Childhood Cancer Awareness Month: Isaac’s Story

“I felt like a normal 10-year-old before. I liked playing soccer and was just learning to be goalie.”  But following one of Isaac’s soccer practices, his body broke out into a full-body rash. Like most people, his mom thought the field had been sprayed with a pesticide. And that’s when everything escalated. Just a short week later his family learned that Isaac had a softball-sized tumor around his liver.

At 10 years old, Isaac was diagnosed with fibrolamellar hepatocellular carcinoma, something most doctors said was “inoperable and incurable.”  After 9 rounds of chemo, the doctors were all saying the same thing. “Chemo was not shrinking the cancer, although it did keep it stable,” recalled his mother, Krystal.  Many hospitals told the family that Isaac was not a viable transplant case. That is until they found the New York-Presbyterian Morgan Stanley Children’s Hospital and Dr. Tomaoaki Kato who agreed to take Isaac on as a patient and perform a living donor liver transplant.  His dad was a perfect match.

Isaac says there were many things he couldn’t have gotten through without his cousin, Caleb.  “They are best friends, and no one could distract him like his cousin,” said Krystal.  “He came to the hospital every time Isaac was admitted and came to the house every Sunday that we were home.”  Isaac recounted the times that his cousin came and laid in his hospital bed and watched movies, played video games, and built Lego sets with him.

Krystal also thanks friends at the school for support during the difficult time.  “Isaac was diagnosed in the summer between 4th and 5th grade. The school worked together [with us] and came up with a plan for 3 amazing teachers to come to the house and teach Isaac one-on-one to keep him on track with his peers.”  That was just one of the many good-will gestures from the school community. Krystal remembers Christmas when the entire 5th grade class caroled on their doorstep.

“I feel like before his diagnoses I always stayed away from people’s pain,” said Krystal about the impact it has made on her life.  “It’s not that I didn’t care or want to help, but I had never experienced pain or trauma like that before and I didn’t know how to deal with it. When people came flooding into our corner during Isaac’s fight it made me aware that even an offer for a prayer or ‘checking in’ with someone goes a long way. My goal now is to always meet people on their battlefields and fight alongside them. Many people in our lives showed me exactly what that looks like.”

Isaac has a new perspective on life and has learned to appreciate the little things, like spending time with friends and doing the “normal” things more than he ever did before.

The successful liver transplant took place on January 15, 2019. We’re now happy to report that Isaac has been in remission for 3 ½ years. He hopes to become an engineer someday. But for now he’s back on the soccer field, this time playing defense for his rec team, and hopes to make his Great Hearts high school squad this winter. Isaac is still closely monitored and requires many doctor and hospital visits, but he is thriving.

In his free time, Isaac also has an interest in building and engineering. After graduating high school and finishing college he hopes to become an engineer. Isaac’s parents, Craig and Krystal, say he is looking forward to driving soon and is talking about saving up money to buy a car when the time comes.

Childhood Cancer Awareness Month is recognized around the world every September.  With a goal to increase awareness and raise funds for those affected by childhood cancer, the American Childhood Cancer Organizationencourages everyone to Go Gold® during September in honor and in memory of kids with cancer!  #GOGOLDwithACCO

Do you have a story or know of a story that you would like to see featured at Great Hearts?  Please contact jmoore@greatheartsamerica.org.