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Good day pals!
I hope that your summertime has been certainly great ☀️
I’m popping in nowadays to present an update on Dominic so a lot of of you have prepared and requested how he is carrying out, and how the operation went, and I thank you for your tolerance!
Very first, a Thank You
The outpouring of attractive playing cards, postcards, and presents that have been sent to my PO box has been so heartwarming. Our household is absolutely and utterly humbled by your thoughtfulness, and we thank you from the bottom of our hearts for taking time out of your working day to do a thing that would carry a smile to Dominic’s face ❤️ THANK YOU!
Medical procedures Update
Dominic experienced his tumor resection surgical procedures on Monday, June 20th at Memorial Sloan Kettering in New York. He went into the functioning place at 9:30am and arrived in his home in the pediatric ICU about 6:45pm. Leaving him in that functioning area was intestine-wrenching, but an OR nurse was able to deliver updates on a common basis all over the working day, which made all of the ready a lot fewer agonizing. The surgeon was able to clear away his entire tumor, as nicely as all of the diseased lymph nodes that had been identified in his neck, stomach, and pelvis. He was secure through the complete operation, lost very minimal blood, and only stayed in the ICU for two times.
The surgery basically could not have long gone any far 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 crew that working day. There is 1 rogue lymph node down below his left clavicle that the surgeon realized heading in wasn’t equipped to be attained from possibly the neck or the thoracoabdominal incision. It will be re-scanned and possibly removed by using a scope course of action or if it has shrunk sufficient, radiated.
Restoration was pretty slow heading the to start with few times having just a handful of methods was really hard for Dominic and it was so tough to see him battling and turning into exhausted by these types of simple movements. He had a chest tube and catheter for four days publish-surgical treatment, and an belly drain for a 7 days, which did not aid! But it was also wonderful to see what a distinction just a few of days could make. Performing with PT and OT was great and inside a week he was going for walks again and forth to the playroom in the hospital.
A couple of days just after surgical procedure, they found a chylous leak (in essence, extra fat leaking as a result of the lymphatic procedure), which we ended up explained to beforehand would be a chance mainly because so several lymph nodes would be eradicated. It was the only authentic complication write-up-surgical procedures they handled it with medication and a very low-body fat eating plan for about 5 days and it resolved.
A week following surgical procedures, Dominic began his fourth spherical of chemo. This one hit him the most difficult, most likely since he was nevertheless recovering from surgical treatment, he misplaced his appetite for a number of days, experienced some nausea, and was far more fatigued than common. We ended up ready to head back again residence just after that cycle of chemo was entire, 11 days right after his surgical procedures.
Back again Home
The surgeon indicated that comprehensive recovery will take about two months, but that strolling and mild work out is excellent for him, so he started off by walking our driveway and cul de sac and received back on his pedal kart bike (bicycle driving was health care provider-approved) for some easy rides. He has steadily regained a large amount of electrical power, as very well as array of movement, and is using his bicycle faster and is up and enjoying like normal.
Just one of our largest hurdles because receiving dwelling is that he just wasn’t again to himself for really some time, which we experienced been advised was wholly normal. He was lethargic, not talkative, not interested in enjoying, and we all skipped our Dominic!
Section of the problem is that it took him a great deal lengthier to rebound from this previous spherical of chemo than any of the previous rounds that he had. His white counts sat bottomed out at or in the vicinity of zero for two entire months, and he necessary a few platelet transfusions and two blood transfusions in just a week. We logged some Lengthy times at clinic the 7 days immediately after we acquired back again.
The other challenge is that he experienced prolonged decline of appetite immediately after chemo and had continued to shed fat (and he was tiny to get started with!). As a end result, the medical doctors started off him on an hunger stimulant a 7 days in the past and it looks to have kicked in more than the final few of times mainly because he’s been ingesting so considerably far better and obtained a little around a 50 % pound due to the fact his clinic appointment very last week.
All of his counts started out coming back up in the past couple of times and he hasn’t required any transfusions given that early very last 7 days. We’re so grateful he’s acquiring back to his old self, gradually but certainly!
Next Steps…
Upcoming 7 days, Dominic will bear a battery of scans and a bone marrow biopsy to see the actual standing of the sickness post-medical procedures and just after completion of chemo.
Shortly thereafter, he’ll start his initial spherical of immunotherapy antibody treatment options, and then have radiation. The more time-time period prepare is that he will have at least five rounds of immunotherapy remedies, spaced out about a thirty day period apart. Scans will be accomplished just after each and every two rounds to see how factors are hunting. Asking for heaps of prayers that we get clear scans as quickly as achievable 🙏🏻
Thank you all so a great deal all over again, for achieving out and asking about Dominic, for holding him in your prayers, for showering him with cards, and for continuing to like on us as a loved ones. We really feel you, and your kindness and prayers elevate us up and give us strength.
I’ll share another update just after we get through our upcoming methods! In the meantime, we’re soaking up each and every solitary day that we can all devote time with each other beneath a single roof ❤️
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