It has been over a month since our last post and some big decisions have been made regarding Persy’s treatment. While we will forever be appreciative of the care we received (and continue to receive) at Wolfson and Nemours, we decided to move Persy’s neuroblastoma treatment to Memorial Sloan Kettering Cancer Center in New York.
From the first days after Persy’s diagnosis back in November 2021, we sought second opinions and consultations from other oncologists. A sticking point for us became the autologous stem cell transplants (ASCTs). These are not primarily a stem cell transplant like many would think, but really a near lethal or lethal dose of powerful chemotherapy followed by a rescue dose of the patient’s own stem cells which had been previously collected. These treatments have significant risk of severe side effects or even death. While some would argue that the side effects are a calculated risk, others in the neuroblastoma community do not believe in their efficacy. It was only after a great deal of prayer and lengthy deliberation that we decided to take Persy’s treatment in another direction. While Persy’s primary care and leadership is now elsewhere, we are still supported by Wolfson and Nemours, and we have only the deepest appreciation for those organizations, their doctors, nurses, and leadership.
The change occurred just before we went into cycle 6, which wasn’t originally planned. The diagnostics that took place after cycle 5 revealed that there was still some cancer in the bone marrow. After cycle 6 and the subsequent scans that took place in New York, the bone marrow is now free of disease. This is great news for Persy. Not all the news we got was good. One of Persy’s kidneys was damaged by the surgery and probably no longer has function. It is unlikely to regenerate, but one kidney is enough to live a full and healthy life. The most recent scans also revealed that there is some question about how effective the surgery was at removing the primary tumor. We had been told previously that the lymph nodes were clear of cancer, but that unfortunately is not the case. There is also some question about whether or not there is cancer in the liver. We don’t have definitive answers on these issues yet. The latest scans also confirmed that the cancerous lesion on Persy’s clavicle remains. That area will be irradiated along with the primary tumor site and where a now resolved lesion existed in Persy’s eye. This will be done to reduce the chance that microscopic disease could cause a relapse. Despite the setback, P has made another huge leap forward in his fight against neuroblastoma, and we are so thankful for that.
Persy’s doctor has developed a treatment plan which combines low dose chemotherapy and immunotherapy (or antibody therapy) which target and kill the cancer cells. The antibody P will receive is called Naxitamab (Hu3F8). Known as 3F8, this antibody attaches to neuroblastoma cells and helps focus a patient’s own immune system — especially white blood cells — on attacking neuroblastoma cells. He will receive the chemo and antibody infusions once a month and will most likely need a total of 7 rounds. He will also undergo radiation therapy at some point during this time. All of this treatment is outpatient, which will allow P to spend minimal time in the hospital, a fact that we are very grateful for. The chemo has less side effects than previous rounds with limited nausea and minor diarrhea being the worst of it. The immunotherapy’s main side effect is moderate to severe pain during the injection. Efforts will be made to keep Persy comfortable and to keep him from remembering the pain of the injections.
Our schedule will be approximately two weeks in New York followed by three weeks at home, but this doesn’t include additional diagnostics or radiation treatments. The new travel schedule and being far away from the comforts of home and our loving family is not easy, but we are determined to do whatever it takes to ensure that Persy receives the best possible treatments. The one thing that makes everything easier to bear is the light that shines so brightly through Persy. His sweet demeanor and positive energy carry us all through the most difficult times.
We are also blessed to continue to see our Lord at work in our lives through the love and support that keeps pouring in from all of you. So many of you have reached out to check on us, pray with us (and for us), and offer words of love, comfort, and encouragement when we have needed it most. Despite all that has happened up until now, we know that God has been beside us every step of the way, and we have no doubt that He will continue to guide us through each new unknown on this journey to total and complete healing for our precious Persy.