Finally got classified by Dr Reuter at MSK. Up until know we had no idea what we had. So there you have it. Unlikely we will find a soul with the same variant but I am hopeful!!
indeed. I've followed your posts here and on another site - you've been a real trooper! I hope your doctors can learn enough about this to be able to really help.
Like LB, I've read your posts and we know you'll fight like a tigress for the best possible health for your son. You may not find another patient here with the same variant but I seem to remember reading that the prognosis for this is better than for some of the other rare variations of RCC. Good luck to you and your boy in his journey bsack to a normal life.
Hope I have not saturated the sites. It's difficult wish it was me. If you knew him you would love him. He is very well liked and just a good kid. Doesn't do drugs finished up his college drinking stint early so smart. All the good of me. I was a 70's baby I should be the one not him LOL. If you see anything in your travels of reading I would appreciate a heads up. I have posted at 3 sites and not even a bite. Thanks again and god speed for health and recovery to you both. I will be seeing a neph on 3/6 as during this journey well got checked and I appear to have cysts on my right kidney although we tested negative twice for tfe. We will see.
Oh and yes I am a harley lady rider. Thought that would give you insight into me LOL.
that you have 'saturated' the sites. Your posts have been inspirational to many of us who are fighting this thing! When I see someone so young with this, my mind just spins! WHY? Wish someone could come up with an answer. I cannot even imagine the journey you and he have covered. NEVER stop posting!
Sorry to hear that you've discovered some kidney issues too. Hopefully this will result in something positive.
LB - N D Y
What are you nutz? Don't you know that's dangerous? It could kill you. Blah, blah, blah... Always room for another biker. And like being on the road or at ralley, you know you can count on the support from some of your own. We're all here for you and your son.