CHOP, chop… I know I’ve been lax about posting in the last month, so let’s catch up. Cooper has been doing really well for the most part, status quo if you will. At the moment he’s getting over a cold, which of course for him meant fevers and trips to clinic for fluids and IV antibiotics. That’s always stressful and worrisome yet, to date, he somehow manages to avoid admission with counts just above criteria. Can’t say enough about being able to sleep in your own bed (or rather, leaving your snotty mark in mama’s bed). He’s on the mend now with energy, appetite, and sass. Our biggest news is his upcoming visit to Children’s Hospital of Philadelphia (CHOP). We’re on a mission to save his eyes! We started this journey fearful and devastated, just begging to save his life. Our primary focus was chemo and adjusting to all that comes with it. He’s tolerating it really well and we’ve gotten a handle on most of the ill effects. But over these last eight months we’re seeing a noticeable decline in his vision. We have to remind ourselves that when this all started there were only vague signs that had us questioning his vision. It was inconsistent and we just couldn’t put our finger on it. Then the MRI revealed the optic chiasm tumor that made what we were questioning become more clear and explainable. But now its obvious that he can’t see well, especially when he’s out of his environment. He’s always been slow and deliberate, but now he’s clumsier and his eyes have started to drift away from midline. I’m not sure if its tumor related, or chemo related nerve damage. Funny how things work out sometimes…Doug was watching a webinar on optic pathway tumors and as he’s giving me the in-service on it, it was like a light bulb went off. His eyes! What have we been thinking? We’re settling into this new life like it’s all that there is. Like it’s the best we could hope for. Just happy to have a baby, whether he can see or not. But then again the light bulb: shining on the fact that that’s not good enough! Truthfully we couldn’t have possibly put any thought into this new venture any sooner than now. We needed to go through the motions and process everything systematically. Shock, devastation, grief, sadness, acceptance, hope, and then motivation. Changing any one of those steps might have caused a tailspin that could have broken any one, or all, of us. And so here we are. On a new plight to find answers and treatments that will make the life we are now confident he will have, a better one. After several separate consultations and referrals, we have landed an appointment with a world-renowned pediatric neuroopthamologist who specializes in optic pathway tumors, specifically NF1. The only downside is that he’s in PA and we’ll have to travel to him. But keeping it in perspective, we’ve been fortunate to have one of the top neurooncologist’s right in our backyard, so this is doable. We’ve gotten great advice from other families who have walked this path before us, and a piece that clicked was “if you’re gonna pick your team, pick the best; wherever they may come from”. This is what Team Coop is all about. From the very darkest beginning, a “team” embraced Cooper, and us, for this very reason. Not just to do what could be done, but to do everything that can be done. To do anything less would be a disappointment. We’re hopeful for a promising prognosis and looking forward to meeting our newest team member. 2 Corinthians: Walking by faith, and not by sight... xxo
Posted on: Sun, 14 Sep 2014 15:50:47 +0000
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