The MRI affirmed our worst fears today. The tumor is still growing in Charlotte's head despite chemo and radiation. The more urgent problem is that the tumor is once again blocking flow of the ventricles. This is causing hydrocephalus which, in turn, is causing swelling in her brain. This is the source of Charlotte's head pain and the tremors are probably a result of increased tumor growth.
We have few options. One option is a shunt which will, at most, buy us some quality time with her and ease some pain. There are very few chemo options. Most of the more aggressive options can not be done with a shunt or can not be done for weeks after a shunt has been placed. Anything that is left has never been attempted in someone Charlotte's age so it's basically a crap shoot. All the Dr.s and Nurses on the team are communicating back and forth including the MD Anderson team.
Both of us agree that we want Charlotte to be in as little pain and experience as few side effects from any medications as possible. We also feel the urgent need to make sure she gets to Disney World on her Make-A-Wish trip as soon as possible so whatever we decide to do, it will be toward making her as comfortable and "functional" as possible so that she can actually enjoy it.
This has been a very painful day. We have placed everything else in our lives on hold for at least a few days. As far as I know, Romp n' Roll is covered. We have a stocked pantry and we are at home. Our plan for the next few days is to spend some quality time together as a family and determine our next step. We ask that you respect our need for privacy at this time. You are welcome to call, send an email, or sign the guestbook. Please know that we probably will not answer the phone or reply right now.
We can't tell you how sad we are at the moment and we know many of you will be hurting as well. Charlotte is a very special child and has touched so many lives. We know you might be feeling helpless and are desperate to do something, anything, to help us. Your notes here on Caringbridge and Facebook are very much appreciated but the main thing you all can do is take some of that positive energy you've been aiming at us and turn it on each other. Hug your children and love each other.
We love you,
Roger, Rachel, and Charlotte
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