Freddie's Fight Against Neuroblastoma

Freddie was admitted on October 2 for his final cycle of chemoimmunotherapy! He was due to start the cycle on September 29, but his counts (platelet and neutrophil) hadn’t recovered in time. We delayed the start by a few days, which allowed Fred some extra time at home to gain more weight and sleep in his own bed.

During this time, I got to attend the Crucial Catch Bills game with some of my leukemia team from Roswell. If you’re looking for the most supportive, fun, and goofy coworkers, look no further. I only had the pleasure of working with them for a month before having to take leave, but they still treat me like family.

Fred received 3 days of cisplatin and etoposide again this cycle, in combination with 4 days of his immunotherapy, dinutuximab. He handled everything really well, but the nausea set in around day 3. His counts also plummeted quicker this time, likely due to the cumulative effects of 5 cycles of chemotherapy in 3 months. He was spiking fevers, as he usually does while on dinutuximab, but he was already neutropenic before day 5. Because of this, our team thought it best we stay in the hospital and continue Fred on broad-spectrum antibiotics with close monitoring, especially given his history of bacteremia. While it was likely the immunotherapy causing the fever, there was no way of knowing he didn’t also have an infection brewing. Much better to be safe than sorry for our little guy, so we’ve gotten comfy up here on the 12th floor.

A week and change after our anticipated discharge date, we’re still admitted at Children’s. His counts have slowly begun to creep up, but haven’t recovered yet. As our attending physicians have put it, his bone marrow is tired and taking longer to bounce back. On the plus side, his blood cultures have all been negative and he hasn’t had another fever since day 5! The nausea/vomiting has finally improved and his appetite is bouncing back, but we have some work to do in the off-season to get his weight up.

In the coming weeks, we have many tests and procedures planned to restage Freddie’s disease and prepare for his stem cell transplants, including but not limited to a physical therapy evaluation, CT scans of his skull/face and abdomen, MIBG scan, bone marrow biopsy, and a hearing test. If his cancer is in remission, we’ll proceed toward transplant. It’s looking like we’ll get to spend our birthdays at home, God willing, so we’re excited for that!

It’s hard to believe we’re already at the end of induction. In some ways, it feels like he was just diagnosed. Just today, Adam and I were walking past the OR waiting room and it brought back vivid memories of waiting for Fred to come out of his initial biopsy-turned-complete-resection surgery back in June. It’s all been a bit of a blur, and it’s hard to remember what life was like before all of the admissions, clinic visits, lab draws, and medications. We’ve been beyond blessed with your continued prayers and support, and please know we couldn’t do this without you. Thank you for continuing to follow along! Until next time..

Love, the Reichards