• 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]

  • Anonymous posted an update in the group Group logo of Parents of Diagnosed ChildrenParents of Diagnosed Children 10 years ago

    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!

  • I am actually a grandPARENT and my grandson is older than some of these children. He was diagnosed and operated on at 19.

  • My son has a tectal glioma please visit his site at caringbridge.org/visit/noahbagwell

  • Howdy Folks
    My son was diagnosed w/ a brain tumor when he was 12. It was watched via MRI’s every 6 months, until at the age of 17, it was shown to have doubled in size almost, so it was removed at Vanderbilt in Nashville, TN on Januray 31st 2008. He had a grade II astrocytoma removed from his left frontal lobe.

    While it was still in his brain…[Read more]