After several days of nausea, vomiting, and fatigue, Persy turned the corner last week. After receiving IV fluids at a clinic appointment he immediately began to feel much better.
In addition to P feeling good again, we received some good news regarding his progress. Our doctor requests certain urine testing to be done whenever Persy is admitted for a new chemo cycle in order to look at certain levels which are elevated in patients with Neuroblastoma. She uses these as a “sneak peek” to get an idea if the chemo is working. On November 24, 2021 (day 2, cycle 1 of chemo) Persy’s HVA (homovanillic acid) was 353. On December 16, 2021 (day 2, cycle 2 of chemo) his HVA had dropped to 47.6. This is a significant change and a wonderful sign after only one cycle of chemotherapy.
As part of a Children’s Oncology Group (COG) clinical trial, some Neuroblastoma patients are eligible to receive a special additional treatment using meta-iodobenzylguanidine (MIBG) to deliver radiation directly to cancer sites through a targeted injection. Early on in Persy’s diagnosis, we learned that his cancer is MIBG avid, meaning his cancer reacts to the MIBG molecule by taking it into the cell. He was able to benefit from an MIBG scan, a form of radiological imaging that uses an iodine tracer (I-123 MIBG) to create an image of Persy where only cancer cells show up. For MIBG therapy, a similar but more radioactive form of iodine (I-131 MIBG) is used. In this way, MIBG is used as a treatment instead of just a diagnostic tool. According to the study, since the 1980’s I-131 MIBG has been used for the treatment of patients whose Neuroblastoma did not respond to treatment or came back after a period of remission. Its use in upfront therapy is still under the review of the study, but it is a promising new therapy and we are pleased that Persy has the opportunity to receive it.
In order for Persy to get MIBG therapy as part of the study, Persy’s disease had to be MIBG avid, and he could not have the ALK mutation. After that, we had a 50% chance of being randomized to the test arm where he would actually receive the treatment. We recently found out that Persy was randomized to the MIBG therapy arm of the study. This treatment is not yet offered here in Jacksonville, which means we will be traveling to Atlanta to have it done at Children’s Healthcare of Atlanta (CHOA) at the beginning of February.
The process will include about 5 days in the pediatric intensive care unit (PICU), with the 2-hour MIBG infusion happening on day 2. Following the infusion, Persy will have high levels of radiation in his body which means we will only be able to be around him for very limited amounts of time. The doctors have informed us that due to P’s young age, he will be sedated throughout the hospital stay, since it would be too hard for him to understand why Mama and Dada can’t hold him and be in the room with him all the time. The logistics of how this will all go makes us very anxious, but we have full confidence in Persy’s medical team at CHOA.
While leaving our comfort zone at Nemours and Wolfson Children’s Hospital won’t be easy, we know how blessed we are to be able to come back “home” for this part of P’s therapy. Even though we wish it was under different circumstances, it will make all the difference in the world to be in a place of comfort and peace as we navigate this next unknown.
We have so much to be thankful for, a fact that becomes more evident with each passing day. We are steadfast in our faith, and we can truly feel the Lord at work in every part of our lives.
“Thank you” just doesn’t quantify the overwhelming gratitude we feel for every single prayer, kind word, and thought sent our way. Please keep them coming, He is listening. 🙏
BIG Little Victories
- Persy is feeling good (no more nausea, yay!), eating well, and continuing to have lots of energy to play with his brother Kep and cousin Conrad.
- Persy’s HVA levels reduced significantly after his first cycle of chemotherapy indicating that the treatment is working to shrink the tumors.
- Persy was selected to receive an extra treatment known as MIBG therapy (in addition to the standard therapy for neuroblastoma) as part of a clinical trial. Persy got to go on his very first plane ride ever, and had Dada as his pilot! He did great!
- Persy got to see his aunt Stephy for the first time in months and give her big hugs!
- Persy said goodbye to his crib and has been sleeping in his new big boy bed (transitioning like a champ as always)!
- For Persy to continue to feel good, eat well, and have lots of energy.
- For Persy’s MIBG infusion to go smoothly and for him to adjust to the sedation and seclusion.
- For Persy to remain happy and positive despite all that he has had and will have to endure.
- For Persy’s body to continue to respond to the chemo and specifically that the chemo obliterates all of the metastatic cancer sites in his body.
- For Persy’s cancer to be attacked by the chemo, but for his precious body to be protected from the damage caused by the toxic chemicals.
- For continued strength for Persy’s mama and dada and his whole family.
For I know the plans I have for you," declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” -Jeremiah 29:11