Brentyn and Chloe's fight with pheochromocytoma

Organized by: Robert Patrick

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THE STORY:

I met Sandy and her kids Brentyn, 14 and Chloe, 9 in 2009, two weeks after her son Brentyn was diagnosed with pheochromocytoma at All Children's hospital in St. Petersburg, FL., after having chest pains and being rushed to Bayfront medical center, where they discovered that he had had a slight heart attack. The following is a brief explanation of pheochromocytoma, also known as pcc, taken from Medscape: A pheochromocytoma is a rare, catecholamine-secreting tumor that may precipitate life-threatening hypertension. The tumor is malignant in 10% of cases but may be cured completely by surgical removal. Although pheochromocytoma has classically been associated with 3 syndromes—von Hippel-Lindau (VHL) syndrome, multiple endocrine neoplasia type 2 (MEN 2), and neurofibromatosis type 1 (NF1)—there are now 10 genes that have been identified as sites of mutations leading to pheochromocytoma. In Brent's case, after being scanned at All Children's, it was discovered that he had a number of tumors throughout his adrenal area and needed immediate surgery to remove them. After a grueling 12 hour procedure, they were confidant that they removed most of the tumors but in the process, also had to completely remove both of his adrenal glands. That meant that he would have to be on synthetic medication for the rest of his life to regulate his blood pressure and other things that our adrenal glands naturally provide in our bodies. Any simple trauma to his body could potentially kill him because his body would not naturally produce the adrenalin needed to protect him (in such cases, he would need an injection of solo-cortef to flush his system with artificial adrenalin). Not long after Chloe's 14th birthday, she started showing the same signs that Brent had leading up to his diagnosis, tremors and hypertension. She was tested, and also tested positive for the disease. Not long after her diagnosis, we flew to the NIH in Maryland to meet with a renowned Dr. That specialized in the treatment of pcc. Both kids were scanned. Brent had multiple tumors present again, and Chloe had two present, one that wasn't big enough to be concerned with, but one was on her corroded artery in her neck which did cause a concern. We scheduled both of their procedures to be done at the same time, but had to wait a couple of months to do so. After returning to the NIH to get their procedures done, Brent had the exact surgery he had several years prior, about 10 hours long. Chloe's was about 6 hours due to the accidental cutting and patching of her corroded artery (they told us going in that it would be risky). The NIH does these procedures at no cost to us, but in return, they keep the tumors for future studies for the disease, which is fantastic. We recently found this new FDA approved device (called the Bemer) that you can put in your home that has been proven to help people with different ailments. Testimonials had indicated that it relieves, and in some cases has cured things such as psoriasis, arthritis, stress (which is something our family is very familiar with) and had even shown great results with Alzheimer's. We hope that you read up on this device and it's benefits with other ailments, it's very interesting. This is the reason, among other expenses, that we have decided to do this crowdrise. We have never asked anyone for their help, only their prayers, throughout this entire experience. Best wishes, Rob, Sandy, Brentyn and Chloe

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Organized by

Robert Patrick

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