Freddie's Fight Against Neuroblastoma

Thank You

I just want to start by saying how incredibly blessed we are to have such an amazing support system taking care of Freddie and our family. Anyone who has donated, cooked us food, entertained Evie while we were admitted, put together care packages, checked in on us, or even just followed along with his story, please know how much of an impact you have made on our entire family. We’re so incredibly lucky to have all of you in Freddie’s corner, and we can’t thank you enough.

Two of our good friends, Alex and Claire, have taken it upon themselves to plan a 5K for Freddie in Cincinnati, OH! It’s on September 6th at 10AM @ Fifty West Brewing. While it was in my original plan to attend with Evie, Freddie is going to be admitted that weekend and I’d feel more comfortable staying local since the immunotherapy can be a little unpredictable. We’re so thankful for everyone who has signed up to support Fred, and we can’t wait to see photos of how everything turns out!

Cycle 3

Freddie completed his stem cell collection over two days, 8/6-8/7, and tolerated everything really well! He also decided he’s done with purees and onto table foods only.

His counts recovered in time for him to start cycle 3 on 8/12. This cycle consisted of two chemo drugs (cisplatin + etoposide) and immunotherapy (dinutuximab). He received chemo on days 1-3 and immunotherapy on days 2-5. Compared to last cycle, he did remarkably well while admitted! Lower and less frequent fevers, no issues with oxygen saturation, and more awake/alert on the morphine drip. His big sister, Evie, came to visit over the weekend and had a blast watching for helicopters and playing with the unit’s toys. Her friend from school, Larry the Llama, made a guest appearance too.

One of the chemo drugs, cisplatin, is notorious for causing nausea, and we discovered that firsthand after discharge. Freddie had a really rough few days from Sunday-Tuesday, 8/17-8/19. He had pretty persistent nausea/vomiting and diarrhea, and wasn’t sleeping for longer than a half hour at a time. We were able to alter his antiemetic regimen a bit and add on some IV fluids at home to support him through the rough few days without needing to go into the clinic or inpatient unit, for which we’re SO thankful. He’s still intermittently nauseous now and has oral thrush again, but overall he’s much improved from earlier in the week. Labs from yesterday show that his counts are starting to come up and he’s not technically neutropenic anymore! His platelets were a little (actually very) low so we went to the clinic yesterday to get a unit of platelets transfused, but he flew through it. We’re all so happy to be home and enjoying some family time before the next cycle. He’s due to start cycle 4 on 9/4, so here’s hoping we don’t have any updates until then 🙂

With love,
The Reichards