The multiple types of tumors led to him being tested for Von Hippel-Lindau (VHL) syndrome, which he tested positively for. This syndrome comes with the side effects of hemangioblastomas on the brain, eyes, and spine, and renal cell carcinomas on the kidneys. He is doing really well, though he currently has kidney, brain, and spine tumors.
Since his brain surgery and his kidney surgery, Cody has joined a clinical trial with MD Anderson. We go for two days of testing at MD Anderson every three months as part of his clinical trial. He has been an awesome trial patient and August 2017 made 3 years on the medication! But - as you can imagine, the medical bills are astronomical and Cody will be on Pazopanib (the clinical trial medication) for as long as the trial will allow him to (there’s currently no end in sight).
The silver lining is that we discovered all of this before we began having children. This disease has a 50/50 chance of being passed on. That definitely hasn’t stopped our dream of wanting to grow our family. We will just have to take a different route than we once imagined.
We recently visited a fertility specialist and are confident that our best option is IVF with PGD (preimplantation genetic diagnosis). Cody is adamant about not bringing a child into the world to endure what he’s been through (and will continue to go through for the rest of his life). This option almost completely eliminates the possibility of passing VHL on to future children and grandchildren.
Asking for help is difficult for us, but without support our dream of becoming parents may never happen. Truly - no contribution is too small, and if you are unable to support us financially, we would love both your prayer for us throughout this emotional journey and for you to share our story with others!!
DonationsSee top donations
- Charles Howard
- Alex Phillips
- Lynette Ringrose
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more