Monday, April 22, 2013

Three years ago today, while I held my 16 month old baby boy in my arms, I called my parents (who live out of state) and tearfully told them they had to get here fast because I knew my son was going to die. He had been sick for weeks, unable to eat much of anything, and throwing up what little bit he managed to get down. He had lost weight, and had gone from sweet and happy, to inconsolably fussy, to weak and lethargic. There was an emergency MRI scheduled for that afternoon, because a pediatric ophthalmologist was concerned about something he'd seen during a follow-up exam the day before. Hours after calling my parents, after the excruciating wait for the MRI to be completed, we heard the words, "There is a large tumor in your son's brain." Life as we knew it ended that day three years ago, and it would never be the same again.

Today I proudly watched my now four year old son enthusiastically participate in his OT session, where he continues to make incredible progress. It has been a long, hard journey since that day three years ago. There have been surgeries, long hospital stays with lots of chemo, a stem cell rescue with life threatening complications, two relapses, more chemo, gamma knife radiation, a drug trial, and radiation to his whole brain and spine. There has been three years of OT, PT, and ST. The very first goal was for him to turn his head to the right again. Since then, he has learned to sit, stand, and walk again. He has learned to swallow, eat, and talk again. He is still gaining strength, coordination, and motor planning skills. He has vision and hearing problems. He is brave, and strong. He is sweet, loving, and funny. He is happy, and joyful. He is inspiring. He is one of the most amazing children you could ever meet. He is Collin, my hero. ❤

Thursday, April 11, 2013

Thursday, April 11, 2013

Well, Monday Collin had his routine every-three-month MRI. As usual, I was a nervous wreck in the days leading up to it, because I know things can change in a heart-stopping instant, no matter how well Collin seems to be doing. Thankfully, everything looks good-there is no evidence of any new disease!! So, we've been given three more months to live "normally" until we go through the worry again. I swear, every MRI takes a year off my life!

While we were discussing the results with Collin's oncologist, we were talking about how medulloblastoma behaves differently in different people. Sometimes it goes away after chemo and never comes back, and never needs any additional treatment such as radiation. Sometimes it continues to grow even while being fought with heavy chemo and radiation. In Collin's case, historically it responds very well to chemo, but comes back when the chemo stops. That was the reason we finally had to do the radiation. Collin has been on maintenance chemo since shortly after finishing radiation, but eventually he'll have to stop taking it. I worry about what will happen when he stops taking the chemo; it will be a while before we know if the radiation worked to get rid of the cancer once and for all. So unfortunately I think scan time will become even more nerve wracking in the future.

Last Friday, Collin had his latest hearing test. His hearing has not changed since the last audiogram six months ago; the hearing in his left ear is normal, and the hearing loss in his right ear remains limited to high frequency sounds. We've known for a while that Collin would need a hearing aid for his right ear, and the audiologist decided it was time to start the process. It takes some time to get the hearing aid made, and by starting the process now, Collin will be used to it by the time he starts school, which is where he'll need the hearing aid most. A mold was made of Collin's right ear, and he got to choose the color the mold will be made in, and the color of the hearing aid. He chose green for the mold, and bright blue for the hearing aid! In Pennsylvania, before you can get a hearing aid, you need to be cleared by an Ear, Nose, & Throat doctor, so Collin has that appointment toward the end of May. Then he'll get the hearing aid the following week. I was a little bummed thinking about the hearing aid now becoming a reality; it's something else for Collin to have to get used to, something else that I fear will make him a target of bullying in school, etc. But Monday helped put things back into perspective for me. I remember in 2010 thinking that even if chemo completely robbed Collin of his hearing, we could live with that if it meant he was still alive. The anxiety I felt about the MRI, and the relief that I felt when we were told it was clear, helped remind me that in the scheme of things, a hearing aid is no big deal. I can't control the things that Collin has to deal with, but I can control how I choose to handle them, and therefore hopefully how Collin will handle them.