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, but there's still a long haul ahead of us. 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.
That ended in June 2017. He's begun an experimental drug in September 2017 - one actually designed to fight epilepsy - that might make any recurrence of a tumor unlikely. Mostly, we focus on the fact that he seems to be doing well and try to ignore the fact that, despite all the care he's received, doctors were never able to remove all the tumor material. The hope is that it's been rendered dead by all the medicine. The fear is that it wasn't. We just push through and get regular MRIs and hope for the best. In December 2018, 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 the month in the hospital, until they confirmed that the tumor still wasn't active. He's been at a rehab facility since, learning to swallow and breathe properly. Part of that therapy has involved getting a tracheotomy and a stomach feeding tube, so we can keep him fed until he learns to swallow and cough again properly. 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 with Batman on the tablet, and is getting really sick of time spent in rehab facilities. - Niels