Living Between the Scans

My daughter had her first MRI today after starting ACT001. We've been worried because she's been vomiting more. The four of us went to Pigeon Forge over the weekend. It is halfway between home and Cincinnati, and we thought it would be fun to do something different before all of the appointments. We came prepared with safe foods and didn't go out to eat much. Yet, she still threw up almost every meal or just refused to eat certain things. It is really nerve-wracking because that is the first symptom she has whenever there is swelling or tumor progression. But, she also has to take so many pills each day. She takes 3 capsules of ACT001 twice a day (6 total), pepcid twice a day, dexamethasone in the morning, and zofran in the morning. Plus on the weekends, she take bactrim twice a day to prevent bacterial pneumonia due to her low white blood cell counts. The bactrim in particular triggers her gag reflex and makes her feel bad. So, is all that leading to more vomiting? Or is it something else? Everytime it happens, we clean up and file it away in our mental list of concerns. 

As far as imaging goes, everything is stable in her brain and her spine. Some things are measuring slightly smaller, but they cautioned us that it could be just differences in the imaging rather than any real decrease. There is one new spot in her thalamus that shows contrast, but it is really small and they don't know if it is cancer or just changes due to everything else her brain has gone through. So we'll just watch it for the next scan. I think that is really as good as we could hope for. 

From hearing from other parents, I know that this doesn't mean the cancer is magically going away. It doesn't mean that this medication is going to give us long-term results. I know people get stable scans and then in a few weeks, their kid has a significant decline. This cancer is diffuse and it doesn't always show up on imaging. So, I hold the results cautiously. It means that maybe the medication is helping. It means that at least things aren't obviously worse right now. It means we will continue on the trial for another month or hopefully two until the next scan. Don't get me wrong, hope is always there, but I have to temper it. I feel like I am always bracing myself for the next drop off, and I have to remind myself to focus on the present. 

In the present, my daughter sometimes throws up her food. But, she is also going to school, wanting to join every club she possibly can, reading books, dancing, telling jokes, and being a kid. There is so much good around us, and I have to focus on that. 

My daughter and husband will come back from Cincinnati tomorrow. We'll go to work and school. We'll take it all a day at a time until the next appointment. We'll continue living as much as we can while we can, and I guess that's all any of us can do. 

A Song that Feels like a Mental Balm

Lane 8, Kasbo, BJOERN, "World is Mine"