Gage's Caringbridge Page

For the newest updates on Gage and the recent brain surgery that he had in Jan 2009, please go to www.caringbridge.org/visit/gageburi







Welcome to Gage’s Web Page. This page is intended to keep our family and friends up to date on what all is going on with Gage. In June 2003, Gage was diagnosed with Diencephalic Syndrome caused by a Juvenile Pilocytic Astrocytoma Brain Tumor. It is benign and on a scale of 1 to 4, it is a slow growing 1. As Gage's mother, I knew that something was wrong when he was 4 months old. He wouldn't take a bottle easily, couldn't/wouldn't eat anything cheerio size and was extremely anorexia looking and very happy go lucky along with being very active. I had taken him to several doctors around town and even drove 2 hours away to Nashville and none of the doctors could find anything wrong with him.
On June 20, 2003 Gage's eyes started moving horizontally and by then I knew something was seriously wrong. On June 25th we took Gage to see a pediatric opthamologist an hour and a half away who referred us to a pediatric neurologist who then admitted us to Southeast Missouri Hospital where an MRI was done and the results were given to me and my family. On June 27, 2003, Gage, myself, and Gage's grandmother (my mother) were taken by air ambulance to Washington D.C.'s Children's National Medical Center where we lived temporarily for 3 months to be treated under head neurologist, Roger Packer who invented the type of chemotherapy that Gage is getting. While there, Gage had a brain biopsy and two surgeries for a broviac catheter insertion. After our three month stay in D.C., we returned back to Paducah Ky, where we would take a 3 hour drive one way once a week to St. Louis Children's Hospital to receive his chemo. Due to the size of Gage's tumor (4x4x5cm), he was on chemotherapy using carboplatin and vincristine from July 2003 to August 2004 to help shrink or kill the tumor. In December of 2004 after Gage’s last MRI, we were told that everything looked good and that we were good to go on getting his broviac taken out. By late February, Gage was starting to have hydrocephalus symptoms. To make a long story short, we ended up going back to D.C. Children’s Hospital where Gage had to have a shunt and a shunt revision and was on the oral chemo Temodar for 16 months. In August of 2006 an MRI showed that the tumor was growing. Gage had a port a cath surgery a few days later and started on the chemotherapy vinblastine a week ;ater. In Jan of 2007 we stopped all chemo treatments (I truly believe that Gage also needed this break since he has been on different chemotherapies for almost 4 years with only a 7 month break back in 2004). We are continuing him on the Protocel 23 every 4 hours and are seeing results/lysing with this.

Journal

Tuesday, January 27, 2009 10:39 PM CST

Please log onto the new website that we have been updating for some time now at www.caringbridge.org/visit/gageburi

It has all the updates on his current condition and the brain surgery he recently had on January 23, 2009. Thanks so much.

Hospital Information:

Vanderbilt Children's Hospital and Children's National Medical Center in Washington D.C.

Links:

E-mail Author: tburi@bellsouth.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.