Our world changed as we knew it on Aug. 12th, 2005.
Zach had been having, what we thought was car sickness associated with a headache, for about a year. He was constantly sick with some sort of virus or strep infection and frequented the doctor office. He played baseball that Spring of 2005 and we noticed how much slower and smaller he was than the other children his age. He did have some stumbling episodes, but he would act silly about it and say ‘ I just do that sometimes.’ He loves to make people laugh.
A week and a half after kindergarten got started, he began vomiting a whole day and had a headache. We thought it was a stomach virus until he jumped off the couch that evening and said his headache was gone, could he have something to eat. We took him back to the doctor and a CT was ordered for later that week. It was a long week. We noticed his head starting to tilt when he watched tv, he started salivating excessively, he began to limp. He told us he hurt his foot at school.
The day of the CT came and we were called back to the doctor’s office within an hour of finishing. We then learned of the mass in his 5 year old brain. We were immediately sent for MRI at Children’s Hospital in Knoxville. The neurosurgeon had already been notified and talked with us at length about the tumor in his brainstem and the need for surgery right away. The surgeon was only hopeful to get about 15-20% of the tumor out for biopsy. Due to the location in the brainstem it would be risky. Zach was admitted to the hospital for steroids over the weekend and had a resection on Mon. Aug.15th. Surgery only lasted about 2 1/2 hours (which was really scary since we were told a min. of 4 hours). Thank the Lord! They were able to get 90% of the Juvenile Pilocytic Astrocytoma out. He spent 2 days in the PICU and 12 days total in the hospital.
Zach was unable to walk for a couple of months. He had PT and OT 3 days a week for about 3 months, then went to 2 days a week. He has had right sided weakness since surgery. He has jumping of the eyes (nystagmus) and occasional incontinence of bowel and bladder. He wears boot type braces to help with his balance. He wears an eye patch to help with his right eye muscles.
We are currently at wait and see mode with follow up MRIs. He has to be sedated by an anesthesiologist to have the scan. He started out having MRIs every 3 months, but progressed to yearly scans when the tumor finally started to shrink in Oct. 2007. He takes a mild antidepressant for recurring headaches that he still continues to have.
Zachary is an inspiration to everyone who knows him. He never gives up and is a true miracle to us all. He takes karate and has done so well with it that his rehab doctor has discharged him from physical therapy. He is doing very well in school and will be starting the 3rd grade in the fall of 2008. He continues to have visits with his neurosurgeon, neurologist, opthalmologist, and rehab doctor. We continue to pray daily the rest of the tumor will shrink on its own.