Here or dm if anybody goes thru something like this or just needs to vent. I’ve shared our story on some support groups and spoken with a dozen or so parents from around the world recently, many just needing to talk to someone who understands.
My middle son last year while at UT was having headaches and nausea. Eye Dr saw pappiledema and sent him to UTK for a stat mri. Before I got halfway up there, my son called and had been told he had a mass on his brain. Surgery within 36 hours. Thought it would be benign. Path delayed week after week which was worrisome. Our UTK surgeon was great btw and got it all out.
We had a bad exp at Vandy with them telling him/us his entire brain was infected, the cancer wasn’t taken out and there were microscopic cancer cells everywhere. I asked how he knew if they were microscopic and he said “due to the diagnosis of Astrocytoma stage 4. We will begin radiation and chemo and try our best to get him 5 years.” I couldn’t believe what I heard. My son fell on the floor.
Long story short, they were wrong. Further testing showed Neuroepithelial Patz1 fusion, a tumor rarely seen and studied, but being misdiagnosed. Much better prognosis. Ended up at st Jude for proton radiation and the outlook a good chance we don’t see it again, though we know it’s C so who knows. At any rate, we’ve been thru it an I’ve learned a lot. If anybody has comments or questions about the following I’d be happy to help online or dm or off:
-brain tumors. There are 150ish of them now. I would suggest second opinion and dna/molecular testing to verify any diagnosis. We were 2 days from unnecessary full brain radiation and chemo.
-recovery from brain surgery. Steroids and brain surgery is a tough mix and learned how to help him manage
-St Jude. Any questions about their systems or processes, which require no red tape. We had a scare during radiation and they immediately ran an mri and eye test, no questions asked or approval needed.
-Anything in regards to being a dad/parent and trying to handle it all. I did well at times and poor in others
-Follow up scanxiety
-Google. Do not pay attention to survival rates. I have run into sooo many who were told a few months and are years out.
Or anything other questions are good.
He is doing great btw. 13 months out and clear scans which are a miracle. If you see someone stacking Red Bull shelves in all the Weigels, that’s him.
Image attached.
Sorry for TL/DR length but it’s been importsnt for me in the healing process to put it out there and reach out as it was as dark and hopeless for us as could be but here we are today.
My middle son last year while at UT was having headaches and nausea. Eye Dr saw pappiledema and sent him to UTK for a stat mri. Before I got halfway up there, my son called and had been told he had a mass on his brain. Surgery within 36 hours. Thought it would be benign. Path delayed week after week which was worrisome. Our UTK surgeon was great btw and got it all out.
We had a bad exp at Vandy with them telling him/us his entire brain was infected, the cancer wasn’t taken out and there were microscopic cancer cells everywhere. I asked how he knew if they were microscopic and he said “due to the diagnosis of Astrocytoma stage 4. We will begin radiation and chemo and try our best to get him 5 years.” I couldn’t believe what I heard. My son fell on the floor.
Long story short, they were wrong. Further testing showed Neuroepithelial Patz1 fusion, a tumor rarely seen and studied, but being misdiagnosed. Much better prognosis. Ended up at st Jude for proton radiation and the outlook a good chance we don’t see it again, though we know it’s C so who knows. At any rate, we’ve been thru it an I’ve learned a lot. If anybody has comments or questions about the following I’d be happy to help online or dm or off:
-brain tumors. There are 150ish of them now. I would suggest second opinion and dna/molecular testing to verify any diagnosis. We were 2 days from unnecessary full brain radiation and chemo.
-recovery from brain surgery. Steroids and brain surgery is a tough mix and learned how to help him manage
-St Jude. Any questions about their systems or processes, which require no red tape. We had a scare during radiation and they immediately ran an mri and eye test, no questions asked or approval needed.
-Anything in regards to being a dad/parent and trying to handle it all. I did well at times and poor in others
-Follow up scanxiety
-Google. Do not pay attention to survival rates. I have run into sooo many who were told a few months and are years out.
Or anything other questions are good.
He is doing great btw. 13 months out and clear scans which are a miracle. If you see someone stacking Red Bull shelves in all the Weigels, that’s him.
Image attached.
Sorry for TL/DR length but it’s been importsnt for me in the healing process to put it out there and reach out as it was as dark and hopeless for us as could be but here we are today.
