My Cancer is all Gone!

Brantley was diagnosed with stage 4 high risk neuroblastoma in July 2020 at just 2 years old. This wasn't the first challenge of his life at such a young age. He was also born with a coarctation of his aorta, a bicuspid aortic valve, and a ASD to his heart that needed to be repaired. He underwent open heart surgery at just 7 days old to even have a chance to live. July of 2020 was quite possibly the "healthiest" we had ever seen Brantley. When the Doctors told us that they found a tumor and a larger mass on one of his routine echo exams we were ultimately heartbroken and devastated. How could a little boy this young already have to go through this much? So much as a mom was running through my head. How were we going to get through this during a pandemic? How were we going to manage to earn an income for our family while still having three older children at home to take care of and virtual teach? That was just the tip of the iceberg for me.

Immediately we entrusted the care of the Doctors at CHONY. They had never let us down with any of his cardiac needs, and I knew they would take the best possible care of our little boy again. Brantley underwent surgery in early August of 2020 to remove the mass on his right adrenal gland. The surgeon was able to get all the mass and remove all infected lymph nodes surrounding the adrenal gland. The tumor on his liver was very tiny and so intertwined that they were not able to remove it without the possibility of permanent damage. Once Brantley healed from surgery his treatment was going to start. We weren't sure what we were really in for with this. He started at the end of August 2020 with 5 rounds of chemo. They were brutal is all I can say. Vomiting, hair loss, weight loss, neutropenia was just a few of many side effects. These 5 rounds lasted until the middle of December. In between each round was always an additional hospital stay because his blood counts would drop so low he couldn't fight anything off. He also needed multiple transfusions during this.

December 28, 2020 Brantley was getting ready to be admitted for the first of two stem cell transplants. Unexpectedly he came down with an infection in his central line. Without any hesitation his transplant Doctor immediately admitted him early and pulled his line. Five days of IV antibiotics, another trip to Interventional Radiology and a new central line later we were ready to begin his first stem cell transplant. All the literature and information from the Doctors and nurses couldn't begin to prepare us for this journey. Brantley spent the next 7 weeks in a hospital bed. No visitors allowed because of Covid and only one parent at the bedside. It was a very scary, emotional time for us. Many of those seven weeks Brantley didn't make a peep at all. He needed many different narcotic drips just to keep the pain at ease. You would just see one lonely tear roll down his cheek. Any side effects that there was a possibility of Brantley had. He had such bad mucositis for weeks that he couldn't even drink water. We cannot begin to praise the nurses who took such exceptional care of our little boy. I would go home Friday nights after dad got done with work to see the older kids and come back Sunday afternoons. The older children couldn't really understand all that was happening, so it was important that we made sure they had a special time for them. During these 7 weeks, Brantley would develop Veno- occlusive disease of his liver. So the inside of his liver became blocked and his body started to swell from all the fluids that couldn't pass through. He started medication to reverse it as soon as this was detected. A few days of no progress and a stomach drain was placed to help alleviate the fluid. After discharge the Doctors felt the second stem cell transplant could possibly cause more harm then do good so they called it off. It was also determined that Brantley would need Proton radiation due to the complications with his liver during transplant. We were set to Sloan Kettering and fit for his mold to begin radiation.

April 1, 2021, Brantley began his 14 days of radiation therapy. Each morning we would drive to Harlem for his treatment. For fourteen days we had to deal with the gut wrenching, awful feeling of watching him be put to sleep for it. A two hour drive each way and that he would scream on the top of his lungs for almost the whole way home each day. Anxiety ran very high for me during this time. I couldn't find anything to soothe him with. After radiation we began 6 rounds of immunotherapy.

End of April 2021, was the first of six rounds of immunotherapy. Every round brought on different side effects from high fevers, severe nerve pain, extremely low blood pressures, tachycardia, to trouble breathing. I went into each round with him, never knowing what we were going to experience. It was something we could never prepare for because every round was so different. We had a few setbacks during these rounds, but ultimately finished with receiving almost all of the medication he was supposed to.

In October of 2021, fifteen months after receiving the devastating news of Brantley's diagnosis that he was finally in remission. Despite the worst days, Brantley always had a smile. It may not have always been big but you were always sure to catch a glimpse. On the worst days of treatment, Brantley never, and I mean never complained about a thing. HIs strong demeanor is what helped us all get through this. The back and forth put a toll on us for sure. Some days, and there were many, we would have to make multiple trips (two hours each way) back and forth. It would never have been possible for us financially without the support of The Frances Pope Foundation. You gave us extra hope when we needed it the most.

Brantley has since started preschool this past November. He is receiving speech and physical therapy there to get him caught up to where he should be. He was just diagnosed partial deaf in both ears which is a long-term side effect from one of the chemotherapy drugs that he received. He is in the process of getting fitted for hearing aids so it makes him more comfortable as he is starting to express that "he can't hear." Getting back into the swing of "normal" life at home for me has been anything but easy. For so long my sole purpose was to protect and take care of my sick son. I knew every level in his body backwards and forwards. Now I have a few hours each day to myself, and I feel nothing but lost. Adding a pandemic on top of all of this made it extra challenging. Nurses became the family we never knew we would have. Brantley became so connected to two that he still asks about them each and every day. Every time we go back and forth to the hospital, which is still quite often, we visit. This was a journey you never want anyone to take, but through all the sadness and tough days we found the light. We smiled for what we have and came out on top! Thank you again to the Frances Pope Foundation and each and every person who has helped us get to today! It truly is something that we as a family will never be able to say Thank You for enough.

With Love,

Alexis Dillon

(Brantley's Mom)