I’m not exactly sure why it’s taken me so long to write this update. I think (a big) part of me was worried that I’d jinx Freddie’s recovery if I talked about how well he was doing.
Long story short, Freddie did much better than anyone (health care team included) expected him to!
Throughout the first phase of his treatment, Freddie had been receiving multiple chemotherapy and immunotherapy medications every 3-4 weeks. Some hit him harder than others, especially the platinum drugs he received in cycles 3 and 5. However, the high doses of chemo he received this time around were absolutely no joke. Part of the pre-transplant process was a family meeting with Freddie’s transplant oncologist, nurse practitioner, and nurse coordinator, research RN, pharmacist, Adam, Freddie, and me. During it, we discussed all the possible side effects and adverse events that could occur during this phase. We were prepared for the worst going into it, but Freddie really surprised us all. The first chemo he got this round, thiotepa, is excreted through skin and can cause burns if left on the skin too long. Because of that, we needed to gown up and give Freddie a bath 5 times a day, middle-of-the-night included. He couldn’t have any occlusive dressings on his skin because the excreted chemo would be trapped under the dressing and burn his skin, so he just had gauze and paper tape over his central line that was placed days before. These were long and exhausting days, but he was a true champ. He actually seemed to enjoy the baths by the end! The dressing changes, however, were not his favorite. He received his stem cell infusion on December 2nd, and really flew through it. By this point, he was pretty wiped out and spent most of his days sleeping, but he seemed comfortable enough for the most part.
The biggest issue for Fred through this entire process was the mucositis (inflammation of and sores along the mucous membranes of his GI tract) from the high-dose chemo. This resulted in huge amounts of mucus in his throat/stomach/intestines. Since he isn’t old enough to cough it out, he would end up vomiting multiple times a day to clear it. This went on for about 3 weeks after transplant, and he wasn’t taking much of anything by mouth. Thank goodness for his NG tube which allowed us to provide nutrition without him having to eat/drink it.
Day after day, I was hesitant to address how well I thought Freddie was handling everything. Most of the people we talked to just continued to warn us that it could get bad in the coming days… but then the day came when Freddie’s counts began to trend up and he perked up little by little. I think our dietician was the first one to say “Freddie’s actually doing really, really well.” I wanted to cry. I think I did cry.
I thought we’d be admitted for Christmas, but we were cut loose on day+15! His stem cells engrafted and his labs and vitals looked good. He was still dealing with mucus and vomiting at this point, but was stable enough to continue his recovery at home.
Fred has been sleeping well, continuing to take more and more by mouth, and absolutely loving his time at home with his big sister.
Next, we’re scheduled for his second round of high-dose chemo with stem cell rescue. Right now, Fred is scheduled for admission on January 15th, but we have some wiggle room based on how he’s doing clinically as that date approaches. We’re gearing up for this one to hit him harder than the first, so please keep us in your thoughts and prayers as he continues to fight. After that, we’ll re-stage again with CT scans, MIBG scan, and bone marrow biopsies to assess his disease. Our hope is that he’s still in remission and we can continue to the next phase, which is 6 months of immunotherapy.
2025 was our hardest year yet. I knew this year would bring a new city, a new house, a new job… but I never expected a new pediatric cancer diagnosis. Fred has gone through more in the last six months than a lot of people go through in their lifetime, but he finds every reason possible to flash a smile. Even though we were dealt a difficult hand this year, I can’t help but feel fortunate. At the time of diagnosis, we had just moved to be closer to family, I accepted an amazing position at Roswell Park a month prior (the same cancer center where Fred is now a patient), and we were able to get settled into our new house before our world flipped. We feel stronger as a family after everything we’ve been through, but I’d be lying if I said I’m not very glad to see 2025 come to an end. Here’s hoping and praying that 2026 brings more peace and healing for Freddie, and a little less excitement for the Reichard family.
We love you all, and thank you as always for following along with Freddie. Happy New Year!
The Reichards
Freddie's Fight Against Neuroblastoma 
Leave a comment