COTA for Jack Strong

Our Story

One day our 1.5yr old son, Jack, came home pointing to his tummy and saying “hurt.” When we pressed on his belly he shrieked in pain and we noticed it was a bit distended and firm. We called our pediatrician who said it was constipation, but we insisted on coming in to get checked. The pediatrician on call said it was constipation and put us on a “clean out” regimen. A week later, his stomach was still distended and firm – no progress. We went back to see our pediatrician to get it checked out again. She felt Jack’s belly and instantly told us to go to the Emergency Room. We were confused – we thought it was just constipation. My happy boy walked right into the Emergency Room, flirted with the nurses and played on the chairs in the waiting room, besides the belly he was his normal happy self. We got a room and the doctors ordered scans. Next thing we know, there was an oncologist in our room saying that she was looking at our scans and that our son’s liver was enlarged due to tumors and it was taking up the majority of his abdomen. I kept thinking to myself, why are we talking to an oncologist? They deal with cancer. My son doesn’t have cancer. They said they needed more information and they were going to admit us… to the 7^th floor – oncology. As we were going to our room, I saw sweet faces peaking out to see who was new on the floor, the oncology floor. It still felt like we weren’t supposed to be there.

The next few days were a blur of different tests, scans, IVs, blood draws, and a biopsy. Many doctors were coming up to us and saying things like, “when your son gets a port” and “when he gets chemo,” but we didn’t have a cancer diagnosis yet! We were still holding on to hope. On Monday morning, our oncologist came in and said the biopsy results were back. It was confirmed: hepatoblastoma, a rare liver cancer that effects kids 8 months to 3 years old. He would need a port put into his chest and to start chemo right away. We were in shock. The next day, he went under anesthesia for 6 hours, had 2 scans and his port was inserted. Wednesday came around and we were waiting for when we were going to start chemo, instead, we got more news – our son’s diagnosis was pretext (stage) 4, meaning that his cancerous tumors were in all 4 sections of his liver and he would need a liver transplant. Again, our world was turned upside down. Thursday, we were cleared for chemo and our journey was underway. In the 10 days we were in the hospital Jack went through 6 scans, under general anesthesia twice, 2 IV’s put in, 1 port implanted into his chest, 2 rounds of chemo and 5 different chemo drugs. We were able to leave the hospital after 10 days of being admitted and are happy to be home. We have a journey ahead of us with chemo weekly and a liver transplant in our future, but we’re full of hope for our Jack!

We are so grateful for our support system of family and friends who stepped up to watch Jack’s 3-month-old sister, Mia, at home, bring us food to the hospital and to keep us in their thoughts and prayers. We know Jack is strong and can get through this. We appreciate all of the love and support of our community, we wouldn’t be able to do it without you.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.