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RC's Neuroblastoma Fight

$33,280 of $35,000 goal

Raised by 315 people in 17 months
When RC was born, we knew immediately he was a special guy. He was our surprise miracle baby, after five years of infertility and a medically risky pregnancy, and he had beaten all the odds. When he was diagnosed with moderate bilateral sensorineural hearing loss and needed hearing aids at two months old, again he started outperforming every benchmark his specialists set for him, wearing his aids without complaint and growing his verbal skills in leaps and bounds.

On September 25, 2017, we found out our precious RC has stage 4 high-risk neuroblastoma. His only symptoms were a daily fever and some difficulty/reluctance to move. We were lucky enough to land in the emergency room at the Children's Hospital of Philadelphia two weeks after his symptoms began, and had a diagnosis within three days. His treatment began September 30.

RC has a long and difficult road ahead of him. He can expect nausea, vomiting, hair loss, and blood in his urine, among a host of other side effects from his chemotherapy. After five rounds of chemo he will have major surgery to remove the largest tumor. Then he'll receive radiation, more high-dose chemo, and antibody therapy. Total treatment time is close to a year and a half.

During this time, RC will need his Mama with him as much as possible. Mama, our sole breadwinner, will need time away from work, during which she has elected to be paid only part of her hours in paid time off. The money we raise will help with bills (both home-related and medical) and allow RC and his parents to face his cancer together for as long as it takes to get him well. We are hopeful that RC will once again beat the odds set against him and be victorious against neuroblastoma!
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Happy holidays from RC and his squad! RC continues to be "cancer free" (the scare quotes are always necessary, as it's impossible to know whether we've gotten every last cell). Friday he completed his second cycle of immunotherapy and he'll come home tomorrow. This recent stay has been the hardest since his second stem cell transplant; he's been sleeping about 22 hours a day on average, waking mostly to dry heave or vomit. Today we started to see glimpses of his old personality, which is usually a good sign that he's about to turn the corner. Barring any unplanned admissions for illness, we're excited that in 2019 we are facing down only three more hospital stays. Then we just need RC to start eating and drinking again and things will start to resemble normalcy. We're ever grateful for those who support us and keep us optimistic. Happy New Year!
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Today RC had his last radiation treatment. It was a long time coming, after multiple delays getting started and a bloodstream infection this week that earned him an admission and a postponed last treatment. While we're very excited to have another treatment phase behind us, the good news comes with a setback, as is often the case with poor RC: the infection means his port needs to be removed and replaced after the infection clears. He'll have a PICC line in the meantime, which is fine, but it means two more surgical procedures and two more anesthetics.

After we get this infection taken care of, it's more scans and another bone marrow biopsy to make sure everything is good, then it's six months of immunotherapy. And then, fingers crossed, we all get to go back to somewhat normal lives.
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We have reached NED!

According to RC's most recent MRI and MIBG, the residual presence in his chest is no longer there and the primary tumor is gone, so there's no evidence of disease in his body right now. He'll likely be getting a lower dose of radiation during the radiation therapy, but oncology will have to determine that with the radiation team.

What is NED? https://www.mskcc.org/experience/living-beyond-cancer/resources-survivors/what-cure

Short answer, it's very very very good, but not the end of our journey. We'll still be irradiating the area where the primary tumor was, and he'll still get six months of immunotherapy to hopefully wipe out any straggler cells left.

But for now, we smile.
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Two months since our last update?! Well, it's been busy. RC had a month "off" at home that he enjoyed a lot, even though we couldn't really go anywhere. But he had a lot of his favorite people come visit him, and he had a good time getting reacquainted with his toys. Then it was back to CHOP for his second high-dose chemo with stem cell rescue. This one was rough. RC had really bad mucositis from his lips down to his tush, which necessitated a pain pump. He also had a lot of vomiting. So for ten days straight all he did was sleep and puke. He looked pretty bad. But, as seems to be his usual, he turned himself around pretty quickly. They told us this transplant usually requires a six to eight week admission; we got home in four weeks and four days! We won't know for a few more months whether RC's residual hearing will be affected by the chemo, but so far everything seems to be status quo. For now we get some time off while we get ready for proton radiation; that'll go from about late September to early October, all outpatient. In the meantime, RC needs to work on eating food with his mouth (chemo has changed his taste buds, so mealtimes are frustrating for us all) and gaining a little weight.
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$33,280 of $35,000 goal

Raised by 315 people in 17 months
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