Sophie's Story

In our mission to provide the best references and resources in science and research, we are also dedicated to delivering the real-life stories of individuals and families whose lives have been impacted by cannabis. We recently connected with Tracy Ryan, who is a passionate advocate, entrepreneur, and parent. Some of you may recognize Tracy and her daughter Sophie from the recently-released film documentary, Weed The People, which is now available on Netflix, Amazon, Youtube, and Vudu. The film follows several families with children whose lives are impacted by cannabis, including Tracy’s daughter Sophie, who was diagnosed with an Optic Pathway Glioma brain tumor at just 8 1/2 months old. The doctors said the tumor would cause Sophie to go blind in her left eye, and she would eventually lose sight in her right eye as well. Then, with the help of cannabis oil, the tumor shrunk, and her vision was saved. This ending may be a happy one, but as with most families who struggle through similar circumstances, it was not an easy road for the family to begin cannabis treatment. With that being said, we are honored to share the experience Tracy and her family went through to save Sophie, and create both CannaKids and SavingSophie.org to make a difference in the world.

Q | In your own words can you tell us a little bit about how you got to where you are now?

A | Yeah, absolutely. It’s definitely been a lot of hard work. Blood, sweat, and tears. I really built CannaKids with next to no money. We’re lucky enough to be closing some funding now, but we really have done this, just out of true desire passion and grit with my daughter being diagnosed with a tumor when she was 8 1/2 months old. It was really difficult for me to learn that there was basically no research being done for pediatric cancer and that only two drugs had come to market in the last 30 years. Only 2.8 percent of all government funding even goes to pediatric cancer research so these children are using medicine that not only is extraordinarily toxic, in many situations, it causes future issues like secondary cancers that are more aggressive and more deadly, also organ damage, addictive behaviors to opioids because the pain is so severe, and so on. I just knew I wasn’t going to settle for that, and I didn’t know how I was going to help my daughter, but I knew I had to do something extreme since no one else really seemed to care about these children. From a research standpoint and with these type of tumors, because it’s 85 percent or 90 percent survival rate traditionally, it’s also an 85 percent recurrence rate, so six years later, she’s still on chemotherapy, and we’ve got patients that have been on chemo with this type of tumor for up to 13 years, but there’s zero research being done on this tumor because it’s considered survivable. So, there was really no hope for my daughter except to take the path that Western medicine had available to her in hopes that at some point this tumor is going to stop messing with her. And that’s really what started all this. And it’s been through a lot of networking, advocacy, public speaking, and throwing events while aligning ourselves with politicians, celebrities, research scientists, and medical professionals that’s really helped us carve out the path that we are now walking down. It’s a very exciting one, and it’s one I never anticipated I would be on, but I’m thrilled to be participating in because the research we’re now doing due to Sophie being so successful with her treatments and also me being so desperate to find her better options.

It’s led us down a path to where we now have 14 of our patients enrolled, or we’re studying the blood of patients who consume cannabis and looking at this from an immunotherapy standpoint, and my research scientist and I are going to be filing over 100 pages worth of patentable cancer findings here in just the next couple of weeks that we’ve been able to discover over the last year, which is extremely fast for research. So, we’re very excited about that, and we are placing an order for more synthetic cannabinoids that we can get into the lab. We don’t have to use this schedule one license since we’re still in the process of trying to piggyback onto another license that someone holds at the university where this research is being done, but what we’re finding (just with the synthetics right now) is already absolutely groundbreaking and we know it’s going to continue to lead us to some really profound findings that we do believe will help us come up with novel drugs for cancer patients and not just one cancer but many cancers that are non-toxic and that’s really the goal. So that’s kind of the long and the short of it. Just pure desire, a little bit of luck—if you will—and a whole lot of hard work.

Q | That’s phenomenal. Thank you for focusing on the research. It’s definitely something that always gets brought up is that there isn’t enough even though there is so much, so the more, the better.

A | Sure absolutely. We just need more in pediatrics because there’s some real profound things we’re seeing currently, and it is extremely exciting. The main goal for my scientist and myself in life is truly to help people. That’s all she cares about. That’s all I care about. And after her witnessing some of the things she’s seen in our cancer patients, she is now more excited than ever that we’re doing is going to be able to help patients of all ages with all disease types in this field shortly. We think this research is going to be very quick.

Q | If you don’t mind sharing, what have been some of your biggest struggles as a parent either emotionally, financially, etc. that you’ve had to endure during this process?

A | Well, the emotional struggle has been a pretty profound one. We were very blessed and lucky at the very beginning of our journey when Sophie was the sickest she’s ever been. And we were the poorest we’ve ever been. Stephen Amell from the TV show Green Arrow did a Facebook campaign for us, and it was the first one he ever did on social media for a cancer family. It was a Monday, and I didn’t know how it was going to pay my rent on Friday. Plus, we were over $90,000 in debt with all of the medical bills that had been piling up and putting money on credit cards just trying to survive and all the medicine that we were using for Sophie was just really bad and for middle income families which we were there really isn’t any help. We didn’t qualify for Medicaid and there were no financial services out there for people like us. You have to be really really broke and your tax returns had to be really pitiful in order to get support from most charities. We’ve been lucky to find a couple that really do cater to more middle income families. But Stephen, in two-weeks-time, raised us $95,000. And unfortunately, we didn’t keep much of that because we paid off all of our bills. It saved us from bankruptcy to allow us to really go down this path of CannaKids and Saving Sophie which has now become this really incredible movement that we’re a part of. But it’s been a real struggle, and I mean to this day we’re struggling, and as you know—as I mentioned a minute ago—we’re working on closing a really great round of funding, and we’re almost done. But between Sophie’s doctor’s appointments and hospital stays and now legalization has happened in the cannabis industry since 2018 which has been detrimental to so many brands because of the way the laws were structured including ours, to just the overall emotional roller coaster that we’ve been on for six solid years. I mean it’s not for the weak of heart. I will tell you that, and my husband and I both have had to do a lot of work on ourselves. It really affected our marriage in a very negative way, for about a good four and a half years, because when you have a sick kid you know you lose a lot of your friends. They don’t want to be around you because you’re no fun anymore. You’re the fun couple with the cute kid. Now you’re the sad couple who’s always in the hospital and really needing support and so most cancer parents lose a lot of their friends when this happens. You don’t have any money or you know you’re looking at a child that is just riddled with pain and vomiting and diarrhea and losing hair.

So, the first person that you take it out on is your spouse. And it really caused a lot of distance between us for a while, and it was sad because we were such a happy couple when we had Sophie. We’ve really had to do a lot of work on ourselves, and we have. It’s really been quite profound over the last year-year and a half how we’ve both evolved, and we’ve evolved together. And I’m happy to say that we’re happier today than we’ve ever been. But it has been a real struggle to get here. 85% of all families who have a sick child end in divorce and only 15% of us actually stay married. That tells you how high the divorce rate is for couples like us. So, it’s been exhausting. It’s been heartbreaking, but there have also been so many wonderful beautiful things that have come from such a terrible situation. And my family and I really truly believe that this was just why we’re here. We believe that we’re here to suffer a little bit more than the rest, but to also use that suffering for good, and to continue to evolve our understanding of this plant, Western medicine, research, and patient care, so that we can take our individual struggles and help millions of people around the world not have to go through what we’ve had to go through.

Q | You mentioned part of the struggle was that you didn’t have anywhere to turn being in that situation. Are there any help or resources that you recommend for other parents?

A | The BumbleBee Foundation has been a really wonderful charity that’s local here in Los Angeles. They are a couple who lost their son to cancer, and they, too, were a middle income family, and they also saw there was just no help out there for parents who are used to making pretty good money. We were by no means rich, but we were by no means poor, and they have been so gracious and kind to us and wonderful. We’ve really been working very closely with them for a long time. Create A Smile is also another incredible charity that we’ve continued to work with and be friends with. They came in when Sophie was little and was having to be home schooled, and built out a whole little work center area for her, a little school zone in her bedroom so that she had somewhere to do her lessons with her teacher so she didn’t have to sit in the floor and do her work. They’ve been wonderful. Team Lilly Bumpus has also been gracious and kind over the years. Every holiday, they send care packages to the kiddos; Christmas, Easter, Halloween. We’re always getting these really great care packages stuffed full with gifts and Make A Wish has also been incredible. It’s then since Sophie was three where she had her make a wish, and man did they take good care of us. They were absolutely incredible.

Phenomenal organization and I highly recommend anyone that has the means to donate to their cause, because they really do a lot for families like us who just need a break. We need to unwind and disconnect and we need to do so in a fashion that works for us and works for our kid because you know it can be a roller coaster as to whether or not she’s healthy or sick.

Q | Can you tell us more about Sophie’s Make a Wish?

A | Yeah it was an awesome trip. We got to go to Florida and stay at this resort called Give Kids the World run by all volunteers, and it’s strictly for children who have severe and terminal diseases, and it’s literally like Willy Wonka wonderland. Even the little houses you stay in are just so adorable and colorful, and they bring all the Disney characters, and they’ve got these little carts that come around at night that are driven around the streets with hot chocolate chip cookies and milk, and they do tuck in with the characters, and they’ve got a theme park. It’s just so amazing and then they you know they gave us tickets to all the amusement parks, every single one of them, spending money on t-shirts, airfare, limo service. It was really wonderful, and it was really something at the time that we really needed, and it really helped us.

Q | One of the other things you mentioned was the losing friends. What are some ways people could help a family going through similar circumstances?

A | You know, at the end of the day, me as a mom and as an individual, of course this is my opinion, about you know what my journey has been like. I don’t really need someone to feel sorry for me and do the woe is me and pat me on the back and say “There there; everything’s going to be okay.” Because at the end of the day reality is reality. Either it’s gonna be okay or it’s not going to be okay, and I don’t need someone to constantly remind me that you know everything’s gonna work out. I believe it’s gonna work out. But you just never know until you know although I’m 100% confident that Sophie is going to outlive all of us, as are her doctors. I need somebody just to be a friend. I need somebody that wants to just call and chat and get caught up on what’s going on in life. and how are we doing, do we want to go see a movie sometime or do we need somebody to come over and watch Sophie for a couple hours so we can go out and have a date and have couple time? My husband and I haven’t had a date in probably 9 or 10 months, maybe longer, and also oddly enough I really want, because of the type of person I am, I like it when people call me with their problems, and they need my help with figuring out how to navigate their lives, because then it helps me not feel so alone like I’m the only one in the world that has these horrible issues. And it also takes my mind off of what I’m doing and allows me to give back and be of service to other people which also (for someone like me) is very therapeutic. We just need people to be people. We’ve never needed somebody to bring us meals every night, give us money, or come over and let us cry on their shoulders. We have family members that can be there for us and can do that. We just don’t wanna be left alone. We don’t want to be abandoned. We want to feel like the people that have been in our lives for a long time actually care enough to continue to stay there whether or not we’re going to be able to go out on the weekends with them and go out and have a drink here and there because we just don’t. We don’t have time for that nor do we really have the desire, but a phone call is great. And it’s just, for whatever reason, people aren’t always as kind hearted as what you would expect them to be. It’s a pretty sad circumstance.

Q | What would you tell other parents considering cannabis as an option for their children?

A | I always say if the world can jump into my head for five minutes and know what I know and see what I’ve seen no one would question whether or not this plant needs to be legalized. They just wouldn’t. They wouldn’t question it. I mean it’s absolutely and completely profound, what we have seen with the thousands and thousands and thousands of patients that we’ve worked with. We just had a little girl who has autism. Her mom sent as an email, the day before yesterday, and this is a little girl who was very autistic with very bad behavioral disorders in school and was just really struggling and having a hard time. We got her on our THC Full Spectrum Protocol and she has done so well that there were three students out of the whole school that were recognized for outstanding achievement and she won the most improved student award just a few days ago and got a certificate. And that’s on the regular whether it’s autism, ADD and ADHD patients, we help way more than we don’t. We’ve got a very high success rate with that condition. With cancer, I can tell you firsthand from a research standpoint, from doing hard cancer research with one of the world’s leading immunologist cancer scientists who has been in the field of cancer for 30 years, I can tell you firsthand that we now see the profound and positive impact that cannabis is having on the immune system. I intend on proving that every person on the face of this planet should be consuming CBD every day of their lives. We’re working to find out how important the role of THC is.

I personally believe there needs to be a little bit of THC in everything, but I want to find out what the role is of using high THC. I can also tell you firsthand that if you know how to dose you can keep from ever getting high. I take 45 milligrams of THC at night and I feel next to nothing, because I’ve slowly over the last year, built up a tolerance so I could be at a higher dose. It helps me with the inflammation and the arthritis that I’ve had in my body in the past, helps me with sleep, helps me with immune system stimulation, and just overall stress and anxiety, and also blocks my nightmares that I tend to have when I don’t have my cannabis. I have had x-rays recently and the arthritis that I used to have in my body is now gone, and my chiropractor cannot explain it because my spine twisted and has been more than likely since birth that I have. I’ve got a slight curvature in my spine not necessarily like severe scoliosis, but I should have a lot more issues than what I have right now.

There was a study recently that came out that showed that cannabis is literally reversing arthritis, and I’m living proof of that. I’ve seen it on my own scans and with these other children who have seizures. You take my kid off of cannabis, and she’ll have ten seizures in two days.

You put her back on and she’ll have one or two a month. And we see that with children. I’m not gonna say every single child has that much success, but they traditionally have way more success with candidates than they do with the pharmaceutical therapeutics that are available to them today in the observational studies we’ve done and the anecdotal data tracking that we do.

That’s just a few of the types of diseases. We’ve treated hundreds of different kinds of diseases, and I’ve even seen reporting in the past that leads to the fact that cannabis can actually work for over 500 different ailments and diseases— from being an anti-inflammatory, to a sleep aid, to a painkiller, all the way to a cancer preventative, a cancer killer, and everything in between. So now, with the research we’re doing, we are starting to understand why that too is the case. Why is it that we have this one plant that’s helping with so many things? What is that mechanism of action? What is it that is taking place in the body that’s allowing the body’s immune system to auto correct itself and fix the diseases in them, and what’s broken within their body with just this one medicine? We are very close to being ready to file that patent ,and as soon as it is accepted and our data is protected, we’re going to be communicating those results quite vocally.

Q | Is there anything you’d like to add that I haven’t covered or that you would like to bring attention to?

A | Sure. You know a lot of the things that we’re doing on the research side, we’re able to afford through philanthropic donations from individuals who really believe in this cause, who have disposable income that they want to put towards participating in this research to a tax deductible donation. We really need to continue raising more and more money that way. Right now, the next set of trials that we need to do that we believe are going to result in some of the most important findings the community has seen in the world of cancer, are going to cost us about $230,000. We are going to be doing an event the Friday before Thanksgiving on November 22nd. We also have the ability for people to go to SavingSophie. org and make direct donations there. We really want to ask the community to pitch in and help, whether it’s $5, $5000, or, $500,000. Every dollar helps us get one step closer to being able to really provide incredibly powerful medicine that isn’t going to brutalize these patients the way [traditional medicine] has in the past. So that’s really the one message we always tend to put out there, is that if you are willing to support us please do, because we really need the financial help to keep these trials moving and moving swiftly. The other thing that I’d like to say is that for patients out there who are looking for support, who are still on the fence about cannabis, and who just in general don’t know how to navigate this very complex medicine, where there’s a million different options and all different types of dosing possibilities. We have nurses that you can call, you can book a phone call with, and through that phone call we will first do a full medical intake; we’ll give you paperwork you can fill out on your iPhone or on your computer digitally, and our nurse will review that medical information.

After reviewing it she will customize the dosing protocols specifically for that patient, recommend products to take for that ailment, and then also how to titrate that medicine in a way that keeps them from becoming psychoactive because it’s really our goal here to get patients well, not high. And that’s a really amazing opportunity that we have available to patients that most brands don’t offer. And I can tell you firsthand, it is a very difficult medicine to navigate, because again there’s just so many different ways that you can take it, potencies, formulations, cannabinoid compounds, and so forth. We try to make it as easy as possible, while also really treating this like a medicine from a scientific standpoint based on years of research and anecdotal evidence.

CannaKids.org