Freddie's Fight Against Neuroblastoma

Getting to spend most of November at home was such a blessing! Our original transplant admission date was November 3rd, and we’re so thankful to our team for pushing that date back a few weeks and giving us some much-needed time at home.

Freddie was admitted on November 24th for the next phase of treatment. As a quick refresher, the general outline for treatment of high-risk neuroblastoma is:

Freddie completed induction (which, in his case, also included immunotherapy as part of the clinical trial he’s on), and achieved the best possible outcome – complete response. He also didn’t need an additional surgery since his surgeon was able to completely resect the tumor when he initially went to biopsy it back in June. Now, we’re onto the first round of high-dose chemotherapy with autologous stem cell rescue.

We’ve been referring to this admission as Freddie’s stem cell/bone marrow transplant, but that term is a bit misleading. Thinking of it as a transplant suggests that the disease arose from his bone marrow, and we need to wipe it out and replace it to cure him. Rather, in Freddie’s case, the infusion of his stem cells (which were harvested after his second cycle of chemotherapy) simply serves as a rescue to help him recover from the mondo doses of chemotherapy he’s receiving. The high-dose chemo is meant to kill the neuroblastoma cells in his body, but it also wipes out his bone marrow in doing so. Replacing his own stem cells helps his bone marrow recover and start producing cells on its own again.

We arrived to Oishei early on 11/24 to have his central line replaced before coming up to our second home on the 12th floor. He still had his apheresis catheter in place, which is a thick, rigid, dual-lumen central line that we needed to harvest his stem cells. We kept it in place all throughout the induction phase of treatment, but he had bacteremia twice with this line and we don’t need that rigid of a line anymore. Freddie now has Broviac, which is still a dual-lumen central line, but it’s much smaller and far less stiff.

After his central line was replaced, we came upstairs to get settled and start hydration. He started chemo on Tuesday, 11/25 – three days of thiotepa and four days of cyclophosphamide. These high doses of chemo are meant to kill cancer cells, but in doing so, they also attack the normal, healthy cells in his GI tract. He has been dealing with some nausea/vomiting and mouth sores currently, all to be expected. He received his stem cell infusion today, 12/2, and tolerated it well! Now, we wait inpatient for count recovery (10-16 days on average). It’s been a busy 8 days so far, and we’re hoping for an uneventful recovery period!

As always, thank you for your continued support of Freddie and our family! We appreciate you all so much.

Love,
The Reichards