Introducing Chris Ellis
Chris was diagnosed with stage IV neuroblastoma in July 2014 after a kick to his eye from his big sister led to its discovery. After an emergency craniotomy to debulk the tumor and save his eye he was scanned and disease was found predominantly on his left side but throughout his thighs, hips, pelvis, spine, skull, and in his marrow. In his upfront therapy he was declared 'no evidence of disease' after just two cycles of chemo. We continued with the entire protocol and the clinical study he was enrolled in leaving nothing to chance. All of this included 7 total cycles of chemo (roughly 42+ rounds); an adrenalectomy to remove his left adrenal gland that was completely taken over by the primary tumor; MIBG therapy clinical trial where a high dose of liquid radiation is infused in the patient making them highly radioactive; stem cell harvest and transplant of his own cells resulting in 100 days of isolation, severe mucositis, 3 weeks in the PICU fighting VOD and discharging after 10 weeks total, 12 rounds of proton therapy, immunotherapy. During all of this it was discovered that Chris also had SVT (supra ventricular tachycardia and an extra membrane in his left atrium). With one week left of inpatient immunotherapy after 15 months of continuous treatment our world was shattered once again to find out that even after all he had endured Chris had relapsed. Spots were found in his thighs, pelvis, and at the base of his skull. Since mid October 2015 Chris has had his gallbladder removed courtesy of a 2cm (that is cm, NOT mm) stone only to find his gallbladder was no longer functional, his liver 'swallowed' it upon shrinking after VOD. He had to abruptly cease chemo to undergo an emergency 20 rounds of radiation to his head to shrink the recurring tumor by his eye which was causing pain and eyesight problems. He just returned home from 11 days in the PICU due to an extremely low heart rate and blood pressure from what we don't know. As a result he had to have an ablation to eliminate his SVT because he could no longer take his heart medications. He is now approaching cycle 3 (1 week inpatient/2 weeks home/repeat for 17 cycles) of a chemo/antibody regimen that only 17 kids have had and 8 of the 17 are in remission. He will be scanned at the beginning of February and if the tumors remain unchanged or show shrinkage we continue and if not we stop. This desperately needs to work or we begin grabbing at straws. Neuroblastoma is a beast but Chris is a tank. This has devastated our lives but we aren't broken. Chris' dad told him that cancer hates happiness so we need to stay positive. 8 children with refractory disease are now in remission from this latest treatment. We have no reason to believe our Chris won't be number 9. It is after all his lucky number.
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