10:30 pm: Harvey’s morning appointment went well. His ANC level rose to .500, up from Wednesday’s reading of .160. An ANC of .750 is required to continue his treatment and his medical team is confident he’ll continue trending up over the weekend and will reach .750 by Monday. Therefore, his next procedure is scheduled for 7:30 am Monday morning and will officially mark the beginning of the consolidation stage of his treatment. We are going to spend all the time we can with him this weekend. The strong chemotherapy this next round will surely rob him of his energy and strength, which we’ve been enjoying since arrival back home.
Harvey is starting to become accustomed to our routine of frequent clinic visits, although he still would prefer not to go at all. We’re also getting better at knowing and remembering what to bring with us everywhere we go as each trip feels more like a venture. Top of the list is his medicine box. It’s essential we always have this with us. A close second is definitely a puke bucket. During our car ride this morning, Harvey went from smiling and laughing to leaning over his bucket in an instant. The poor kid is always on guard, waiting for the next round of nausea to kick in. It’s going to get much worse beginning next week, unfortunately.
Families that have dealt with their own medical issues and disabilities can no doubt attest to the inherent difficultly baked into their reality. The amount of time, effort, and energy that’s needed is simply overwhelming at times. What I don’t believe gets enough attention is the fact that there are other battles, extra processes that wear you down, behind the scenes. Maybe this is by design? Since Harvey’s diagnosis, I’ve spent no less than 15 cumulative hours on the phone with various companies, agencies, and entities, including our medical insurance, Minnesota DHS, TEFRA, CEHI, the State Medical Review Team… I have over 3 years experience working with each of them previously due to our twin’s autism diagnosis. Now, in my time of need for answers, coverage questions, and navigating solutions, I still find myself having to dedicate time (much of it wasted on hold) as a middle man between them all. It’s absolutely maddening. I’m only sharing this to highlight the fact that this is a problem for so many. We are in a good position to fight this fight, but there are many families that are not. And even I’m in exhausted awe of how difficult it (purposely?) is! There truly needs to be changes to the system. It shouldn’t be this hard. I’ll leave you with the most recent letter of rejection from our insurance for one of Harvey’s medications needed to help with his JAK2 gene mutation. I’m not worried – there are many options left to get this medication in our case. But let this serve as a testament to what “death by a thousand cuts” looks like for families in our same situation. It’s a safe assumption that the “All” in Alluma doesn’t stand for acute lymphoblastic leukemia.
Have a great weekend! More updates to come on Monday.