I hope that your summer has been absolutely wonderful ☀️
I’m popping in today to provide an update on Dominic; so many of you have written and asked how he is doing, and how the surgery went, and I thank you for your patience!
First, a Thank You
The outpouring of beautiful cards, postcards, and gifts that have been sent to my PO box has been so heartwarming. Our family is completely and utterly humbled by your thoughtfulness, and we thank you from the bottom of our hearts for taking time out of your day to do something that would bring a smile to Dominic’s face ❤️ THANK YOU!
Dominic had his tumor resection surgery on Monday, June 20th at Memorial Sloan Kettering in New York. He went into the operating room at 9:30am and arrived in his room in the pediatric ICU around 6:45pm. Leaving him in that operating room was gut-wrenching, but an OR nurse was able to provide updates on a regular basis throughout the day, which made all of the waiting much less agonizing. The surgeon was able to remove his entire tumor, as well as all of the diseased lymph nodes that were identified in his neck, abdomen, and pelvis. He was stable throughout the entire operation, lost very little blood, and only stayed in the ICU for two days.
The surgery simply could not have gone any better and we are just so grateful to the surgeon and for all of the prayers that were sent up for Dominic and the surgical team that day. There is one rogue lymph node below his left clavicle that the surgeon knew going in wasn’t able to be reached from either the neck or the thoracoabdominal incision. It will be re-scanned and either removed via a scope procedure or if it has shrunk enough, radiated.
Recovery was very slow going the first few days; taking just a few steps was hard for Dominic and it was so difficult to see him struggling and becoming exhausted by such simple movements. He had a chest tube and catheter for four days post-surgery, and an abdominal drain for a week, which didn’t help! But it was also amazing to see what a difference just a couple of days could make. Working with PT and OT was wonderful and within a week he was walking back and forth to the playroom in the hospital.
A couple of days after surgery, they discovered a chylous leak (basically, fat leaking through the lymphatic system), which we were told beforehand would be a possibility because so many lymph nodes would be removed. It was the only real complication post-surgery; they treated it with medication and a low-fat diet for about 5 days and it resolved.
A week after surgery, Dominic began his fourth round of chemo. This one hit him the hardest, likely because he was still recovering from surgery, he lost his appetite for a number of days, had some nausea, and was more tired than usual. We were able to head back home after that cycle of chemo was complete, 11 days after his surgery.
The surgeon indicated that full recovery will take about two months, but that walking and gentle exercise is great for him, so he started by walking our driveway and cul de sac and got back on his pedal kart bike (bike riding was doctor-approved) for some easy rides. He has gradually regained a lot of energy, as well as range of movement, and is riding his bike faster and is up and playing like normal.
One of our biggest hurdles since getting home is that he just wasn’t back to himself for quite some time, which we had been told was completely normal. He was lethargic, not talkative, not interested in playing, and we all missed our Dominic!
Part of the issue is that it took him a lot longer to rebound from this last round of chemo than any of the previous rounds that he had. His white counts sat bottomed out at or near zero for two full weeks, and he needed three platelet transfusions and two blood transfusions within a week. We logged some LONG days at clinic the week after we got back.
The other issue is that he had prolonged loss of appetite after chemo and had continued to lose weight (and he was little to begin with!). As a result, the doctors started him on an appetite stimulant a week ago and it seems to have kicked in over the last couple of days because he’s been eating so much better and gained a little over a half pound since his clinic appointment last week.
All of his counts started coming back up in the last couple of days and he hasn’t needed any transfusions since early last week. We’re so grateful he’s getting back to his old self, slowly but surely!
Next week, Dominic will undergo a battery of scans and a bone marrow biopsy to see the exact status of the disease post-surgery and after completion of chemo.
Shortly thereafter, he’ll begin his first round of immunotherapy antibody treatments, and then have radiation. The longer-term plan is that he will have at least five rounds of immunotherapy treatments, spaced out about a month apart. Scans will be done after every two rounds to see how things are looking. Asking for lots of prayers that we get clean scans as soon as possible 🙏🏻
Thank you all so much again, for reaching out and asking about Dominic, for keeping him in your prayers, for showering him with cards, and for continuing to love on us as a family. We feel you, and your kindness and prayers lift us up and give us strength.
I’ll share another update after we get through our next steps! In the meantime, we’re soaking up every single day that we can all spend time together under one roof ❤️