Dominic Update 4.0 – Brown Eyed Baker3 min read
Hi everyone! I can’t believe that we are on the cusp of Labor Day and summer coming to a close. The last five to six months have been a total blur and this summer, in particular, has flown by. There’s been hospitals (chemo, stem cell harvest, surgery), clinic appointments, and driving back and forth to New York.
But, one foot in front of the other and one day at a time, we are grateful to be heading into a new season with a strong boy and hearts full of hope.
Dominic had a busy first few weeks of August…
🔍 First, he had a new set of scans (MRI + MIBG) plus another bone marrow biopsy. The scans still show disease throughout his bones but most of the spots are “dimmer” than before, and the bone marrow involvement decreased by over 50%.
So, there is still work to do, but there is an improvement. And! Dominic did both of the scans without anesthesia (he has been sedated previously because you have to lay completely still and the MIBG is over 2 hours). He’s a rock star.
🏥 Next, he had his first round of immunotherapy. The antibody he’s given targets the protein of neuroblastoma cells and since they usually sit on nerve cells, there is significant nerve pain accompanying the treatment. The infusion is short (45 minutes) but intense.
There is a lot of pre-medication and pain management during and after, and he would basically sleep the entire rest of the day afterward. But, the treatments are outpatient so no hospital stays, and they don’t impact counts like chemotherapy, so no neutropenia or blood or platelet transfusions.
🦸♂️ Then, he crossed off another big hurdle… radiation. He did this awake with no anesthesia as well… twice a day for five days, he was strapped down using a special mask that was molded to his head and upper body to keep his head and neck in the exact same position each time (his clavicle was radiated due to the cluster of diseased lymph nodes that were there, as well as the tumor bed in his abdomen). An amazing woman who works there has the kids pick what they want their masks to be and then custom paints them… Dominic chose Iron Man. There are some incredibly special people in this world.
He could also pick whatever music he wanted to be piped in each time and chose Christmas music every day 💕🌲 He totally rocked it and the people working there were absolutely phenomenal.
➡️ Next… we get to be home for a couple of weeks, then it’s back to NY for another round of immunotherapy, a new set of scans, and another bone marrow biopsy.
📘 In the meantime, he started kindergarten this week! He’ll be joining class virtually until his oncologist gives him the go-ahead to attend in person, which we’re hoping will be late September.
💈 His eyebrows, eyelashes, AND hair have all started growing back! He’s had a ton of energy, has gained back all of the weight he lost after surgery and that last round of chemo and is otherwise doing really, really well.
❤️ Thank you all for your continued prayers, it means so much to our family.
In other news, I am planning to get some emails scheduled out heading into the fall and holiday season to refresh some site content. So, you can look forward to me popping into your inbox more regularly in the coming months 🎉