Bilateral Retinoblastoma is largely genetic. We were under the impression that Jamison's was sporadic but did genetic testing on Jeff and myself to find out if there was a family history. In doing this we found out that Jeff has the mutation that Jamison has and he is a silent carrier of RB. Once we learned this we needed to get Cole tested because Jeff had a 50% chance of passing it on. We learned the results today and unfortunately Cole also has the mutation.
What does this mean for Cole...well, for now nothing. Hopefully it will never develop into anything. Likely he will be seeing Dr. Shields in Sept. He has had two ophthalmologist appointments with Dr. Cheeseman, the doctor who diagnosed Jamison, and he has been cleared in both of those. Eye cells don't finish developing until about the age of 5, so there is a chance he could be diagnosed with retinoblastoma until then. In the long term he will run the same risks that Jamison runs for getting another form of cancer. So, it pretty much sucks. It also means he and Jamison have a 50% chance of passing it on to their future children if they decide to have them.
Please pray for Cole that he never develops retinoblastoma and please pray for Jamison that his cancer won't return.
Today Jeff and I are just bummed, speechless, don't know what to say. There's nothing really to say. We don't know if Jeff's mutation is sporadic, we can't find that out unfortunately since his mom passed away. We do know that his dad tested negative and doesn't have the mutation. So if it was inherited, then it would have been from his mother's side.
I guess we will really need to buy stock in sunscreen as we have already gone through 6 cans of it this summer and it's barely July. It's one of the ways we know to do our best to protect them from sun cancer, we also ask that anyone who does smoke, please don't do so around our family. They don't need to be near it. I have turned into the crazy lady who yells at people for smoking in the non-smoking areas.
Wow...sorry to hear! At least you are doing all you can to be prepared and know what could potentially lie ahead. As always, my thoughts and prayers are with your family! I think of you guys a lot (even though we've never met)! Hugs!
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