Dominic Replace 3.0 – Brown Eyed Baker

Howdy buddies!

I hope that your summer time has been completely great ☀️

I’m popping in at present to offer an replace on Dominic; so lots of you could have written and requested how he’s doing, and the way the surgical procedure went, and I thanks to your endurance!

First, a Thank You

The outpouring of gorgeous playing cards, postcards, and presents which have been despatched to my PO field has been so heartwarming. Our household is totally and completely humbled by your thoughtfulness, and we thanks from the underside of our hearts for taking outing of your day to do one thing that might convey a smile to Dominic’s face ❤️ THANK YOU!

Surgical procedure Replace

Performing some constructing on the resort after pre-op appointments.

Dominic had his tumor resection surgical procedure on Monday, June twentieth at Memorial Sloan Kettering in New York. He went into the working room at 9:30am and arrived in his room within the pediatric ICU round 6:45pm. Leaving him in that working room was gut-wrenching, however an OR nurse was capable of present updates frequently all through the day, which made all the ready a lot much less agonizing. The surgeon was capable of take away his total tumor, in addition to all the diseased lymph nodes that had been recognized in his neck, stomach, and pelvis. He was secure all through the whole operation, misplaced little or no blood, and solely stayed within the ICU for 2 days.

5 days post-surgery.

The surgical procedure merely couldn’t have gone any higher and we’re simply so grateful to the surgeon and for all the prayers that had been despatched up for Dominic and the surgical staff that day. There’s one rogue lymph node under his left clavicle that the surgeon knew getting into wasn’t capable of be reached from both the neck or the thoracoabdominal incision. Will probably be re-scanned and both eliminated by way of a scope process or if it has shrunk sufficient, radiated. 

Restoration was very sluggish going the primary few days; taking only a few steps was arduous for Dominic and it was so tough to see him struggling and changing into exhausted by such easy actions. He had a chest tube and catheter for 4 days post-surgery, and an stomach drain for every week, which didn’t assist! However it was additionally wonderful to see what a distinction simply a few days may make. Working with PT and OT was great and inside every week he was strolling backwards and forwards to the playroom within the hospital. 

A few days after surgical procedure, they found a chylous leak (principally, fats leaking by the lymphatic system), which we had been informed beforehand could be a chance as a result of so many lymph nodes could be eliminated. It was the one actual complication post-surgery; they handled it with medicine and a low-fat eating regimen for about 5 days and it resolved.

Every week after surgical procedure, Dominic started his fourth spherical of chemo. This one hit him the toughest, possible as a result of he was nonetheless recovering from surgical procedure, he misplaced his urge for food for quite a lot of days, had some nausea, and was extra drained than common. We had been capable of head again residence after that cycle of chemo was full, 11 days after his surgical procedure.

The final chemo remedy earlier than we had been discharged!

Again Dwelling

The surgeon indicated that full restoration will take about two months, however that strolling and delicate train is nice for him, so he began by strolling our driveway and cul de sac and acquired again on his pedal kart bike (bike driving was doctor-approved) for some straightforward rides. He has progressively regained lots of power, in addition to vary of motion, and is driving his bike sooner and is up and taking part in like regular.

Certainly one of our greatest hurdles since getting house is that he simply wasn’t again to himself for fairly a while, which we had been informed was fully regular. He was torpid, not talkative, not fascinated by taking part in, and all of us missed our Dominic!

A part of the problem is that it took him quite a bit longer to rebound from this final spherical of chemo than any of the earlier rounds that he had. His white counts sat bottomed out at or close to zero for 2 full weeks, and he wanted three platelet transfusions and two blood transfusions inside every week. We logged some LONG days at clinic the week after we acquired again.

The opposite situation is that he had extended lack of urge for food after chemo and had continued to shed weight (and he was little to start with!). Consequently, the medical doctors began him on an urge for food stimulant every week in the past and it appears to have kicked in during the last couple of days as a result of he’s been consuming so a lot better and gained a bit of over a half pound since his clinic appointment final week.

All of his counts began coming again up within the final couple of days and he hasn’t wanted any transfusions since early final week. We’re so grateful he’s getting again to his previous self, slowly however certainly!

Subsequent Steps…

Subsequent week, Dominic will endure a battery of scans and a bone marrow biopsy to see the precise standing of the illness post-surgery and after completion of chemo.

Shortly thereafter, he’ll start his first spherical of immunotherapy antibody therapies, after which have radiation. The longer-term plan is that he may have a minimum of 5 rounds of immunotherapy therapies, spaced out a few month aside. Scans will likely be carried out after each two rounds to see how issues are wanting. Asking for plenty of prayers that we get clear scans as quickly as doable 🙏🏻

Thanks all a lot once more, for reaching out and asking about Dominic, for retaining him in your prayers, for showering him with playing cards, and for persevering with to like on us as a household. We really feel you, and your kindness and prayers raise us up and provides us energy.

I’ll share one other replace after we get by our subsequent steps! Within the meantime, we’re absorbing each single day that we are able to all spend time collectively below one roof ❤️