everyone how cool it was that there were three TVs in the room all showing her lying on the table. Everywhere she looked, she saw herself and thought it was super-cool.

Thanks again for your prayers!

Update Jane McCaul, August 3, 2012

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All went well today and Sophia is back home resting before the trip.

Thanks again for your prayers!

Vacation! Jane McCaul, August 9, 2012

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Sophia is doing quite well and having a blast here in New Hampshire! She is like a fish in the water. It is so hard to try to get her off the beach and out of the sun from time to time. As we watched her the other day, running up the beach from the water, carrying her board, John said, "Um . . . does she even know she has leukemia?" She knows it for sure. But this is where that strong will becomes such an asset. God bless our little warrior.

Vacation! Jane McCaul, August 9, 2012

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Clinic . . . and clinic again Jane McCaul, August 13, 2012

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We went in for Sophia's clinic visit this afternoon. She had her blood drawn then went down for an EKG. Her heart looked fabulous (quite literally~ that little thing is adorable on screen!) John and Sophia kept busy while we waited for the lab results. We needed the results before we could proceed with the chemo. Unfortunately, after a few hours we were told that there was a problem in the lab and we would need to redraw the blood and come back tomorrow for the chemo. We couldn't get upset, though because our nurse felt terrible about it. So we will head back first thing in the morning and should be finished by 9am (hopefully.) Oh~ more Anonymous Monkey Sender news! We arrived home from our vacation this weekend to find cards for Sophia. One of the cards blew our minds! The cover had five monkeys each labeled with one of our names. "Five little monkeys traveling in a minivan . . ." The inside of the card showed the picture of Hampton Beach (that I had posted on Facebook when we arrived there last week.) The sender hoped we had a great vacation. We certain did! And the sadness we felt leaving NH was definitely lifted upon receiving the card. Nice work, AMS! Thank you! Sent from CaringBridge iPhone app

Clinic . . . and clinic again Jane McCaul, August 13, 2012

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Seabrook Beach, NH Jane McCaul, August 15, 2012

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John just showed me this photo yesterday so I had to post it. It's from our vacation and I just love it. It says everything.

Seabrook Beach, NH Jane McCaul, August 15, 2012

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John just showed me this photo yesterday so I had to post it. It's from our vacation and I just love it. It says everything.

Birdhouse watching Jane McCaul, August 18, 2012

We found Sophia's birdhouse at the mall yesterday! It is right in front of Williams-Sonoma. (We were told it was originally in the food court so apologies to anyone who looked there!) It will be there until tomorrow so we made it in the nick of time! :)

Birdhouse watching Jane McCaul, August 18, 2012

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PMC Kids Ride Jane McCaul, August 19, 2012

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Sophia participated in a wonderful fundraiser today! It was the Parkton PMC (Pan Mass Challenge) Kids Ride ~ a biking event to raise money for cancer research. A Loyola Blakefield student, Ian Hannafin, began this Parkton ride in 2008 in honor of his friend who lost his battle with cancer in 2005. Ian and his sister Fiona organize and participate in this fabulous event. What an amazing family!

The course was a 14 mile out-and-back with the option of stopping at the 7 mile mark and taking the Loyola bus back to the start. Sophia biked with John (on a tag-along) to the 7 mile mark then took the bus back with her friend Mary (thanks, Tory!) Jack, Christina, John and I biked the rest of the 7 miles back. However, Jack flew off from the start and left us with no chance of catching up. By the time Christina, John and I reached the finish line, Jack had already consumed water, a hamburger, a hot dog, chips and oranges.

Great, great day! Can't wait for next year!

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PMC Kids Ride Jane McCaul, August 19, 2012

Great, great day! Can't wait for next year!

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Ravens Game Jane McCaul, August 24, 2012

The Cool Kids Campaign provided us with 4 tickets to last night's game. Sophia had a great time! John and the kids were even able to attend the Ravens Backyard Bash courtesy of the best babysitter/friend ever~ thank you Laura Humphreys! Sophia's favorite part of the game was when "Protect This House" would flash on the big screen. She keeps chanting this today (complete with fist pumps) which seems appropriate; my little warrior is getting psyched up for this next phase of treatment. It was definitely a great night for all of us. John and the kids had the game and I had 4 glorious hours to myself.

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Go Ravens! Sent from CaringBridge iPhone app

Ravens Game Jane McCaul, August 24, 2012

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I love this kid! Jane McCaul, August 26, 2012

Apparently Sophia became tired of waiting for those last few longer pieces of hair to fall out of the back of her head so she took matters into her own hands ~ quite literally. She went into the bathroom and yanked the hair out until she was satisfied. She was laughing the whole time.

This is awesome on so many levels. Sophia is taking control of a lousy situation, she doesn't care that she will begin school tomorrow with even less hair, and she now feels empowered.

I thought we were the ones who were supposed to teach our children the important lessons in life. These days, it seems just the opposite is happening.

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Some day when I grow up, I want to be just like Sophia.

I love this kid! Jane McCaul, August 26, 2012

This is awesome on so many levels. Sophia is taking control of a lousy situation, she doesn't care that she will begin school tomorrow with even less hair, and she now feels empowered.

I thought we were the ones who were supposed to teach our children the important lessons in life. These days, it seems just the opposite is happening.

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Some day when I grow up, I want to be just like Sophia.

Message from Sophia Jane McCaul, August 27, 2012

Today was the first day of school so I changed the design. Today was a blast . . . a LYMPHOBLAST.

It was so fun that. . . BLESS THE MONKEYS OF THE JUNGLE.

Message from Sophia Jane McCaul, August 27, 2012

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Today was the first day of school so I changed the design. Today was a blast . . . a LYMPHOBLAST.

It was so fun that. . . BLESS THE MONKEYS OF THE JUNGLE.

Whoa! Jane McCaul, August 30, 2012

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This is what we opened our door to find this morning.

Needless to say, the kids were abuzz trying to figure out from whom it was delivered: "It can't be the AMS because it was signed differently" . . . "The note says it comes from across the world but it has to be local because it was just dropped off, not in a mailing" . . . "Ginger was barking like crazy early this morning! She must have seen them!!"

Check out the photos section to see Sophia and her new monkey friend.

And thank you. Any diversion from the stress of tomorrow's Day One of Delayed Intensification certainly does help. I don't know about Sophia, but I am an absolute wreck.

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Whoa! Jane McCaul, August 30, 2012

This is what we opened our door to find this morning.

Check out the photos section to see Sophia and her new monkey friend.

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And thank you. Any diversion from the stress of tomorrow's Day One of Delayed Intensification certainly does help. I don't know about Sophia, but I am an absolute wreck.

A little levity . . . Jane McCaul, August 30, 2012 This was the conversation in the bathroom while brushing teeth this evening: Sophia starting to cry: "I have the blues . . . and I don't know why." Jack: "Um . . . do you think maybe it's because you have cancer. I mean, I'm just throwing it out there . . . but it seems kind of obvious to me." Ahh, brothers . . .

August 31, 2012 Jane McCaul

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“May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.” ? Thérèse de Lisieux I have had this quote posted on my wall at work for about a year now. Yesterday, I took it down to bring with me today. It's so comforting. Thanks so much for all your prayers. We will let you know how everything goes.

August 31, 2012 Jane McCaul “May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.” ? Thérèse de Lisieux

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I have had this quote posted on my wall at work for about a year now. Yesterday, I took it down to bring with me today. It's so comforting. Thanks so much for all your prayers. We will let you know how everything goes.

Day One ~ DONE . . .almost Jane McCaul, August 31, 2012

This picture was taken in clinic before all of the day's procedures. I was talking with one of the nurses when I happened to look over and see Sophia giving Mr. Snugglesworth a check-up.

Everything went well at the hospital today. Sophia's numbers are low but not low enough to keep her home from school yet. They are expected to drop lower during this phase, however, so we'll take it day by day.

She received three different types of chemo today (one through her spine and two through her port.) One of them is supposed to be tougher on her than she is used to. She also has to go back on Dexamethasone which is the steroid from hell so we can expect those mood swings to return. That dose begins tonight. Not looking forward to it.

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A little while ago she left with John to get a prescription and was in good spirits. She just returned exhausted and not feeling well. Again, day by day.

Thanks so much for the prayers and words of encouragement. They mean a lot to all of us!

Day One ~ DONE . . .almost Jane McCaul, August 31, 2012

This picture was taken in clinic before all of the day's procedures. I was talking with one of the nurses when I happened to look over and see Sophia giving Mr. Snugglesworth a check-up.

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A little while ago she left with John to get a prescription and was in good spirits. She just returned exhausted and not feeling well. Again, day by day.

Thanks so much for the prayers and words of encouragement. They mean a lot to all of us!

September 2, 2012 Jane McCaul Sophia had a rough couple of days but things are looking up. Among other things, she has 18 little pills she needs to take daily (9 in the morning, 9 at night.) We've been encouraged to try to get her to swallow them instead of crushing them into various foods. In the past, we've used pudding, ice cream and milkshakes. Friday night it took over an hour to get 6 pills down. There were many tears and heartbreaking words. Then she vomited. The oncologist agreed that 3 were probably absorbed but we still had to get 6 more down. It was not pleasant. The issue is that there's not much of a coating on the pills. So ... after some internet research, we are using Jello jigglers to help with the swallowing. We cut a little slit in a tiny piece of the jello, insert the pill and ... down it goes. We did this last night and this morning with no tears. Whew. This alone helps tremendously with her spirits. She's not so anxious and she's very happy to get it over with quickly. Here's to some happy days! Today should be one; we are presently on our way to brunch with friends. :)

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Clinic Jane McCaul, September 4, 2012 (Sophia asked that I use purple each time I use her name.)

Clinic went well today. They did not do blood draws so we aren't sure what her numbers look like right now. Sophia just had chemo. But it was the one where they need to monitor her for an hour afterwards to make sure she doesn't not have any scary side effects.

Actually, it was a nice visit. Sophia got to take her chemo sitting on my lap in a recliner watching

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the Muppet Movie. After about 15 minutes I said, "I don't know about you but this is pretty awesome for me." Sophia replied, "Yeah, let's do it like this every time I need to get chemo."

I'm actually looking forward to Friday. (Is that wrong?)

Clinic Jane McCaul, September 4, 2012 (Sophia asked that I use purple each time I use her name.)

Actually, it was a nice visit. Sophia got to take her chemo sitting on my lap in a recliner watching the Muppet Movie. After about 15 minutes I said, "I don't know about you but this is pretty awesome for me." Sophia replied, "Yeah, let's do it like this every time I need to get chemo."

I'm actually looking forward to Friday. (Is that wrong?)

September 6, 2012 Jane McCaul

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Sophia did not feel well enough to go to to school today so she stayed home with Grampy. When Jack heard Grampy was coming to babysitt he said, "Well, I hope you're feeling better later because when Grampy watches you, he always takes you takes you out ~ no matter how sick you are. Once when I had the flu, we went to the mall for ice cream. It was awesome." Sure enough, they went to Chik fil A for lunch. When I came home from work, I found the two of them on the couch with their respective iPads. They had played several games of dueling Bejewled Blitz. Sophia had a great day. Before dinner she wanted to lie down again; she tires easily lately. I joined her in bed with one of my new cookbooks and we chose recipes we wanted to try. After dinner, she did pretty well with her evening medication. But the day caught up with her . . . and that's when she gets emotional. Our doctor called at 8pm for a "purely social call." She knows how much Sophia loves One Direction and wanted to tell Sophia that the video the JHH staff created (while we were away) to "That's What Makes You Beautiful" was posted on You Tube. Apparently, it had caught the attention of one of the members of the group (Liam) and he posted it on Twitter. I hung up the phone and told Sophia the exciting news. She burst into tears. I asked her why she was crying and she said, "He won't see me!" We tried to console her but she didn't want to talk about it, was quiet and sad, then fell asleep. I know it seems ridiculous and that she was overly tired ~ but I totally understand and feel sad for her. I suppose I just like it better when she falls asleep happy.

September 6, 2012 Jane McCaul Sophia did not feel well enough to go to to school today so she stayed home with Grampy. When Jack heard Grampy was coming to babysitt he said, "Well, I hope you're feeling better later because when Grampy watches you, he always takes you takes you out ~ no matter how sick you are. Once when I had the flu, we went to the mall for ice cream. It was awesome." Sure enough, they went to Chik fil A for lunch. When I came home from work, I found the two of them on the couch with their respective iPads. They had played several games of dueling Bejewled Blitz. Sophia had a great day. Before dinner she wanted to lie down again; she tires easily lately. I joined her in bed with one of my new cookbooks and we chose recipes we wanted to try. After dinner, she did pretty well with her evening medication. But the day caught up with her . . . and that's when she gets emotional. Our doctor called at 8pm for a "purely social call." She knows how much Sophia loves One Direction and wanted to tell Sophia that the video the JHH staff created (while we were away) to

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"That's What Makes You Beautiful" was posted on You Tube. Apparently, it had caught the attention of one of the members of the group (Liam) and he posted it on Twitter. I hung up the phone and told Sophia the exciting news. She burst into tears. I asked her why she was crying and she said, "He won't see me!" We tried to console her but she didn't want to talk about it, was quiet and sad, then fell asleep. I know it seems ridiculous and that she was overly tired ~ but I totally understand and feel sad for her. I suppose I just like it better when she falls asleep happy.

Prayer request Jane McCaul, September 7, 2012 If you wouldn't mind, please send up an extra prayer for Sophia this morning. She is already having a tough day and we've only just begun. Sophia had a new medicine to take this morning that she said was "disgusting!" and she is very nervous about going to clinic today without John. (He has to be in DC this weekend.) He usually holds her on his lap while they access the port so she's a wreck worrying about doing it without him. I've tried to reassure her that I can do it for her but she says, "Then who will sit in the chair and hold my hand?" I think that's where Mr. Snugglesworth comes in . . . Wish us well!

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September 7, 2012 Jane McCaul We can't thank you enough for all the prayers. We certainly felt them today. I am so happy to say that all went well at clinic today. Sophia was very brave. She only cried once, when the nurse told her she would need to take her anti-nausea medicine tonight. (It's really horrible-tasting.) I explained to the nurse that Sophia doesn't usually need it and that we probably wouldn't take it. She told Sophia that she really might need to take it tonight or she might feel like she needs to vomit. I told the nurse we would certainly take it if needed. But when Sophia looked at me with that worried little face and said quietly, "If I start to feel sick, can't I just take a nap?" I said, "Absolutely." When we got home, Sophia was pretty tired. We got into bed and chatted for awhile before I told her it was time to sleep. The last thing she said before falling asleep was, "Ahhh, Mommy . . . Mommy . . . Mommy." My heart exploded into a million pieces before I, too, fell asleep. And now ~ we even have a fun night to look forward to! Since John is away and Jack won't be home until 10:30, we are having a girls night! We are going to watch a movie early. Then when Christina gets home from her cross country meet, we will give each other pedicures and watch the Orioles defeat the Yankees. Good times.

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And now ~ we even have a fun night to look forward to! Since John is away and Jack won't be home until 10:30, we are having a girls night! We are going to watch a movie early. Then when Christina gets home from her cross country meet, we will give each other pedicures and watch the Orioles defeat the Yankees. Good times.

Quick update Jane McCaul, September 8, 2012 Sophia did not take the anti-naseau medicine and did not get sick last night. We had a great night and she hung in for a few innings of the game before falling asleep on the couch. She was very disappointed to hear the outcome this morning but tonight's a new night and we will be watching again. Sophia has more energy this morning than yesterday and Mimi and Papa Gene are coming for a visit today! It should be a great day.

September 9, 2012 Jane McCaul

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Sophia is definitely moving at a slower pace these days but still managing to have fun.

We had a fabulous visit with Mimi and Papa Gene yesterday! We were (well, I was) secretly hoping they would bring the 7 grain bread from their local bakery and they did! Yea! (because when the 7 grain bread is there I will avoid the crumb cake that they also bring!) Sophia was still tired but really enjoyed sitting quietly with Mimi while playing games. Ginger, too, was happy to snuggle up with Papa Gene. I was able to jump out back for a little while and get some yard work done so it was a win-win-win-win-win.

As soon as Mimi, Papa Gene, Christina and Jack had left, Sophia said in her quiet little voice, "I'm bored." Translation: "Let's bake!" At least that's what I hear. By the time the kids came home (and KK and Nick showed up) we had chocolate chip cookies!

Then we discovered a package on the porch (Thank you, Smiths!) and spent the next couple of hours playing fun games. "Too Many Monkeys" is our favorite. Hmm . . . I wonder why . . .

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By 7pm she was finished. She took her medicine while watching a little of the O's game but asked if we could go to bed at 7:30. She was pretty warm so I took her temp and realized she had a 99.9 fever. She fell asleep with me staring at her. I fell asleep that way until John surprised us by coming home at 10:30! We weren't expecting him until this morning. We woke her to take her temp again and she was SO happy to see him. By that time her temp had dropped to 99.4 . . . and the Orioles had won so we were all happy and relieved.

This morning her temp was only 99.1 so we'll keep our fingers crossed.

September 9, 2012 Jane McCaul

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Sophia is definitely moving at a slower pace these days but still managing to have fun.

Then we discovered a package on the porch (Thank you, Smiths!) and spent the next couple of hours playing fun games. "Too Many Monkeys" is our favorite. Hmm . . . I wonder why . . .

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This morning her temp was only 99.1 so we'll keep our fingers crossed.

September 11, 2012 Jane McCaul Sophia felt well today and was able to attend school which was great . . . sort of. Yesterday she had a fever and was tired so she stayed home with Nanny and Grampy. She said she had a very nice day and I came home to folded laundry and clean dishes. It was lovely. Today Sophia had a "good day" at school. She seemed happy when I got home and is presently preparing for School. She has had signs posted since yesterday letting us know that we would be attending School this evening. I even saw her preparing her lesson plans early this morning. Watching her teach delights me to no end . . . for many obvious reasons. But it's mostly because this is the first session of School since before she was diagnosed. I am really looking forward to it tonight! However, since we will most likely spend a lot of time at School this evening, we won't get much housework

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done. John and I might just be OK if she has to stay home another day this week . . . and Nanny has to come over.

School Jane McCaul, September 12, 2012

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Sophia is headed to school again!

Today she will have to be the student but since we didn't finish all her plans for us last night, I'm pretty sure she will be teaching again by evening. Thankfully I have already completed my homework. Jack secretly did his during Reading but I didn't rat him out. Sophia is an awesome teacher. She has/ has had very good role models! (Thank you St. Agnes teachers!)

School Jane McCaul, September 12, 2012

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Sophia is headed to school again!

September 14, 2012 Jane McCaul

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Sophia did not feel well enough to go to school yesterday but she had a nice day with Nanny (and yes, I came home to a clean kitchen and no dirty laundry.) They had a picnic lunch and even took Ginger for a walk.

She actually did not feel well enough to go to school today either but she has no fever and it's picture day so we sent her in. St. Agnes was nice enough to schedule her class picture first so that she can leave early to get to clinic this morning. Still, it's heartbreaking to send her away with tears in her eyes. I'll be counting down the minutes until we can pick her up. As of now, 89 minutes . . .

September 14, 2012 Jane McCaul

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Inpatient again Jane McCaul, September 15, 2012 Sadly, I'm writing from our room at the hospital. Sophia spiked a fever last night and we ended up in the ER.

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We were admitted very early in the morning. Her blood counts had dropped significantly; her ANC which had been 750 at clinic in the morning had dropped to 250 by the evening. With the fever, that becomes worrisome. We are told we will be here at least 48 hours so they can monitor the results of the cultures taken and do more blood draws. On the bright side, our room has a magnificent view. When Sophia woke up this morning I pulled up the shade to show her. She smiled so brightly ~ something I hadn't seen in days. We snuggled on the couch for a little while taking in the sights. We both agree that Baltimore Harbor looks absolutely beautiful today.

Inpatient again Jane McCaul, September 15, 2012 Sadly, I'm writing from our room at the hospital. Sophia spiked a fever last night and we ended up in the ER. We were admitted very early in the morning. Her blood counts had dropped significantly; her ANC which had been 750 at clinic in the morning had dropped to 250 by the evening. With the fever, that becomes worrisome. We are told we will be here at least 48 hours so they can monitor the results of the cultures taken and do more blood draws. On the bright side, our room has a magnificent view. When Sophia woke up this morning I pulled up the shade to show her. She smiled so brightly ~ something I hadn't seen in days. We snuggled on the couch for a little while taking in the sights. We both agree that Baltimore Harbor looks absolutely beautiful today.

September 16, 2012 Jane McCaul At this point we are unsure how long Sophia will remain in the hospital. Her ANC was 130 when they drew blood last night. They won't allow her to leave until it is above 200. We are also awaiting the results of a culture that was drawn yesterday to determine infection. Until the results come back, Sophia remains in isolation, meaning no playroom for her. They want to make sure she doesn't have anything that could compromise the health of the other oncology children. Fortunately, she was able to have visitors so Nanny and Grampy brought Christina and Jack for a nice visit this afternoon. She was the most animated she had been in days. She became tired pretty quickly, however.

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She is presently snuggled in bed with Daddy watching the Ravens game. John will stay with her tonight so that I can spend a night at home with the big kids and go to work in the morning. But I can't bring myself to leave just yet; it's going to be difficult to be away from this angel.

Nowhere to go but up Jane McCaul, September 17, 2012 Sophia's culture came back negative for infection. So that's good.

However, her ANC (absolute neutrophil count) has dropped to 0 . . .as in zero. When John called to tell me this, I thought he was joking. He was told by the doctors that this does sometimes happen and "now there's nowhere to go but up." So if the doctors aren't freaking out, I guess I can attempt to remain calm, as well.

I tried to pray the Peace Within prayer (St. Therese) ~ but I can't seem to get to that calm, quiet place. Instead, I

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find myself using Frank Costanza's simpler method: Serenity Now!!

John just sent me an adorable video of Sophia in the courtyard, with her mask on, watching the fish in the pond. At least she feels well enough to move about . . . I'll take that.

Nowhere to go but up Jane McCaul, September 17, 2012 Sophia's culture came back negative for infection. So that's good.

I tried to pray the Peace Within prayer (St. Therese) ~ but I can't seem to get to that calm, quiet place. Instead, I find myself using Frank Costanza's simpler method: Serenity Now!!

John just sent me an adorable video of Sophia in the courtyard, with her mask on, watching the fish in the pond. At least she feels well enough to move about . . . I'll take that.

Getting there . . . Jane McCaul, September 18, 2012

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Sophia's ANC is 130 today! Her fabulous night nurse left her a butterfly charm kit and a note saying, "Yay! Your ANC is 130 - you are almost there! I found you a butterfly charm kit so you can make them today! Have a great day!! ?Alex" What a great start to a wonderful day (it's my sister Carrie's birthday, as well!)

Getting there . . . Jane McCaul, September 18, 2012 Sophia's ANC is 130 today! Her fabulous night nurse left her a butterfly charm kit and a note saying, "Yay! Your ANC is 130 - you are almost there! I found you a butterfly charm kit so you can make them today! Have a great day!! ?Alex" What a great start to a wonderful day (it's my sister Carrie's birthday, as well!)

Still waiting . . . Jane McCaul, September 19, 2012

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Today could be a GREAT day ~ if Sophia's ANC is 200 or above they will let her go home!

(I just hope it's not before 2:30 because she really wants to play Hospital Bingo . . . and Elmo is coming again today . . . but she still refuses to have her picture taken with him.)

We'll keep you posted!

Still waiting . . . Jane McCaul, September 19, 2012

Today could be a GREAT day ~ if Sophia's ANC is 200 or above they will let her go home!

(I just hope it's not before 2:30 because she really wants to play Hospital Bingo . . . and Elmo is coming again today . . . but she still refuses to have her picture taken with him.)

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We'll keep you posted!

Oh, well Jane McCaul, September 19, 2012 Sophia's count was 100. Not what we were hoping but at least she will be safe in the hospital while these numbers are so low and there are colds/viruses going around. We are going to take her to the courtyard later to get her outside. Then she'll play Bingo and hopefully see Elmo. I heard there is a cooking show in the Great Room tomorrow . . .

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Ants in Your Pants as well as Candy Land and successfully completed three puzzles. (We even managed to get a bit of school work in.) Here's to higher numbers tomorrow!! This place is great but I desperately miss the five of us (and Ginger) together under one roof. PS ~ I wanted to personally thank all of our generous friends who have contributed to Team Sophia McCaul's "Light the Night Walk" for the Leukemia and Lymphoma Society. LLS is an amazing organization without whom many of Sophia's friends here at JHH may not have made it. If you'd like to visit our page or learn more about what LLS does for children like Sophia go to: http://pages.lightthenight.org/md/Annapoli12/TeamSophiaMcCaul#home (There's a darn cute picture of Phia on the page.)

Oops Jane McCaul, September 19, 2012 Talk about out of it! I thought Elmo was coming here today because I saw his visit posted on the calendar here at the hospital. Unfortunately, it seems I was looking at Wednesday, Sept. 5th rather than the 19th. Wow. But Sophia had a nice day regardless. She and John walked around quite a bit before I got here then we all walked around the grounds even more. She scored a Greek goddess Barbie from the Bingo game, crushed me in Ants in Your Pants as well as Candy Land and successfully completed three puzzles. (We even managed to get a bit of school work in.) Here's to higher numbers tomorrow!! This place is great but I desperately miss the five of us (and Ginger) together under one roof. PS ~ I wanted to personally thank all of our generous friends who have contributed to Team Sophia McCaul's "Light the Night Walk" for the Leukemia and Lymphoma Society. LLS is an amazing organization without whom many of Sophia's friends here at JHH may not have made it. If you'd like to visit our page or learn more about what LLS does for children like Sophia go to: http://pages.lightthenight.org/md/Annapoli12/TeamSophiaMcCaul#home (There's a darn cute picture of Phia on the page.)

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ANC 80 Jane McCaul, September 20, 2012 Bummer.

Making the most of it Jane McCaul, September 20, 2012

Sophia participated in today's cooking class at the Children's Center. She was given a kit and could watch the live show from her room and follow along. The photo shows her creations!

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After lunch, Sophia and Daddy went down to the hospital Library where her Houses of Hope birdhouse was on display. She was even allowed to check out a few books while there.

I am grateful that Sophia is in the hospital safe from the germs. Unfortunately, I am one of those germs! I came down with a cold so I need to stay away from Sophia for the time being . . . and it's killing me. But I will sanitize our house like crazy in hopes that she will be allowed to come home soon.

Making the most of it Jane McCaul, September 20, 2012

Sophia participated in today's cooking class at the Children's Center. She was given a kit and could watch the live show from her room and follow along. The photo shows her creations!

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After lunch, Sophia and Daddy went down to the hospital Library where her Houses of Hope birdhouse was on display. She was even allowed to check out a few books while there.

Disappointment again Jane McCaul, September 21, 2012 Sophia's ANC was 90 so she will remain in the hospital.

For all you 1776 fans, I'm really trying avoid this journal sounding like one of General Washington's letters to the delegation ("That man could depress a hyena!") so we will continue to look on the bright side.

Sophia is attempting to do the same. She said,"Well, at least it's up from yesterday." That's my girl!

Disappointment again Jane McCaul, September 21, 2012

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Sophia's ANC was 90 so she will remain in the hospital.

Sophia is attempting to do the same. She said,"Well, at least it's up from yesterday." That's my girl!

Zilch Jane McCaul, September 22, 2012 Sophia's ANC is 0 but she remains in good spirits. People have asked if she can have visitors but we would prefer that no school aged children come to see her. (Germ potential too high.) She does miss her friends so we are willing to Skype or FaceTime with anyone who'd like to chat with her. Thanks for all your prayers, love and support!

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Olympians visit Jane McCaul, September 22, 2012

Sophia was just visited by Olympic swimmers! (Don't worry, Christina, it was not Ryan Lochte.)

They came for a visit and gave her a Swim Across America t-shirt and wristband. They will be taking part in the swim tomorrow and told Sophia they would be thinking about her.

Sophia's Uncle Joe took this picture. He and her aunt KK (Carrie) happened to be here visiting when the swimmers came in. Carrie was hoping for a Phelps sighting but no such luck.

If you have to be stuck somewhere, this certainly is the place.

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Olympians visit Jane McCaul, September 22, 2012

Sophia was just visited by Olympic swimmers! (Don't worry, Christina, it was not Ryan Lochte.)

They came for a visit and gave her a Swim Across America t-shirt and wristband. They will be taking part in the swim tomorrow and told Sophia they would be thinking about her.

Sophia's Uncle Joe took this picture. He and her aunt KK (Carrie) happened to be here visiting when the swimmers came in. Carrie was hoping for a Phelps sighting but no such luck.

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If you have to be stuck somewhere, this certainly is the place.

Yes! Jane McCaul, September 23, 2012 Sophia's ANC is 130 today. We were told yesterday by the doctor to expect some ups and downs and that we'd most likely remain in the hospital for another week. That being said, I still think this is a great sign! Sophia has declared today a Lazy Day (we didn't sleep too well last night.) She doesn't want to make any trips around the hospital. But I'm looking at the bright sunshine outside our window and I am pretty determined to get her out there, at least to the fish pond, at some point today. The kid needs her vitamin D! Of course . . . this means I will need to brush my hair with a fork (again) since I forgot a brush (again) but that's Ok! It's all good!

Ups and Downs Jane McCaul, September 24, 2012

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So . . . the ANC dropped back down to 100. Honestly, we are OK with this. Tomorrow there are two fun things happening at the hospital that Sophia did not want to miss: coffee & donuts in the library in the morning and Art Safari in the afternoon. Now, she'll definitely make both!

Yesterday didn't turn out to be such a lazy day for Phi after all. We went down to the fish pond in the morning and walked around the hospital. Then Mimi and Papa Gene came from NJ for a visit and we Face Timed with Sophia's cousin Julia and Aunt Patty in LA. Then it was game after game to watch on TV!

John is with her today and said they were going to take it slow. Her hemoglobins are a bit lower than before so she is tired. Plus ~ she needs to rest up for our big today tomorrow!

Coffee, donuts and Art Safari! (I definitely picked the right day to stay with her!)

Ups and Downs

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Jane McCaul, September 24, 2012

John is with her today and said they were going to take it slow. Her hemoglobins are a bit lower than before so she is tired. Plus ~ she needs to rest up for our big today tomorrow!

Coffee, donuts and Art Safari! (I definitely picked the right day to stay with her!)

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300! Jane McCaul, September 25, 2012 Sophia's ANC is 300! I'm not sure what this means with regard to being discharged but it is definitely a GREAT sign! We will wait to hear the final word from the docs. I can tell you this ~ we aren't going anywhere until after Art Safari.

Home Sweet Home Jane McCaul, September 25, 2012 We are home ~ all of us. There has been some serious monkey business going on lately. Sophia left the hospital carrying her fabulous monkey-themed gift bag from the Anonymous Monkey Sender which she has been playing with for the past two days. (Thank you, AMS!) Then she just arrived home to an enormous monkey-themed Welcome Home basket from Loyola Blakefield. (Thank you, All!) She and Jack are presently going through all the loot. I can safely say that the majority of the monkeys of the jungle are now in our living room. I was equally excited about my own welcome home gifts from John: my favorite roasted vegetables from Eddies and a bottle of Veuve Clicquot AND there is Trinacria's Egglplant parm in the oven. Have I mentioned how awesome my husband is?

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If and when I cry myself to sleep tonight, it will most definitely be tears of absolute joy.

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Tomorrow we go in for a clinic visit. If her ANC is 750 she will have a full day of treatment ~ spinal tap and more rounds of chemo. At first it seemed like getting to 750 would be quite a reach but one doctor pointed out that she went up 200 points from Monday to Tuesday. So going from 300 to 750 in 3 days is a possibility. They have her OR time scheduled for 10:30 just in case. We are expected in the clinic at 8am for blood draws. I guess we'll see . . . Since she can't have anything to eat or drink after midnight tonight (in anticipation of the spinal tap,) I'm packing a breakfast for her in case she doesn't make 750. John and I usually fast in solidarity so I may have to pack a big breakfast. Sent from CaringBridge iPhone app

September 27, 2012 Jane McCaul Sophia is doing great! She has had two happy days at home ~ with Daddy yesterday and with Nanny and KK today. I apologize for not giving an update on Art Safari. It's just that it was kind of . . . a bust. The kit they brought to her room was missing supplies and the audio was out for the first 15 minutes of the show. Sophia was frantic that she didn't know what to do and could possibly be doing something wrong. I told her, "I can read the lady's lips and she said to be creative and do whatever you want. No two projects should look the same." I'm pretty sure she bought it. Our nurse Coleen was wonderful, getting us the extra supplies that we needed. Sophia ended up with a foam picture frame (I think?) with little foam animals around the border. The experience was much more stressful than all of the other art projects we did while there. My favorite was the pastels day. You would have thought it was Christmas (for me) when I came running back to our room, "Look what I found! Oil pastels!!!" Now THAT was fun. Tomorrow we go in for a clinic visit. If her ANC is 750 she will have a full day of treatment ~ spinal tap and more rounds of chemo. At first it seemed like getting to 750 would be quite a reach but one doctor pointed out that she went up 200 points from Monday to Tuesday. So going from 300 to 750 in 3 days is a possibility. They have her OR time scheduled for 10:30 just in case. We are expected in the clinic at 8am for blood draws. I guess we'll see . . . Since she can't have anything to eat or drink after midnight tonight (in anticipation of the spinal tap,) I'm packing a breakfast for her in case she doesn't make 750. John and I usually fast in solidarity so I may have to pack a big breakfast.

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Sent from CaringBridge iPhone app

And we're on! Jane McCaul, September 28, 2012

I have to say I am shocked. Sophia's ANC was 850 so we are moving forward. When we were given the news, Sophia burst into tears. She said, "I'm just so hungry and I want to go back home." We are in pre-op now waiting for a little happy juice. After Sophia's procedure, and after she eats her Special K, we will go back up to clinic for a couple different types of chemo. I don't anticipate any problems there, especially since she will be well-fed.

And we're on! Jane McCaul, September 28, 2012

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September 28, 2012 Jane McCaul Sophia is safe and sound (and sufficiently stuffed) at home. All went well in the OR and then again in clinic ~ and I simply must share what Sophia consumed SO FAR today, as it is somewhat unbelievable.

10:15 am: Upon waking in the PACU - 1 serving Special K 11:00: In clinic - 1 serving Rice Krispies 11:30: In clinic - 3/4 Chocolate chip bagel 1:00: In clinic - 1 serving Mac & Cheese

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CaringBridge Bringing family, friends and loved ones together when it matters 2:30: In clinic - Another whole serving Mac & Cheese

5:30: At home - Sweet & Sour Chicken (minus the sauce) and rice (We promised her Chinese take-out when her #s got above 500)

We are sitting down to watch The Avengers shortly. Sophia has promised me she is only having fruit or vegetables for the rest of the night. Now that she is home and well, I am holding her to it! Come on, sliced apples and kale chips can be just as much fun as buttered popcorn!

A home health care nurse will visit Sophia here for the next 3 days to administer more chemo. (This chemo is supposed to make her feel a little bit sicker than the others.) Then, if all goes well, we will go back to clinic next Friday and follow the same 4 days on, 3 days off schedule. After this, the hardest part should be over with.

Our little trooper is ready ~ so Mom and Dad are ready, as well . . . I think.

10:15 am: Upon waking in the PACU - 1 serving Special K

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11:00: In clinic - 1 serving Rice Krispies 11:30: In clinic - 3/4 Chocolate chip bagel 1:00: In clinic - 1 serving Mac & Cheese 2:30: In clinic - Another whole serving Mac & Cheese

5:30: At home - Sweet & Sour Chicken (minus the sauce) and rice (We promised her Chinese take-out when her #s got above 500)

Our little trooper is ready ~ so Mom and Dad are ready, as well . . . I think.

October 1, 2012 Jane McCaul

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"She looks great. I mean remarkably well. It's actually amazing." Those were the words of the visiting nurse yesterday. I never tire of hearing that.

Today was the last day of the first 4 day chemo treatment. So far, so very good. Sophia had been extremely excited about the movie "Hotel Transylvania" coming out. I told her we couldn't go over the weekend because we weren't crazy about her being among crowds. So today, after her treatment, while children everywhere were still in school, she and I dashed off to the movie theatre. We arrived halfway through the previews to discover only 4 other people in the whole theatre. It was perfect.

The movie was very funny ... but watching that sweet girl smile and laugh for two hours was more enjoyment than I could have hoped for.

October 1, 2012 Jane McCaul "She looks great. I mean remarkably well. It's actually amazing." Those were the words of the visiting nurse yesterday. I never tire of hearing that.

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The movie was very funny ... but watching that sweet girl smile and laugh for two hours was more enjoyment than I could have hoped for.

October 4, 2012 Jane McCaul

My little angel is at work with me today! It worked out perfectly because I was missing her like crazy the past few days and now she's feeling well enough to be out a little bit. Yea for me! Although ~ John keeps calling asking me to bring her over to visit him so . . . I don't know, I might have to share.

October 4, 2012 Jane McCaul

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Clinic update Jane McCaul, October 5, 2012 Sophia's counts are definitely lower (650) but she was still able to get chemo today and is scheduled to get it from the visiting nurse tomorrow, Sunday and Monday. However, we are reminded that all this could change if she develops a fever (they anticipate her counts to fall even lower;) then we'd be back in inpatient. Sophia's hemoglobin # was borderline for needing a transfusion so they scheduled one for Monday knowing that the number will drop again in the next few days. So if all goes well, we will sail through the weekend with daily chemo treatments and plan on a blood transfusion on Monday. I'm pretty sure I never would have thought I'd use the phrases "if all goes well," "daily chemo treatments" and "blood transfusion" in the same sentence.

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So . . . lets make this a great weekend! Go Orioles, Go Ravens and Go Phia!!! (assuredly not in order of priority)

October 6, 2012 Jane McCaul We are two days into the second 4-day treatment and Sophia is doing quite well. Lest you worry she may have lost some of that Sassy Sophia Spunk, I'll share a recent conversation: Me: "I'd like to go for a run today. Have you seen my iPod?" Sophia: "No but you can use mine." Me: "Thanks, that's very sweet but I'm not sure you have the music I'd like. Do you have any Cold Play?" Sophia: "Yes! I have Viva la Vida!" Me: "Awesome!" (at which point I begin to sing the song) Sophia: "Mom, save it for the run." I laughed so hard that she began to laugh with me . . . or at me. I'm not really sure. It was a good time

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nonetheless.

October 8, 2012 Jane McCaul

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Happy Columbus Day! Sophia is receiving a blood transfusion as she lies, chilling out, with her brother Jack. We will be here for another few hours then we should be able to go home. Today is the final day of the toughest medicine. The effects of these meds will continue to be seen for the next few weeks. Her numbers have dropped again as expected and will continue to do so. She's now neutropenic but has no fever at this point so she does not have to be admitted. We have to be as careful as possible over the next few weeks to keep germs away. They anticipate next week being the most difficult for her as far as how she's feeling/chance for fevers, etc. Unfortunately, this is the same week John will be in CA. So we'd appreciate all the healing prayers you care to send! Sent from CaringBridge iPhone app

October 8, 2012 Jane McCaul

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Enjoying a beautiful fall day Jane McCaul, October 11, 2012

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What a gorgeous day!

We began the day with a schedule. I had the whole day mapped out and was really excited about all we would accomplish ~ school work, cleaning (me), crafts, games, reading, etc. Sophia was surprisingly less excited about the schedule.

We went outside for our scheduled 9:00 walk and had such a great time biking and walking around the neighborhood that the schedule sort of . . .went out the window. We came home 15 minutes later than expected. Thankfully that cut into my cleaning time.

When, during Sophia's school work, she began to cry about not feeling well, I decided that after her work we would scrap the schedule and just chill. Of course, we did have a friendly conversation about how food like gummy bears don't actually help us feel well. I told her that if cookies and doughnuts didn't make us weak and tired I'd eat them all day long! She told me about a funny commercial on TV that demonstrated the same idea. She decided that it was probably the candy that made her feel sick and agreed to go with sliced apples next time. Score!

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She is presently watching TV and when I'm finished this entry we are making a "little hang-out place" for Sophia in her room. Maybe we can do a little reading in the new hang-out. But if not, no worries. I'm going with the flow.

Enjoying a beautiful fall day Jane McCaul, October 11, 2012

What a gorgeous day!

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Clinic Update

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Jane McCaul, October 12, 2012

I called Sophia to ask how clinic went today and she said, "OH, awful just awful!" Apparently the nurse had difficulty accessing her port and ended up having to poke her twice. :(

Of course this is an entirely different response from the one I got from John when I texted him the same question earlier. His response was "She was fine. Tough as nails."

Why is is that kids are generally so much stronger for Dad and tend to fall apart with Mom?

So I was sitting here eating my freeze-dried fruit pondering this question while simultaneously pondering the idea of freeze-drying in general and I decided a few things: 1.Thank God Sophia has two parents so that she can be strong and also have the opportunity to be weak when she needs comforting; 2. God bless the children who don't have this opportunity (and likewise the parents who consistently have to be both for their children;) 3. I still don't truly understand freeze-drying despite having had it explained to me and having googled it just now; and 4. I will never get back that half hour of my life.

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Sophia's ANC was 330 today so we continue to hope and pray for no fevers. She is also going to need platelets when we visit the clinic Tuesday. Thankfully, she will not be receiving chemo (for a little while!) so her body should have a chance to recuperate somewhat.

Have a wonderful weekend! As always, we are grateful for your prayers!

Clinic Update Jane McCaul, October 12, 2012

I called Sophia to ask how clinic went today and she said, "OH, awful just awful!" Apparently the nurse had difficulty accessing her port and ended up having to poke her twice. :(

Of course this is an entirely different response from the one I got from John when I texted him the same question earlier. His response was "She was fine. Tough as nails."

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Why is is that kids are generally so much stronger for Dad and tend to fall apart with Mom?

Have a wonderful weekend! As always, we are grateful for your prayers!

Unbroken Jane McCaul, October 16, 2012 This was supposed to be the tough week. We were told to expect possible nausea, fatigue, a drop in numbers and other unfortunate side effects. With the exception of a little end-of-day fatigue (who doesn't have that?) Sophia has been feeling fine. She is in great spirits. Not only that, her clinic visit today revealed an increase in numbers ~ across the board! She is no longer neutropenic and did not even need the scheduled transfusion. What?!

This kid has toxic poison flowing through her veins and she is still kicking butt. I am reading Unbroken by

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Laura Hillenbrand right now and I can't help but draw parallels between some of the POWs and Phia. "Tough cookie" does not even begin to describe this child.

I hope I am not speaking too soon. I realize she could get a fever any moment now and we could end up back in the hospital. However, I have no doubt she'd be smiling as we wheeled her to her inpatient room ~ psyched for the Mac & Cheese again.

She is chemo-free until her next OR visit on the 26th. Fingers crossed, knock on wood and many prayers. In the meantime, it's Sophia's will that keeps us strong.

Sent from CaringBridge iPhone app

This kid has toxic poison flowing through her veins and she is still kicking butt. I am reading Unbroken by Laura Hillenbrand right now and I can't help but draw parallels between some of the POWs and Phia. "Tough cookie" does not even begin to describe this child.

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She is chemo-free until her next OR visit on the 26th. Fingers crossed, knock on wood and many prayers. In the meantime, it's Sophia's will that keeps us strong.

Sent from CaringBridge iPhone app

October 19, 2012 Jane McCaul Sophia is still doing remarkably well. My sister Carrie spent the day with her yesterday and they were visited by Sophia's zany Uncle Chris. Needless to say, she had a fun day. When she is not relaxing on the couch or doing school work, Sophia keeps busy with all the activity sheets sent to her by the AMS. She is having a blast with that. When the latest package arrived, she noticed that it was signed "Ms. Smith," a former teacher at St. Agnes. Sophia said, "Ms. Smith is the AMS! I thought it was Ms. Julie because of all the school stuff. Oh, I should have known!" Thank you, Dale. :) Jack and I attended a Super Sibs meeting last night. It is a monthly program designed for siblings of children with cancer. We weren't sure what to expect but it turned out to be quite cathartic, at least for me. We had dinner together then the kids went with a social worker into one room and the parents stayed with another social worker. Jack said he had a lot of fun and can't wait for the next meeting. As for myself, I noticed an interesting shift take place. In the beginning of Sophia's diagnosis I did not want to talk with any other cancer parents. In group settings I felt uncomfortable, out of place and too emotionally charged. Last night however, I found myself bonding with these parents in a way I had not felt before.

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There is so much more to having a child with cancer than just having a child with cancer. It affects the entire family. I have felt pulled in so many directions, wrestling with the guilt of not being able to be the perfect mother to three very different children with very different needs, not being the perfect wife, or the perfect manager at work, or the perfect friend. It was an enormous relief to hear every other parent saying the same thing and coming to the conclusion that all we can do is the best we can. I left there feeling those successful first date thoughts, "So . . . do you want to do this again? Maybe we could meet up for coffee sometime? I really need to see you again and I can't wait another month!" I'd love for John and Christina to come along when schedules permit. Christina isn't one to " share her emotions with total strangers" but I think just listening to the total strangers share their similar emotions is very helpful. John, he would just have the whole group laughing. And that's just the best therapy there is. I can't wait for him to come home from CA tonight!

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thing and coming to the conclusion that all we can do is the best we can. I left there feeling those successful first date thoughts, "So . . . do you want to do this again? Maybe we could meet up for coffee sometime? I really need to see you again and I can't wait another month!" I'd love for John and Christina to come along when schedules permit. Christina isn't one to " share her emotions with total strangers" but I think just listening to the total strangers share their similar emotions is very helpful. John, he would just have the whole group laughing. And that's just the best therapy there is. I can't wait for him to come home from CA tonight!

Suds for Sophia Jane McCaul, October 21, 2012

Some of our dearest friends held a car wash yesterday to raise money for Team Sophia McCaul for the Leukemia & Lymphoma Society's Light the Night Walk next week. Sophia was right out there with the rest of us, working hard.

There was a steady stream of cars the entire time. Special thanks to all those who braved the morning chill to wash and dry cars, sell yummy treats and stand on the corners with posters ~ as well as to those who came to have their cars washed. Once again, I am blown away by the generosity of people. We raised $1300!!

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Unbelievable. We are almost to our goal!!!! http://pages.lightthenight.org/md/Annapoli12/TeamSophiaMcCaul#home

Since Sophia's diagnosis, I have realized that when it comes right down to it ~ people are good, life is good and I am grateful to God for being able to experience all of it.

Suds for Sophia Jane McCaul, October 21, 2012

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Since Sophia's diagnosis, I have realized that when it comes right down to it ~ people are good, life is good and I am grateful to God for being able to experience all of it.

Delayed Intensification - DONE Jane McCaul, October 26, 2012

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Yesterday marked the final day of the toughest phase of Sophia's treatment. We celebrated with a night out to Disney On Ice! Cool Kids Campaign provided us with tickets to the show and we had a blast.

Today Sophia begins Interim Maintenance II. We will go to clinic at 8:30 for blood work, then down to the OR for a lumbar puncture where she will receive chemo, then back up to clinic for more chemo. It will be a long day but she's still riding high from last night so that's a plus.

At the show last night, the kids were concerned that I might cry during the Tangled song, "I See the Light" because ~ I really always do. (Thankfully, I only teared up.) I'm not sure why the song gets me every time. It could be that I'm a hopeless romantic, or that it reminds me of my relationship with John or that it was the last song Sophia danced to in a recital.

But it seems to resonate with me now more than ever.

All those days watching from the windows All those years outside looking in

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CaringBridge Bringing family, friends and loved ones together when it matters All that time never even knowing Just how blind I've been Now I'm here, blinking in the starlight Now I'm here, suddenly I see Standing here, it's all so clear I'm where I am meant to be And at last I see the light And it's like the fog has lifted And at last I see the light And it's like the sky is new And it's warm and real and bright And the world has somehow shifted All at once everything looks different Now that I see you

Thanks again for the prayers and love!

Delayed Intensification - DONE Jane McCaul, October 26, 2012

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But it seems to resonate with me now more than ever.

All those days watching from the windows All those years outside looking in

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Thanks again for the prayers and love!

Good news, Bad news Jane McCaul, October 26, 2012 Let's start with the bad news. Sophia did not make counts and is unable to get chemo treatment today. Sophia actually counts this as good news. The treatment today has been rescheduled for Tuesday.

The real good news is that her ANC was better than last time and only 20 points away from being able to receive treatment. If Sophia had not been participating in a clinical trial, they would probably have let her go ahead with the treatment since we were so close.

This might be a plus for us. We have all been looking forward to the Light the Night walk tomorrow night. Now, Sophia will be another day farther away from chemo. She should be less tired and able to enjoy the night more. Let's hope.

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If you were planning on coming, we'll see you in Annapolis!!

Sent from CaringBridge Mobile

If you were planning on coming, we'll see you in Annapolis!!

Sent from CaringBridge Mobile

We lit it up at Light the Night

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Jane McCaul, October 28, 2012

So much love. That's the best way to describe last night.

From the moment we arrived at Navy Memorial Stadium we could feel the sense of warmth and excitement. Everyone there was coming together for a common cause: to honor their loved ones and help find a cure for cancer. You couldn't help but feel inspired and joyful. A diagnosis of Leukemia or Lymphoma is frightening and heartbreaking for everyone involved. It seems counter-intuitive that an event regarding these diseases could be so euphoric; but that's exactly how I felt. And I'm pretty sure others felt the same way.

That's not to say there weren't moments of tears; it's incredibly discomforting to hear the stories of children struggling with cancer. It was also saddening to know that many people there had lost their own loved ones. At the same time, watching those gold balloons being illuminated in memory of loved ones who lost their battle with cancer was somehow uplifting; the memory of these loved ones was truly being celebrated and the love was overwhelming.

I am so grateful that we are all able to experience this abundance of love. To say Sophia had a wonderful time

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would be an understatement. She had an absolute blast having her face painted, getting monkey-tatooed, standing on stage with Uncle Chris and Auntie Eileen, illuminating her Survivor balloon then strolling through downtown Annapolis with family and friends on a beautiful fall night. Just when we thought the perfect night had come to an end, we were able to do what we love most of all ~ dance, baby!

As soon as we got back to the stadium after the walk, the music was pumping and it took Sophia all of two seconds to jump from her wheel chair, grab my arm and run to the dance floor. We danced until the last song was played. We formed a circle around Sophia and sang (screamed) the perfect last song to her: What Makes You Beautiful. She looked like she was in Heaven the entire time. Watching her joyful face and adorable little body dance to the music was unbelievably exhilarating. When they finally kicked Team Sophia McCaul off the dance floor, people were already talking about doing it again next year. I'm in! If I can feel half as giddy with love next year as I do right now, I'm all for it.

If you would like to see more pictures from the Light the Night Walk, visit our Facebook page: www.Facebook.com/TeamSophiaMcCaul. Feel free to add your own pictures for all to see! Spread the love!

We lit it up at Light the Night Jane McCaul, October 28, 2012

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So much love. That's the best way to describe last night.

I am so grateful that we are all able to experience this abundance of love. To say Sophia had a wonderful time would be an understatement. She had an absolute blast having her face painted, getting monkey-tatooed, standing on stage with Uncle Chris and Auntie Eileen, illuminating her Survivor balloon then strolling through

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downtown Annapolis with family and friends on a beautiful fall night. Just when we thought the perfect night had come to an end, we were able to do what we love most of all ~ dance, baby!

If you would like to see more pictures from the Light the Night Walk, visit our Facebook page: www.Facebook.com/TeamSophiaMcCaul. Feel free to add your own pictures for all to see! Spread the love!

October 31, 2012 Jane McCaul Sophia made counts so we are going ahead with all treatment today. She is in the OR at this moment having her lumbar puncture. The doctors and nurses were fussing all over her again, commenting on her skeleton shirt, making her (and me!) laugh. I hate leaving her in there but they do make it easier. She's got a long day ahead of her. Not your typical Halloween but Sophia seems fine with it. She says she's excited to stay home and give out candy to all the trick-or-treaters. I love this kid. Sent from CaringBridge Mobile

October 31, 2012

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Jane McCaul Sophia made counts so we are going ahead with all treatment today. She is in the OR at this moment having her lumbar puncture. The doctors and nurses were fussing all over her again, commenting on her skeleton shirt, making her (and me!) laugh. I hate leaving her in there but they do make it easier. She's got a long day ahead of her. Not your typical Halloween but Sophia seems fine with it. She says she's excited to stay home and give out candy to all the trick-or-treaters. I love this kid. Sent from CaringBridge Mobile

Quite a Turn of Events Jane McCaul, October 31, 2012

Sophia awoke from surgery not feeling well. We knew this immediately because she didn't want to eat. That has never happened. She began crying that she wanted to go home. We tried to comfort her as she lied in bed crying. Finally, we wheeled her up to clinic where she just snuggled on a recliner with me, still refusing to eat.

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Then, while still waiting for chemo to begin, one of the child life specialists came over and told us that there would be trick or treating in the Great Room and that we could go pick out a costume. Sophia suddenly perked up. The costume bin was filled with brand new, beautiful costumes. Not surprisingly, Sophia chose Ariel. She changed into the costume and for the first time all day, she smiled.

We stepped into the Great Room and were shocked to see it filled with staff members all in costumes standing behind rows of tables filled with candy, toys, stuffed animals, crafts and activities. It was more like a Halloweendecorated Christmas! Unbelievable. The pillowcase they gave her for her loot was completely filled by the time we left to head back to clinic.

Sophia had her two different types of chemo and two plates of Mac & Cheese and left clinic a much happier person than she arrived.

Quite a Turn of Events Jane McCaul, October 31, 2012

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Sophia had her two different types of chemo and two plates of Mac & Cheese and left clinic a much happier person than she arrived.

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warm little body curled up against me. When I finally did carry her to bed, I accidentally hurt her while trying to get her into her bottom bunk. I heard her wince and noticed that I had caught her foot between me and the bed. I said "Oh,honey! I'm so sorry!" Half asleep she replied, "It's OK, Mom. I get poked once a week." I kissed her a million times before leaving her. Today she was busy for much of the day creating a book about fairies. Then she payed outside for a while with Grace and Lily (and ended up going to dinner with them! Nice!) It was a pretty great weekend for any kid to have, let alone a child undergoing treatment for leukemia. Every day we get closer to the end of treatment and I always wonder what that's going to feel like. Somehow I don't think it's going to feel much different than now. Maybe the only difference will be that by then I will have stopped being amazed on a daily basis. Or maybe not.

November 4, 2012 Jane McCaul Sophia had a great weekend! Thank goodness for higher numbers! She spent most of Saturday at Loyola Blakefield, playing basketball then watching a football game snuggled up in her monkey blanket, wearing her monkey hat. She came home, had dinner then settled in for a night with me while John, Christina and Jack went back out for another Loyola game. We made popcorn and watched Dr. Who. (She was none too pleased to learn that I had watched several episodes without her during the day so I had to back up and watch the last episode of the first series to get her caught up. Then we began series two. Netflix is fabulous!) While watching TV, she fell asleep on the couch but I couldn't move her right away; I was loving the feel of her warm little body curled up against me. When I finally did carry her to bed, I accidentally hurt her while trying to get her into her bottom bunk. I heard her wince and noticed that I had caught her foot between me and the bed. I said "Oh,honey! I'm so sorry!" Half asleep she replied, "It's OK, Mom. I get poked once a week." I kissed her a million times before leaving her. Today she was busy for much of the day creating a book about fairies. Then she payed outside for a while with Grace and Lily (and ended up going to dinner with them! Nice!) It was a pretty great weekend for any kid to have, let alone a child undergoing treatment for leukemia. Every day we get closer to the end of treatment and I always wonder what that's going to feel like. Somehow I don't think it's going to feel much different than now. Maybe the only difference will be that by then I will have stopped being amazed on a daily basis. Or maybe not.

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Quick update Jane McCaul, November 7, 2012

Sophia is still doing extremely well! She is with me today at work and is quite busy! Presently, she is preparing "backstage passes" for the concert she is performing tonight at home. It's called "Beara Chicago." To answer your question, I have no idea.

Being the tough cookie that she is, Sophia is totally crushing our 10 day Real Food Challenge! (http://www.100daysofrealfood.com/take-the-10-day-pledge/) Granted, we are only on day 3 but she hasn't asked for mac & cheese or an english muffin since we began. That is huge for her! Her diet actually has not changed that much; she still eats almost everything she ate before, just not the processed foods. After 10 days, I'm fairly certain she will want to go back to the occasional mac & cheese and english muffins, etc. and that's fine. I just wanted to raise awareness in hopes that they will continue to make more conscientious choices with regard to food and their health.

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to eat another Ritz cracker in his life: "Do you SEE how many things are in here?!" He changed his challenge from 10 days to 18 days ~right up to Thanksgiving. But I have a feeling this new awareness of real food might just linger a little longer with him. And I couldn't be more excited.

Sophia goes in for chemo on Friday but it's a short visit ~ just blood draws then chemo, no OR time. Hopefully, numbers will continue to improve and we can keep on keeping on!

Quick update Jane McCaul, November 7, 2012

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Interestingly enough, the person who has been most positively affected by this has been Jack. He is reading the ingredients of every packaged item we have in our house and has informed me that he never wants to eat another Ritz cracker in his life: "Do you SEE how many things are in here?!" He changed his challenge from 10 days to 18 days ~right up to Thanksgiving. But I have a feeling this new awareness of real food might just linger a little longer with him. And I couldn't be more excited.

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Sophia goes in for chemo on Friday but it's a short visit ~ just blood draws then chemo, no OR time. Hopefully, numbers will continue to improve and we can keep on keeping on!

Sophia's Got Talent Jane McCaul, November 10, 2012

Sophia definitely has a future in performing. Beara Chicago was FANTASTIC! It was a concert starring one of Sophia's Build-A-Bears. This bear sang 4 new songs complete with four different wardrobe changes. She had created a beautiful set design. The stage was beautiful. The concert was spectacular!

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A half hour before the show Sophia called me into her room and asked me if she could record me singing 4 songs she had created. Sure, why not. I would like to point out that there was no music accompaniment and no specific tune. I was on my own with these lyrics. But she had taken the time to write these songs so I couldn't let her down. During the concert began, we all laughed, clapped and had a great time! I only wish I had thought to take pictures! (I must have been anxious about my singing.) When it was over both Christina and Jack agreed that, despite Sophia's great teaching ability, they wanted to participate in more Beara Chicago concerts and less school.

The next day Sophia had another experience on stage. She took part in a photo shoot by Flashes of Hope, a nonprofit organization that takes beautiful photos of children with cancer. She had the whole experience ~ makeup, lights, posing to music ~ everything. The photographer asked her many times if she had experience. He told her she was a natural. Right after we left, a camera crew from the show The List came by to do a segment on the show. They ended up using a few photos of us from the shoot so Sophia was able to see herself on TV Thursday night. The best part about the experience is that we will be given a CD with all the photos.

Clinic yesterday went well. Sophia's ANC is now 4200. Wow! They will continue to increase the dose so we are told to expect the usual side affects (weak legs, warbly voice, droopy eye lids, drop in ANC) so I guess we'll see.

We relaxed last night after such a busy week with a pizza and TV night! Sophia made the pizza and Jack said it was the best yet! So if the teaching, performing or modeling doesn't work out, my baby will make a great chef!

Sophia's Got Talent Jane McCaul, November 10, 2012

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1D Mania Jane McCaul, November 16, 2012

I only wish there was an audio to go with this visual.

As you may or may not know, One Direction was on the Ellen DeGeneres show yesterday. We recorded the show since we would not be home in time to watch it. As soon as we arrived home, Sophia ran to the TV and turned on the show. That's when the screaming began.

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I'm not sure what was even said during the entire interview, the interaction with fans, or the subsequent performance. Sophia was louder than all of them.

After dinner the recorded show was turned on once again so that Christina could see it. Crazy times two. And I'm pretty sure there were tears.

Having been born in 1970, I did not live through Beatle-mania. I only know what I saw on documentaries. I'm fairly certain that what I witnessed yesterday has got to be pretty darn close. I kept watching Sophia and thinking, "She is going to be absolutely exhausted."

Sure enough, she was sound asleep by 7:00pm, all snug in her bed, while visions of Harry Styles undoubtedly danced in her head.

1D Mania Jane McCaul, November 16, 2012

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I only wish there was an audio to go with this visual.

I'm not sure what was even said during the entire interview, the interaction with fans, or the subsequent performance. Sophia was louder than all of them.

After dinner the recorded show was turned on once again so that Christina could see it. Crazy times two. And I'm pretty sure there were tears.

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Sure enough, she was sound asleep by 7:00pm, all snug in her bed, while visions of Harry Styles undoubtedly danced in her head.

Clinic Jane McCaul, November 19, 2012 We are back at clinic today. Sophia's numbers are pretty good ~ although, her ANC has dropped to 2160. They will continue to increase one of the chemo doses today so we suspect that number may continue to drop. We were hoping that Sophia would be able to start back to school on December 3rd. However, if her ANC is too low on our next visit, November 30th, we may have to postpone her return to school. While waiting to be seen earlier today, we were chatting with the social worker, Lori. Shortly thereafter, Sophia was called back and when she walked away I overheard a teen-aged patient remark to Lori, "She's such a happy kid." Lori replied, "She absolutely is. How awesome is that?" Pretty Awesome. Sent from CaringBridge Mobile

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While waiting to be seen earlier today, we were chatting with the social worker, Lori. Shortly thereafter, Sophia was called back and when she walked away I overheard a teen-aged patient remark to Lori, "She's such a happy kid." Lori replied, "She absolutely is. How awesome is that?" Pretty Awesome. Sent from CaringBridge Mobile

Our Little Turkey Jane McCaul, November 24, 2012

We hope everyone had a blessed Thanksgiving. We certainly did; there was obviously much to be thankful for this year.

Sophia began Thanksgiving day with a Turkey Trot! We never would have believed that was possible a few months ago. This trot was organized by our friends Mary & Neal Adkins. It took place in our neighborhood which was great because there was an option of a one mile Fun Run or a 5K. Sophia chose the Fun Run

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followed by hot chocolate and pumpkin muffins. Perfect.

We had a very enjoyable dinner at our home with all the fabulous McCauls. The fun continued through Friday with lots of laughs, outside playing and a trip to the movies. After the fun was over, Christina and Sophia had a little fun of their own, One Direction style. We thought you might enjoy the entertainment: http://www.youtube.com/watch?v=yYZZWiLv0nQ

Once again, we thank you for your thoughts and prayers. It's truly amazing what an impact they have had on our little turkey.

Our Little Turkey Jane McCaul, November 24, 2012

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We hope everyone had a blessed Thanksgiving. We certainly did; there was obviously much to be thankful for this year.

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Once again, we thank you for your thoughts and prayers. It's truly amazing what an impact they have had on our little turkey.

Brave Jane McCaul, November 30, 2012 Sophia is in surgery right now and the John has learned that I’m not a good conversationalist during this time. All I can do is pray, read or write until they come out and say, “Come on back. It’s over. She did great.” Then I breathe a sigh of relief and become my chatty self again. So until they come through those doors, I’ll distract myself writing about a recent realization regarding Sophia. (So funny~ she and I were just talking about alliteration! But that’s not what this is about.) On a recent Friday evening, John and I found ourselves alone with Sophia for the night. We decided to do a pizza movie night. Sophia chose the Disney movie Brave. She had seen the movie in the theatre over the summer and if you’ve ever had the pleasure of watching a movie with Sophia that she has already seen, you usually end up knowing all the funny lines and the ending before you are 5 minutes into the movie. So John and I asked her to please not tell us anything. She promised to stay quiet but she did want to clarify that Merida has a Scottish accent and “when she says she wants to ‘change her feet,’ she’s really saying she wants to change her fate.” We thanked her for the clarification and moved on. Merida says: “Some say our destiny is tied to the land, as much a part of us as we are of it. Others say fate is woven together like a cloth, so that one's destiny intertwines with many others. It's the one thing we search for, or fight to change . . .” That’s how it began. And throughout the course of the movie I realized that my little girl was much less like the Rapunzel she had fantasized about being just last year, and much more like the spunky Merida, fiercely determined NOT to be limited by anything. We were told so many things when given Sophia’s diagnosis: she will feel incredibly ill, she probably wont feel well enough to play outside, she probably won’t be able to go away this summer, she won’t feel well enough to begin school in late August, she will feel depressed, angry . . .the list goes on. Needless to say, Sophia was not pleased with any of this news. She fought to change. While she has felt ill from time to time, she has not let it stop her. She did leave her house to play outside. She did visit a beach in June, another in July and another in August. She did begin school with her classmates and stayed until we decided her numbers were too low to chance an infection. She did come out of a surgery feeling awful only to go trick or treating an hour later and then again that night!

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She is strong-willed. And just as it did in the movie, it can make a mother crazy. I’m not even going to draw the parallels between Merida’s mother and me, especially when she “transforms;” it hits a little too close to home on grumpy days. But let’s just say, I listen to Sophia now with regard to her capabilities and try to I take cues from her as to what she can/can’t do. More importantly, I realize I am less worried about her now. She will be fine. And if she’s not, she will fight to become fine. At the end of the movie, it may be Merida’s voice speaking but I can hear Sophia’s voice loud and clear: “Some say fate is beyond our command, but I know better. Our destiny is within us. You just have to be brave enough to see it.” I’ve now seen the movie more than once but it gets me every time.

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We were told so many things when given Sophia’s diagnosis: she will feel incredibly ill, she probably wont feel well enough to play outside, she probably won’t be able to go away this summer, she won’t feel well enough to begin school in late August, she will feel depressed, angry . . .the list goes on. Needless to say, Sophia was not pleased with any of this news. She fought to change. While she has felt ill from time to time, she has not let it stop her. She did leave her house to play outside. She did visit a beach in June, another in July and another in August. She did begin school with her classmates and stayed until we decided her numbers were too low to chance an infection. She did come out of a surgery feeling awful only to go trick or treating an hour later and then again that night! She is strong-willed. And just as it did in the movie, it can make a mother crazy. I’m not even going to draw the parallels between Merida’s mother and me, especially when she “transforms;” it hits a little too close to home on grumpy days. But let’s just say, I listen to Sophia now with regard to her capabilities and try to I take cues from her as to what she can/can’t do. More importantly, I realize I am less worried about her now. She will be fine. And if she’s not, she will fight to become fine. At the end of the movie, it may be Merida’s voice speaking but I can hear Sophia’s voice loud and clear: “Some say fate is beyond our command, but I know better. Our destiny is within us. You just have to be brave enough to see it.” I’ve now seen the movie more than once but it gets me every time.

Update Jane McCaul, November 30, 2012

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Great news: Surgery and chemo went well and Sophia feels great, a little tired but great.

Even better news: She now has her ears pierced again!

OK, I'll back up a bit. October 2011, we took Sophia to get her ears pierced and it was nothing short of a nightmare. The process took 2 hours start to finish and was laden with plenty of tears. When it was all over Sophia was one happy, exhausted little girl and talked me into purchasing dozens of new earrings for her to wear.

As time went on, she refused to change her earrings for fear that it, too, would hurt. So she kept those same earrings in for months, doing the obligatory turn every so often. The other earrings sat, gathering dust in the jewelry box.

Lacrosse season rolled around she was told she had to remove the earrings during the games. After the first game she did not want to put the earrings back in "until the season is over. I can't go through putting them in

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and out all the time."

Sophia played exactly 3 games before her diagnosis and hospitalization. The earrings never went back in and when we finally thought to check over the summer, the holes had appeared to have somewhat closed. She wouldn't let me near them to even try.

We found her stash of earrings the other day and I suggested she let me try to get the earrings back in after a surgery, while she was under. She agreed.

That was the plan for today only she woke up after I got the first one in and wouldn't let me touch the other one. Thankfully, a brilliant nurse suggested we try the numbing cream we use on her port. So, a little later, while she was lying comfortably in clinic getting her chemo, she allowed me to numb her ear and it went in easily. Success!

It reminded me of what the doctor had said in the OR earlier. He had administered the Happy Juice and Sophia, laughing, remarked, "I feel like I'm floating." We all laughed and he said, "No matter what else happens today, it's a good day."

Update Jane McCaul, November 30, 2012

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Great news: Surgery and chemo went well and Sophia feels great, a little tired but great.

Even better news: She now has her ears pierced again!

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and out all the time."

We found her stash of earrings the other day and I suggested she let me try to get the earrings back in after a surgery, while she was under. She agreed.

Holy Generosity! Jane McCaul, December 2, 2012

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Last night we had the pleasure of attending the Friends Foundation Holiday Party at the Lowes Hotel in Annapolis. This Foundation is made up of a group of friends who raise tons of money for various organizations in the area. They have donated to the Make A Wish Foundation in the past and this year decided they wanted to do it again but specifically for Sophia's wish. (Make a Wish had granted Sophia her wish, a Disney Cruise, which will probably happen this summer.) So our family was invited to the gala to tell Sophia's story.

The kids had a great time mingling with family, friends, Foundation members and Make a Wish representatives. Jack had a blast during the Silent Auction bidding on every sports item he could find. (John and I were sweating it for a while there.) In the end, he did win MD basketball tickets. Not because he was the highest bidder, but because one of the very kind foundation members took a liking to Jack and won the item for him. Sophia also won an item. She wrote her full name on the bidding list so I'm fairly certain no one else had the heart to outbid the kid with cancer. Hers was the first and final bid.

An hour or so into the party, Sophia began to feel tired and fell asleep for a little while. Unfortunately, she missed the best part: Jack was cutting it up on the dance floor! He was hilarious. Later in the evening he was even called up on stage but he missed it because he was in the silent auction room monitoring his bids.

Following the live auction portion of the evening, we were asked to come forward to be introduced. John spoke

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about our family, Sophia's journey and the overwhelming feeling of gratitude we have felt throughout this journey ~ to family, friends, acquaintances and even total strangers who have shown such generosity. His words were beautiful, heartfelt and powerful. So much so, that after he spoke, another donation request was made for next year's wish and an enormous amount of money was raised ~ enough for two wishes!

Later as the five of us were winding down in our hotel room, recalling all the fun, John asked the kids to remember how generous everyone has been to us. The kids agreed and said they should write thank you cards but John said, "Yes, that's nice but that's not what I meant. I want you to remember this generosity . . . in hopes that you might be able to do this for others when you get older. Be generous."

Earlier that night, when speaking to the group about the incredible generosity bestowed upon our family, John quoted the Ignatian prayer:

Lord, teach me to be generous. Teach me to serve you as you deserve; to give and not to count the cost, to fight and not to heed the wounds, to toil and not to seek for rest, to labor and not to ask for reward, save that of knowing that I do your will.

I honestly believe our children will remember all of this. Today when driving in the car with Jack and Christina, Jack said, "I really had fun last night. I'm so glad we were at the party. It felt like everyone knew me. I felt special." Blinking back tears I said, "You are special. I hope you always know that."

During that same car ride he said, "I think I know what I want to be when I grow up." I asked what it was and waited for the usual sports profession response but he said, "I want to be a Make a Wish guy. I want to make kids happy."

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I never would have believed that a cancer diagnosis could have such a positive affect on our family. But it most certainly has.

PS~ Please say a little prayer for Sophia as she starts back to school tomorrow! (Actually if you could throw one in there for me that would be great; I'm a little nervous about it and have a feeling I might not sleep so well tonight.)

Holy Generosity! Jane McCaul, December 2, 2012

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Following the live auction portion of the evening, we were asked to come forward to be introduced. John spoke about our family, Sophia's journey and the overwhelming feeling of gratitude we have felt throughout this journey ~ to family, friends, acquaintances and even total strangers who have shown such generosity. His words were beautiful, heartfelt and powerful. So much so, that after he spoke, another donation request was made for next year's wish and an enormous amount of money was raised ~ enough for two wishes!

Earlier that night, when speaking to the group about the incredible generosity bestowed upon our family, John quoted the Ignatian prayer:

Lord, teach me to be generous.

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Teach me to serve you as you deserve; to give and not to count the cost, to fight and not to heed the wounds, to toil and not to seek for rest, to labor and not to ask for reward, save that of knowing that I do your will.

I never would have believed that a cancer diagnosis could have such a positive affect on our family. But it most certainly has.

Back to School Jane McCaul, December 4, 2012

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Sophia's return to school was a success! Of course, it certainly helps when you have extraordinary teachers and a school filled with friendly, loving children. She came home happy and full of stories about her fun day.

And so we celebrated this milestone. We went to dinner at one of Sophia's favorite restaurants, La Palapa. (I was relieved that she didn't go with John's suggestion of taquitos and slurpees from 7-Eleven.)

We did a lot of laughing at dinner which is evident in the picture. The most fun, however was when John and I began to dance together to the Mexican music. It wasn't the dancing so much as the kids' horrified faces and pleads for us to sit down that made it such fun. Good times.

Back to School Jane McCaul, December 4, 2012

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Clinic Jane McCaul, December 10, 2012

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We are at Clinic today and just got the results of the blood draws. Her ANC dropped to 1390 as a result of all the chemo but it's above 750 so she will probably be able to continue treatment for today. We are awaiting the results of her liver numbers to make sure. Sophia had a busy weekend! Saturday she came to work with me and attended the "Cookies with Santa" event. (She's become a minor celebrity among the Security Guards at the Hackerman-Patz House; they are always so excited to see her.) She then played at her cousins' house, went to Jack's basketball game, then went back to her cousins' for a sleepover. Whew! Big day! On Sunday, Sophia, her friend Ceci and I went to lunch then attended the Little Mermaid, Jr. put on by the Children's Playhouse of MD. What fun! The show was very well done and we were able to see Christina's friend Claire in the production. All three of us had a great time. It looks like another busy week ahead. Friday night is the Christmas concert at school and we can't wait to see our little angel singing with the choir. The show is always beautiful and I usually cry but I have a feeling this year will be even more emotional for me. I'll be sure to have plenty of tissues on hand. Sent from CaringBridge iPhone app

Clinic

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Jane McCaul, December 10, 2012

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Slight turn of events Jane McCaul, December 10, 2012 So . . . this dose of chemo may have proven to be too much for our sweet girl. From the moment we arrived home at 2pm, Sophia began to feel ill. She spent the entire afternoon on the couch. She slept through dinner, awoke around 6:30 and began vomiting shortly thereafter. Her temperature has fluctuated throughout the evening but her fever has not elevated beyond 99.3 so hopefully we won't be going to the hospital tonight. She will definitely remain home from school tomorrow. She's back to sleep again and I'm praying she has a restful night's sleep. I suppose we had all forgotten how bad it sometimes gets. Sent from CaringBridge iPhone app

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Jane McCaul, December 12, 2012 Sophia is home from school again today. She had a slight fever last night (99.2) and is still pretty tired. Fortunately, most of the nausea is gone. I will be home by lunchtime to snuggle my girl.

On a good note ~ I came home yesterday to a happy little girl, a clean house and clean, folded laundry. Yea, Nanny!

Quick update Jane McCaul, December 12, 2012 Sophia is home from school again today. She had a slight fever last night (99.2) and is still pretty tired. Fortunately, most of the nausea is gone. I will be home by lunchtime to snuggle my girl.

On a good note ~ I came home yesterday to a happy little girl, a clean house and clean, folded laundry. Yea, Nanny!

99.6 :( Jane McCaul, December 12, 2012 Urgh! If her temp gets to 100.3 we are back in the hospital. I'm sitting here repeating the Memorare while Sophia is in her room busily preparing for "school" tonight. (John, Christina & Jack: Yes, apparently we are having school tonight at 6:30 and attendance is mandatory. If she can do lesson plans with a fever, we can participate with smiles on our faces.)

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Nana and St. Lucy to the rescue! Jane McCaul, December 13, 2012

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Once we got to the hospital, her temperature had decreased a little but she still had a fever. We were brought to a room where Sophia could lie down with a new Christmas blanket (Thank you, Project Linus!) and watch TV. They finally accessed her port, drew blood and we waited. I climbed in bed with Sophia and we slept while John sat answering questions from doctors and nurses. At some point after midnight her bloodwork came back and actually looked great. Her ANC had risen since Monday . . . to 3500! That was a big surprise. Since she only had a slight fever, they decided not to administer antibiotics. So, a little after 1am we were told we could go home. They checked her temp again it it had decreased even more . . . to normal range! I was beginning to believe that our thermometer might just have been off, reading too high. Out of curiosity, I took her temp when we got home and it read 98.6. Unbelievable. I was still marveling about the spike in fever followed by the sudden decrease in temperature when my friend Tory called this morning. She was calling to wish us a happy St. Lucy's Day. She knows the feast day is an important one in our family. My grandmother was named after St. Lucy and she and Sophia had a special little bond. As I was telling Tory about last night she remarked that things began to turn around after midnight, on St. Lucy's feast day. That maybe it was Nana looking out for Sophia. Whoa, pretty cool. Sophia is determined to go to school tomorrow. It's the Christmas program and she is the Angel. Plus, it's pizza Hot Lunch. Two extremely important things to Sophia. We told her if she has no fever today or tomorrow morning she can go. I'm thinking that if Nana has anything to do with it, Sophia will be enjoying her pizza hot lunch tomorrow and singing with the choir as the cutest little bald angel ever.

Nana and St. Lucy to the rescue! Jane McCaul, December 13, 2012

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Well, we did end up going to the hospital last night. Sophia's temperature continued inching its way up throughout the afternoon until it hit 100.3 at 8pm. (She taught her classes through the whole thing. I'm sure this sounds familiar to fellow teachers.) We called the oncologist at 8:00 and were expecting to be told to wait an hour and see what happens. But the fact that the temperature was steadily increasing made all of us anxious so we were told to take her in. Once we got to the hospital, her temperature had decreased a little but she still had a fever. We were brought to a room where Sophia could lie down with a new Christmas blanket (Thank you, Project Linus!) and watch TV. They finally accessed her port, drew blood and we waited. I climbed in bed with Sophia and we slept while John sat answering questions from doctors and nurses. At some point after midnight her bloodwork came back and actually looked great. Her ANC had risen since Monday . . . to 3500! That was a big surprise. Since she only had a slight fever, they decided not to administer antibiotics. So, a little after 1am we were told we could go home. They checked her temp again it it had decreased even more . . . to normal range! I was beginning to believe that our thermometer might just have been off, reading too high. Out of curiosity, I took her temp when we got home and it read 98.6. Unbelievable. I was still marveling about the spike in fever followed by the sudden decrease in temperature when my friend Tory called this morning. She was calling to wish us a happy St. Lucy's Day. She knows the feast day is an important one in our family. My grandmother was named after St. Lucy and she and Sophia had a special little bond. As I was telling Tory about last night she remarked that things began to turn around after midnight, on St. Lucy's feast day. That maybe it was Nana looking out for Sophia. Whoa, pretty cool.

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Sophia is determined to go to school tomorrow. It's the Christmas program and she is the Angel. Plus, it's pizza Hot Lunch. Two extremely important things to Sophia. We told her if she has no fever today or tomorrow morning she can go. I'm thinking that if Nana has anything to do with it, Sophia will be enjoying her pizza hot lunch tomorrow and singing with the choir as the cutest little bald angel ever.

The Little Angel that Could Jane McCaul, December 15, 2012

Sophia had a great day in school yesterday. She enjoyed her pizza lunch and performed in the school Christmas program. Christina had an early dismissal so she and I were able to watch the performance. It was beautiful. Just as I expected, she was an adorable angel. After dinner, we went back to school for the nighttime performance as well. All of the children did an amazing job. Nanny and Grampy joined us and we all agreed that the Cherub Choir sounded better than ever. It wasn't Sophia walking onto the stage as the angel, taking her place standing above the Baby Jesus that made me cry. Nor was it the beautiful rendition of "Silent Night" accompanied by the 3rd grade girls, gracefully signing the words to the song. (Kudos to Ms. Julie for the sign language addition!) It was a little while later, when Sophia was sitting down next to her friend Ceci (who played Mary) and I

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watched the two of them smile and laugh while singing "Frosty the Snowman." Thats right about where I lost it. Something so normal just seemed . . . overwhelmingly extraordinary. And I will thank God every day for that moment. Sent from CaringBridge iPhone app

The Little Angel that Could Jane McCaul, December 15, 2012

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It was a little while later, when Sophia was sitting down next to her friend Ceci (who played Mary) and I watched the two of them smile and laugh while singing "Frosty the Snowman." Thats right about where I lost it. Something so normal just seemed . . . overwhelmingly extraordinary. And I will thank God every day for that moment. Sent from CaringBridge iPhone app

Santa & Me Tea Jane McCaul, December 17, 2012

The fun continued into the weekend. Sophia was able to attend Breakfast with Santa" at St. Agnes on Saturday and the "Santa & Me Tea" at the Cool Kids Campaign yesterday. This beautiful image is from the Cool Kids Campaign.

Sophia had a quick clinic visit this morning. They only did blood draws to check her numbers and John and I met with her Oncology team for a meeting/briefing about what's to come for the remaining two years of treatment.

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Her ANC dropped to 880 which will probably rise again the further we get from last week's treatment. But to remain on the safe side, she is staying home at least today and tomorrow, possibly Wednesday. I'd love for her to be able to go in on Thursday and Friday because they are half days and ~ she wants to be in school.

From our meeting with the Oncology team, we have chosen to remain on clinical trials for the duration of Sophia's treatment (maintenance). . . for a couple of reasons. Most importantly, it is through these trials that oncologists have discovered the most effective way of treating leukemia. We are thankful to all those who paved the way for Sophia to have the excellent care and treatment that she has today.

Another reason for remaining on trials is that I am secretly hoping she gets randomly placed in the treatment plan requiring a lower/less frequent dose of medications than that of the standard treatment. I want the least amount of meds necessary to get the job done. But, obviously, I want the job done.

No matter which leg of treatment we are in, Sophia will still have to take one dose of chemo orally each night. Once the maintenance period begins (on the 28th) she will have less than two years to go!

Santa & Me Tea Jane McCaul, December 17, 2012

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December 21, 2012 Jane McCaul

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http://www.facebook.com/CoolKidsFoundation?fref=ts http://www.facebook.com/pages/Light-The-Night-Maryland-Chapter/188729984502001 I love to see her smiling face! It is a constant reminder that life is way too short and that we should spend as much of it as possible smiling and laughing. Speaking of smiling and laughing, we just spent the past 40 minutes playing Sophia's "Monkey Games." She had a different monkey game set up (on a monkey blanket) in each room. We would walk in a line from room to room playing the designated games. We each got a small candy cane for participating and a large candy cane if we won. She's too cute. Now that school is out and most of the hustle and bustle is over, we can relax, look forward to Christmas and celebrate it the way it is intended to be celebrated ~ with love and gratitude. We are truly grateful for the many, MANY gifts with which we have been blessed this year ~ the most important being the unwavering love and support of a wonderful family and friends. I feel like I know exactly why those Whos down in Whoville were singing on Christmas morning. I'm fairly certain that if we all really understood Christmas . . . completely . . . . that our hearts would just burst. I pray I remember this feeling Tuesday morning after our lovely breakfast ~ when the living room floor is covered in wrapping paper, the room is a mess and we're trying to get out the door to NJ with presents and everything else. In all the chaos, I hope I remember to look at each one of our three miracles and whisper another prayer of gratitude to God. It really is a wonderful life. Much love and a very Merry Christmas to all.

December 21, 2012 Jane McCaul

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What a crazy, busy, fun-filled week! Sophia spent time with Nanny & Grampy, wrapped gifts, baked her favorite Lemon Snowflake cookies, attended school Thursday and Friday and also managed to grace the pages of two fabulous organizations with her beautiful smile. Her photo is being used as the profile picture on the Cool Kids Campaign Facebook page as well as that of the Light the Night MD chapter. http://www.facebook.com/CoolKidsFoundation?fref=ts http://www.facebook.com/pages/Light-The-Night-Maryland-Chapter/188729984502001 I love to see her smiling face! It is a constant reminder that life is way too short and that we should spend as much of it as possible smiling and laughing. Speaking of smiling and laughing, we just spent the past 40 minutes playing Sophia's "Monkey Games." She had a different monkey game set up (on a monkey blanket) in each room. We would walk in a line from room to room playing the designated games. We each got a small candy cane for participating and a large candy cane if we won. She's too cute. Now that school is out and most of the hustle and bustle is over, we can relax, look forward to Christmas and celebrate it the way it is intended to be celebrated ~ with love and gratitude. We are truly grateful for the many, MANY gifts with which we have been blessed this year ~ the most important being the unwavering love and support of a wonderful family and friends. I feel like I know exactly why those Whos down in Whoville were singing on Christmas morning. I'm fairly certain that if we all really understood Christmas . . . completely . . . . that our hearts would just burst. I pray I remember this feeling Tuesday morning after our lovely breakfast ~ when the living room floor is

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covered in wrapping paper, the room is a mess and we're trying to get out the door to NJ with presents and everything else. In all the chaos, I hope I remember to look at each one of our three miracles and whisper another prayer of gratitude to God. It really is a wonderful life. Much love and a very Merry Christmas to all.

message from Sophia to the Anonymous Monkey Sender Jane McCaul, December 23, 2012 Dear AMS, Thank you for the monkey Christmas package. I loved the story with left and right.Jack had his eye on one but it kept moving.i got jumpin' monkeys.We all played all of the games yesterday.

BLESS THE MONKEYS OF THE JUNGLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SOPHIA

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BLESS THE MONKEYS OF THE JUNGLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SOPHIA

A special intention request Jane McCaul, December 24, 2012 Throughout Sophia's journey with Leukemia we have turned to this site to ask for prayers. We truly believe that prayers have helped not only Sophia's healing but the mental/spiritual attitude of all of us. And once again, we are incredibly grateful. We couldn't ask for a better outcome so far.

Sometimes however, despite the amount of prayer, things don't always turn out the way people had hoped. I know how heartbroken and devastated I would feel if Sophia were not with us today. I ask that you keep in mind the families of children like Sophia who have lost their battle with illness. These families struggled for months, sometimes longer only to lose their loved ones. This Christmas will surely be difficult to say the very least.

I ask an extra special intention for the family of a beautiful girl named Kaitlyn. Kaitlyn lost her battle with Lymphoma a few mere weeks before Sophia was diagnosed. I have thought of Kaitlyn and her family a lot throughout Sophia's journey but I have thought of them almost constantly over the past few days. I cannot begin to imagine the sadness of having to celebrate this Christmas without their girl.

So while at Mass or services tonight or tomorrow, when it comes time for intercessions, please remember

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Kaitlyn's family and the families of all the beautiful little angels in Heaven. Please pray that these families are granted the solace they so deserve. Thank you so much!

So while at Mass or services tonight or tomorrow, when it comes time for intercessions, please remember Kaitlyn's family and the families of all the beautiful little angels in Heaven. Please pray that these families are granted the solace they so deserve. Thank you so much!

Clinic/Good news

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Jane McCaul, December 28, 2012 First, the great news: Sophia was randomly placed into the arm of treatment that we were hoping for which is the lowest dosage at the farthest intervals. She will still have weekly blood draws and daily oral chemo but the big stuff will be every 12 weeks instead of every 4. Yea!!

We went in this morning to begin day one of maintenance. We did the blood draws and waited for results before beginning the chemo. We were happily playing Tetris on the Wii when they came in and informed us that she would not begin treatment today because her ANC was too low (off by only 20 points!) Honestly, I wasn't concerned that treatment would now be delayed a week. Rather, my first thought was: Good, now she'll feel well for our weekend at the beach. Is that wrong?

So, we are off to the beach. We got the thumbs-up for ice skating and swimming (indoors, obviously) so we are all set! Have a great weekend! Sent from CaringBridge Mobile

Clinic/Good news Jane McCaul, December 28, 2012 First, the great news: Sophia was randomly placed into the arm of treatment that we were hoping for which is the lowest dosage at the farthest intervals. She will still have weekly blood draws and daily oral chemo but the big stuff will be every 12 weeks instead of every 4. Yea!!

So, we are off to the beach. We got the thumbs-up for ice skating and swimming (indoors, obviously) so we are all set! Have a great weekend!

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Sent from CaringBridge Mobile

Happy New Year Jane McCaul, January 1, 2013

Happy New Year to everyone! from Sophia and Harry

Happy New Year Jane McCaul, January 1, 2013

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Happy New Year to everyone! from Sophia and Harry

Maintenance Jane McCaul, January 5, 2013 Sophia began day one of Maintenance this past Wednesday. She takes 3 Dexamethasone (steroid) pills each morning and 3 more each evening. In addition to this, she also takes Mercaptopurine (oral chemo) every night and Methotrexate on Tuesdays. The Mercaptopurine will continue every night throughout Maintenance. Fortunately, she only has to do the Dex and Methotrexate for one week every 12 weeks. But this has been a long week. We had forgotten how much we all dislike the steroids. Sophia is on an emotional roller coaster and all I can do is try to comfort her with hugs and kisses. I certainly don't mind that part of it, but the highs and lows are tough for all of us. Early in the week before the side effects had even begun, I mentioned to John that I didn't understand why we were so incredibly tired; we were getting enough sleep. He reminded me that having a child with cancer is stressful. There's always something to be concerned about. He had the greatest analogy~ He said: It's like we've just finished a triathlon and then we're told, "Great, now you have another one right now. But you can take it easy during this one." We keep thinking we are over a tough phase only to find another phase, which may be totally different but

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equally as challenging. If we are tired, I know Sophia must be exhausted. But right now we're sitting together on the couch and when I just asked her how she's feeling, she raised her hand from under the blankets and gave me a thumbs up. She even played two back-to-back basketball games this morning! Again, Sophia McCaul is my hero.

Super Sister Jane McCaul, January 9, 2013 In case you have not seen Christina's video on the Team Sophia McCaul Facebook page, I wanted to share it with you.

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Christina created this video as part of a service project for school. She wanted to document some of the fundraising and just plain FUN that we all experienced raising money for the Leukemia & Lymphoma Society through the Light the Night Walk in October.

It's beautifully done and captures our Light the Night experience perfectly. After the Walk, Sophia had said, "This was one of the best nights of my life." Please take a moment to watch and see why:

http://www.youtube.com/watch?v=WByuR5tNivg

We can't wait for the next Walk! We hope you can join us!

Super Sister Jane McCaul, January 9, 2013 In case you have not seen Christina's video on the Team Sophia McCaul Facebook page, I wanted to share it with you.

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It's beautifully done and captures our Light the Night experience perfectly. After the Walk, Sophia had said, "This was one of the best nights of my life." Please take a moment to watch and see why:

http://www.youtube.com/watch?v=WByuR5tNivg

We can't wait for the next Walk! We hope you can join us!

January 11, 2013 Jane McCaul Sophia will turn 8 years old on Monday. As I wrote that sentence I noticed I made an audible sigh. I suppose it's relief. She has been doing well with treatment, we are now in maintenance and I know she will be OK. These are all good things; things that certainly make me feel relieved. But I tend to think it's something more. Maybe I sigh because my baby is turning 8 and like most moms, this is a time to reflect back on the life your child has lived so far. And that, obviously, is a bit more difficult for me this year. I look at pictures of her last birthday and see a sweet girl perched upon her brand new bike with her long, dark-blond hair, full of excitement and anticipation. That makes me feel a little sad. Not because she only got to ride the bike at the park once before she was diagnosed (or the fact that I ran from store to store for days on my lunch hour trying to track down this bike.) I think itâ&#x20AC;&#x2122;s because . . . in this picture she had no idea, we all had no idea of the reality of what this new year of her life would be like. How could we know then that this was the year that she would have to grow up very quickly, experience emotional and physical pain that no 7 year old should have to experience? I remember what Jack said about every happy picture of us before the diagnosis somehow seeming sad now. As if that part

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It could also be trepidation. You may already know this about me, but not having a concrete plan is a definite challenge for me. So you can imagine how difficult it is not knowing what will happen to Sophia this year, next year or ten years down the road. On most days I can pray my Peace Within prayer and feel reassurance but I suppose a birthday has a tendency to bring those fears right to the surface.

Or maybe it's pride. My baby girl has gone through the toughest year of her life and has shown the world that she is strong, funny, smart, sweet, determined and looks beautiful with a bald head. I know for certain that if I had to go through what she has gone through, you would not be able to say the same about me. Especially the bald head part. Dear Lord what a disaster that would be. Iâ&#x20AC;&#x2122;m also proud of Christina and Jack. These two are holding up extremely well despite having to often play second fiddle. So I suppose there are a lot of reasons for the sigh. But there are even more to reasons to rejoice. Sophia McCaul will turn 8 years old on January 14, 2013. How fabulous is that?!

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CaringBridge Bringing family, friends and loved ones together when it matters to think it's something more. Maybe I sigh because my baby is turning 8 and like most moms, this is a time to reflect back on the life your child has lived so far. And that, obviously, is a bit more difficult for me this year. I look at pictures of her last birthday and see a sweet girl perched upon her brand new bike with her long, dark-blond hair, full of excitement and anticipation. That makes me feel a little sad. Not because she only got to ride the bike at the park once before she was diagnosed (or the fact that I ran from store to store for days on my lunch hour trying to track down this bike.) I think itâ&#x20AC;&#x2122;s because . . . in this picture she had no idea, we all had no idea of the reality of what this new year of her life would be like. How could we know then that this was the year that she would have to grow up very quickly, experience emotional and physical pain that no 7 year old should have to experience? I remember what Jack said about every happy picture of us before the diagnosis somehow seeming sad now. As if that part of our life is gone. So I maybe I sigh with a little bit of sorrow.

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January 15, 2013 Jane McCaul Sophia had a wonderful birthday yesterday! She was able to celebrate at school with friends and at home with family. Typically I'll make the birthday child (and husband) his/her dinner of choice. So last week I asked Sophia what she wanted me to make for her special meal. Her response: Safeway frozen pizza. Any other time I might have tried to persuade her to choose differently. But this year, I'm not at the top of my game. So when Christina and Jack balked at her choice I simply said, "Birthday girl gets to choose. The choice has been made!" And Safeway pizza it was. Followed by a Carvel ice cream cake. Greatest (easiest) birthday dinner ever! Today we went to clinic for blood draws and a spinal tap. All went well. Sophia's ANC was surprisingly good: 2930. So we are letting her go to school tomorrow. It's better for her to be there (with her teachers who are diligent about disinfecting everything) than at home with her sick brother. (Poor Jacko.) At least for the time being anyway. Hopefully, she'll continue to stay well. Thanks for all the birthday wishes! Sent from CaringBridge iPhone app

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dinner ever! Today we went to clinic for blood draws and a spinal tap. All went well. Sophia's ANC was surprisingly good: 2930. So we are letting her go to school tomorrow. It's better for her to be there (with her teachers who are diligent about disinfecting everything) than at home with her sick brother. (Poor Jacko.) At least for the time being anyway. Hopefully, she'll continue to stay well. Thanks for all the birthday wishes! Sent from CaringBridge iPhone app

A new beginning Jane McCaul, January 24, 2013

Sophia celebrated the Sacrament of Reconciliation last night. It was beautiful. She sat a few rows in front of us so all we could see was her cute little head moving up and down as she sang the opening song. John and I kept looking at each other saying, "She's so adorable!" with our eyes.

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After the opening remarks from the priest, who reassuringly spoke of his own nervousness as a child receiving this sacrament, Sophia made her way to the back of the church to the confessional of her choice looking confident and happy. She emerged smiling a little while later and proceeded to the altar to kneel and do her penance. When she was finished, she came back to the pew and sat on John's lap. I whispered, "How was it? Was it nice?" With a really big smile and wide eyes she nodded and said, "Yeah." Then with the same big smile and huge eyes she whispered, "I'm never doing that again."

We were discussing it today, though, with her cousins and I asked them to tell Sophia why they liked participating in the sacrament. Christopher said, "Yeah, it's kinda scary but I'll tell you why I like it. It's so nice to leave there, go home and be able to say: I am sin-free."

Amen, Christopher. There's nothing like a clean slate!

A new beginning Jane McCaul, January 24, 2013

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Amen, Christopher. There's nothing like a clean slate!

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Another busy weekend Jane McCaul, January 26, 2013

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accompanied Sophia up to receive the award. Jack is the team captain for Team Sophia McCaul this year and he is pumped. When the new goal for 2013 was announced, Jack leaned over to me and said, "Can I take out some of my college money for this? We need to raise a lot! Sophia is the Honored Hero this year so we have to do well!" I told him I appreciated his enthusiasm but that he needed to come up with an alternate idea. Hopefully, he will get the fundraising wheels spinning. Any ideas are welcome! Feel free to visit our Team Sophia McCaul page on Facebook to share your ideas. Also, we just set up our new Light the Night Team page for this year. Visit our page for more info about our team: http://pages.lightthenight.org/md/Annapoli/13/TeamSophiaMcCaul We're looking forward to another fun night in October! We are only halfway through this weekend. Tomorrow is the beginning of Catholic Schools week which begins with a Mass at 12:15. Sophia will read the introduction at Mass then sing in the choir. She loves doing all of this but I know it takes a lot out of her. I'm going to suggest that Mass is followed by a siesta before Jack's basketball game tomorrow evening. Who am I kidding, the nap is totally for me. Sent from CaringBridge iPhone app

Another busy weekend Jane McCaul, January 26, 2013

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Sophia began the day with a double-header in basketball which ended up OK but didn't start off that way. Sophia was told she needed to remove her earrings and panicked. She really hates taking them in and out and when we put the monkey earrings in last week, I promised her she could leave them in for as long as she wanted. So we went off to the side and tried to take them out carefully and of course there were tears and a lot of "But you promised . . " and "I just want to go home . . ." I was pretty much running our of ideas when her coach Theresa came over and said, "Would you rather put bandaids over her ears?" Whew ~ crisis averted. Thank you, Theresa! From the games we went to Hunt Valley for the Leukemia & Lymphoma Society's Light the Night 2012 Awards party. It was a beautiful event. Each table had a lovely centerpiece including a little stuffed monkey in honor of Sophia. She was introduced as the Honored Hero for 2013. We had a really nice lunch (with incredibly delicious cake!), watched an inspiring video demonstrating where our donations go, and even received an award for Team Sophia McCaul. We placed 3rd for the top fundraising teams of 2012 in MD, raising over $27,000. The first place team raised over $32,000. Since our 2012 team captain Eileen McCrady couldn't be there, Jack accompanied Sophia up to receive the award. Jack is the team captain for Team Sophia McCaul this year and he is pumped. When the new goal for 2013 was announced, Jack leaned over to me and said, "Can I take out some of my college money for this? We need to raise a lot! Sophia is the Honored Hero this year so we have to do well!" I told him I appreciated his enthusiasm but that he needed to come up with an alternate idea. Hopefully, he will get the fundraising wheels spinning. Any ideas are welcome! Feel free to visit our Team Sophia McCaul page on Facebook to share your ideas. Also, we just set up our new Light the Night Team page for this year. Visit our page for more info about our team: http://pages.lightthenight.org/md/Annapoli/13/TeamSophiaMcCaul We're looking forward to another fun night in October!

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We are only halfway through this weekend. Tomorrow is the beginning of Catholic Schools week which begins with a Mass at 12:15. Sophia will read the introduction at Mass then sing in the choir. She loves doing all of this but I know it takes a lot out of her. I'm going to suggest that Mass is followed by a siesta before Jack's basketball game tomorrow evening. Who am I kidding, the nap is totally for me. Sent from CaringBridge iPhone app

Oops! Jane McCaul, January 28, 2013 Sorry, everyone! It was just pointed out to me that I had the incorrect link to Sophia's Light the Night team page. Here is the correct one:

http://pages.lightthenight.org/md/Annapoli13/TeamSophiaMcCaul

Thanks!

Also, here is a link to the inspiring video we watched on Saturday. I've also posted it on Team Sophia McCaul's facebook page. It's worth watching to show an example of what your donation money is used to fund.

http://focusforwardfilms.com/films/72/fire-with-fire

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We. Love. Doctors. We are so grateful for the Leukemia & Lymphoma Society to provide them with the funding for this research.

Oops! Jane McCaul, January 28, 2013 Sorry, everyone! It was just pointed out to me that I had the incorrect link to Sophia's Light the Night team page. Here is the correct one:

http://pages.lightthenight.org/md/Annapoli13/TeamSophiaMcCaul

Thanks!

http://focusforwardfilms.com/films/72/fire-with-fire

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We. Love. Doctors. We are so grateful for the Leukemia & Lymphoma Society to provide them with the funding for this research.

January 30, 2013 Jane McCaul

Rain rain go away Give us a day like yesterday! Clinic went well yesterday, mostly because we got out early enough to still enjoy the beautiful day. Sophia's ANC dropped to 1350 but the doctors said they are fine with that number because her energy level is high and she looks good. One of her other counts was slightly elevated so we need to monitor certain behavioral/physical signs (warbly voice, difficulty with motor skills, droopy eye lids, stomach pain.) Other than that, the doctors and nurses were very happy with Sophia's progress. They kept saying, "You look great!"

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If all goes well, we won't have to go back to clinic until the 12th. Fingers crossed! Sent from CaringBridge iPhone app

January 30, 2013 Jane McCaul

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Have a Happy Week! Jane McCaul, February 10, 2013 We were just changing Sophia's background on this site when she pointed out that I hadn't written an entry in a while and that I should "get on it." So here we are. Many fun things have happened for Sophia since I last wrote. The highlight was definitely the Ravens winning the superbowl. She was so excited for the game~ preparing posters, decorations, snacks. She made it as far as the power outage then fell asleep. When the Ravens came back after the outage with much less momentum, we weren't blaming it on the loss of power; we knew it was because their good luck charm was asleep! But we let her sleep and they came through on their own. Whew. I did not want to be the one to break the bad news to Sophia had they lost. Quite honestly, I think the reason I couldn't write for over a week probably had something to do with the news we received on Feb 1st. We were told that one of the teens we see at clinic each week had passed away a few days before. We knew he was pretty sick, much sicker than Sophia, but each time we saw him he was usually smiling. I just wasn't expecting it. I suppose it was a jolt back to the reality that I try pretty hard to ignore. Sophia seems healthy and happy so we forget all about cancer. Her nightly chemo meds are an annoyance for her but she's not vomiting, not in pain so it's easy to forget what's really going on here. But I've had time to process it and I realize it's OK. We may not be able to change the crappy things that life will throw at our kids, but we can make sure we give them enough happy things to help get through it. Happy over crappy, I suppose that's my new mantra. Here's to a new week of Happy!

Have a Happy Week! Jane McCaul, February 10, 2013

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We were just changing Sophia's background on this site when she pointed out that I hadn't written an entry in a while and that I should "get on it." So here we are. Many fun things have happened for Sophia since I last wrote. The highlight was definitely the Ravens winning the superbowl. She was so excited for the game~ preparing posters, decorations, snacks. She made it as far as the power outage then fell asleep. When the Ravens came back after the outage with much less momentum, we weren't blaming it on the loss of power; we knew it was because their good luck charm was asleep! But we let her sleep and they came through on their own. Whew. I did not want to be the one to break the bad news to Sophia had they lost. Quite honestly, I think the reason I couldn't write for over a week probably had something to do with the news we received on Feb 1st. We were told that one of the teens we see at clinic each week had passed away a few days before. We knew he was pretty sick, much sicker than Sophia, but each time we saw him he was usually smiling. I just wasn't expecting it. I suppose it was a jolt back to the reality that I try pretty hard to ignore. Sophia seems healthy and happy so we forget all about cancer. Her nightly chemo meds are an annoyance for her but she's not vomiting, not in pain so it's easy to forget what's really going on here. But I've had time to process it and I realize it's OK. We may not be able to change the crappy things that life will throw at our kids, but we can make sure we give them enough happy things to help get through it. Happy over crappy, I suppose that's my new mantra. Here's to a new week of Happy!

Quick clinic update Jane McCaul, February 13, 2013

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All went very well yesterday at clinic. Sophia's ANC jumped up a bit to 1590 and her other numbers have improved as well. Good news all around. We drove straight from clinic to the store so she could buy Valentines for her classmates. She was even feeling well enough later to accompany us to Jack's orthodontist appointment ~ and even go on to teach "art class" after dinner. Art class was fabulous. We all decorated bags for our Valentines and created cards for each other using all sorts of supplies she had laid out for us. At the end of class, Sophia called on each one us to give an opinion about the class which she then wrote on her dry erase board. For me it was easy: Best Class Ever. Sent from CaringBridge iPhone app

Quick clinic update Jane McCaul, February 13, 2013

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she decided she wanted to try to sleep so she came back to bed and slept for another 3 hours. When she tried tried to get up around 9 she said her legs were wobbly. As I tucked her back in my bed she said, "Do you think I have what they had on your show?" "The Spanish flu? No, honey. You don't have the Spanish flu." "How do you know?" "Well, for one thing it's not 1920. And secondly you take a lot of medicine. It's just catching up with you and making you feel sick." I'm happy to report that she's feeling better. She's still in bed but she has eaten Cheerios and toast and was laughing just moments ago. Whew. (John leaves tomorrow morning for the week. We need things to remain steady at least until he comes back!) Peace within. Peace within. Sent from CaringBridge iPhone app

February 16, 2013 Jane McCaul Sophia hasn't been feeling very well the past few days. She is very tired and has had a few bouts of nausea. She barely touched her dinner last night then just snuggled on the couch with me while I got caught up on Downton Abbey. She was sound asleep by 7pm. This morning she called me from the bathroom around 5am. I found her leaning over the toilet. After a while she decided she wanted to try to sleep so she came back to bed and slept for another 3 hours. When she tried tried to get up around 9 she said her legs were wobbly. As I tucked her back in my bed she said, "Do you think I have what they had on your show?" "The Spanish flu? No, honey. You don't have the Spanish flu." "How do you know?" "Well, for one thing it's not 1920. And secondly you take a lot of medicine. It's just catching up with you and making you feel sick." I'm happy to report that she's feeling better. She's still in bed but she has eaten Cheerios and toast and was laughing just moments ago. Whew. (John leaves tomorrow morning for the week. We need things to remain steady at least until he comes back!)

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Peace within. Peace within. Sent from CaringBridge iPhone app

Gratitude Jane McCaul, February 17, 2013 Sophia is MUCH better today. She has "tingly, wobbly" legs but other than that, she's great! She's already in the basement working on lesson plans. Today deserves a long entry in my gratitude journal!

When our friend Laurie from NC came to visit us in May, she brought me a journal (and delicious wine ~ Laurie rocks!) For several months the journal sat unopened. It was difficult enough to find the time to write a CaringBridge entry let alone put pen to paper. But then in January, with thoughts of New Years resolutions, I decided I would use the journal as a gratitude journal. Each day since then, I have written an entry about something for which I am grateful~ often just one sentence, sometimes longer. Today will be a long one.

Speaking of gratitude, I was talking with friends last night and the conversation turned to Lenten sacrifices. I realized that my sacrifices in the past have honestly been a little selfish. Am I really giving up sweets for Jesus or am I hoping to shrink a size during lent? My dear friend Theresa shared this wonderful piece:

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Fast from complaining; Feast on appreciation. Fast from negatives; Feast on affirmatives. Fast from unrelenting pressures; Feast on unceasing prayer. Fast from hostility; Feast on non-resistance. Fast from bitterness; Feast on forgiveness. Fast from self-concern; Feast on compassion for others. Fast from personal anxiety; Feast on eternal truth. Fast from discouragements; Feast on hope. Fast from facts that depress; Feast on verities that uplift. Fast from lethargy; Feast on enthusiasm. Fast from thoughts that weaken; Feast on promises that inspire. Fast from shadows of sorrow; Feast on the sunlight of serenity. Fast from idle gossip; Feast on purposeful silence. Fast from problems that overwhelm; Feast on prayer that [strengthens]. So this Lent, I will read this every day and attempt to fast from worry, fear, discontent and negatives. I will feast on the healing power of God, optimism, and GRATITUDE . . . and the occasional piece of chocolate.

Speaking of gratitude, I was talking with friends last night and the conversation turned to Lenten sacrifices. I

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realized that my sacrifices in the past have honestly been a little selfish. Am I really giving up sweets for Jesus or am I hoping to shrink a size during lent? My dear friend Theresa shared this wonderful piece:

Fast from judging others; Feast on the Christ dwelling in them. Fast from emphasis on differences; Feast on the unity of life. Fast from apparent darkness; Feast on the reality of light. Fast from thoughts of illness; Feast on the healing power of God. Fast from words that pollute; Feast on phrases that purify. Fast from discontent; Feast on gratitude. Fast from anger; Feast on patience. Fast from pessimism; Feast on optimism. Fast from worry; Feast on divine order. Fast from complaining; Feast on appreciation. Fast from negatives; Feast on affirmatives. Fast from unrelenting pressures; Feast on unceasing prayer. Fast from hostility; Feast on non-resistance. Fast from bitterness; Feast on forgiveness. Fast from self-concern; Feast on compassion for others. Fast from personal anxiety; Feast on eternal truth. Fast from discouragements; Feast on hope. Fast from facts that depress; Feast on verities that uplift. Fast from lethargy; Feast on enthusiasm. Fast from thoughts that weaken; Feast on promises that inspire. Fast from shadows of sorrow; Feast on the sunlight of serenity. Fast from idle gossip; Feast on purposeful silence. Fast from problems that overwhelm; Feast on prayer that [strengthens]. So this Lent, I will read this every day and attempt to fast from worry, fear, discontent and negatives. I will feast on the healing power of God, optimism, and GRATITUDE . . . and the occasional piece of chocolate.

February 26, 2013 Jane McCaul

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Clinic today was short but not necessarily sweet.

Sophia's ANC dropped 600 points from the last visit to 700 today. Her liver numbers are also slightly elevated so they want to see her back next week. In the meantime, we are to call if she has any stomach aches, cold symptoms, fever or more bruises. (She had more bruising than usual.)

They were also a bit concerned about her ears. This weekend, I had noticed that she was flinching every time I went near her ear so I looked at her earrings on Sunday (at Mass) and noticed that they didn't look quite right and should come out so we could clean her ears. In trying to get the earrings off, a bit of puss escaped the ear. We cleaned them and she felt immediately better.

The doctors were very interested in this. Puss means infection and she shouldn't get infections. When they expressed this concern, she began to cry. I picked her up, held her and told her we were taking care of it and she would be fine. Then the doctor made me feel better by saying, "Your mommy did the right thing. This could have turned into a big problem if she hadn't got the earrings out and cleaned your ears."

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They reminded us to keep an eye on the ears, watch out for more bruising and be sure to call them for fevers, aches or cold symptoms. Then we were sent on our way.

So we took all of this information and did what any stressed-out girls would do ~ we went shopping.

It's so much better to focus on happy thoughts ~ so when we saw the dress pictured above we had to get it to remind us of the good things ahead. Sophia chose this dress to wear when we board the Disney Dream in August as part of her Make A Wish. Good times certainly are ahead!

So when I buy my Vitamix later, it's to remind us . . . it's so that we will . . . I'll think of something.

February 26, 2013 Jane McCaul

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Clinic today was short but not necessarily sweet.

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They reminded us to keep an eye on the ears, watch out for more bruising and be sure to call them for fevers, aches or cold symptoms. Then we were sent on our way.

So we took all of this information and did what any stressed-out girls would do ~ we went shopping.

So when I buy my Vitamix later, it's to remind us . . . it's so that we will . . . I'll think of something.

March 11, 2013 Jane McCaul Yikes. It's been a while. Sorry! I'll use this lunch break to bring you up to speed.

Sophia is doing well despite another small drop in ANC at clinic last week. She is now at 630, which to me, is way too close to 500 (neutropenia.) To her doctors, it is fairly normal given her treatment plan.

She has good days and tired days. In fact, most every day is a mix of both. She only went to school one day last week (one day was clinic, another was a snow day) so we are hoping for more school attendance this week. However, if she doesn't make it, she doesn't make it. I'm not sweating it. She is there today so that's a plus!

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The weather was beautiful this past weekend and Sophia spent most of it outside. She came inside yesterday for dinner looking absolutely exhausted. I began to wonder if letting her play all day every day was such a good idea. Then John reminded me how good the summer had been for her mentally. "Most cancer kids hibernate for the first few months and all they can do is sit around and think about how sick they are. We didn't do that and and the summer was great for her." He's totally right. And I know her vitamin D level surely must have increased with all that beautiful sunlight!

She was pretty tired this morning. (Weren't we all? Thank you DLS.) I'm fairly certain she will come home from school tired today. No worries, we've got a pretty good routine ~ after dinner we'll cuddle on the couch for a show, read our (present) favorite book again before bed (The Bakeshop Ghost) and discuss a new recipe we'd like to try to make this week.

In my best southern accent: It's all good.

March 11, 2013 Jane McCaul Yikes. It's been a while. Sorry! I'll use this lunch break to bring you up to speed.

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In my best southern accent: It's all good.

March 20, 2013 Jane McCaul Sophia's ANC jumped to 1400! We were thrilled to hear the news at clinic yesterday. Well, some of us were. Sophia had hoped she would have to go inpatient so she could "relax, watch movies, do crafts and play Bingo on Wednesdays. It's awesome in there." No such luck, babe. You'll just have to remain healthy. Now if she could just pass on some of that health to her brother. Jack is sick again! We thought he may have been exaggerating this morning but the vomit on the hallway floor this afternoon suggests otherwise. Never a dull moment in the McCaul household.

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March 23, 2013 Jane McCaul We on our way to the American Girl Fashion Show ... with a slight fever. Sophia seemed a little off this morning so I felt her body and she seemed warm. As I gave her the thermometer to put in her mouth, I had a proud parenting moment when I said, "No matter what this says, you can still do the show and we'll take care of it afterwards." It was 99.6. We got this! If you think of it, send some cooling thoughts our way. The show begins at 10:30 and I believe Sophia is the first girl in the second act. When it's over, we'll spend the rest of the day chilling out. ;)

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What a day! Jane McCaul, March 24, 2013 Sophia had a great time at the Fashion Show ~ we all did.

The venue was beautiful. Each table was set for a delicious tea with each place setting featuring cards about some of the Cool Kids Campaign children. As soon as we sat down, John turned to the woman next to him and said, "I'm sorry; I have to swap cards with you. That's my girl on your plate."

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Sophia looked adorable on the runway. I have exceeded the limit of photos I can post on this site so please visit the Team Sophia McCaul page on Facebook to see pictures.

When the show was over I asked Sophia if she had fun. She nodded her head then added, "I'm tired." She talked excitedly about the experience during the ride home but once we arrived home, she was pretty quiet. I took her temperature and it had risen to 100.0. Within two hours it was 100.1. She was very subdued . . . and we started sweating it. Two more tenths of a point and we might be heading to the ER.

Thankfully, her temp dropped to 99.4 by dinner time. She seemed peppy and back to her usual self. So John and I headed out the door for the Loyola Auction, halfway expecting a phone call from Christina telling us we needed to come home.

That call never came but apparently our good luck had reached it's limit. We came home, kissed our sleeping babies goodnight, and minutes later heard Jack stumble into the bathroom. I learned a few things last night: 1. It is possible to vomit in your sleep. 2. Vomiting in one's sleep is extremely messy. 3. My husband is unfreakinbelievable. (I kinda knew this but it was confirmed last night.)

John not only cleaned the entire mess but then headed to Walgreens where he purchased bleach and 5 new toothbrushes.

Today has been a recovery day ~ for all of us. Jack has spent most of the day on the couch with ginger ale. Sophia has kept busy with crafts and lesson plans, taking breaks as needed. Her temp has not climbed above 99.4 today. John powered through, running errands and updating bracket info. After Mass, Christina and I went grocery shopping and then I did the only thing I can when I'm anxious ~ I made sauce.

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What a day! Jane McCaul, March 24, 2013 Sophia had a great time at the Fashion Show ~ we all did.

Sophia looked adorable on the runway. I have exceeded the limit of photos I can post on this site so please visit the Team Sophia McCaul page on Facebook to see pictures.

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John not only cleaned the entire mess but then headed to Walgreens where he purchased bleach and 5 new toothbrushes.

Update on Sophia Jane McCaul, April 6, 2013 We hope everyone had a wonderful Easter!

I really wish I could continue to post pictures to this site so you could see how sweet Sophia looked on Easter Sunday! (But I can't without deleting past pictures and I don't want to do that.) You'll just have to take my word for it. We had a lot to celebrate that day and had a wonderful time doing so.

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Her spinal tap surgery on the 26th went well~although she did seem to take a little longer than usual to recover. After the surgery we went back up to clinic for more chemo and she was pretty subdued. She lied on the recliner with me watching the Muppet Movie ~again. (It's OK, I'm a sucker for a good musical.) She remained pretty lethargic for the rest of the day. Thankfully, there was only one day left of school before the vacation so she made it in.

Sophia has had a great vacation. She was absolutely exhausted each night but said it was worth it. Two trips to the Inner Harbor, lots of playtime outside with friends and plenty of evening snuggling on the couch with the Brady Bunch and Doctor Who. (I realize I don't need to clarify that we were watching the Brady Bunch and Doctor Who. Snuggling on the couch with all of them would be 1.extremely creepy and 2.incredibly crowded.)

Sophia is presently outside playing with Grace, Lily and Mary in the beautiful sunshine. I've watched them run from the back yard to the front, laughing and shouting. I notice that when Sophia gets tired she sits on the front steps for a few minutes and creates bubbles with her new bubble wand. These enormous bubbles float over the yard and I am inspired by her. I watch her sitting there with her silly sunglasses creating these beautiful bubbles, buying time. Just when I am filled with an overwhelming feeling of sympathy and pride, she hops up from the steps and is gone again.

She's going to be just fine.

Update on Sophia Jane McCaul, April 6, 2013 We hope everyone had a wonderful Easter!

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She's going to be just fine.

April 23, 2013

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Jane McCaul We went to clinic this morning, came home, ate lunch and then crawled into bed. We were both pooped. It's amazing how a clinic visit (no matter how short) can zap your energy. But her numbers were good and the doctors are happy (and we are now well-rested) so all is well.

Sophia has been doing great lately. She only missed one day last week; she was feeling very tired and . . . well . . . I caved. I like having her with me. She reminds me to stay focused on the present. All three of the kids do. When we were all piled up on Christina’s bed the other night, Jack remarked, “This is how it would be if we slept like The Croods.” I thought, “Yes, that would be so nice.” It’s probably why I like camping so much ~ all 5 of us together in one tight space, everyone accounted for and within arms reach. I’m not certain I would love it night after night but every now and then, it’s exactly perfect. John introduced us to what has now become an evening ritual. Each night as we sit down for dinner we have Mindful Dinner time. After we say Grace, we are supposed to take a deep breath, think calming thoughts, and exhale with a smile. Then we look around the table at each person and really "see" the person. Then we can begin to eat. Honestly, I didn't think the kids would go for it every night, especially when there was good food on the table and they were hungry. But I totally underestimated these kids. They are the first to say "Mindful Dinner!" when someone (um . .. me) starts to go for a forkful. This ties in beautifully with my desire to be more present in the moment; it really seems to be working. Sophia receives her First Holy Communion on Saturday. Her cousin Nick does, too, so we are having one big family celebration! This past weekend she and I decided to get a jump on the First Communion party preparations. We sat down at the dining room table to roll cutlery napkins. We just had the knives, forks, ribbon, and napkins spread out in front of us when Sophia hopped up and ran out of the room saying, "I know what will make this even better!" She came back with my phone and turned on the music. She is so right; music makes everything better. We sat working, bouncing up and down in our chairs to the beat and I noticed I was present and happy. But then, I think I became a little too invested in the moment and it got to me. “Catch My Breath” by Kelly Clarkson was on and I watched Sophia as she sat rolling knives and forks in napkins, belting out the lyrics. “Catching my breath, letting it go, turning my cheek for the

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CaringBridge Bringing family, friends and loved ones together when it matters sake of the show Now that you know, this is my life, I won't be told it's supposed to be right Catch my breath, no one can hold me back, I ain't got time for that Catch my breath, won't let them get me down, it's all so simple now”

She wasn't looking at me and that’s probably a good thing. I couldn't hold back the tears. I kept trying to blink them back and nonchalantly wipe my cheeks. I’m pretty sure it went unnoticed by Sophia. But I marked it. I felt it. And I looked right at her and whispered right along with the song, “You helped me see The beauty in everything”

She asked me again recently why I thought she got cancer. I told her I had no idea what caused it but that I honestly felt there was a reason she was given it and that it would serve some purpose for her. I do believe this. Maybe it already has served a purpose. Sophia, through her illness, has brought our family closer together and for that I hope she can feel very proud. Thursday marks the one year anniversary of her diagnosis. We are celebrating by going out for dinner. At first Sophia chose Chik Fil A but we were able to convince her that Amicci's was a better choice (by throwing in dessert at Vaccaro's.) We will have a great night in Little Italy, celebrating everything we have overcome this past year~ so take THAT cancer.

Right now Sophia's literally pulling my arm to go make cupcakes. So we're off! But she wants to say something first: BLESS THE MONKEYS OF THE JUNGLE SOPHIA

LOVE,

P.S. MONKEYS R ADORABLE. AM I RIGHT EVERYBODY?!?!?!?!?!?!?!

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April 23, 2013 Jane McCaul We went to clinic this morning, came home, ate lunch and then crawled into bed. We were both pooped. It's amazing how a clinic visit (no matter how short) can zap your energy. But her numbers were good and the doctors are happy (and we are now well-rested) so all is well.

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CaringBridge Bringing family, friends and loved ones together when it matters “Catch My Breath” by Kelly Clarkson was on and I watched Sophia as she sat rolling knives and forks in napkins, belting out the lyrics. “Catching my breath, letting it go, turning my cheek for the sake of the show Now that you know, this is my life, I won't be told it's supposed to be right Catch my breath, no one can hold me back, I ain't got time for that Catch my breath, won't let them get me down, it's all so simple now”

Right now Sophia's literally pulling my arm to go make cupcakes. So we're off! But she wants to say something first: BLESS THE MONKEYS OF THE JUNGLE SOPHIA

LOVE,

P.S. MONKEYS R ADORABLE. AM I RIGHT EVERYBODY?!?!?!?!?!?!?!

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May 6, 2013 Jane McCaul

Sophia's First Holy Communion celebration was beautiful ~ both the Mass and the family party afterwards. Thank you all for the warm wishes for Sophia and her cousin Nick! It truly was a wonderful day.

Sophia was able to participate in the May Procession and Crowning the following Friday at school and then again at Mass this past Sunday. Are we getting good use out of this dress or what?! As she put the dress on for the third time on Sunday, Christina told her how beautiful it really was to which Sophia replied, "Yeah, if I become a midget, I would love to wear it to my wedding." At that point, Christina shot me that horrified "What the - ?" look she has perfected recently. I responded with my "Just let it go" look. To Sophia I quietly said something along the lines of: "I'm sure we'll be able to find you beautiful wedding dress that looks just like this . . . when you are older . . .and taller . . . because you don't become a midget . . . and I believe the correct term is Little Person."

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Sophia did not go to school today. She woke up feeling miserable and my first thought was that we pushed it with the 11 mile bike ride yesterday. As it turns out, she must have caught a stomach bug. She vomited this morning and had a slight fever but has been doing much better as the day progresses. John stayed home with her and has given me periodic updates that get better each time. Then I received the following text message from Sophia which suggests she might even be a little antsy:

"What should I do? Beara Chicago or Club Awesome? You can decide! It's a vote so vote now! And I'll text you what is going to happen. So vote as many times as you like. You have two hours to vote. You can vote 30 times at the most. Thank you. Sophia PS Pick Club Awesome."

I was really tempted to vote for Beara Chicago since last time I was asked to sing at this particular show. But I thought about the vomiting this morning and figured I should probably go with her preference.

So it looks like our girl has bounced back and the family will be participating in Club Awesome again this evening. I'm sure Christina and Jack will be thrilled . . .and possibly a little confused since there was talk of going to the hospital this morning. I guess we'll just have to chalk it up to Dad's healing power. They say laughter is the best medicine and John is the best at delivering our daily dose ~and then some!

May 6, 2013 Jane McCaul

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Leavin' on a jet plane Jane McCaul, May 17, 2013 Sophia and I are headed to sunny Florida!

When she announced on Monday that she wanted to use her First Communion money to purchase a plane ticket to visit Nanny & Grampy at their condo in St. Pete Beach, I questioned the decision only once. Then I sprang into action making the necessary arrangements.

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times I had been to Disney World. When I was a teenager my Dad probably uttered these very words, "No way. I am not giving you that much money for a pair of jeans. What? France over spring break? Absolutely! Let me sign the permission slip!"

When Sophia was in the hospital last May, my parents offered to take Christina and Jack to St. Pete Beach so that John & I could have time with Sophia and Christina & Jack could do something fun. They visited Winter (the dolphin from Dolphin Tale) at the Clearwater Marine Aquarium and brought back a tee shirt for Sophia. Often when she wore it she would say, "Someday I am going to Nanny & Grampy's condo and I'll meet Winter, too."

So off we go tonight! We've got lots of plans for our short trip but most importantly~ we will visit Winter on Sunday. Another box checked. :)

Leavin' on a jet plane Jane McCaul, May 17, 2013 Sophia and I are headed to sunny Florida!

My Dad says she has inherited the "vacation is a priority" gene. Growing up we had a modest home, never had new cars, etc. But no expense was spared for vacations. I was embarrassed once to tell someone how many times I had been to Disney World. When I was a teenager my Dad probably uttered these very words, "No way. I am not giving you that much money for a pair of jeans. What? France over spring break? Absolutely! Let me sign the permission slip!"

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So off we go tonight! We've got lots of plans for our short trip but most importantly~ we will visit Winter on Sunday. Another box checked. :)

Fabulous Florida Jane McCaul, May 23, 2013 What an absolutely wonderful trip to Florida we had! In fact, Sophia has informed us that we really need to move to Florida now. If it weren't for our close proximity to Johns Hopkins here in Baltimore, I would seriously consider it. That's just me, however. When Sophia asks, "Why doesn't everyone in the world want to live in Florida?" John answers, "June, July and August. That's why."

As I have mentioned before, I have exceeded my photo limit here on Caringbridge so I can't share pictures from the trip. However, I will post a few to the Team Sophia McCaul Facebook page so you can see how much fun she had! (I'll add a few from First Communion as well.)

Sophia really enjoyed meeting Winter on Sunday and by Monday morning was asking to return to the Aquarium. We kept her busy with more pool and beach time instead. When Monday afternoon rolled around, Sophia was very sad to leave (and even sadder to learn that our flight was delayed and we would have a 5 1/2 hour wait in the airport.) But we made the most of it shopping for more souvenirs! Tampa airport actually has a Ron Jon Surf Shop! (Sorry John, you were bound to find out when the credit card bill arrived anyway.)

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Clinic on Tuesday went well. Sophia's ANC is 1110 which her docs are happy about. She had two doses of chemo Tuesday so none of us were surprised when she had to leave school early on Wednesday. I overheard Jack say to her later that night, "I TOLD you this morning that should just stay home. A long weekend away, getting home late at night and then Clinic the next day? What did you expect?" As if somehow it's her fault that she got a fever.

But she is fever-free now so all is well. In fact she is very excited for the long-awaited Club Awesome which takes place tonight. Sophia has been preparing the activities for Club Awesome for weeks now. Our friend Laura who is joining us for dinner will also be able to take part in the fun. (I hope you are prepared for this, Laura.)

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June 13, 2013 Jane McCaul It's been awhile and I apologize! We were fortunate to receive a visit from out-of-town cousins last week and I was gently reminded that I needed to keep everyone posted on Sophia's progress. (Thank you for visiting, Liz & Emily. We loved seeing you! Hope to see you in August!) So I offer this quick update.

On June 1 we took part in the Leukemia & Lymphoma Society's Leukemia Cup Regatta in Annapolis. The Regatta happened to fall on

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CaringBridge Bringing family, friends and loved ones together when it matters one of the busiest weekends ever so as the day approached we were all a bit reluctant about the event, feeling more obligation than excitement.

Boy did that change! From the moment we arrived at the marina, something shifted and we were all suddenly excited and honored to be a part of the event. The captains and skippers took a few kids in each of their boats. Christina was assigned to one boat with a few kids from a nearby sailing club while Jack & Sophia were in another boat. John and I thought we would be watching from the spectator's boat but just as the kids were getting ready to sail we were told there were a few spots open on other sailboats and we could participate in the six races.

Thrilling does not even begin to describe the regatta. I always thought sailing looked so peaceful . . . and maybe it is out on the open water. But this race ~ not so much. It was a flurry of activity. There were no idle hands on our boat! My head was pounding about 10 minutes into the race but it was well worth it. When I did get the opportunity to spot the kids on the other boats, they looked like they were loving every minute of it. It was a "non-competitive" race meaning they were not keeping score on each of the races. But everyone was keeping score . . and everyone was pretty competitive. (We came in first place in the second race ~ but, you know, whatever, not that it matters . . .)

As soon as we left, the kids were asking when we could go sailing again. They were given an open invitation from one of the fantastic captains to come back anytime so we are really hoping to get them back at some point this summer.

Sophia is generally doing very well. She definitely gets tired, especially following days of two chemo treatments. But for the most part, she is great! She goes in for a lumbar puncture on Friday which she's not exactly thrilled about.

I need to be at work Friday so this will be the first surgery for which I will not be present ~ and it's kind of killing me. But John promises me (and Sophia) that as soon as she awakens, has lunch and is able to leave the hospital, he will bring her up to spend the rest of the day with me. (It's probably because I told him I wanted text updates every few minutes while they are there. This way he can say, "Here she is. Now please leave me alone.")

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Friday night we will head to Ocean City, MD where Sophia will enjoy a week of Beach Therapy. We all will. I am looking forward to the sun, the sand and plenty of cooking time! Christina's birthday is Wednesday and she has already put in her breakfast order for crepes and roasted potatoes. I'm incredibly excited just thinking about it! (I'm also a little hungry right now so . . . that could be it.)

Wish us luck and prayers on Friday!

On June 1 we took part in the Leukemia & Lymphoma Society's Leukemia Cup Regatta in Annapolis. The Regatta happened to fall on one of the busiest weekends ever so as the day approached we were all a bit reluctant about the event, feeling more obligation than excitement.

Thrilling does not even begin to describe the regatta. I always thought sailing looked so peaceful . . . and

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maybe it is out on the open water. But this race ~ not so much. It was a flurry of activity. There were no idle hands on our boat! My head was pounding about 10 minutes into the race but it was well worth it. When I did get the opportunity to spot the kids on the other boats, they looked like they were loving every minute of it. It was a "non-competitive" race meaning they were not keeping score on each of the races. But everyone was keeping score . . and everyone was pretty competitive. (We came in first place in the second race ~ but, you know, whatever, not that it matters . . .)

Wish us luck and prayers on Friday!

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June 14, 2013 Jane McCaul

Surgery was uneventful. Then Sophia headed back up to clinic for more chemo and was greeted by the Chick fil A "doctor." I had forgotten that Friday was Chick fil A day in the Children's Center! (Christina picked the right day to go!) Sophia's ANC is 1060 so she can swim in the pools this weekend without worry.

She and Christina are presently playing go fish at the table in my office. All is well.

Have a great weekend!

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June 14, 2013 Jane McCaul

She and Christina are presently playing go fish at the table in my office. All is well.

Have a great weekend!

Thank God for Clinical Trials Jane McCaul, June 23, 2013

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Last week was one long week. Parts of it wonderful, parts of it sad. The ups and downs leave us all a bit exhausted. Sophia's treatment on the 14th included a lumbar puncture and 3 doses of chemo ~ a lot for anyone but Sophia endured it all like a champ. So off to the beach we went. The next week was the Dexamethasone (steroids) week in addition to the nightly chemo. We never look forward to this steroids week so it was great to be at the beach with all its fun distractions. It was also great to be surrounded by family who truly understand how difficult this journey can be. Nanny came to expect the time of day when Sophia would suddenly become exhausted. At that point Nanny would offer to lie with Sophia so that we could spend time on the beach with Christina and Jack. We were so grateful for the help (not to mention their time spent with all 3 kids so that John and I could have time together!) Typically, this week of lumbar puncture followed by a week of steroids occurs every 4 weeks. Thankfully, because we chose to be in a clinical trial, Sophia was placed in the arm of treatment that spaces it out to every 12 weeks instead of the 4. It was randomly assigned so we just got lucky, very lucky. We've got another 11 weeks before Sophia has to go through it again. I never thought I'd be so happy with nightly chemo treatments but in comparison, it's a blessing from God.

Happy Fourth of July! Jane McCaul, July 5, 2013

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We hope you all enjoyed a safe and Happy Fourth of July yesterday!

Sophia had a blast celebrating another fabulous fourth of July at the home of our friends, the Callahans. She and her pal Olivia probably spent 4 of the 5 hours we were there on the giant water slide. Needless to say, she fell asleep within minutes of being home.

We leave tonight for New Jersey where Sophia will spend two weeks on Long Beach Island with the McCaul clan. Sophia is beyond excited! She was not able to spend the entire two weeks there last year so I'm delighted for her. We've been busy packing clothes, books and all the necessary medicine.

I'm only slightly nervous about her being away from Clinic for so long (at our last visit her ANC was 760) but the docs gave her the thumbs up to go so . . . off we go!

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July 22, 2013 Jane McCaul

Sophia enjoyed another fabulous beach vacation with little to no problems! She had a blast spending time with all the McCauls (especially her buddy Julian!) on Long Beach Island. It reminded us once again how grateful we are for the gift of family and generosity. Toward the end of the two weeks, Sophia was having a bit of difficulty with gross motor skills. We first noticed this during a jumping competition on the beach. Try as she might, she just couldn't get over that first line and was frustrated and embarrassed by it. She spent almost 30 minutes curled up on my lap while I explained that this was entirely normal given the Chemotherapy she takes every night. I reminded her that some children on this medication have difficulty walking and can't run or jump at all. She seemed to take it in stride. However, I think it did affect her confidence. Much later, she went under one big wave and came right out of the water. I met her at the shoreline and brought her back to my chair. While she was snuggled up with me again she said, "I

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was right in front of the life guards! Why didn't they try to help me!" I said, "Sophia, you looked completely calm. You did everything right and made your way out just fine. I only knew something was wrong because I know you and I know your brave face. You're tougher than you think. But I am always here to snuggle you up when you need it!" I'm not sure which one of us needs the snuggling the most; it's difficult to watch her trying to be brave. However, we have discovered that the more diversions we experience, the better. After being home from the beach for only an hour, Sophia and I were at the store when I noticed she was experiencing slight difficulty walking. But . . . off she went to her friend Maggie's birthday party and came home very happy, no mention of any difficulties. She had a great night's sleep then it was off to yet another fun diversion yesterday ~ our latest LLS, Light the Night fundraiser! Sophia's Uncle Chris & Aunt Carrie organized a "Spinning for Sophia" event at InSync Studio in Hunt Valley. A great deal of work went into making sure we all had a great time ~ and we certainly did! (Although John and I might take a little longer to get back onto our bikes as we rode for all 3 classes!) For pictures and more info about the fun event, visit our team page on Facebook: https://www.facebook.com/TeamSophiaMcCaul We are off to a clinic visit tomorrow so we will be sure to keep you posted on Sophia's progress. Have a great week!

Clinic update Jane McCaul, July 23, 2013 Good news today: Sophia's ANC has risen to 1280 and she passed her physical test (of muscle and gross motor skills) with flying colors. Our next scheduled clinic visit is not until after the Disney Cruise. Let's pray for good health ~at least until we're back home. If she spikes a fever on the ship ... I picture Doc on the Love Boat attempting to access her port and ... it's a little frightening. I would definitely need a few drinks from Isaac before I let that happen. Sent from CaringBridge iPhone app

A few prayers would be helpful

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Jane McCaul, July 28, 2013 If you happen to find yourself praying, we'd really appreciate it if you could mention Sophia again. She has not been feeling great since yesterday and has had a low grade fever (99.5) the past two days. We have until 100.4 before we need to go to the hospital but . . . as you may remember, we are supposed to leave for New Hampshire on Friday night and the following week is the cruise. So you can understand our anxiousness. You know your priorities are a bit skewed when you find yourself saying, "I will happily go to the hospital on August 16th, but until then . . . let's keep it cool, honey!"

Our Team Jane McCaul, August 1, 2013 Very often we like to reflect on the blessings we have gained from this whole experience. Yesterday gave us yet another opportunity to do so. This time last year, I wrote about the experience Jack and I had at the Leukemia & Lymphoma Society's Light the Night kick-off party 2012 at Camden Yards. The two of us had attended the event together representing Team Sophia McCaul ~and we had entirely different experiences. At the end of last year's presentation, Jack was fired up and ready to raise some funds! I, on the other hand, was left feeling a bit melancholy. It was all still so new to us and I hated that my baby was one of these statistics. I didn't want to think about this new life for her, with the possibility of relapses and more pain. I wanted our old normal life back. Thankfully, I had Jack with me and it's difficult to be sad with this kid around you. Soon enough he had me laughing, cracking open peanuts and enjoying the ball game. At this year's kick-off, because Sophia is the Light the Night MD Chapter's Honored Hero, we were asked to have a team member speak at the event. It really was a no-brainer. Jack is our team captain and had been really inspired by last year's kick-off. It did not take much convincing to get him to agree. I gave Jack an outline of points he should mention and he filled in the gaps ~ with things I never knew. He talked about the day we received the phone call, my reaction, his feelings and more. I didn't know that he took the time to download apps onto his iTouch so that Sophia would have something to do in the waiting room of the hospital. I had no idea that he cried then secretly threw pillows around his room upon hearing Sophia's diagnosis. It brought it all back and yet somehow it didn't hurt as much. It just reinforced the fact that we have made it through this together ~ as a team. And if we are faced with this (or another challenge) again we will make it through ~as a team.

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So last night, Jack stood before a packed house with Sophia by his side and delivered a speech to all the Light the Night MD Chapter teams. He was wonderful. He connected all of us; it was as if every one of us were a part of the same team. And we are. Everyone in that room last night has been affected by blood cancer in one way or another. We all get the terrible news, we discover "new normals" and we keep moving on with the love and support of our family and friends. Our team will walk in the Light the Night in Annapolis on October 19th. Last year's walk was truly a night to remember and I'm certain this year will be no different. Feel free to join our team and walk with us. http://pages.lightthenight.org/md/Annapoli13/TeamSophiaMcCaul Even if you can't be there with us at the Walk, please know you are still a part of our team and we feel blessed because of it. P.S. Sophia has not had a fever in two days! :) Thanks for the prayers!!

A Dream Vacation Jane McCaul, August 18, 2013

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I don't even know where to begin. This vacation, the last one of the summer was truly the best vacation we have ever taken ~ and for so many reasons. This was the first vacation we took where it was just the 5 of us. We had so many wonderful vacations this summer with family and friends and we enjoyed every minute of it. But I suppose we didn't realize that we weren't spending much quality time with one another, just the 5 of us. Spending time together as a family has become incredibly important to all of us and this vacation reinforced that. The Disney Dream has so many activities for kids, teens and adults. Before the trip Sophia was excited to check out Oceaneer's Lab and Christina & Jack wanted to check out Vibe, the teen's space. But once on board, no one wanted to go to those places. We did just about everything together. John and I were able to check out the adults only upper deck a couple of times when the kids decided to chill out in our room. It was fantastic ~ serene and peaceful. Sophia's favorite part of the cruise was the Aqua Duck, a "water coaster" on the upper deck. I loved riding it with her simply to hear her squeals of delight. Jack's favorite part of the cruise was the food (he ate around the clock) and Blue Lagoon island in the Bahamas. Christina's favorite part was snorkeling in Castaway Cay and I have to agree. She and I snorkeled for at least two hours, exploring the sunken sub from the old 20,000 Leagues Under the Sea ride, the captain Mickey statue and more. When we weren't snorkeling we were floating on tubes, biking the tropical trail or sliding down water slides. I loved Castaway Cay! John says he can't pick one

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favorite part of the cruise because he loved the whole thing. We all also truly enjoyed the Daily Amenities provided by Make a Wish. The first day it was an enormous Fruit and Cheese platter. The next day: cookies and milk, and so on. We were also given 100 minutes of free internet which we decided not to use. We wanted to be completely off the grid; and it was wonderful. The musical productions on the Dream are very well done and the show on our last night was no exception. It was called "Disney's Believe" and it most certainly resonated with me. It is the story of a botanist preoccupied with his work so much so that he overlooks his daughter's birthday. His daughter's name is Sophia and much like our Sophia she is spunky, spirited and full of imagination. She wants her father to believe in fairies and "that magic can happen." She makes a birthday wish and moments later Genie from "Aladdin" appears to Sophia's father to show him what's really important in life. Throughout performances like "The Bear Necessities," "The Circle of Life," "So This is Love" the father is able to reconnect with his daughter. The killer for me was when he sees his (future) Sophia appear on stage fully grown and beautiful, dancing with a prince. He begins to dance with her while clips of Disney princesses and their dads appear on screens all around them. At this point, I looked over to see Sophia snuggled in John's lap. Yep . . . I lost it. At the end of the production everyone wishes Sophia a very happy birthday and her father thanks her for making him realize what's important in life. Our Sophia made us realize this very early into her journey and continues to remind us on a daily basis. We truly are blessed. I whispered my own thanks to Sophia. We are eternally grateful for Make A Wish and the Friends Foundation for making this dream vacation a reality. They came together to give Sophia a send-off the day before our trip that was truly over the top! She was showered with gifts (Christmas in August!) and we were, too. The spending money they gave us allowed this to be a vacation of "Absolutely!" instead of "Next time." The best part about is is that the kids understand that we were able to do this for them because of the generosity of others. We look forward to being able to pay it forward and make someone else's dream come true some day. For photos from our trip, visit our Team Sophia McCaul facebook page.

September 5, 2013 Jane McCaul School has begun and ... so far so good! Sophia has made it to school every day so far with only one trip to the school nurse. I feel so bad for our

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nurse because when I see her name on my caller ID I feel that moment of utter dread and sometimes answer, "Oh no, what is it?" What I really mean to say is, "Good morning, Mrs. Madigan. How can I help you today?" Thankfully, she's extremely patient and kind. Tomorrow will be the first school day that Sophia will miss. She has a scheduled lumbar puncture followed by a clinic visit. Tonight I'll be busy preparing the snack foods for when she wakes up from surgery "starving." I will also need to make a list of the things Sophia has told me since the last visit: headaches, leg pain, fatigue, etc. I actually wish I would have documented these things with a date and time as she told me about them. When the doctors ask her how she's been since the last visit she has a habit of answering, "Fine!" Then I sound like the overprotective mother when I say, "What about this? What about that?" She still says she wants "to go inpatient like last September" so that she can "lie around and have fun." Nothing says fun like an ANC of zero. How soon they forget. I want her to stay our of the hospital for a while. We want to get to Christina's cross country meets this month, then there's the Light the Night Walk next month followed by our weekend trip to Deep Creek Lake at the end of October. Of course, November is looking fun with family parties and Thanksgiving. Then there's Christmas and my birthday! Hmm . . .I'm obviously still struggling with mindfulness and living in the moment. Let's try again: I am grateful for how well Sophia feels today. I am pleased and thankful that she is in school right now with her friends and fabulous teachers. I am enjoying sitting here writing about this gratitude. My soy latte has given me a delightful little buzz. I am somewhat warm and perhaps should adjust the AC.

Here's hoping for a successful surgery and an ANC above 500 ~ for a while!

Quick update Jane McCaul, September 6, 2013 Surgery went well and Sophia's ANC is 920. Ahhhhhhh. She was pretty wiped out following surgery and the chemo infusion in clinic. However, she has since regained

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her strength and wants to go to her friend Mary's birthday party tonight. So off she'll go and I'll watch her walk up the street while I stand whispering prayers of Thanksgiving. Life is good.

Another quick update Jane McCaul, October 3, 2013 Sophia went to Clinic on Tuesday and was issued a (fairly) clean bill of health. Her ANC is 910 and aside from occasional fatigue, she is a happy camper! Her liver numbers are slightly elevated (they keep creeping up each visit) so we have to watch for abdominal pains, etc. The rash from the methotrexate has continued to spread on her face but we are advised not to lessen the dosage at this point. My cure-all coconut oil seems to be helping the rash a little so I'm psyched. Sophia has no school tomorrow and we will be headed to the beach in the afternoon. Enjoy your weekend!

October 16, 2013 Jane McCaul Sophia is at school today and is feeling well (as far as I know) so that's a good thing. Her temperature has been fluctuating quite a bit lately so we are all sort of walking around, precariously going about our business. We are taking it one day at a time but I am praying that Sophia's temperature stays below 100.4 at least until Sunday. Saturday night is the Light the Night Walk and our Honored Hero just has to be there! She had so much fun last year and I want her to experience that again. We can always tell when Sophia is unwell or has a fever simply by the change in her demeanor. Our otherwise fun-loving, happy girl becomes subdued or even a little irritable. The other day Christina said something to Sophia who answered with a snide remark. Christina looked at me with a shocked expression and then said, "Sophia, are you OK?" Sophia burst into tears. Sure enough, she had a fever. She stayed home from school yesterday~ fever and headache. I was lucky enough to be able to stay with her. At one point we were at the store when "Catch My Breath" came on. It's the song used in the Sophia's First Year of Treatment video so it always makes my heart hurt a little when I hear it. I managed to remain composed throughout the song and then said to Sophia, "This song will forever make me think of you." She

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smiled. Then as the song was ending, right on cue, she lifted up her arms and formed her little hands into a heart ~ just like she does at the end of the video. That I didn't end up in a pool of tears right there in the middle of the Asian Market is a miracle. I just grabbed that head of unruly hair and kissed those adorable cheeks until she requested that I let go. What else can you do?

http://www.youtube.com/watch?v=NYYIbMaUj4g

Addendum to last entry! Jane McCaul, October 16, 2013 I forgot to mention the highlight of this month for Sophia.

Late last month a package was delivered from the Anonymous Monkey Sender. Sophia was instructed to open one wrapped gift per day during the month of October. Sophia has had a blast opening one orange-themed gift per day.

Thanks, AMS!!! Sent from CaringBridge Mobile

From Sophia and Mom Jane McCaul, October 22, 2013

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I asked Sophia to write today's journal but she's not feeling well so she wants me to write what she says. Here goes: "Light the Night was so much fun. I liked walking the best. The food was really good there. It was scary standing on stage with everybody looking. Jack gave a good speech . . . I really don't feel well." So, I suppose that's it for now. Sophia tried to make it to school today; she lasted about an hour. John picked her up and brought her home. Poor kid. She has these crazy ups and downs lately. One minute she's feeling fine, the next she is running for the bathroom in a panic, afraid she's going to vomit. A couple minutes later, she's fine again. Case in point~ Sophia feels better now and wants to write. BLESS THE MONKEYS OF THE JUNGLE from:Sophia (She's annoyed that we can no longer change the color of the font.) Well, this was certainly the most disjointed journal ever written. We'll just cut our losses and end here. Have a great week!

Another LP down

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Jane McCaul, November 22, 2013 Sophia had her regularly scheduled 12 week lumbar puncture/additional chemo visit today. John and I were both with her for the clinic visit and surgery. She had the docs laughing as she fell asleep then woke up groggy and hungry as usual. I had to leave while she was on her second popsicle to make it to a meeting at work. John and Sophia left the PACU shortly thereafter and returned to clinic for more chemo. They were there another couple of hours so by the time John delivered my baby to me she was tired and spent. It's times like these when I am so grateful to work in a guest house! I brought her to an empty room, tucked her into bed, turned on Doctor Who and sat down next to her. She stayed in bed for the next few hours but was feeling much better by the time we left. She hasn't even begun the Dexamethasone (which begins tonight) and already the cravings have started! She talked all the way home about quesadillas. When we got home I supervised as she prepared the quesadilla completely on her own. Nice. Now we are snuggled on the couch watching the last episodes of the Doctor Who marathon. Tomorrow is the big day; it's the world premiere of the Doctor Who 50th Anniversary special! Sophia wants to make a banner to put outside the house but . . . we'll see. "Allons-y!"

Merry Christmas Jane McCaul, December 23, 2013

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Just wanted to take the opportunity to wish everyone a Merry Christmas and to thank you for your continued prayers for Sophia. Her clinic visit last week showed that a couple of her numbers aren't quite where they should be so they want to see her again next week. It could something be as simple as a virus so they just want to check again. Other than that, she's doing very well and thoroughly enjoying this Christmas season. I'm grateful that Sophia has this long break (over 2 weeks!) to relax and stay healthy. Here's wishing the same relaxation and health to you and your family! Have a Merry Christmas and a Happy New Year! Xoxo, Jane, John, Christina, Jack & Sophia

Clinic Update Jane McCaul, January 3, 2014

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I hope you (most of you) are enjoying the snow! It's beautiful here! Sophia's Clinic visit yesterday was much better than we had anticipated. She had been pretty fatigued lately with mild fevers every so often. She awoke Tuesday with a cough that sounded like croup. We fully expected to hear that her ANC and her hemoglobin had dropped even further. We were just hoping that her liver numbers had not risen any higher. Thankfully we were told that her liver numbers decreased, her ANC increased and her hemoglobin is stable. The hemoglobin is still low but not low enough for a transfusion. Sounds good to us! Have a wonderful weekend!

January 12, 2014 Jane McCaul Sophia will be spending her 9th birthday at clinic ~ but we're OK with that! We're going to make the most of it with a special lunch and whatever else we can do. Sophia missed 4 1/2 days of school last week due to a respiratory virus. This was following an ER visit the evening of Jan 3rd. She's feeling a bit better but they want to see her Tuesday to determine whether or not she will need an immunoglobulin infusion. The purpose of the infusion would be to build up her immunity. The virus (RSV) is very common and doesn't usually pose a threat in most children. But with her compromised immune system, it could be harder to fight off and there's the potential for it to develop into pneumonia or something else. We'll have a better idea of what we'll need to do on Tuesday. We'll keep you posted! Xoxo

Clinic update Jane McCaul, January 14, 2014

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If you have to go to Clinic, your birthday is definitely the day to go. Today was a great day all around. Sophia's numbers all looked good, she does not need the infusion, her class sent her a video of themselves singing Happy Birthday, and she was given much birthday love by the fabulous pediatric oncology staff. Birthday blessings indeed. Every year on her birthday, Sophia likes to have me read On the Night You Were Born by Nancy Tillman. Last night as we were lying in bed reading it, I was overcome with gratitude ~another year to read this story to my beautiful baby. Usually when we read poems like this one, I become secretly annoyed when Sophia stops me mid sentence to comment on a picture or ask a question. I think, "No! You can't mess with the symmetry!" (Truth be told, sometimes I think this out loud.) But last night I welcomed every pause, using each one as an opportunity to keep my tears in check. It didn't really work; I still cried. Tears of absolute joy. Happy Birthday, Sweet Sophia!

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February 6, 2014 Jane McCaul Not a single one of us wanted to get out of bed today. We have all been fighting colds and/or have been feeling completely run down. So after my shower, when I realized Sophia (our early riser!) was still in bed, I went into her room, still feeling groggy, kissed her all over her face and told her it was time to get moving. She said, "I'm not getting up. You're going to have to drag me out of bed." I said, "Okaaaaay" and proceeded to remove all the blankets. She started giggling and it was the most adorable sound I had ever heard. This continued just long enough for me to feel fully awake and happy. I think I'm going to have to record that sound and use it as my new alarm clock. What a great start to the day! Sophia's lumbar puncture and clinic visit is next Friday, Valentine's Day. She'll have to miss her school party but we assured her that we'll have a lovely red popsicle waiting for her when she awakens from surgery. That didn't quite elicit the excited response we had hoped for. However, I noticed that there will be an Art Safari taking place at the hospital that day so I'm sure she (um . . . I) will have fun!

Update Jane McCaul, February 17, 2014 We hope you all had a wonderful Valentines Day! We sure did! Sophia's surgery and clinic visit went on as scheduled, despite the abundance of snow. Surgery was fine and the clinic visit with the chemo infusion went surprisingly quickly. We were finished in time to treat Sophia to a Valentine's lunch in the hospital cafeteria. Later that evening our doctor emailed to let us know that the the spinal fluid looked clean~ news that made the champagne and chocolates taste even sweeter. We are now reaping the joys of Dexamethasone, aka steroid from Hell. Sophia will need to take this steroid for the next week and the highs and lows are . . . high and low indeed. Last night she followed me around everywhere I went. We held hands doing the laundry, picking out books, changing the sheets (this took skill.) Nevertheless, it was still followed by a crying session. When she cries she says she doesn't know why she's crying so I just tell her to let it all out. Last night, John came up about 10 minutes into one of these sessions and was able to get her to start laughing. Nice. This is also the steroid that makes Sophia eat like there's no tomorrow. I woke up this morning, came downstairs and found Sophia happily sitting on the couch. I asked her if I could make her some breakfast and

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she said, "No thanks, I've already had some pizza!" It was 6:30 in the morning. So wish us all a bit of luck. July can't get here soon enough.

All is well! Jane McCaul, March 12, 2014 Just a quick note to let you know that Sophia's clinic visit yesterday went well and her counts looked good. Her oncologist informed us that the liver numbers are "a tad high but no different than before." We'll take that as a win! Have a Happy St. Patrick's Day!!

Clinic update Jane McCaul, April 16, 2014 Sophia's clinic visit yesterday was a quick one. Her liver numbers remain elevated but the oncologists are still not overly concerned. Her ANC was a whopping 1600! I was thrilled to hear it ~ until they said they would be increasing the dosage of her daily chemo (6-MP) which unnerves me a bit. It's not that Sophia has difficulty taking it. In fact, she mostly sleeps through the whole thing; John wakes her up and administers it to her every night. It's just that I'm uncomfortable with the amount of chemo that goes into her little body as it is. I hate to increase it. But I'm aware of the alternative so I just cling happily to the realization that the chemo ends in July! The high ANC is apparently both good and not so good. When the ANC is high, Sophia has a better chance at fighting off infection. That's great, right?! Well . . . apparently when the ANC is high, it means that her body isn't quite wiping out everything, meaning any cancer that could be hiding somewhere isn't being killed. The increased dosage of her chemo should do the trick. We just have to add an extra clinic visit to make sure her ANC doesn't fall too low before her spinal tap next month. Thankfully, this crazy roller coaster ride should be over soon. We are ready to get off and move on! I'm excited just thinking about what's in store for Sophia and the rest of our family when this is all over. ("May you not forget the infinite possibilities that are born of faith . . ." St. Therese) As always, thank you so much for your prayers. Have a Happy Easter!

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Comments what a great update. Our prayers are with all the family as you wait for the good news to come in July —Blanche Tait, May 10, 2014 May the blessings of this holy season flow toward you all and increase and blossom. I hope the Easter Bunny makes an appearance also. Love to all, Mimi and Papa Gene —Margaret McCaul, April 19, 2014 Happy Easter! May the months ahead be filled with good news. You are in our thoughts and prayers. —Beverly Consilvio, April 17, 2014 Happy Easter to you all will keep Sophia in our prayers this wonderful season —eileen robson, April 16, 2014 Wishing all of you the grace of this Easter Season. Many" HAPPY" moments be yours at this time. Love to all your Chickes! —Dale Smith, April 16, 2014 Prayers continue through this Holy Week for each of you. Truly it is the model of Christ Jesus that gives meaning to our lives. Peace. —marcy nesbitt, April 16, 2014 Happy Easter Jane. Almost over. Always in our prayers. Xoxo —Andrea Hurlbrink, April 16, 2014 I am praying really hard that things get under control. Have a great break, and a blessed and peace filled Easter. Hopefully warm & sunny weather will cheer you up! —Sheila Brune, April 16, 2014

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To all of you, also from St. Therese, "May today there be peace within" Almost done! —Trudy and Joe sampugnaro, April 16, 2014

Happy Cancerversary! Jane McCaul, April 25, 2014 It was two years ago this morning that Sophia was diagnosed with leukemia ~ and she is kicking butt! We celebrated at her favorite restaurant last night and she'll have her favorite pizza tonight. Thank you, thank you, thank you for all your prayers and support. You've made the journey so much easier for all of us. (I've attached a video of the first half of this journey. It's wonderful to see how far she's come!) The new dosage of chemo is causing some stomach aches and headaches but she is marching forward ~ ever closer to the last day of chemo, July 2nd! The countdown is on! We're so excited!! Have a great weekend! xoxo

Comments Happy Anniversary!!!! Keep on trucking little trooper. —Sheila Brune, April 28, 2014 So many beautiful photos of all of you- What a beautiful brave little girl!! —laura kenny, April 26, 2014 Love this and all of you sooooo much! —Mary Dolan, April 25, 2014 Brave Heart, I will be counting down with you each day until July 2,2014. You and your family are lifted up in prayer each day. —Dale Smith, April 25, 2014

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we're all rooting for her, roll on July —eileen robson, April 25, 2014 so so beautiful-thank you God for making her well again and returning that beautiful head of hair to that beautiful child...brought tears to my eyes.................god bless............love, aunt bettyxo —Betty McCaul, April 25, 2014 What a trouper! The good news is that the end of chemo is only a few months away. You continue to be in our thoughts and prayers. —Beverly Consilvio, April 25, 2014 Wow.......what an inspiration all of you are to the rest of us ~ led by your beautiful Sophia. Loving prayers ~ The Kellers —Laurie Keller, April 25, 2014 I have some thank yous to add to Jane's thank you. To Dr. Commerford who diagnosed the "problem" at the first visit and got Sophia into Johns Hopkins the very next day, to everyone who has ever been part of a trial that lead to Sophia's treatment plan, to everyone at Johns Hopkins, to family and friends who have supported Sophia's family, to Jane, John, Christina and Jack for all their loving attention and "we got this" attitude, to Sophia who refused to let herself get down and especially to God for holding her in the palm of His hand. Onward. —Trudy and Joe sampugnaro, April 25, 2014 What a beautiful video of a beautiful little girl and her family. Our prayers continue and we think of you often. Come on down to Hilton Head!! Would love to see y'all. Jane and Geroge —Jane Kipp, April 25, 2014

Spinal taps ~ DONE! Jane McCaul, May 9, 2014

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I'm falling asleep as I write this but I wanted to get the word out: Sophia had her last spinal tap today. I'm not adding the word "hopefully" or "knock on wood" because right now, in this moment, Sophia just had her last spinal tap ever. We celebrated this milestone by coming home, snuggling on the couch and watching Cinderella. I found out today that my 9 year old child had never seen this classic movie in its entirety, only bits and pieces. Songs would come on and she would say, "Oh, I know this song . . ." What?! Huge parenting fail right there. But I suppose we made up for it today. Sophia's ANC was 940 which is good. Her platelets are down and her liver numbers have increased again so we need to go back in two weeks for more lab work. We're getting so close to the end so I think the doctors are hesitant to change anything. We just have to keep a close eye on her. She had a low grade fever last night and another this afternoon but hopefully a restful weekend will make her feel better. Today she received chemo through the lumbar puncture then went back up to clinic where she received a different chemo through her port and tonight she will be awakened to take her oral chemo. With all this chemo, tomorrow might be a bit difficult for her. Tomorrow is our school's Spring Gala which Sophia is very excited about. Two years ago she had to miss it because she was too ill having just begun treatment. So I'll be delighted if she can enjoy even an hour of it tomorrow. Sophia is presently lying fast asleep on a makeshift bed on the floor right beside me. This is where she wanted to sleep tonight and this is exactly where I need her to be right now so that we both enjoy a good night's sleep. I actually wouldn't mind having Christina and Jack in here, too. I love it when we all sleep in the same room together. For the record, John does not share this sentiment. Sweet dreams! xoxo

Comments Awesome!!!!!! another thing behind you. keep moving on Sophia Lots of love and prayers coming your way. Sheila â&#x20AC;&#x201D;Sheila Brune, May 12, 2014 Sweet dreams to our sweet Sophia!!! You are always in our prayers! We love you very, very much... â&#x20AC;&#x201D;Amy Philipp, May 12, 2014

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Great news jane. We think of you all often and are so glad you are in the home stretch! Our love to you all!! And Yay Sophia !! —meg heinz, May 11, 2014 That is great news! Sophia was having a great time at the Spring Gala when I handed over her bag of snacks that she had just won at the Snack Attack booth! —Maribeth Bennett, May 10, 2014 It was so good to see her having a great time at the gala! she won the snack attack bag when Maribeth and I were spinning the wheel! —Diane Madigan, May 10, 2014 Emily and I read the last post together, we smiled and both said "they are the cutest family." We are so happy for Sophia,and all of you, that the treatment is coming to an end. She has done so well, been so brave and has won. You can't celebrate Mother's Day, Father's Day, Sister or Brother's Day enough in your house, it's been a team effort throughout. Love you all, Cuz Liz —Elizabeth Wyman, May 10, 2014 So happy for Sophia-and hope you all had a wonderful sleep and have a fun day at the Gala! And happy Mother's Day to one of the best moms I know:))) —Tricia Maher, May 10, 2014 We hope you all enjoy the Spring Gala today. What a cozy night. We enjoyed our time together last weekend. Blessings to you especially this Mother's Day. Love, Mimi and Papa Gene —Margaret McCaul, May 10, 2014 You are a wonderful Mother,Jane. Thank you for sharing this sweet entry in this journal. Please write a book on "Ways to Love Your Children" you have got it! —Dale Smith, May 10, 2014 Happy Mother's Day, Jane. —Jeanne Rapazza, May 10, 2014 What wonderful news ! Sweet dreams to you guys too ! The Kellers <3

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â&#x20AC;&#x201D;Laurie Keller, May 9, 2014

It could be worse Jane McCaul, May 14, 2014 I'm fairly certain I will wake up tomorrow morning and the events of today will all have been a dream. Our big, beautiful oak tree will still be standing tall, John's car will remain intact and Sophia will be bopping around the house preparing for a teaching lesson, art show or some other typical event. Unfortunately, that probably won't happen. Our crazy day began at about 2:45 this morning when a large branch from our 100+ year old oak tree came crashing down onto John's car. He and I got to the window in time to see the entire thing happen. All we could say is, "Thank God." It could have been so much worse. I'd rather be inconvenienced than devastated any day. In fact we had a good laugh surveying the scene with our neighbors in the middle of the night. You'd think the day could only get better from there. Not so. Over the course of the day, Sophia continued to have a fluctuating fever and feel horrible from the strep throat she was diagnosed with on Monday. Since she had been on antibiotics for 3 days, John called the oncology clinic to let them know that there was no improvement. They decided they wanted to have her come in for blood work. After a few hours at the hospital we were told that her platelets are even lower than they were at the last visit. An exam showed some new bruising so she was advised to stay home and rest to avoid any additional bruising. She has been feeling completely lousy the past few days so the rest will be good for her. They will check her counts again at her next clinic visit on Tuesday. By Friday she will have missed the entire week of school. Again, not good but it could be worse. At least we are home safe in our own house. I mean, who needs the hospital's sweeping views of the Inner Harbor when you have tree and car wreckage upon which to gaze right outside your very own window? Sophia is asleep now and I am right behind her. I'm off to bed with feelings of relief and gratitude (mostly that this day is done.) But it definitely could have been a lot worse. Here's to a new tomorrow!

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I love you, Jane Marie - you and your whole wonderfully grounded, faith-filled, kookie family. You guys are the poster children for "perspective." —Love, Eileen, May 15, 2014 Our prayers are with you, at times a diversion occurs, & we don't know why, but I believe there is always a reason. We learn, & become stronger from each one. God bless, Charlie & Cheryl —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., May 15, 2014 What a week you've had. Sometimes the only way to get through rough times is to realize it could be worse. Hang in there! praying that things turn around. The weather is supposed to be sunny on Saturday and Sunday. Enjoy the outdoors, and stay away from the tree! —Sheila Brune, May 15, 2014 We are praying for a good report next week. All of us are In awe of your family's strength and positive outlook . Faith has made this possible. The angels are watching over Sophia very closely —Blanche Tait, May 15, 2014

Chutes and Ladders Jane McCaul, May 20, 2014 We just got back from clinic a little while ago. First the good news: Sophia's platelets have risen a bit from last week. They are still below normal but I'm happy with an upward trend! The not so great news is that many of her counts are below where they should be. Her white blood cell and her absolute neutrophil counts both plummeted. Her ANC is now 200 making her neutropenic~ which basically means no school for another week and limited exposure to others (mask in public, etc.) She is also anemic which would explain all the sleeping. Her hemoglobin is low but not quite low enough for a blood transfusion (that's actually good news!)

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As a result of these counts, they have suspended all chemo for the week. They are hoping that without a steady stream of chemo, her counts will be able to rise again. We're all looking forward to a week without chemo! Especially John who won't have to stay awake late to give her the dose or set his alarm to wake up for it. They'll check her counts next Tuesday to determine whether or not to resume the chemo. While waiting for counts today we were talking with a staff member at the hospital, telling her Sophia had not been feeling great but that we were so close to the end. John commented that it's like Chutes and Ladders~ you're almost to the end and then ... back down you go! Today definitely felt like a slide downward. That's OK, we'll get there eventually. We're in it to win! Here's where we could use your prayers: if Sophia gets a fever with her counts this low, she will need to go inpatient. Although she says she would love this (Wednesday Bingo, daily arts and crafts, pancakes every morning . . .) John and I would not exactly share her enthusiasm. I told her I would make pancakes every morning in exchange for not having to go inpatient. SO thank you in advance for any prayers you care to send. While I'm dishing out thanks~ we want to thank the 3rd grade class for their beautiful Get Well cards for Sophia. We ALL loved reading them. She is so lucky to have such a great class. (Special thanks to her fabulous teachers for all the extra time they put in to get Sophia's work home to us. We are so grateful!!!) Thank you also to the Anonymous Monkey Sender for the "Counting Down the Days" care package. The stickers are great and Sophia will put those rubber bands to good use during all this free time. Bracelets for everyone! Much love to you all. xoxo

Comments Prayers!!! Love you guys... —Anne Parker, June 4, 2014 Prayers and lots of love Sophia T —Blanche Tait, May 20, 2014 Can't love you all enough! Bursting with love and light! Mary/ Auntie Mame —Mary Dolan, May 20, 2014 Prayers for you sweet Sophia! You are strong! Feel better!

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—mike lackner, May 20, 2014 Hang in there Phi-bot! Adkins party of 5 is praying, especially Fenway! Rufff! Xoxo —Mary Adkins, May 20, 2014 Calling on all angels... Brave Heart needs you, Guardian dear Sophia needs you so come on down, Sending (First Class Mail ) lots of prays your way, —Dale Smith, May 20, 2014 Lots of Keller prayers in the works ! <3 to all ~ —Laurie Keller, May 20, 2014 you most definitely have my prayers and then some...................enjoy those pancakes whether mom makes them or the hospital makes them... love, aunt bettyxo —Betty McCaul, May 20, 2014 Sending LOTS of prayers, Phia!!! You got this! :) —Laura Humphreys, May 20, 2014 Hi Sophia, Uncle Norm and I have your entire family in our prayers always but especially now! See you this summer at Hampton-love and hugs to all. —Nancy Aboshar, May 20, 2014 will double the prayers, have got all the old people at my nursing home, and the volunteers from St. Mary's I go with praying at our little service every Monday morning! you'll get there. —eileen robson, May 20, 2014 I always hated Chutes and Ladders. Grampy and I pray our little sweetheart is her sassy, funny self again soon. —Trudy and Joe sampugnaro, May 20, 2014 Oh dear! You know i am praying extra hard that things improve. So close - keep your heads up. IT WILL GET BETTER! LOTS OF HUGS AND TONS OF PRAYERS.

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Sheila —Sheila Brune, May 20, 2014 Sophia, My husband, Paul and I still pray for you every night! By the way, what a cute picture of you at the Spring Festival, that appeared on the front of the St. Agnes church bulletin! —Diane Madigan, May 20, 2014 So sorry to hear about the seback, Jane. Things were looking so good at the gala. Prayers continue. John —John O'Donnell, May 20, 2014 Sounds like the chute where you broke the cookie jar. Need a water the plants ladder. Hang in there guys. XOXO —Carrie Sapienza, May 20, 2014 You are always in our prayers!!! We'll just push a little harder this week!!! Love and prayers, Amy P. —Amy Philipp, May 20, 2014

May 28, 2014 Jane McCaul

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So yesterday's clinic visit was a bit longer than we had expected but we're happy with the outcome. Her liver numbers, white blood cells and ANC both looked better than last week. Her red blood cells and hemocrit/hemoglobin counts were pretty bad so she needed a blood transfusion. I had forgotten how long those take and she needed two units so the transfusion lasted about 5 hours. It wasn't too bad though because they put us in a private room where we watched "Cloudy with a Chance of Meatballs 2" (which apparently I slept through some of) and "Iron Man 3." It was a long day but Sophia walked out of the hospital looking much better than she had in weeks. It's amazing what two new pints of blood will do for you. Sophia's ANC rose to 525, still too low to resume chemo but high enough that the doctor allowed her to go back to school today. Sophia had been itching to get back! When she came in our room this morning I asked her if she wanted to wait one more day, to rest from yesterday but she said, "No way. I'm going to school." I was a little nervous but I told her that was fine and to call me if she needed to come home. So she's at school and I'm wringing my hands hoping that she's OK. 2:50pm can't get here soon enough! Thanks for all the prayers!!

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Comments Sophia you certainly have the spirit in you. Hope you have great plans for the summer. —Blanche Tait, May 28, 2014 What a trooper! You continue to be in our prayers. —Beverly Consilvio, May 28, 2014 Hope Sophia had a wonderful day at school! —Elayne Melanson, May 28, 2014 Yeah!!!! Another long day behind. Good things on the horizon. Hang in there! —Sheila Brune, May 28, 2014

Just in time for Bingo Jane McCaul, June 3, 2014 Sophia had clinic this morning and we discovered that her ANC had risen slightly, not enough to resume chemo but enough that we believed we were on an upward trend. She had a slight fever while there so we were told to monitor her. As we were leaving the hospital Sophia stopped to look at the calendar of events and noticed that there would be a pottery craft later in the afternoon. She asked if we could stay but I just really wanted to get home. She was disappointed but did not put up a fuss ~ and I felt that familiar pang of guilt. We had a low key afternoon which consisted of snuggling on the couch~ Sophia watching TV while I read The Fault in Our Stars (although a good read, not the best choice for someone dealing with cancer treatment) so when Sophia's routine temperature-taking resulted in a fever high enough to have to go in, my stomach dropped. Once we got to the hospital, more blood was taken and we learned that her counts from this morning had decreased. They began antibiotics right away and decided to admit her in order to watch her overnight. The

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first thing she said was, "Mommy! Tomorrow is Bingo!!" She was delighted. So we are presently waiting to be transferred to the Oncology floor. I have no idea how long we will be there. Sophia is hoping for pancakes in the morning. I'm just hoping for a room with a harbor view.

Comments Sophia, the next time you and your family come over for dinner, you may have Mr. Bachkosky's World Famous Pancakes! Hugs and Kisses from Severna Park! —Missy Bachkosky, June 4, 2014 We are with you in spirit, and want you to know our prayers are with you too. Love, Charlie & Cheryl —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., June 4, 2014 God bless you all! Prayers continue! —Diane Madigan, June 4, 2014 Sophia has been one of my inspirations with every test and "bump" in the road to recovery. I think of her beautiful smile and I am comforted. I pray for her daily as she journeys to recovery! many payers, much love!! terri —terri kuehne Such a beautiul life celebraetd with a beautiful family!!! much love, June 4, 2014 Oh dear!! It's double duty on prayers today. Enjoy the pancakes and Bongo, and remember God is watching over you. —Sheila Brune, June 4, 2014 Feel better Sophia! —mike lackner, June 4, 2014

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I hope you win Bingo and get all the pancakes you can eat while enjoying your harbor view - then go home! —Love, Eileen, June 4, 2014 Sending hugs! I hope you're not there too long! —Sarma Ozols, June 4, 2014 Thinking of you, loves! <3 —Mary Dolan, June 4, 2014 Wishing you home soon so you can snuggle on your own couch B4. I 21.N33,G44,O65.BINGO you win Sophia. "There is no place like home!" —Dale Smith, June 4, 2014 We are praying for positive results. It will happen. —Gail and Larry Callahan, June 4, 2014 Pancakes, Bingo and antibiotics. - just the things to make your counts go up ! :). The Kellers —Laurie Keller, June 3, 2014 Sorry you guys are getting admitted, but I hope Sophia wins big in bingo tomorrow. —Catharine McCaul, June 3, 2014

All is well Jane McCaul, June 4, 2014

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Well, Sophia got her pancakes and I got my Harbor view. :) We are told that Sophia will be here at least 48 hours. However, Sophia has already played Bingo with Jack by her side cheering her on and had quite a few visitors so all is well. Her aunt KK came in the morning bearing gifts of Starbucks treats. Then we received the best news of the day from her favorite cancer fighter friend, Chuck. His tumors have shrunk, there is no evidence of new cancer and best of all ~ he is feeling great!! His visit this afternoon made our day! Sophia has Nanny and Grampy by her side right now so that John and I can attend Jack's Confirmation. Then I'll be back to stay with her tonight. They will check her counts late tonight and we should have results in the morning. We're hoping that the ANC will begin to rise so that we can head home tomorrow evening. So for now, we wait. As always, thank you so much for your prayers. Xoxo

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Here's hoping you are heading home, if not already there. Love and prayers, and lots of pancakes (mom's this time!) —Sheila Brune, June 5, 2014 Grampy and I had such a good time visiting with Sophia tonight. She is such good company...funny, quick witted, talkative and charming. For a little girl in an oncology floor, she is so positive and happy. Now where in the world did she learn that? —Trudy and Joe sampugnaro, June 4, 2014 I know that the good and gracious Holy Spirit will be with you all tonight. Wisdom and Fortitude are gifts of the Spirit that have been in your family all this time. Mimi and Papa Gene —Margaret McCaul, June 4, 2014 Prayers for a quick and hopeful outcome! <3 —Fran Shaw, June 4, 2014 Hope you won at BINGO. Wishing you home soon. Brave Heart. —Dale Smith, June 4, 2014 So happy that Sophia got her pancakes - they are a favorite in our house too. Sending healing thoughts and prayers for good news tomorrow! The Rhoe Family —Wendy Rhoe, June 4, 2014 great news! as always in our prayers —eileen robson, June 4, 2014

Great news! Jane McCaul, June 5, 2014 Sophia's ANC came back at 420. She is still neutropenic but since she has not had a fever and the numbers

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seem to be increasing, they are going to let her go home tonight! A few cultures are still running but they are expected to be negative. If not, we'll get called back in but the chances of that happening are slim. They took her off isolation this morning so we have been able to move around a bit. We went to the playroom and took a slow walk around the floor. As much as she likes it here, I know she misses Christina and Jack. It will be great to have the whole family together again. Plus, whenever Sophia is away then returns, Ginger always sleeps with her on her bed. A little pet therapy will be good for her. I know she also misses her friends but she won't be able to go to school (or the pool ?) until her ANC is a bit higher. So she will stay home until after our next clinic visit Tuesday. We'll be sure to let you know what we find out in clinic. Have a wonderful weekend! PS Sophia won one of the rounds of Bingo yesterday! ?

Comments Great news! Enjoy the beautiful weather and have a fun filled family weekend. —Sheila Brune, June 6, 2014 Yeay!, —patricia mccaul, June 6, 2014 Ginger always gets the best spot in the house! We are so glad to hear the news. Mimi —Margaret McCaul, June 5, 2014 Wonderful news. Always appreciate the update. Hope all of you can get some rest. —Gail and Larry Callahan, June 5, 2014 WOO HOO!!! —Eileen, June 5, 2014 So glad to hear the good news!!!

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—Sarma Ozols, June 5, 2014

Great news! Jane McCaul, June 10, 2014 Things are really looking up. Sophia's counts today were terrific. Her ANC was a whopping 1500! We celebrated by picking up Christina and Jack and heading to Panera for a late lunch followed by the pool where Sophia swam and played for 3 hours. I really have have no idea where she gets her energy. I sat on a lounge chair, exhausted just watching her. Tonight we will resume chemo and tomorrow she will head back to school. We're so happy that she gets to finish the last three days with her class. Thanks so much for all your prayers! Xoxo

Comments Hooray for Sophia! Have a great summer. —Beverly Consilvio, June 14, 2014 You rock Sophia!!!!! —Stephanie Moore, June 11, 2014 Yeah!!! What a great end to the school year! Prayers still coming. —Sheila Brune, June 11, 2014 way to go sophia-good girl! —Betty McCaul, June 11, 2014 Extra! Extra! Read All About It! Good News! This is the Day the Lord has made,, Let us Rejoice in it !

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—Dale Smith, June 11, 2014 yea Sophia!!!! —Tory Toomey, June 10, 2014 So happy to hear that. Sleep overs!!! —Carrie Sapienza, June 10, 2014 So happy for the good news, & we are rooting for you everyday. God bless, Charlie & Cheryl —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., June 10, 2014 So happy Sophia, you stay tough, Mommy & Daddy are going to be with you always, and all of your family, loves you. God bless you, Charlie & Cheryl —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., June 10, 2014 Awesome news! Way to go Sophia! Sleep well tonight mom and dad! ? —mike lackner, June 10, 2014 Wonderful news! Enjoy all the fun summer has to offer. We will keep St. Ann on the case. Mimi and Papa Gene —Margaret McCaul, June 10, 2014 Great news, Jane!!!! —John O'Donnell, June 10, 2014 You don't know where she gets her energy? I know where she gets her energy. It is from you, John, Christina and Jack. You guys put out enough positive energy to power any situation. So very, very, happy to see our little darling back on track. —Trudy and Joe sampugnaro, June 10, 2014

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Yessssssssssss! â&#x20AC;&#x201D;Mary Dolan, June 10, 2014

Thank you, AMS! Jane McCaul, July 1, 2014

Only two more doses to go! Tomorrow is the last day of chemo! Sophia came home yesterday to find a special "countdown" delivery from the Anonymous Monkey Sender. It was full of (very cool) monkey games & activities and a very special note. Sophia can't wait to share the fun with her cousins at the beach. Thank you, AMS!

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Comments Last Day!!! Way to go Sophia! Much love from all of the Bachkoskys!!! —Missy Bachkosky, July 2, 2014 love!! —Catharine McCaul, July 2, 2014 So very happy for Sophia and the entire McCaul family! Hope you all celebrate big time! —Elayne Melanson, July 1, 2014 Great news!!! We'll be counting down with you!! —Tricia Maher, July 1, 2014 Fantastic, :) Seabrook next, I hope to see you guys. Stay well & God bless. Charlie & Cheryl —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., July 1, 2014 BALLERINA!!!!!! WOOT WOOT ON THE LAST CHEMO!!!!!!! You Rock Girl!!!!!!! HAVE A BLAST AT THE BEACH WITH YOUR MONKEY STUFF!!!!! MISS YOU!!! xoxo —Julie Williams, July 1, 2014 thank the good lord this is coming to an end and a good one at that.......congratulations and god bless to you sophia,your mom and dad and your brother and sister.....xxxxxoooooooooooooo aunt betty —Betty McCaul, July 1, 2014 What a journey Sophia has been through the last two years. Her brave spirit, has probably taught all of those who know her, some lessons in life or to think about their own life in other senarios. Have fun celebrating Sophia! Dance, jump and shout and make those monkey's run in the ocean with you!! —Christina Connorton, July 1, 2014

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Sophia, I'll bet your family has a big celebration planned for you. â&#x20AC;&#x201D;Jeanne Rapazza, July 1, 2014 Can't believe its the real home stretch! YAY!!! â&#x20AC;&#x201D;Carrie Sapienza, July 1, 2014

Happy Fourth of July!! Jane McCaul, July 4, 2014

Last night was Sophia's first chemo-free night! No adjusted eating schedules, no medicine at all! We celebrated her last day on July 2nd with a celebratory trip to Sweet Frog where she was allowed to get "whatever you want" on top of her frozen yogurt. Sophia piled her yogurt high with sour patch worms, Captain

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Crunch cereal, you name it. Thankfully, she only ate about a third of the cup before she decided she had had enough. Whew. Many people have been asking, "What's next?" so I figured I should explain the remission plan. Sophia will continue to take Bactrim (antibiotic) on the weekends for a little while and she will continue with Clinic visits once per month. Our next visit is Tuesday, July 29th. At these visits, she will have labs drawn to make sure her counts look good. I am so relieved that she will still have these visits, an opportunity to check-in, as I find myself more anxious now than before. Sophia will have surgery to have her port removed (probably mid-August) meaning each subsequent blood draw will have to be a poke in the arm ~ not her favorite thing in the world. In fact, she's already begun worrying about it. She asked the doctor, "Can't I please just keep my port in forever?" Answer: No. After a period of time, her visits will be extended to every 3 months, then every 6 months. I suppose eventually they will be yearly visits. I imagine by then these clinic visits will be just that ~ a visit, an opportunity to say hello to old friends and reminisce about the journey. I envision laughter, relief, joy, gratitude but also a bit of sadness. It will be difficult to see the new faces ~ of children just beginning and parents in a desperate fog. I want to hug each one of them and say, "I know. I know. There's nothing else I can say to you except: I know and I'm so sorry." In the meantime, we will continue to pray for peace, happiness and good health for everyone. Thank you for sharing your prayers as well. We'll keep you updated on the visits! Enjoy your 4th of July! Xoxo

Comments What a spectacular 4th. The best ever fireworks must have been at the McCaul's. I'm so happy for all of you and

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hope you are able to relax a bit and enjoy the rest of the summer. Lots of love and continued prayers. —Sheila Brune, July 8, 2014 Amazing news! So happy for all of you! Maura, Tim, and Patrick Moran —Maura Moran, July 7, 2014 Jane: So happy for all of you!!! —laura kenny, July 7, 2014 We're so happy to hear this great news! Your entire family has been and is an inspiration to us. Happy INDEPENDENCE DAY, Sophia! —Tricia Maher, July 6, 2014 CELEBRATE GOOD TIMES COME ON!!! SUPER BIG SHOUT OUT TO SOPHIA!!! Girl.....you beat this thing with a passion!!! You are the GIRL!! You Rock Monkey Girl!!!! HAVE A BLAST AT THE BEACH!!! XOXOXOXO —Julie Williams, July 5, 2014 Wonderful news--and even more reason to celebrate! —Fran Shaw, July 4, 2014 JT says rock on!!! Congrats McCaul family!!! Sending one big hug from the Moores —Stephanie Moore, July 4, 2014 JT says rock on!!! Congrats McCaul family!!! Sending one big hug from the Moores —Stephanie Moore, July 4, 2014 Congrats Sophia ! Hope you're feeling better . Wish I could see your fireworks,but I can't. -Sam Moore

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—Stephanie Moore, July 4, 2014 hooray to each of you-sophia, mom, dad, sister and brother - you are a wonderful, remarkable, supportive family.....many blessings to you and good health in the future...aunt bettyxxxxxooooo —Betty McCaul, July 4, 2014 I thank my God in all my remembrance of you. Always offering prayers for all that you would need. For you have run the race and crossed the finish line. In view of your participation in the gospel from the first day until now you must have so many feeling that fill your heart. Thank you for sharing with all of us, Sophia's journey these past 2 and a half years, Your willingness to write your thoughts anf feeling through Caring Bridge has been a gift to all of us. —Dale Smith, July 4, 2014 Wow, Sophia! Amazing news! Have a fun 4th of July and the rest of the summer! —Elayne Melanson, July 4, 2014 Happy 4th! Enjoy the rest of the summer. I think you deserve a long celebration!! —Maribeth Bennett, July 4, 2014 Blessings to all of you ! And a have a wonderful summer ! Maybe in the coming year the Kellers and the Kellers 2.0 can finally get together :-) ooxoooxo —Laurie Keller, July 4, 2014 Happy Happy 4th of July! will always be a day in your hearts, a new beginning! —Tory Toomey, July 4, 2014 God bless our Baby Girl and her unbelievably strong mom and dad and sister and brother. It certainly has been an amazing, sometimes treacherous, journey and all of you performed splendidly. Thanks, Jane, for sharing your thoughts, fears, triumphs, setbacks and celebrations over the last two+ years. Here's to nothing ahead but health, happiness and peace. —Trudy and Joe sampugnaro, July 4, 2014 Thank you Lord! —Diane Madigan, July 4, 2014

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Happy End of Chemo to you! Jane McCaul, July 22, 2014 Today was definitely bittersweet. We have been going to Clinic for over 2 1/2 years and during that time we have watched other children's "Happy End of Chemo" celebrations longingly. Today was finally Sophia's celebration. It was simultaneously wonderful and sad and happy. (I'm glad the video was cut off before the end of the song; I get a bit choked up at the end.) Christina summed it up perfectly when we were leaving: "That was so nice. I'm really going to miss all of those people!" These are the people who have taken such fantastic care of Sophia over the past few years. They welcomed us into their family as if they were so happy we were there~ always ready with a smile, making sure we were OK. We have laughed with them, cried with them, celebrated victories and endured set backs. I'm not sure how they have the emotional strength to do this with all the families they encounter but I am eternally grateful for all they have done. Thankfully we will be able to see them on our monthly visits. Our next visit is scheduled for August 12. I'm actually looking forward to it. We are still planning on having a blow-out party to celebrate this positive outcome. However our family vacations seem to keep getting in the way. :) (It's so great to have generous family members with access to beach houses.) As soon as we have a date scheduled, we will let you know! As always, thank you so much for your continued prayers and support. xoxo

Comments Feeling very joyful for the McCaul family! Congrats, Sophia! :)

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—Elayne Melanson, July 24, 2014 Monkey Girl....YOU ROCK!!! Congratulations to all of you!! You are very strong and brave!! What a Fantastic way to finish your summer!!! Life is Good at the McCaul home!!!!!! Peace Out!!! xoxoxo —Julie Williams, July 23, 2014 Congratulations! What a milestone in all of your lives. May the remainder of summer be filled with good times. —Beverly Consilvio, July 23, 2014 So I'm all choked up just watching the video clip! We are so incredibly happy for all of you and for sweet, brave Sophia! So proud to know such an incredible family.... —The Maher family, July 22, 2014 It's party time , Sophia ! You have been such a trooper through the past two years + and you have been a wonderful example for the rest of us. - as have all of the McCauls. We hope to see you at your celebration. Have a blast at the beach(s). !!!! The Kellers —Laurie Keller, July 22, 2014 Dance to the Music and Celebrate! A New Chapter awaits you Brave Heart. And the Monkeys in the Jungle are swinging in the trees with Joy for you. —Dale Smith, July 22, 2014

Port-removal surgery! Jane McCaul, August 12, 2014

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We are in pre-op now awaiting surgery to have Sophia's port removed. We're told it should take about an hour. We'll keep you posted!

Comments And she smiles through it all. Such a brave little girl. —Jeanne Rapazza, August 13, 2014 Be Happy ,Brave Heart,,,,,,Counting down 60 minutes 59,58.57.56.55.54.53.52,.51,.50......40......30......20..........10.9.8.7.6.5.4.3.2.1.... YIPPEE!!!!! —Dale Smith, August 12, 2014 Thoughts and prayers! Almost time to celebrate once again! —mike lackner, August 12, 2014 Yyaayyy ! and, Sophia, you look like you are in pretty good company there :-)

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—Laurie Keller, August 12, 2014 Look at that sweet face! I hope all goes well today. —Missy Bachkosky, August 12, 2014 glad Mr. Snugglesworth is along for the ride. Love Auntie Catharine —Catharine McCaul, August 12, 2014 Prayers! —Anne Parker, August 12, 2014 yea! so happy for you! Mary would love to play with Sophia when she is up to it! —Tory Toomey, August 12, 2014 HURRAH!!!!!!!!! —Eileen, August 12, 2014

All kinds of great news Jane McCaul, August 12, 2014 Surgery was a success. She's moving a little slow right now and looking a bit like Doofenshmirtz when she walks (Phineas & Ferb reference) but other than that~ Sophia's doing great! Even more exciting: all of her labs came back in the normal range ~ all of them! Not a single shaded area! Since Day One this has never happened. For the next 4 weeks she will have to refrain from three of her favorite activities: No rough play with Jack (or any sports for that matter,) no swimming and no long, relaxing baths (only quick showers allowed.) She was very sad to hear she couldn't go in the pool for the rest of the summer. Then we pointed out that she had a summer full of pool swimming and wave riding at the beach ~ and she agreed. I love this little trooper.

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Thanks again for all your prayers and support! xoxo

Comments Woot Woot!!! —Julie Williams, August 27, 2014 The best news ever! I am so happy for all of you. Enjoy the rest of summer's lazy days, and get ready for school.. Way to go Sophia! —Sheila Brune, August 15, 2014 So glad surgery was successful! And that labs are in the normal range. Yay Sophia! —Missy Bachkosky, August 13, 2014 Sophia is a great amazing child . Thanks to God ! —Blanche Tait, August 13, 2014 It was fantastic seeing you, & the family at the beach. Thank you, & the family for taking the time to visit me. Sophia looks great, youv'e all been an intricate part of Sophia's recovery. That support system is vital. Our prayers will always be with Sophia, and the family. Continued good health, stay well. Jane remember that Lady :) Love, Charlie —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., August 13, 2014 Heard the good news from Joe & Trudy yesterday. So happy for all of you. —Jeanne Rapazza, August 13, 2014 Awesome!!! Tell Sophia we heard that it's going to rain for the rest of the summer so she won't miss any good pool days:)

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—The Maher family, August 12, 2014 That is wonderful news. God blessed her through the years of ups and downs. —Jane Kipp, August 12, 2014 thank God for miracles-God Bless All! —Betty McCaul, August 12, 2014 News not need - silly autocorrect. —Sarma Ozols, August 12, 2014 Such awesome need!!! So happy to hear it! Hugs to everyone. And extra squeeze for Sophia. —Sarma Ozols, August 12, 2014 Fantastic, great news —eileen robson, August 12, 2014 Wonderful news! :-) So glad for you all. —Ben Consilvio, August 12, 2014

Update Jane McCaul, October 23, 2014

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The other night I was getting into bed as John said, "Do you think you should send out a Caringbridge update, you know to let people know how she's doing?" I bit my lip and just looked at him. John has the uncanny ability to read my thoughts (even when we're not face-to face; he knows exactly when to bring home chocolate or pistachio nuts) so I wasn't surprised when he said, "You haven't written because you're afraid of jinxing it aren't you?" Yes, yes I am. But I know that's silly and I should share what's been going on since I last wrote. Sophia began school for the first time in 2 years without a worry of "not being able to make it through the day." She made it almost a month before she missed a day (or 5.) She caught a virus which gave her a fever. At this point we're no longer supposed to call clinic with fevers but she was also complaining of stomach pain, leg pain and had a noticeable lump on the side of her throat (lymph nodes.) I tried to reason with myself saying that there were lots of simple viruses going around and that I shouldn't worry. But then I googled "leukemia relapse symptoms" and noticed all of the above. I waited another day until John came home from a trip then I casually mentioned these symptoms to him. To my relief he suggested we call the oncologist and try to be seen right away. I did and we were. Sophia's numbers all came back great, showing no indication of a relapse. Her blood work did show signs of an infection so more tests were done to determine which type of virus she had. In the meantime, she stayed home from school. In the end she tested negative for strep and mono. Her temperature returned to normal and she was given the green light to head back to school. She has been well since then and even began basketball practice this week!

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^^^That was the update I was writing yesterday afternoon when I received a phone call from Mrs. Madigan, our school nurse. Sophia had a fever and did not feel well. I actually laughed and said, "This is so funny because I was JUST writing an update on her Caringbridge!" (probably not the reaction she was expecting from me.) I picked Sophia up, brought her home, we did some homework then had some nice snuggling time. She went to bed super early and woke up not feeling great ~but with no fever. I'm keeping her with me today just to be sure she's OK. I'm sure she'll be back to school tomorrow. I suppose this up and down is the way it will be for the next few years and that's OK. Everyone talks about a "new normal" but I really don't think there is one. What the heck is normal anyway? We, the 5 McCauls, have always been different and we've always been blessed so we'll just carry on that way. xoxo, Jane

Comments I agree, there is no new normal after something that affects your life so much. I'm so proud of her! And you're a great mom, Mrs. Jane to help her through it all. It helps a lot to know that you have a mom that loves and cares for you no matter what you may be going through :) —Robin Bachkosky, October 27, 2014 Normal is so dull.....keep snuggling. Just drove south past Baltimore and thought of you all. Take care, love Cuz Liz —Elizabeth Wyman, October 26, 2014 Best wishes are sent for a happy and healthy school year for Sophia and happy trick or treating. —Beverly Consilvio, October 23, 2014 Our hearts expand and contract with each symptom and then good recovery. All you guys give us great joy and "excitement." You will all stay in our prayers especially our dear Sophia. Love to all. Mimi and Papa Gene —Margaret McCaul, October 23, 2014

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Life is ups, & downs, & it's how we handle the downs, that determine the outcome. Your'e are right in being safe than sorry, with Sophia. Trust your inner sole, and remember your in charge, nobody knows Sophia better than you. We sometimes get overwhelmed when dealing with a chronic disease, at times think we are overreacting, but better that way, than being sorry. I speak from experience, just thought I'd share. You guys are great, and have a beautiful family. Our prayers are with you, —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., October 23, 2014 Viva la difference! ( I bet I spelled most of that incorrectly) —Eileen, October 23, 2014 You as a family have never been out of my prayers... I like to refer to you as a unique family... there is no normal. love to all, esp. my girl-friend!!! Amy —Amy Philipp, October 23, 2014 Keep thinking positive and SMILE! You all are troopers and all will be well. Thinking of you and sending prayers. Sheila —Sheila Brune, October 23, 2014 Kiss Baby Girl for me. —Trudy and Joe sampugnaro, October 23, 2014

For you are fearfully and wonderfully made . . . Psalms 139 Jane McCaul, January 14, 2015

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Sophia turns 10 today! What better birthday present than a clean bill of health from Clinic. All of Sophia's labs came back normal yesterday so our birthday celebration is even sweeter! We began the birthday celebration the way we do every year; on the eve of her birthday we snuggle in her bed and read On the Night You Were Born by Nancy Tillman. I love this book and borrow a different quote from it each year when I wish Sophia a happy birthday on social media. However, last night I had the hardest time getting through the book. I don't know if it was the culmination of the day (clinic is emotionally draining,) or the recent loss of two family members, or the fact that I felt really present in the moment ~ but I was completely overwhelmed by emotion. Every time I would pause (which was quite a bit) she would look at me, smile her sweet smile and say, "It's OK, Mommy." About halfway through, John came in and asked if he should read it for me but I waved him off saying I could do it. I got through one more page before I turned it over to him.

â&#x20AC;&#x153;On the night you were born, The moon smiled with such wonder That the stars peeked in to see you And the night wind whispered,

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“Life will never be the same.” Because there had never been anyone like you…ever in the world. So enchanted with you were the wind and the rain That they whispered the sound of your wonderful name. It sailed through the farmland High on the breeze… Over the ocean… And through the trees… Until everyone heard it And everyone knew Of the one and only ever you. Not once had there been such eyes, Such a nose, Such silly, wiggly, wonderful toes. When the polar bears heard, They danced until dawn. From faraway places, The geese flew home. The moon stayed up until Morning next day. And none of the ladybugs flew away. So whenever you doubt just how special you are And you wonder who loves you, how much and how far, Listen for geese honking high in the sky. (They’re singing a song to remember you by.) Or notice the bears asleep at the zoo. (It’s because they’ve been dancing all night for you!) Or drift off to sleep to the sound of the wind. (Listen closely…it’s whispering your name again!) If the moon stays up until morning one day, Or a ladybug lands and decides to stay, Or a little bird sits at your window awhile,

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It’s because they’re all hoping to see you smile… For never before in story or rhyme (not even once upon a time) Has the world ever known a you, my friend, And it never will, not ever again… Heaven blew every trumpet And played every horn On the wonderful, marvelous Night you were born.” - Nancy Tillman

Happy Birthday, sweet Sophia. xoxo In loving remembrance of Michael Cooper Heinz and Donald Gifford.

Comments Love this book! And can only imagine how sweet it is for you to celebrate this special birthday with sweet Sophia!! Happy 10th, Sophia!!! —The Maher family, January 14, 2015 Happy Birthday, Sophia ! And many thanks, Jane.......how beautiful........<3 The Kellers —Laurie Keller, January 14, 2015 Sophia, you have the sweetest Mommy on the planet! Happy 10th birthday! Robin and Colleen are looking forward to seeing you and your family sometime soon. —Missy Bachkosky, January 14, 2015 You brought tears to my eyes Jane, Happy birthday Sophia —eileen robson, January 14, 2015 Great post!! Enjoy the rest of the day!

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—Maura, Tim, Patrick Moran, January 14, 2015 Happy 10th Birthday Sophia!! WOW !! Double Digits already!! Enjoy your special day! Wishing you all the best, that life has to offer. —Christina Connorton, January 14, 2015 Beautiful, So happy you are celebrating Sophia's 10th Birthday, so tell Sophia the next change will be at 100, went from single digits, to double digits, no change until triple digits. :) Enjoy your special day together. God bless, —Charles Guido Our prayers to your little Angel Sophia, and a Happy Mother's day to you Jane., January 14, 2015 Sheila Brune, You put into words my exact sentiments. Thank you. Happy Birthday, Sophia. Love to all the McCaul family. —Jeanne Rapazza, January 14, 2015 Happy Birthday Sophia. Love that book. You are so lucky to have been born into such a loving and amazing family. Hope your day was a perfect 10! xoxoxo —Mary Adkins, January 14, 2015 A thank you God ,heartfelt teary eyed and loving Happy Birthday to one of our sweet Earth Angels xo Big birthday hugs and much love to Sophia and all the McCauls xoxo —Theresa sapienza, January 14, 2015 Happy Birthday, Sophia! We are patiently awaiting the birth of our third granddaughter, What a great book to start off her life. Best wishes from the Consilvios. You are our heroes. —Beverly Consilvio, January 14, 2015 Jane, this is one of my favorite books too!! I love the whole set. Happy 10th birthday Sophia! —jodi muffley, January 14, 2015 Happy, Happy Birthday! Sophia!

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—Diane Madigan, January 14, 2015 stupid dusty office... —neal adkins, January 14, 2015 What a beautiful tribute to a beautiful l0 year old. I am so happy that things went well yesterday. Indeed, the best ever present. Jane, tears are flowing. I never cease to be amazed at your strength, faith and inner beauty. You and John are one special pair! —Sheila Brune, January 14, 2015

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