Friday Things #465

by Michelle Lettrich
Published December 23, 2022

Hi friends!

I hope you’ve had a great few weeks; we were traveling for Dominic’s treatments the first part of the month, and I wanted to catch you up on all that’s been going on. Here is an update for you:

1️⃣ Long story short, the first day of his treatment caused a lingering cough to be exacerbated, and he ended up with some wheezing. While his chest X-ray was clear, he had to miss the second treatment day; they put him on steroids and breathing treatments, and he had successful treatments that Friday and the following Tuesday without any complications.

While there, he had a hearing test to see if the chemotherapy he received caused any hearing loss (this is very common), but he passed the hearing test with flying colors and no issues. So grateful!

🎄 Being away from home for ten days in December was not what we wanted, but we made the best of it…. We strung Christmas lights in the hotel room, saw the Christmas tree at Rockefeller Center, and enjoyed the "Christmas hallway" at the hospital every day; it brought Dominic so much joy! An entire hallway in the hospital was completely transformed into a Christmas wonderland 🥰

2️⃣ Before we left for home last Wednesday, he had another MIBG scan and bone marrow biopsy. The bone marrow biopsy came back clear of any disease (the first time since he was diagnosed); however, the scan was pretty much unchanged from September, with possibly a couple of new spots on bones. Not what we expected or were hoping for.

3️⃣ Next steps: Dominic will get a PET scan next week, as his doctor said it could give a little more clarity on which spots on the MIBG scan are dead/benign disease vs active disease. Then he will switch from the 3f8 (naxitamab) immunotherapy to the dinutuximab immunotherapy for two cycles, which will be paired with low-dose chemotherapy. After those two cycles, we will repeat scans.

This other immunotherapy is done inpatient because it has a longer infusion time. For all of the treatments he has undergone, he actually hasn’t needed to be admitted to the hospital for any of them since he was discharged following his surgery at the end of June. The silver lining is that it can be done in Pittsburgh, so we don't need to travel to NY, and Joseph, and Isabelle can come to visit him

🫁 Last Friday, he started feeling short of breath. After taking him to the ER, they found he had pneumonia (likely from the ongoing lingering cough that worsened after his immunotherapy treatment). He spent the weekend in the hospital here in Pittsburgh, and after getting an extra dose of steroids and additional antibiotics on Tuesday, he seems to be over the hump and doing much better.

Asking for prayers that his pneumonia clears up entirely by the time he needs to begin treatment (we don't have a start date yet, but it will be the first or second week of January) and that this other immunotherapy is effective.