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Childhood Cancer Awareness Month Cela’s Story
September is Childhood Cancer Awareness Month
Cela Sewatsky passed away on
April 22, 2022, when she was 17 months old after being diagnosed with cancer four months earlier. She died two days after her sister Lena was born. Cela had a malignant rhabdoid tumor of the kidney that spread to her lungs. This rare childhood cancer typically starts in the kidneys but can occur in other soft tissues or the brain. The average age of diagnosis is 15 months with a survival rate of 23.2%.
Melissa and Alec Sewatsky met in May 2017 and married in June 2019. Melissa is employed as a pharmaceutical marketing manager and Alec is a painting subcontractor. Cela (named after her dad, spelled in reverse) was born on November 11, 2020. It was one of the best days of the couple’s lives. Baby sister Lena was born two days prior to Cela’s passing, on April 20, 2022. “It was a true gift and miracle that our girls got to meet,” the couple said. The couple said that Cela was one of the most charismatic and happy babies they had ever met. “She loved her family, her pets, nature, her toys and most of all, her favorite show... Bluey. She’d wake us up in the middle of the night or first thing in the morning to watch it. She had a great sense of humor and a multitude of different laughs. We were very family oriented so we did a lot together. (Prior to her diagnosis, we were staying home because of the pandemic) Making pizza
together was a favorite family activity that had a goal of trying to get it in the oven before Cela ate all of the cheese! Some of her most notable characteristics were her fiery red hair and piercing blue eyes. ”A final gift that she gave her family was showing how great of a big sister she was. Moments after Lena was born, Cela was seen gently stroking her new sister’s hand and head. It was one of the last times she was conscious, as if she held on just long enough to welcome her sister
Cela became ill shortly after her first birthday. We noticed different and progressing symptoms over the course of a month. She had become very clingy, no weight gain since 9 months of age, distended belly button, a period of blood in her urine, and, finally, a lump in her abdomen. The couple took Cela to the ER for urine cultures and repeatedly contacted the pediatrician. Their concerns were dismissed. “Unfortunately, since pediatric cancer is so rare, often doctors aren’t well versed in recognizing the early symptoms.” Finally, the couple insisted on having Cela seen, the day before New Year’s Eve. When the doctor saw her that day, she was immediately referred for an ultrasound that confirmed a tumor.
Cela was immediately transferred to the Children’s Hospital of Philadelphia (CHOP). A biopsy confirmed that the tumor was a malignant rhabdoid in the kidney. Further scans showed that it had metastasized to her lungs. tering (MSK) in NYC. Cela’s parents were initially told that she would need routine scans (PET, MRI, ultrasound, CAT), nine months of intense chemotherapy, radiation and surgery to remove both her right kidney and the tumor. After two rounds of chemotherapy, the tumor shrank enough to have surgery. However, the tumors in her lungs had stopped responding to chemotherapy and began growing again. Cela’s prognosis was severely hindered by the fact that she stopped responding to chemo.
Further testing was conducted on the genetics and revealed that it had the SMARCB1 deletion, further confirming it was a rhabdoid. Cela, thankfully, did not have the SMARCB1 genetic deletion, meaning it was not genetic. Rather, it was a spontaneous event. The couple also secured second opinions from Dana Farber Cancer Institute in Boston and Memorial Sloan Ket-
Surgery to remove the tumor and right kidney was scheduled for March 2, 2022, but sadly there were too many tumors in her lungs to remove. Next, Cela was enrolled in a clinical trial using immunotherapy drugs. Unfortunately, the immunotherapy drugs did not work. The tumors in Cela’s lungs were rapidly growing and there was even a new growth where the original tumor was removed. Throughout this process, the couple was highly focused on Cela’s quality of life “At no point did we want her to be in pain or suffer. When we learned that her tumors were still growing and that medications likely wouldn’t stop it, we decided alongside a medical team that we would stop treatments, start palliative care and keep her as comfortable as possible,” the couple said. “One of the sadder things that we have learned throughout this process was that there isn’t a ton of innovation in the chemotherapy drugs used for treatment. We were told that some of the chemotherapy drugs were the same ones being used since the 1960s. Pediatric cancer is grossly underfunded and the type of cancer that Cela had was so rare (only 20-25 cases in the U.S. per year) that there is even less funding,” the couple reported. The couple says that “we grieve for her in some way, shape or form every day. It’s not just the loss and the memories that are tough to process. We are both still learning how to move forward every day without her. Pool days aren’t the same, mornings aren’t the same, nothing is the same. Our home carries a much quieter tune. It was only four months from diagnosis to passing, so we weren’t able to process anything during that time. All of our focus and energy was spent on Cela and her wellbeing. We were both actively involved in counseling prior, and continued with it through her illness, followed by grief counseling.” Melissa is in the beginning stages of EMDR (Eye Movement Desensitization Reprocessing) therapy and Alec tries to find as much solace as he can through nature, meditation and a cancer blog (celas_crew_cancerblog on Instagram), and he is pursuing a safe form of psychedelic therapy. “Without the support of our family and friends, we never would have
been able to focus all of our energy on Cela. The incredible amount of giving, whether it was through GoFundMe, food certificates, gas cards, meals being sent to the house or constant uplifting texts and messages, was what kept us going. Everyone who was involved in any way officially became part of ‘Cela’s Crew.’”
The couple advises other parents to “not be afraid to advocate for your child. You are their voice and representative. We realized daily that we endured possibly the worst personal experience you can have in life. An incredible amount of stress, sadness, bargaining and anger occurred. It is more important than ever to know how to take care of yourself so you can be there for others. That comes in the form of self-compassion, taking time for yourself, not seeking out short-term fixes or distractions, and making the most of the moments you do have. We remind ourselves to 'Be Here Now.’ We put our phones away and we cherished all the time we
had with Cela. Reaching out and venting to trusted friends and family helps more than you know. It allows you to let other people help carry the burden. We’ve learned the power of perspective, but even more so that perspective is a choice. We are both on our personal journies to find what is really important.” Alec is pursuing a more meaningful career trying to help others. “Time is a gift and we don’t intend to work our lives away for financial gain or security. We’re not trying to compare our lives with others. We’ve cut down on phone time and other daily distractions keeping us from the present moment. One of the quotes that have been helping us since Cela’s passing is 'happiness is found in peace, not pleasure.' Just as the pandemic reminded everyone of the need to slow down, Cela reaffirmed it. We enjoy walks, fires, time with friends and family, enjoying nature and adoring Lena. Awareness of working on mind, body and spirit health is high on our list. Cela gave us a new scale to weigh life’s problems; admittedly, a lot of them don’t carry the same weight. In her eulogy, Alec mentioned that Cela was their teacher. ‘We were blessed to have the time we did with her and we both aspire to touch people as much as she did. We are still in the early stages of creating a foundation in her honor to start to help others.'” H
Watch ME Grow!
Every child grows
and learns new skills at his or her own pace. Children can vary in skills and development. You know your child better than anyone else. If you have concerns about your child’s development, early intervention can help.
Early intervention (EI) in Pennsylvania consists of services and supports designed to help families with children who have developmental delays or disabilities. EI services can include information about how children develop, parent or caregiver education, family supports and developmental and instructional therapies that assist in child development. Early intervention builds upon the natural learning that occurs in the first few years. It is a process that promotes collaboration among parents, service providers and others who are involved with the child. Look at the skills with your child’s age and if you have concerns about development contact early intervention. This is only a brief list of developmental stages not a complete list of milestones.
By 6 months
• Knows familiar faces, smiles, • makes cooing sounds • Lifts head, begins to roll over, • holds toy briefly • Likes to watch their own • hands and looks at things • around them • Wants to try new foods, seems • excited about being fed • Can bring both hands to • center, plays with toes, holds • head up and rolls
By 1 year
• Rolls a ball, looks for • dropped toys • Likes to play with a toy, can • use a cup with help • Sits up, creeps or crawls, • pulls up to stand • Says and understands • a few words • Starts to stand alone
By 18 months
• Starts to say several words, • makes noises as if talking • Rolls a ball, does things • they see others do • Takes off some clothes, • puts things in a box • Uses a cup, spoon and • kicks a ball • Starting to run and • climb chairs
By 2 years
• Speaks several words together • Feeds self with spoon and • drinks from cup • Points to body parts • when asked • Kicks a ball, walks up • and down stairs • Likes to hear stories, play •alone for short time
By 3 years
• Enjoys pretending • with toys and adults • Easily picks up • very small objects • Uses three word sentences • Enjoys playing • with children but • may be shy • Puts on coat, • shoes and hat
By 4 years
• Tells little stories • Understand con•cept of some num•bers and colors • Speaks in • longer phrases/ •sentences
• Dresses and feeds self • Gets along and plays with • other children
By 5 years
• Matches spoken words with pictures • Follows directions that have two steps • Speaks clearly and can be understood • by others in the family • Recognizes and copies some shapes • and letters • Counts to ten
Who is eligible for EI?
Infants, toddlers and preschool children who have special needs due to a developmental delay or disability are eligible to receive early intervention services.
Where do children and families receive supports and services?
Services may be provided during the child’s daily activities at home or in the community, at child care centers, preschools, playgroups and Head Start programs. Local Early Intervention Program Children Birth through 2 Years Luzerne-Wyoming Counties Early Intervention Program Phone 570-831-7224 or 1-800-816-1880 Children 3 to Kindergarten Age The Hazleton Area School District 570-826-0850 or 570-454-1870
Early Intervention in Pennsylvania Statewide CONNECT Line: Linking families to early intervention services and support. 1-800-692-7288 | www.connectpa.net H
Every child grows and learns new things at his or her own pace. You know your child better than anyone else.
If you have any concerns about your child’s development WE CAN HELP!
YMCAs of NEPA
The Y is a cause-
driven nonprofit organization that focuses on youth development, healthy living and social
responsibility. Believing that positive, lasting personal and social change can only come about when everyone works together to invest in the kids, health and neighbors of the community is at the core of its operation.
The Y takes immense pride in working to strengthen communities to help each member to be their best best. The Y provides a place to play, to learn, to be healthy, to eat well and to give back. Parents can find childcare, young adults-job training, seniors-a way to connect and children-a safe place to go. Everything the Y does is in service of making sure people and communities thrive based on the belief that absolutely everyone deserves the opportunity to reach their full potential. By bringing together people from different backgrounds, perspectives and generations, the Y ensures that everyone has access to the opportunities, relationships and resources necessary to learn, grow and thrive. Today, the Y engages more than 10,000 neighborhoods across the U.S. as the nation’s leading nonprofit committed to helping people and communities. The Y’s contributions are both farreaching and intimate — from influencing the nation’s culture during times of profound social change to the individual support provided to people in need.
The Greater Wyoming Valley Area (which includes the WilkesBarre Family YMCA, Greater Pittston YMCA, Greater Scranton YMCA, Greater Carbondale YMCA and Wayne County YMCA) offer something for everyone. From summer day and overnight camp, chronic disease prevention, and youth sports and enrichment programs to group exercise classes, early childhood education, and programs designed to
combat the achievement gap, the Northeastern Pennsylvania YMCAs make a profound impact on the lives of the individuals and families served. Collectively, the Y’s serve thousands of individuals and families from across the region through memberships, programs and events.
The Y is a charity turning no one away for an inability to pay. The Y believes all families deserve the chance to
grow stronger together through a family membership; all children deserve the chance to attend an early childhood education program, allowing them to enter kindergarten ready to succeed; all adults suffering from chronic health conditions deserve the chance to participate in a chronic disease prevention and management program; and all youth deserve the chance to experience summer camp. The Y is more than a gym. It’s a cause. Join in! H
Locations
Wilkes-Barre Family YMCA
40 W. Northampton Street Wilkes-Barre, PA 18701 (570) 823-2191 www.wvymca.org
Greater Pittston YMCA
10 N. Main Street Pittston, PA 18640 (570) 655-2255 www.wvymca.org
Greater Scranton YMCA
706 N. Blakely Street Dunmore, PA 18512 (570) 342-8115 www.greaterscrantonymca.org
Greater Carbondale YMCA
82 N. Main Street Carbondale, PA 18407 (570) 282-2210 www.greatercarbondaleymca.org
Wayne County YMCA
105 Park Street Honesdale, PA 18431 (570) 253-2083 www.wcymca.com
Why is a CSO Important for Cancer Patients?
Mary Klem, nutritionist at Northeast Radiation Oncology
Centers in Dunmore, recently recertified as a CSO: Board Certified Specialist in Oncology Nutrition. It makes for a lot of initials behind Mary’s name: M.S., R.D., CSO LDN, and what that means is that cancer patients benefit greatly
from seeing her! When people are trying to juggle life with a cancer diagnosis, their first thought may not be about their diet. However, following a healthful nutrition plan during and after cancer treatment is important to help patients maintain their strength. To earn the title of CSO, a recommended minimum two years of clinical practice with documentation of 2,000 hours of practice experience in the oncology care setting is required, in addition to passing a standardized exam. The Commission on Dietetic Registration (CDR) offers Board Certification as a Specialist in Oncology Nutrition for select registered dietitians who meet the criteria. Mary initially earned the CSO certification when the first exam was given in 2008. Today she is one of only 42 registered dietitians in Pennsylvania to have obtained it; there are 857 in the entire U.S. Mary Klem is pictured with Lily, her certified therapy dog, who is regularly on duty with her. H
