Howdy pals!
I hope that your summer time has been absolutely great ☀️
I’m popping in currently to deliver an update on Dominic so numerous of you have written and questioned how he is executing, and how the medical procedures went, and I thank you for your patience!
Initially, a Thank You
The outpouring of stunning cards, postcards, and items that have been sent to my PO box has been so heartwarming. Our family members is fully and totally humbled by your thoughtfulness, and we thank you from the base of our hearts for having time out of your working day to do anything that would convey a smile to Dominic’s confront ❤️ THANK YOU!
Surgical procedure Update
Dominic had his tumor resection surgical procedures on Monday, June 20th at Memorial Sloan Kettering in New York. He went into the working space at 9:30am and arrived in his room in the pediatric ICU all over 6:45pm. Leaving him in that running place was intestine-wrenching, but an OR nurse was able to supply updates on a normal foundation through the working day, which manufactured all of the waiting around substantially significantly less agonizing. The surgeon was able to get rid of his overall tumor, as effectively as all of the diseased lymph nodes that were being discovered in his neck, stomach, and pelvis. He was steady during the complete procedure, dropped extremely little blood, and only stayed in the ICU for two times.
The operation just could not have long gone any better and we are just so grateful to the surgeon and for all of the prayers that were being despatched up for Dominic and the surgical workforce that day. There is one rogue lymph node underneath his remaining clavicle that the surgeon understood going in wasn’t able to be arrived at from both the neck or the thoracoabdominal incision. It will be re-scanned and both eliminated via a scope course of action or if it has shrunk ample, radiated.
Recovery was quite gradual going the very first handful of times having just a number of steps was difficult for Dominic and it was so difficult to see him struggling and getting fatigued by this sort of easy movements. He had a chest tube and catheter for four times publish-surgical procedure, and an stomach drain for a 7 days, which didn’t assistance! But it was also astounding to see what a big difference just a couple of times could make. Doing work with PT and OT was excellent and within just a week he was strolling back again and forth to the playroom in the healthcare facility.
A few of times after operation, they learned a chylous leak (generally, unwanted fat leaking by way of the lymphatic process), which we were told beforehand would be a chance because so several lymph nodes would be taken off. It was the only true complication publish-surgical procedure they addressed it with treatment and a minimal-body fat diet plan for about 5 times and it resolved.
A week following surgery, Dominic started his fourth spherical of chemo. This just one hit him the toughest, probably due to the fact he was even now recovering from medical procedures, he misplaced his appetite for a range of times, had some nausea, and was much more exhausted than common. We were being capable to head back again property soon after that cycle of chemo was total, 11 times following his surgery.
Back Household
The surgeon indicated that whole recovery will acquire about two months, but that walking and gentle exercise is wonderful for him, so he started off by walking our driveway and cul de sac and bought back again on his pedal kart bicycle (bicycle driving was medical doctor-accepted) for some effortless rides. He has step by step regained a lot of energy, as perfectly as vary of movement, and is riding his bicycle a lot quicker and is up and participating in like standard.
Just one of our most important hurdles since acquiring house is that he just was not again to himself for very some time, which we experienced been instructed was entirely regular. He was lethargic, not talkative, not fascinated in playing, and we all missed our Dominic!
Portion of the concern is that it took him a whole lot extended to rebound from this very last round of chemo than any of the previous rounds that he experienced. His white counts sat bottomed out at or in close proximity to zero for two complete months, and he essential a few platelet transfusions and two blood transfusions inside of a week. We logged some Prolonged times at clinic the 7 days soon after we acquired again.
The other difficulty is that he had prolonged decline of urge for food following chemo and experienced continued to lose fat (and he was minimal to start out with!). As a final result, the physicians begun him on an urge for food stimulant a week ago and it seems to have kicked in about the last few of times since he’s been having so considerably better and attained a small in excess of a 50 % pound since his clinic appointment last week.
All of his counts began coming again up in the past pair of times and he has not wanted any transfusions considering that early last 7 days. We’re so grateful he’s obtaining back to his outdated self, bit by bit but undoubtedly!
Next Steps…
Upcoming week, Dominic will bear a battery of scans and a bone marrow biopsy to see the actual standing of the disorder post-operation and just after completion of chemo.
Soon thereafter, he’ll start out his very first round of immunotherapy antibody treatments, and then have radiation. The lengthier-phrase program is that he will have at least 5 rounds of immunotherapy remedies, spaced out about a month aside. Scans will be done immediately after each individual two rounds to see how matters are seeking. Inquiring for a lot of prayers that we get cleanse scans as soon as doable 🙏🏻
Thank you all so much all over again, for achieving out and inquiring about Dominic, for maintaining him in your prayers, for showering him with playing cards, and for continuing to really like on us as a loved ones. We sense you, and your kindness and prayers raise us up and give us power.
I’ll share another update following we get via our future techniques! In the meantime, we’re soaking up each one working day that we can all spend time with each other underneath a person roof ❤️
