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Apr 27, 2016 Latest post:
Dec 1, 2019
Colin is 5 and was diagnosed with a brain tumor on March 17, 2016.
We only noticed the tumor thanks to a truly diligent pediatrician. Towards the end of February 2016, Colin began vomiting often and having problems keeping his balance. The general consensus was that he only had a stomach bug. But then his mother, Christina, noticed that his pupils were dilating differently. Our doctor managed to pull some strings to get him to an MRI. That means we've caught the tumor early.
He had his biopsy on March 23 , 2016, and we learned on March 30 that his tumor - which lies directly in the brain stem - is a rare, "embryonic" tumor. He began his first round of chemotherapy on April 2 of that year and received a total of nine rounds in three-week increments during 2016, along with proton radiation therapy. The tumor responded well and he switched to a regimen of oral chemo for the first half of 2017 designed to make sure any stray bits of the tumor missed with the initial therapy didn't get a chance to regroup.
It all worked well for a while. He seemed largely symptom-free until the autumn of 2018, when it became clear that something to do with the tumor had caused inflammation that has compromised the nerve cells that control the reflexes for breathing, swallowing and chewing. He spent a month in the hospital. An MRI there showed the tumor was inactive and he went off for three months of intensive therapy, to learn to deal with his new tracheostomy and, eventually, a stomach feeding tube. Unfortunately, towards the end of that stint, he had an unexplained seizure that prompted a new MRI, which suggested the tumor might be back. He still returned home in April 2019, but a new MRI in May showed that the tumor was indeed back. We are now waiting to see how much time he has left and grateful for every minute we get.
What you need to know about Colin: He's got a stubborn streak a mile wide, would be willing to engage in light larceny if it meant more time to play on the tablet, and is getting really sick of time spent in medical facilities.