The Other Side


With only three more days until we return to Boston I have found myself soaking in a few last things on this side. Yesterday we had our last PT before the trip. When we return Claire will be receiving injections, either of the placebo or the IGF-1. While I realize that it is altogether possible to start with the placebo it still somehow changes things. It won’t change the chemistry in Claire’s brain but it is a fundamental change. It is a shift toward a medical intervention. It is also possible that Claire receives the IGF-1 and we see little change. Yes, it is possible that even with the IGF-1 there will be little change to the chemistry in Claire’s brain.

There has been a lot of discussion about our hopes for this trial. What is it that this treatment could offer Claire? While I wish I could be really optimistic and tell you that I hope to hear her thoughts straight from her mouth that is unlikely at this stage in the game. Perhaps she might be able to utter one word a little more frequently, like once a week instead of once every month or two. What is more likely is that the biggest improvement will be in breathing.

It is easy to hear about treatment and get excited and think that maybe this will unlock Claire. Maybe she will be able to walk on her own or use her hands purposefully so that she can better express herself and enjoy her life. We would all love to see that happen but I honestly don’t think we are there yet. It is hard to reconcile that we are going to the effort of 7 trips to Boston, 55 nights in hotels, 40 weeks with injections twice daily and all for what? For 15 weeks of easier breathing.

That is how desperate we get here in Rettland. What would I give for a short time of just getting to be with Claire without prompting her to breathe every few minutes, a lot. It is hard to remember that even after all of this effort, Claire is still going to be severely impaired. This research is likely to lead to other studies and with time we hope to be able to get treatment with greater impact, it is a process. It is a process that we are embarking on, knowing that once we go, we will not return the same. Life will be defined before the trial and after the trial much like it was defined by our diagnosis day.

We are stepping out onto the other side of Rettland, the side where we risk change and hope for improvement and a good response to treatment. It is a very different place than just working on therapy and I am excited to get to be going there. In 66 weeks we will be back, the trial will be done and we will return to the days of just therapy. I don’t know what we will experience in that time but I am fairly certain that when it’s over we will have all changed some way or another and that will just have to be enough.

2 thoughts on “The Other Side

  1. As I said before, I can’t begin to imagine what you are all going through, the excitement, the fears, the disruption…. And while we all hope for amazing results, both long term and for Claire and all the other families participating,so it all seems worthwhile, we must remember that whatever happens (amazing results or just nothing) it is still progress- what you are all doing will give so much information for future research. My family, for one, are very grateful for what you are doing. Here’s hoping the results are amazing! Much love x

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