2/12/19 Lansoprazole Problem

We solved the mystery of the noon pain. It was Lansoprazole (Prevacid.) I’m not completely sure what it’s job was (but I know it’s related to the fact that she was on steroids.) I removed it yesterday morning and she hasn’t been struck by an episode of pain again (so she missed two episodes.) I pray this was the culprit, what a blessing, that it was a MED!! And one that can be removed. That is so much easier than many alternatives that we were looking at. So, why now? When she was on this medicine many months. I am going to ask more about this tomorrow, when I meet with BMT and endocrinology. But, I think it was to do with how well she is absorbing now. Remember, for a long time, her gut could not absorb well at all. It has slowly been getting better (think, snail’s pace) and now, we know it is good. We have seen this with other meds we test levels on. So, perhaps, now that she is actually absorbing Lansolprazole, we are learning that it just doesn’t work for her. In my mind, THIS is the silver lining… she is absorbing!
Anyone who knows Reese well knows that she is my little academic. She LOVES to learn and she has laser focus, like her dad. I enjoyed teaching her for four years. This went away. I knew who she was, I could see it through the fog, and slowly (again, snails) it has returned. There was a time, midsummer, that she could not recognize the letter R. Today, she wrote a letter to our president and congress. A thank you for putting PEDIATRIC CANCER RESEARCH on the agenda, in the State of the Union, for the first time ever. This matters to the 15,000+ kids diagnosed last year, and those families who are yet to be hit by this unimaginable horror. In my pediatric cancer world, there is a great buzz about this. We were encouraged to write, to bring more awareness through our numbers, to be heard. It’s not about political affiliation, it’s about pediatric cancer research. My little survivor was proud to write her thank you. Herself. After that she went to craft time at the Family House and carefully and meticulously colored in this mask (below.) I love to watch her be… Reese.
I mentioned last week that we have a FINAL appointment with our UCSF team scheduled for March 20. That is almost a year from when we first arrived in San Francisco, on April 15. I haven’t elaborated on this yet because, while we are thrilled (!!!), I have no idea HOW we are going to get her home, yet. Flying commercial is too dangerous because of her impaired immune system (and don’t get me started on anti-vaxxers and the measles mess that threatens my daughter. One day I will get into it, not now.) It is also not safe to drive because there are huge stretches between children’s hospitals. I will keep you updated as this story unfolds. For now, we are just celebrating the thought of our yellow house and enjoying the idea that A HOME is on the horizon.

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