Reading the title is still mind boggling for me. For the past year, I have been researching hydrocephalus in MPS, researching symptoms, interviewing mums whose kids developed hydrocephalus as to what their symptoms were and how they developed, going to doctor and osteopath appointments to try and gain some insight into what Trey’s pressure might be. We have been in line for the trial, then were taken out of line when the criteria was broadened and had to wait to find out if we were back in line again. Our first trip for the LP was postponed when the child in front of Trey qualified and randomized to drug (Trey was back up). A hold on the trial postponed our second trip.
Last Friday, at the end of the work day, I did a little smile. We were leaving Sunday for UNC. The EST business day was done. No one had called to postpone our trip again. Then it was up to me. The only thing stopping us now was if Trey got sick. No pressure. I had 8 travel size Purell hand sanitizers with me (as well as 3 doses a day of echinacea and goldenseal). The people around us on the plane must have thought I was crazy. I was, but for good reason. On each plane ride and then in the rental car and at the hotel, I spent 15 minutes sanitizing. Trey learned how to wash his hands for a full minute and then step back into the middle of the bathroom with is hands up, so as not to touch anything.
All the doctors showed up for their appointments (although one was a close call): blood draws, EKG, consent, vitals every day, vision tests, audiology, IQ, fine and gross motor testing, neurosurgery, pre-care with a nurse to go over Trey’s history before going under general anesthetic, echocardiogram, and pulmonology). As Trey went back for his procedure yesterday (which involved: bronchoscopy, MRI of brain and spine, ABR and LP all of which lasted 4 hours), I just couldn’t believe we made it. He was going to get his LP! I’m still in shock that we made it to the appointment, let alone that he qualified (LP 15.5) and randomized to drug. That will take time.
I am still nauseous and shaking this morning. In terms of anticipation, the only result that was bigger was Trey’s IQ test last summer. There was similar preparation, except instead of keeping him healthy, I had to keep him healthy and as smart as possible (which involved lots of tutors and no TV). That result was bigger than this. If Trey’s IQ had been fine, Trey would have definitely lived a much longer time and he wouldn’t have needed this trial. It took me weeks to recover from the news last summer that Trey’s brain is affected.
This was the second biggest testing day of our life. Not getting into the trial would have meant watching Trey decline. Getting in means that we will likely at least see a stop of progression of brain (and other) disease, if not reversal. It also means Trey is getting all the possible treatment available.
Like I said, it’s still sinking in. Now that he’s in, I get to think about the ‘easy’ stuff, like how I’m going to feed Trey organic food when he’s in a hospital for 4 days with no oven, stove, or toaster and less easy stuff, but still comparatively a cake walk, port surgery… A doctor tunneling through from Trey’s back where the catheter will go, to his abdomen, where the port will go. Or how I’m going to walk Trey through going to sleep every month (especially after he puked for over 24 hours hours after the last one, through security at the airport, on the plane…). But then I come back to easy street. For all these thoughts are thoughts from easy street. They are the thoughts I get to have, as a friend put it, from the rear view mirror. Nothing like perspective to bring in gratitude.
Do you know this is the first time we have not been on hold since Trey’s diagnosis? For four and a half years we lived waiting to find out if Trey’s brain was affected. Once we realized it was affected, we waited to find out if Trey would get into this trial. The hold has been lifted, along with a huge weight off my shoulders.
I am overwhelmed by everyone’s support. Today I do not feel alone with a rare disease. I feel surrounded by a huge and massive community. It is an amzing feeling. Thank you.
I do want to make one more comment. As I sit here writing, I think of Gayle, Ryan’s mum. We didn’t always talk, but I know she read this blog to find out what is going on. She loved Trey so so much. She passed away in June and while I write, she is in my thoughts. She is what made me believe we could do this. The day she died, something happened. I felt Trey would qualify. It was like a switch in my thinking. I was no longer scared, but excited to go to UNC. And that got me through this week. Thank you Gayle. We miss you and know you are with us sharing our amazing news.