December 2, 2022

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Eat Without Food

Dominic Update 3.0 – Brown Eyed Baker

Hello good friends!

I hope that your summertime has been totally excellent ☀️

I’m popping in today to give an update on Dominic so lots of of you have written and asked how he is performing, and how the medical procedures went, and I thank you for your persistence!

1st, a Thank You

The outpouring of gorgeous cards, postcards, and items that have been sent to my PO box has been so heartwarming. Our relatives is completely and utterly humbled by your thoughtfulness, and we thank you from the bottom of our hearts for using time out of your day to do anything that would convey a smile to Dominic’s encounter ❤️ THANK YOU!

Surgery Update

Undertaking some making at the hotel following pre-op appointments.

Dominic had his tumor resection operation on Monday, June 20th at Memorial Sloan Kettering in New York. He went into the operating home at 9:30am and arrived in his space in the pediatric ICU about 6:45pm. Leaving him in that running space was gut-wrenching, but an OR nurse was ready to provide updates on a frequent foundation in the course of the day, which created all of the waiting much less agonizing. The surgeon was capable to get rid of his overall tumor, as perfectly as all of the diseased lymph nodes that have been identified in his neck, stomach, and pelvis. He was secure all through the total operation, lost incredibly minor blood, and only stayed in the ICU for two times.

Five days put up-surgery.

The surgery only could not have long gone any much better and we are just so grateful to the surgeon and for all of the prayers that had been despatched up for Dominic and the surgical team that working day. There is just one rogue lymph node below his left clavicle that the surgeon understood going in was not ready to be achieved from possibly the neck or the thoracoabdominal incision. It will be re-scanned and both removed by means of a scope technique or if it has shrunk enough, radiated. 

Recovery was extremely slow likely the initial number of days taking just a few steps was tough for Dominic and it was so tricky to see him battling and becoming fatigued by this kind of very simple movements. He experienced a upper body tube and catheter for 4 days publish-surgical procedure, and an abdominal drain for a week, which did not support! But it was also awesome to see what a variance just a pair of times could make. Performing with PT and OT was excellent and within just a 7 days he was walking again and forth to the playroom in the clinic. 

A couple of days after operation, they learned a chylous leak (essentially, excess fat leaking via the lymphatic procedure), which we ended up explained to beforehand would be a likelihood for the reason that so many lymph nodes would be taken off. It was the only actual complication article-medical procedures they treated it with treatment and a lower-excess fat food plan for about 5 times and it settled.

A week immediately after surgical treatment, Dominic started his fourth round of chemo. This one particular hit him the most difficult, most likely due to the fact he was nevertheless recovering from surgical procedures, he missing his appetite for a number of times, experienced some nausea, and was extra fatigued than standard. We were being able to head back again home immediately after that cycle of chemo was entire, 11 times after his medical procedures.

The previous chemo procedure just before we were being discharged!

Again Property

The surgeon indicated that full restoration will get about two months, but that strolling and gentle training is terrific for him, so he commenced by strolling our driveway and cul de sac and bought again on his pedal kart bicycle (bike riding was health practitioner-permitted) for some quick rides. He has gradually regained a great deal of energy, as properly as variety of motion, and is riding his bike more rapidly and is up and playing like usual.

One particular of our major hurdles because receiving household is that he just wasn’t back to himself for rather some time, which we experienced been explained to was wholly regular. He was lethargic, not talkative, not intrigued in participating in, and we all missed our Dominic!

Component of the challenge is that it took him a whole lot extended to rebound from this last round of chemo than any of the earlier rounds that he had. His white counts sat bottomed out at or in the vicinity of zero for two complete months, and he needed 3 platelet transfusions and two blood transfusions within just a week. We logged some Extended times at clinic the week immediately after we acquired back again.

The other concern is that he had prolonged decline of urge for food just after chemo and had ongoing to lose weight (and he was little to start with!). As a final result, the health professionals started him on an hunger stimulant a week back and it would seem to have kicked in above the previous pair of times due to the fact he’s been feeding on so a lot improved and obtained a minor more than a 50 percent pound because his clinic appointment previous 7 days.

All of his counts started coming again up in the very last pair of times and he has not desired any transfusions considering that early past 7 days. We’re so grateful he’s having back again to his outdated self, slowly and gradually but definitely!

Next Steps…

Up coming week, Dominic will bear a battery of scans and a bone marrow biopsy to see the correct standing of the sickness publish-surgical procedure and following completion of chemo.

Soon thereafter, he’ll start out his first round of immunotherapy antibody treatments, and then have radiation. The extended-expression plan is that he will have at minimum 5 rounds of immunotherapy solutions, spaced out about a thirty day period apart. Scans will be accomplished just after each individual two rounds to see how matters are on the lookout. Inquiring for tons of prayers that we get thoroughly clean scans as quickly as doable 🙏🏻

Thank you all so significantly once again, for achieving out and inquiring about Dominic, for preserving him in your prayers, for showering him with playing cards, and for continuing to appreciate on us as a family. We experience you, and your kindness and prayers carry us up and give us toughness.

I’ll share an additional update right after we get by means of our next ways! In the meantime, we’re soaking up each individual single day that we can all commit time with each other beneath just one roof ❤️