Our neuro-oncologist is a very thoughtful, kind man, who likes to talk and makes sure he always asks my daughter about her hobbies and books she is reading. When he has to give us hard information, he does so in a language that our daughter wouldn't necessarily pick up on if she is in the room. He will email us detailed information about studies and treatments. He considers the timing of scans and appointments to minimize visits and make sure we are getting the best information. At our virtual visit last Wednesday, we talked about different clinical trials and which we thought would be the best option to pursue. He explained that it can be difficult to get accepted to a trial and that we should do that while we can. It can take time waiting for wash-out periods and other things just prolongs treatment. It is much easier to stop a trial and try something local than to do it the other way. He also recommend a trial because it is a way for us to consult with people that know more than he does about research and treatments specifically for DMG.
Even though there is nothing available to us right now that looks like an amazing option, he emphasized that just because something hasn't worked well some others, it doesn't mean it wouldn't work for our daughter. Some people have had great responses to treatments unexpectedly and sometimes there isn't a clear reason why. I really appreciate his perspective and that he is able to allow us to have hope still.
My husband and I have decided that we don't want to do a trial that is invasive or will obviously cause more trauma, especially without a high probability that it will be effective. For example, there is a vaccine trial in Minnesota that was willing to consider our daughter even though she has LMD. However, it would require repeated shots in her neck, and we would need to be in Minneapolis for probably 3 weeks and then go back every month after that for more shots. It is also a Phase I study, which is testing dosing and safety. I just wasn't convinced that it was worth it.
Another study we looked into for a drug called CBL0137 is now being paused or stopped at some locations because kids were suffering from internal and external burns from treatment. I feel so badly for the parents who made the decision to enroll hoping for positive results only to have the drug do nothing but cause pain.
We don't make the decision to pursue a trial lightly, and we are trying to preserve our daughter's quality of life as much as possible. We don't want to travel extremely far from home or be away for long periods of time. So, we are going to try to be accepted into the ACT001 trial, a Phase II drug trial, either in Cincinnati or Columbus, OH. I got an email about a MyChart account being set up at Cincinnati, so that is probably where we will end up. The earliest we could enroll is July 5, which isn't that far away.
Until then, we have a full brain/spine MRI on Wednesday, and then we are probably going to Williamsburg to visit family on Friday. We weren't sure if we would go, but my daughter has been feeling so much better, and signs of herself are returning. She has been getting up early, been in a better mood, and is eating a healthy amount again (thanks steroids!). She has energy and wants to go do normal kid things and not just lay in bed. I am so thankful for that, and I hope it continues.
I have been reading this book called Living Buddha, Living Christ by Thich Nhat Hanh. It talks about the similarities between Buddhism and Christianity, but since it is written by a Buddhist monk, it has a different perspective on some Christian practices. It's a short book, but I've mostly been reading little bits before bed, so it has taken me awhile to get through. One part that I read recently that stuck with me is how our suffering is caused by our delusion of the true nature of reality. That is, "Regarding something that is impermanent as permanent...we suffer." He also writes, "If we cling to our idea of hope in the future, we might not notice the peace and joy that are available in the present moment." With that in mind, we just have to continue to do as much as we can with the time we have - stay present and thankful and know how fleeting it all is.
A Song I Listened to Multiple Times in a Row
Florence + The Machine, "The Old Religion"
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