Sunday, November 8, 2009

Why you're reading Kyrie's blog.

Sometimes amidst the event planning or simply flipping pages in a calendar, we can forget why we're doing this, why I'm typing posts and why you're reading them.

A couple months ago, we connected with Kate McRae, a five-year-old girl in Arizona who is battling the same kind of brain tumor that Kyrie did. Her mom keeps a Caring Bridge journal and there was a passage recently that brought me back in half a heartbeat to Kyrie's battle. This situation shouldn't happen—ever:

Frustrating night.. I guess that is to be expected right now. Kate's tummy was hurting some tonight. Immediately after I gave her chemotherapy she threw it up, along with her NG tube. She kept crying, knowing what that meant, another NG tube put down. I called the Dr on call, they agreed to redose her chemo and for me to put back down her tube. So after giving her tummy a little break. We went to put her tube back in. It was heartbreaking. She kept screaming "No, please, No!" She then started frantically saying "Please Jesus, heal me quick so mom doesn't have to do this to me, please Jesus". Over and over she screamed it. I was ready to scream with her but instead put the tube up her nose and down her throat. It makes them feel like they are choking. Not how you want to make your child feel. However, we know it is better than the alternative. So we just do it. Heart in throat.
Thankfully, she is now alseep. her tube is in, chemo stayed down this time, and all of her nightly medications are in. Her nightly feedings are now running.

This is just a snippet, one bit of one millisecond of the battle when you're fighting your baby's brain tumor.

And this passage, too. While the world is busying about making their holiday plans, there are families who cannot:

Reality is, we could be up here for Christmas, which means, no Christmas with all of the kids together. And Kate's birthday is the day after. The thought is so very discouraging. How could we not enjoy such a special holiday together. 2 kids at home, and one in the hospital going through an extremely tough and rigorous chemotherapy? No family breakfast, no opening stockings together, no traditions, no Christmas with the 5 of us. So the more we thought about it, the more we realized, we may get the chance to be home, we just don't know. But the reality is, there will be families up here. On the oncology floor, away from the traditions, their immediate families and extended families, fighting for the lives of their children. Some their resources spent to get their children treatment. Others deciding which children to spend Christmas with. Others wondering if this will be their last Christmas together. The thought never ceases to bring me to tears.

It's this reality that pushes us forward in the work we're doing. This is why we're hosting the fundraiser Thursday; this is why we launch items on eBay; this is why Frosty and Elf Rita go to Wesley Hospital each Christmas. This is why I'm here typing and you're here reading.

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