UPDATE....Dec 23rd 2009, Gage's tumor is again growing. We are taking this news very hard! We will do our best to keep everyone posted but please be patient with us! Well it's been a while since I was able to update this page or even log into it. This has been a very painful journey so far and we try to live everyday to the fullest with our Gagie
We are approaching the one yr mark already, time has flown. Gage seemed to be doing well everything considered. He spent a week in the Seizure unit at Vanderbilt making sure that his latest side effect was not a seizure. Thank God his hand clenching episodes are not seizures but merely muscle spams from his brain trying to fire to a part that is no longer there. We watched Gage get stronger everyday until Sept. In Sept Gage started back sliding, the drooling he had in the beginning was back with a vengence, he could trip and fall at a moments notice and he started sleeping a lot again. This was such an upsetment, we had come so far! We went to see his primary who said "back to Vandy", we have another brain MRI on Dec 23rd, 3 mere days before the one year anniversary. We are praying and turning everything over to God, we are powerless to change the future but Max and I are committed to Gage and never giving up. NEVER GIVE UP NEVER GIVE IN! We will fight to the end for our child!
Gage was diagnosed with a brain tumor the day after Christmas 2008 at Vanderbilt Monroe Children's Hospital. Gage was suffering from extreme headaches, nausea, stumbling and drooling. He would spend hours upon hours screaming in pain. We took him to every military doctor we could and Gage was misdiagnosed with migraines at 2yrs old. We had to change our insurance to get Gage out of miltiary healthcare and into civilian healthcare, the test (MRI) that we had been denied through military doctors was ordered by his new civilian physician. The brain MRI was conducted at Vanderbilt Monore Children's Hospital in Nashville Tn.
My husband took Gage for the scan and I stayed at home with our other 4 sons ages 9, 5 and 11 months. Our 5yr old has autism spectrum disorder and would not have done well sitting in the waiting area for Gage. I received a tearful phone call from my husband approx 2hrs after the scan was to have started. He told me they had found a tumor in his cerebellum and that Gage was being sent to the ER from Radiology. I collapsed to the floor of my bedroom. I couldn't breathe, I couldn't move. I hung up on my husband and sobbed. I dialed my parents back in Pa and when they answered I couldn't even talk all I did was scream and cry into the phone. They knew without me having to say what happened. They immediately started making calls to family and friends. A good friend picked me and my other children up and drove us to be at Vanderbilt with Gage. My husband and I couldn't even speak it was too much. They allowed Gage to come home but we had to come back a week later to see the neruosurgeon. We met with Dr. Pearson less then a week later and he showed us a CT scan done of Gage's brain 4 months previous, no tumor visualized. Then Dr. Pearson showed us Gage's MRI, tumor visualized in the cerebellum. I felt as if I was going to pass out. Dr. Pearson told us of the urgent need to get the tumor out ASAP it was actively growing and they weren't sure what they were dealing with. 5 days later Gage was in surgery. 6 hours later Dr. Pearson emerged and told us it went well but that he had never seen anything like what they removed from Gage's brain. It camoflagued itself like normal cereberal tissue and was unresponsive to ultrasound as an alternative means of location. We went back and saw Gage, crying in his ICU bed, so confused, so many tubes.
The next day Gage had a repeat MRI and it showed there was tumor still present in his brain, this was devastating. After 5 days of hell we brought Gage home.
2 long weeks later the pathology was back and the answers we were expecting just weren't there. They still had no clue what was in Gage's head. On April 16th we go back to neurosurgery and a brain MRI. We pray that God will bring Gage through this and give us the strength together as a family to hold it together for him as he continues on his journey.
Our goal is to raise $15,000 for the Pediatric Brain Tumor Foundation through this site and local fundraisers.
We are an Active Duty Military Family currently stationed at Ft. Campbell on the Tn, Ky border.
Thank you for your donation and prayers!!!!!!!!!
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