What an emotional roller coaster we’ve been on. I find it hard to blog because I don’t even know what to blog about. I could blog about having the time to hug my kids and help them work through their tantrums and fights and go to The Museum of Life and Science without a laptop on my lap now that this gala is done. Or seeing Avery happy for the first time in as long as I can remember because I actually have time to hold and listen to him. Or I could blog about how floored and touched I am by the results of our gala. How much money we raised, how much new support we gained (one new follower is making a travel blanket for Trey and other sci-fi fans who live in NC have offered to stop and pick up groceries or toys for Trey and our family). How overwhelming it was to organize a gala to raise money for research into my child’s progressive disease, in addition to the fact that major celebrities were in attendance and I got to dress in a gown and get my hair and make up done, when usually, like right now, I’m in sweats or jeans.
Or I could blog about the fact that I’m sitting in a hospital waiting room, waiting to go back and see Trey after having had major surgery to place an intrathecal catheter, when the surgeon was just here to let us know that everything went well (when during consent they go over the fact that death and brain damage, although a small possibility, IS a possibility, and when they discuss the surgery: cutting your child in two places, putting tubing inside Trey’s spine and then connecting the tubing to the other incision location where the port is located, after tunneling through his abdomen, which apparently is incredibly painful and will require some heavy pain meds and recovery time). Or I could blog about the fact that this is only the first step in many for the trial Trey has recently qualified for. In a week and a half, Trey will have his first intrathecal dose of Elaprase, an experimental drug, with the hopes of saving his brain and allowing him to live a full and complete life.
Or I could blog about how much hope I have for this trial. Or how grateful I am to be here at UNC, as a part of this IT trial, as overwhelming as it is. If we’d had different results from Trey’s LP in August, it would have been a different story. I have friends who’ve been excluded from the trial because their kids’ LP results were too high or they had shunts or their IQ’s were out of criteria range and I don’t know how they’ve done it. Gone on. I know you have to. I felt like I wanted to die when Trey was diagnosed, but here I am, so I know life goes on and it’s up to each of us to figure out how to go on when life seems unbearable, but I’m not sure how they’ve done it. Then I have other friends whose kids’ brains are okay. And they feel bad talking to me about their kid getting diagnosed with hearing loss and fitted for hearing aids because our situation is… objectively, but not subjectively, harder or worse. So we’re somewhere in the middle.
I know people have been waiting for updates ‘from UNC.’ So here it is. We’re overwhelmed, scared, exhausted, awesome, grateful and excited. But mostly, we’re hopeful. Although today, the small picture is surgery and the fear associated with that, the big picture, this trip and trial, represents hope that Trey is going to live. A long long time.
I’m about to go back and see Trey. He will spend the night at the hospital tonight and go back to the hotel some time tomorrow. We’re going to spend the next days mellowing out, taking care of Trey and allowing him to heal before his first intrathecal dose on Tuesday, October 18. Before that, however, Trey will have his IV Elaprase infusion this Tuesday at the hospital and have a surgery check up one week today.
We love you and are grateful (beyond words) for your support.
Love Deb
