Jun 07 2014

Lucas’ Story


Age of surgery: 8 yrs old

City/State: Las Vegas Nevada

Type: Ganglioglioma C1-just past C5,large brain stem cyst

Hospital: Lucille Packard Childrens Hospital at Stanford

Neurosurgeon: Dr. Michael Edwards

Surgery: January 2000

Radiation/Chemo: No/No


Lucas was 8 yrs old when he started to complain of neck pain in the middle of the night. 6 weeks later and many doctors visits he was sent for an MRI of his brain and neck. March 8, 2013 he was diagnosed with a large brain and spinal cord tumor. He was admitted immediately to the hospital to start steroids to reduce swelling before surgery. We were transferred to Lucille Packard Childrens Hospital the following day. After meeting with Dr. Edwards he informed us that the area in Lucas’ brain stem actually Syringomyelia and Syringobulbia extending from his lower pontine junction and involving the medulla. In other words cysts. Scary but better than tumor. March 13, 2013 Lucas had an 8 hour surgery which included a occipital craniectomy and a C1 laminectomy, C2-C5 osteoplastic laminotomy with an aggressive and near total resection of an intermedullary and extramedullary spinal cord tumor. Part of the tumor was left behind because it had pushed through the pia mater layer of the spinal cord between C2-C4. Dr. Edwards felt Lucas’ left side deficits would have been to great, and with the tumor being a low grade Ganglioglioma he decided to leave it behind. Now with surgery going well we were able to start rehabilitating his right and left side. The right side came back very fast and a year later we are still working on his left side, and balance issues.  Lucas has issues with his bowels and is not able to always control them and that is so not cool for a 9 year old boy!  We had out 1 yr MRI and the tumor is still stable and the cyst is as well, but another small cyst has popped up. We will just continue to watch all these things. He has been very brave through everything and doesn’t complain at all. He still plays soccer and goes to school and lives a pretty normal life. I hope his story is helpful to anyone who reads it.

Tiffany Ahlbach