Hi there buddies!
I hope that your summer time has been completely great ☀️
I’m popping in today to offer an update on Dominic so lots of of you have prepared and requested how he is undertaking, and how the surgical treatment went, and I thank you for your patience!
Very first, a Thank You
The outpouring of attractive cards, postcards, and gifts that have been sent to my PO box has been so heartwarming. Our relatives is wholly and completely humbled by your thoughtfulness, and we thank you from the bottom of our hearts for getting time out of your day to do one thing that would carry a smile to Dominic’s deal with ❤️ THANK YOU!
Surgical procedures Update
Dominic had his tumor resection surgery on Monday, June 20th at Memorial Sloan Kettering in New York. He went into the working space at 9:30am and arrived in his area in the pediatric ICU close to 6:45pm. Leaving him in that operating area was intestine-wrenching, but an OR nurse was able to offer updates on a typical basis throughout the day, which made all of the waiting significantly significantly less agonizing. The surgeon was capable to remove his total tumor, as very well as all of the diseased lymph nodes that ended up determined in his neck, abdomen, and pelvis. He was stable throughout the full procedure, dropped extremely little blood, and only stayed in the ICU for two times.
The surgical procedures just could not have long gone any greater and we are just so grateful to the surgeon and for all of the prayers that were despatched up for Dominic and the surgical crew that working day. There is one particular rogue lymph node beneath his left clavicle that the surgeon knew heading in was not in a position to be attained from both the neck or the thoracoabdominal incision. It will be re-scanned and both taken off by using a scope process or if it has shrunk ample, radiated.
Recovery was incredibly gradual heading the 1st number of days using just a couple of methods was challenging for Dominic and it was so hard to see him struggling and getting fatigued by these kinds of very simple movements. He experienced a chest tube and catheter for four days article-surgical procedures, and an stomach drain for a week, which did not assist! But it was also awesome to see what a variation just a couple of days could make. Operating with PT and OT was wonderful and in just a 7 days he was walking back again and forth to the playroom in the healthcare facility.
A couple of days just after surgery, they discovered a chylous leak (in essence, fat leaking by way of the lymphatic process), which we ended up explained to beforehand would be a possibility because so numerous lymph nodes would be taken out. It was the only real complication post-surgical procedure they addressed it with medication and a reduced-excess fat diet for about 5 times and it settled.
A week right after surgical treatment, Dominic began his fourth spherical of chemo. This one hit him the most difficult, most likely for the reason that he was continue to recovering from surgical procedure, he shed his appetite for a quantity of times, experienced some nausea, and was a lot more worn out than normal. We ended up able to head back again residence after that cycle of chemo was complete, 11 times immediately after his surgical procedure.
Again Residence
The surgeon indicated that total recovery will consider about two months, but that going for walks and mild work out is great for him, so he started off by going for walks our driveway and cul de sac and obtained back on his pedal kart bike (bike riding was doctor-permitted) for some uncomplicated rides. He has progressively regained a great deal of energy, as properly as array of movement, and is riding his bike more quickly and is up and actively playing like standard.
One of our most important hurdles given that receiving dwelling is that he just was not back again to himself for very some time, which we experienced been informed was absolutely typical. He was lethargic, not talkative, not interested in actively playing, and we all skipped our Dominic!
Component of the issue is that it took him a good deal extended to rebound from this very last spherical of chemo than any of the previous rounds that he had. His white counts sat bottomed out at or close to zero for two whole months, and he needed three platelet transfusions and two blood transfusions within a week. We logged some Very long days at clinic the week soon after we got back.
The other problem is that he experienced extended decline of hunger following chemo and had ongoing to eliminate pounds (and he was minor to begin with!). As a final result, the medical practitioners began him on an appetite stimulant a week in the past and it seems to have kicked in above the previous pair of days due to the fact he’s been eating so substantially far better and obtained a small more than a half pound considering that his clinic appointment last week.
All of his counts started out coming again up in the last few of times and he hasn’t needed any transfusions because early previous 7 days. We’re so grateful he’s receiving again to his old self, gradually but undoubtedly!
Up coming Steps…
Following week, Dominic will undergo a battery of scans and a bone marrow biopsy to see the actual status of the condition submit-surgical procedures and after completion of chemo.
Shortly thereafter, he’ll commence his first spherical of immunotherapy antibody treatment options, and then have radiation. The lengthier-time period strategy is that he will have at least five rounds of immunotherapy treatment options, spaced out about a thirty day period aside. Scans will be carried out soon after each and every two rounds to see how things are looking. Asking for loads of prayers that we get cleanse scans as quickly as doable 🙏🏻
Thank you all so considerably once more, for reaching out and inquiring about Dominic, for preserving him in your prayers, for showering him with cards, and for continuing to enjoy on us as a relatives. We really feel you, and your kindness and prayers carry us up and give us energy.
I’ll share an additional update right after we get via our next steps! In the meantime, we’re soaking up every single working day that we can all shell out time together below a person roof ❤️
