Bilateral Choroid Xanthogranuloma in Grandson

Hello, I am Grandma but very involved with the now 5yr old grandsons journey. Diagnosed when he was 3,saw numerous pediatric specialists, neurosurgeon and neurologist disagreed about surgery left it to God,  one convinced the other, had surgery in April 2013 (he was 4 then), Upstate Golisano Ch…[Read more]

Hi everyone. My son, Jackson, had his tumor resection this past Thursday, July 19th. The doctors were amazing. The procedure took about 4 1/2 hours to complete. He spent a little over 24 hours in the pediatric ICU and then then almost 48 hours in the regular pediatric wing. We are home now and he is doing remarkably well. We are so blessed…[Read more]

Hi, my son, Isaac, was diagnosed with Juvenile Pilocytic Astrocytoma in January 2006 just before he turned 7 years old. His tumor was in the hypothalamus/optic chaism region. After a biopsy, he started chemo (carboplatin/vincristine). Two months later, his tumor grew over 2cm and spread throughout his brain and spine. After another biopsy to…[Read more]

Hi ladies. I’m glad you’re making use of this forum. My mom was all alone during my 2 operations and radiation treatment. My parents were divorced and my dad was there, but not like my mom. And he was remarried. Actually, most of my family is still on my s*#t list. So it’s really nice seeing you connect. I feel like it’s a gift for my mom. I love…[Read more]

My 12 year old son was diagnosed with a tumor in the anterior medial portion of his right temporal lobe at the beginning of April. We found it as a result of an MRI done after going to the doctor about odd headaches. He described the headaches as shocks of pain, though not electrical, coming in pulses sometimes with dizziness and once with funny…[Read more]

My son had an epidermoid tumor removed from left frontal lobe at 22 yrs old. It has caused alot of depression. He’s tried different meds but they had really bad side effects. Has anyone had any hormone testing with any help?

Hi, I am new to this site. Sitting here at the children’s hospital of Philadelphia where my 13 year old daughter just got admitted for headaches. She had a trigeminal schwannoma removed in 2008. She still has severe headaches that they don’t know why and can’t find a med to help!

Right now I’m in a french existentialism class and I feel like I relate strongly to Jean Paul Sartre in Nausea. One of the great themes in his book is that language is a thin veneer that separates us from the real world and that when one understands this it is at the same time liberating and nauseating. With all the speech aphasia issues I have…[Read more]