Freddie's Fight Against Neuroblastoma

It’s been so long that I had to reread my last post to remind myself what was happening the last time I published an update!

Fred stayed inpatient for another week, and was discharged home on February 9th. His main issue at the time of discharge was nausea and vomiting due to the thick mucus along his GI tract, which was a side effect of the high-dose chemo. The chemo’s job is to attack rapidly growing and dividing cancer cells. However, the chemo also attacks healthy rapidly growing cells, such as hair follicles and GI mucosa. He developed mucositis all along his GI tract again, and his body produced a lot of thick mucus during the healing process. The mucositis was worse this time around, so it took Freddie much longer to clear it out.

From the end of January up until about 4 days ago, Fred was vomiting every 4 hours or so, pretty much around the clock. We played around with his feeds and medications, scheduling doses of anti-emetics and slowing down the rate of his tube feeds. However, since vomiting was his way of clearing the mucus in his GI tract, there wasn’t much we could do to calm it down. It didn’t help that Fred’s NG tube travels down his esophagus and into his stomach, so no food was physically coming into contact with the lining of his esophagus = fewer cells were sloughing off, outside of his vomiting episodes. Our transplant oncologist (whom we love, and who was the one on service the week Fred was diagnosed) had us switch from continuous, slow NG feeds back to bolus feeds in an attempt to entice Fred to eat some more solids. With continuous feeds, Fred never really had the chance to get hungry. Now, with bolus feeds, Fred seems to have developed an appetite and is taking a bit more by mouth! His vomiting really slowed down this week, and he’s only getting sick once or twice a day, if that.

Fred also had a pretty nasty sleep regression over the last few weeks, then decided it was a good time to pop not one but four new teeth this week. It’s been a rough few months, to say the least, but Freddie finally began sleeping through the night a few days ago and we cannot be more thankful for that! We feel so fortunate that he made it through two stem cell transplants without any serious adverse events or toxicities. These were heavy-hitting therapies, and Fred was an all-star. Perhaps what I’m most excited about at the moment is seeing his little peach fuzz growing back, knowing he doesn’t have any more chemo up ahead to keep him bald. I truly cannot wait to see his little head of hair again!!

Evie started in a new class at daycare, and has been crushing it. She frequently has side-bar conversations with Freddie at dinner, and if she notices you listening, you get hit with a “I’m talking to Fred right now.” They’re such a tight-knit duo, and we’ve loved this time at home together.

Next, we’ll travel to Cincinnati for his radiation treatment. He needs 12 days of treatment which is done Monday-Friday , so we’ll be there for a few weeks. After that, we return to Buffalo for restaging, then onto 6 cycles of immunotherapy.

I know Fred won’t remember these challenging times, and that’s a beautiful thing. But.. I do believe that he will somehow know how hard the first few years of his life were, and he’ll see every day as a gift. You can already see it now; nothing keeps him down. He’s been sick and throwing up for nearly a month and a half, yet he’s truly the happiest kid I know. We’re so incredibly blessed to be Fred’s family, and we can’t thank you all enough for your continued support and prayers for our little guy.

Love,
The Reichards