September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
Where do you begin with a story like this? We are new to PCFLV, so I have not had the privilege of hearing other stories or meeting many families in the same situation. Beginning in March we knew that Bryce was sick. Sick to us though at that time was a cough. A persistent fever. Pneumonia maybe? The doctors even suggested whooping cough. Tests came back negative but he was put on an antibiotic to try and "kill" whatever was causing him to not feel 100%. We were told to wait three weeks and if not better to call back. Fast-forward to April and at that point Bryce lost most of his appetite and he was very tired. We were seen the day I called again and at that point the doctor could feel something was not right. We were sent for a chest X-Ray...it was clear. From there, for an ultrasound at the hospital. When I called my husband, I was very laid back. Many times my kids have been sick. To me it was just routine and simply to rule anything out. His gut told him otherwise as he left work early to meet us at the hospital. For that I am eternally grateful. As we sat in the room watching the ultrasound tech snap a million photos and write "A", "B", "C" on spots it was clear there was something. Chris and I continued to joke with Bryce and keep the mood light. We stood in the room as the ultrasound tech called our doctor and asked her to talk with us about the findings...masses...several masses in his abdomen. They were not sure but we needed to prepare for what might be found as being cancer. Bryce was immediately admitted upstairs at LVH. Everyone was amazing but it moved very quickly. I am not too naive. We have had many friends affected by childhood cancer. Many family members as adults. But never once did it cross my radar that we would be in this boat. Years before I shaved my head as I watched my son's preschool friend battle cancer and his family stand as a tree. As Chris and I sat in the hospital, we still thought it was not truly cancer. Must be a mistake.
Without family in the area, I was quick to call my best friend for help. With two other kids at home, I needed her more than ever to be there for them and to reassure them. One doctor after another and it was decided that the mass needed to be removed. They could not get a clear photo due to the size and location so it was decided that the day before Bryce's 13th birthday, he would have the surgery. We were told the risks. We were told by the surgeon herself that she was truly unsure of what she would find and that no promises were going to be made.
On April 13th, Bryce went in for a surgery with no guarantees. After three hours of waiting we finally were called back to talk to the surgeon. With Chris on one side and my sister on the other (she just flew in from NC and arrived a few minutes into the surgery) we were given the deflating news that the tumor was more "angry" than she could have expected and she was not successful in removing the mass. The positive...she was able to remove enough for a biopsy. She was hopeful it was just a benign mass but there was no way to know.
After 10 days in the hospital it was time to go home. At this point, my mom and step-dad moved to PA to stay with us and help us through this. The day we arrived home was the day we received a call...it was benign. Thank goodness. Time to celebrate.
But now what? Now what was meeting with the oncologist and surgeon and figuring out the next step. Three days after surgery, we headed to the outpatient pediatric hematology and oncology clinic where we met with our oncologist that informed us it WAS malignant. WHAT?! Not only was it malignant, but it was GIST and GIST is something very uncommon and non-responsive to chemo or radiation. It is a very new cancer and the ONLY medication to help kill it is Gleevec. The oncologist was quick to tell us that they have no experience with GIST and that they would help us seek someone that would be willing to help. The positive is that with the testing it showed that he had the adult version of GIST and typically that was responsive to Gleevec. We were referred to CHOP. We spoke to the oncologist there that stated that she was willing to help but only after doing some research because GIST was so uncommon. Between the two of us researching, we found one doctor in Boston who was interested in the case and interested in learning more about GIST. After rejections from several hospitals, this is what I was excited to hear. At this point, it was also discovered that the ONE medication that works with GIST would not work with Bryce because his was even more rare, and after some testing, it was discovered that Gleevec would not kill his form. He did not have the adult version as they had initially thought. The doctors told us he is one in several million with this.
Back to the drawing board. Surgery was our only option. On May 25th after much hesitation and a lot of meetings and discussions, it was decided he would have surgery again and by a doctor at CHOP that was willing to try. Again, it was all laid out. After almost 7 grueling hours, we heard from the doctor and Bryce was okay and they were able to remove a large amount of the tumor!!!!! Half his stomach was removed, his intestines rerouted, gallbladder removed, some lymph nodes, and more were removed. Left behind was still a tumor on the inside and outside of his liver but the large part that was making him so uncomfortable was gone!!! In the meantime we discovered that the cancer (GIST cancer) spread to his liver and his nodes. One victory at a time. Due to complications, this stay was much longer and due to the intensity of the surgery, Bryce was there for three weeks exactly! We made it though. We made it in a hospital room for three weeks without going COMPLETELY insane (maybe).
We continue to look for ways to fight this disease. In the year 2016, it is hard to imagine that there are still cancers out there that people have never heard of and that there is no cure for. For now, the whole family lives every day to the fullest. If we have learned anything in life it is that there are not any guarantees. It is also that we are all stronger than we give ourselves credit for. We are now 4 months into Bryce being diagnosed. Our community and support system is large and for that we are grateful. As mom, I am no longer able to work as I was before. Our priorities have changed overnight. Our day-to-day living is insurance calls, appointments and paperwork.
From here where do we go? How does one recover and move forward with life? Nothing seems to matter anymore. Nothing seems to be a big deal other than the happiness of my children. Bryce will return to school and be there as much as his body will allow. On the outside, he looks like a very healthy, normal 13 year-old boy. On the inside he is still fighting with every part of his being. There are days he can run, jump, play and be fine. Other days he cannot. The fatigue is overwhelming and just exhausting to see. The pain fluctuates from day to day. We are part of a lot of research studies in the hopes that a cure will be found. Until then we continue to keep our ears open, eyes wide, and hearts light. Bryce has shown us all just how courageous an individual can be. Not one person should need to go through this let alone a child who is losing part of their youth.
Cancer to us is our new normal. Scans every 8-12 weeks to monitor growth. Possibly a trial with a medication that will hopefully hinder the growth and spread. There are days of feeling very alone in this journey but also days of being sad that we are surrounded by many dealing with similar stories. Every day is a gift. Every day is a new day. For that I will always cherish. Until we find the cure and the answer, we just stay on this roller coaster and hopefully one day we can celebrate the coaster letting us off the ride. All we can do for now is throw our hands up, scream and try to smile despite being enormously afraid.
-written by Bryce's mom, Tiffany