I hope that your summer months has been unquestionably excellent ☀️
I’m popping in these days to provide an update on Dominic so a lot of of you have written and asked how he is executing, and how the medical procedures went, and I thank you for your patience!
Initial, a Thank You
The outpouring of wonderful playing cards, postcards, and presents that have been sent to my PO box has been so heartwarming. Our household is entirely and totally humbled by your thoughtfulness, and we thank you from the base of our hearts for using time out of your working day to do a little something that would convey a smile to Dominic’s facial area ❤️ THANK YOU!
Dominic experienced his tumor resection surgical treatment on Monday, June 20th at Memorial Sloan Kettering in New York. He went into the functioning home at 9:30am and arrived in his space in the pediatric ICU close to 6:45pm. Leaving him in that running home was gut-wrenching, but an OR nurse was ready to offer updates on a regular foundation all through the day, which created all of the waiting significantly less agonizing. The surgeon was capable to eliminate his complete tumor, as nicely as all of the diseased lymph nodes that ended up identified in his neck, stomach, and pelvis. He was stable through the overall procedure, dropped very small blood, and only stayed in the ICU for two days.
The operation basically could not have absent any greater and we are just so grateful to the surgeon and for all of the prayers that have been sent up for Dominic and the surgical team that working day. There is just one rogue lymph node beneath his remaining 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 both taken off by way of a scope process or if it has shrunk adequate, radiated.
Recovery was really slow heading the to start with couple days having just a few techniques was tough for Dominic and it was so hard to see him struggling and becoming fatigued by this kind of easy movements. He experienced a upper body tube and catheter for four times write-up-surgical procedure, and an stomach drain for a 7 days, which didn’t support! But it was also wonderful to see what a difference just a few of times could make. Doing work with PT and OT was superb and within a week he was strolling again and forth to the playroom in the clinic.
A few of days after surgical treatment, they uncovered a chylous leak (essentially, fat leaking by means of the lymphatic procedure), which we were told beforehand would be a likelihood due to the fact so many lymph nodes would be eradicated. It was the only serious complication article-surgical treatment they treated it with medicine and a minimal-body fat diet regime for about 5 days and it fixed.
A 7 days immediately after surgical procedure, Dominic commenced his fourth round of chemo. This just one hit him the hardest, possible mainly because he was even now recovering from medical procedures, he lost his hunger for a range of days, had some nausea, and was a lot more worn out than typical. We had been capable to head back again residence immediately after that cycle of chemo was finish, 11 times after his surgery.
Back again Dwelling
The surgeon indicated that complete restoration will consider about two months, but that going for walks and gentle exercising is excellent for him, so he commenced by walking our driveway and cul de sac and received back on his pedal kart bike (bicycle driving was physician-permitted) for some simple rides. He has slowly regained a great deal of energy, as perfectly as array of movement, and is using his bike a lot quicker and is up and actively playing like standard.
One of our most significant hurdles since receiving dwelling is that he just was not back again to himself for fairly some time, which we experienced been advised was wholly standard. He was lethargic, not talkative, not intrigued in taking part in, and we all missed our Dominic!
Part of the concern is that it took him a whole lot more time to rebound from this last spherical of chemo than any of the prior rounds that he had. His white counts sat bottomed out at or around zero for two comprehensive weeks, and he desired a few platelet transfusions and two blood transfusions within just a 7 days. We logged some Lengthy times at clinic the week after we acquired back again.
The other concern is that he had extended reduction of urge for food just after chemo and had continued to shed pounds (and he was small to start off with!). As a outcome, the medical doctors began him on an urge for food stimulant a 7 days in the past and it appears to have kicked in about the final pair of days simply because he’s been feeding on so substantially improved and acquired a small in excess of a 50 % pound due to the fact his clinic appointment last week.
All of his counts began coming back again up in the past few of days and he hasn’t desired any transfusions since early past week. We’re so grateful he’s having back again to his aged self, gradually but surely!
Upcoming 7 days, Dominic will go through a battery of scans and a bone marrow biopsy to see the actual standing of the illness post-surgical treatment and right after completion of chemo.
Shortly thereafter, he’ll start out his initially round of immunotherapy antibody solutions, and then have radiation. The lengthier-time period strategy is that he will have at least five rounds of immunotherapy treatments, spaced out about a month aside. Scans will be accomplished following every two rounds to see how issues are wanting. Asking for plenty of prayers that we get clean up scans as shortly as possible 🙏🏻
Thank you all so much again, for reaching out and inquiring about Dominic, for preserving him in your prayers, for showering him with playing cards, and for continuing to like on us as a relatives. We experience you, and your kindness and prayers elevate us up and give us energy.
I’ll share another update right after we get via our subsequent techniques! In the meantime, we’re soaking up each solitary working day that we can all commit time with each other less than 1 roof ❤️