Where We’re At
I’ve been bad about updating the blog with the latest news. Here’s a wrap up of what’s been going on:
August 20: Ana started Rapamune and her tacro was reduced (Rapa and tacro are both anti-rejection drugs). She had bad stomach pain which lasted for ten minutes and prompted me to email Dr. Yamashiro, but it passed and didn’t return so hopefully it as just coincidental and not related to the drug.
August 25: Ana’s mouth began to hurt and she showed me sore in her cheek that was very uncomfortable. Painful mouth, throat and stomach sores are a side effect of Rapamune and can get bad enough that the drug needs to be stopped. Dr. Martinez prescribed magic mouthwash (a topical pain reliever) which helped initially, but new sores developed and these were much more painful.
August 26: I emailed a physician who wrote a study about IMT and various treatments and she emailed me back. This was exciting but nothing much came of it. Dr. Yamashiro said he was going to call this physician and ask about a specific thing she recommend he test for to see if it could possibly identify more treatment options.
August 31: Ana’s labs came back…not great. Her rapa level was too high and her blood counts were off. They reduced the rapa dose. Dr. Yamashiro was (meanwhile) trying to get Ana’s new oral chemo drug, Inlyta, approved by insurance so he could switch her off of Votrient (the drug that’s turning her hair white). The insurance company denied it and so he appealed.
September 1: Inlyta was finally approved and we scheduled it for delivery. Also, I began blogging for he Huffington Post.
September 5: The Inlyta was delivered and Ana started it, officially stopping Votrient. At this point she was still on Rapamune and a small dose of tacro in the evening.
September 7: The pain from Ana’s mouth sores became too much for her and Dr. Martinez stopped the medication and put her back on tacrolimus. Ana tried to endure the pain, but it was getting difficult to eat and talk. She was worried about being able to sing at her upcoming Rock Academy performance, and also her throat had started hurting and she was afraid a sore was developing there. Within 24 hours of being off the drug, her mouth felt better.
September 8 – Ana started her freshman year of high school!
Here is my full entry from this morning, September 9th:
You win some you lose some: part 2…
Ana started high school yesterday – a huge milestone for so many reasons – but she came home exhausted and feeling ill. She’d been feeling “off” for a few days and complained of a sore throat on Saturday, but I’d attributed this to the rapamune. Although she got through school, she said at one point she was so nauseous she wanted to throw up, and during one of her classes she nearly fell asleep (this could be blamed on waking up so early, I suppose – and the heat). When she got home, she slept for a couple of hours and I had a hard time waking her for dinner.
This is a red flag with Ana. It means she’s got a fever or coming down with something. It’s not always easy to tell that someone on immunosuppression is sick so I’ve learned to look for other clues. Ana always looks amazing and healthy. As you’ve seen with recent photos, she appears to have almost a “glow” about her. So it’s easy to miss the early signs of illness, even for me. She came down after her nap and I noticed she was sneezing a lot – I counted her sneezes – at least 5 in under an hour. I called Jim who was at the store and told him to buy a thermometer as I couldn’t find a single one in the house…
Luckily Dr. Martinez happened to call last night around 9. She wanted to follow-up on the question I had about Rapamune (e.g., “why rapa compared to tacro?”) I told her I was worried about Ana and explained what was happening and she told me to keep her home from school today if her throat hurt again. She reminded me that although Ana looks healthy – she is not. On top of the immunosuppression, she has tumors in her lungs and her body is under a lot of stress. Her blood counts were off on her last labs (some too high, some too low). Dr. M. asked me if Ana wanted to go to school – she seemed to be suggesting that she be home schooled (or at least, we keep her home and get her a tutor). She said, “Why push her? you don’t need to push her.”
But Ana wants to go to school. She wants to push herself. Even so, it was a wake up call and also hurts my heart a lot. I will take her to the pediatrician today and I’ve already begun the process of working with the school so that I know all her teachers are fully aware of Ana’s precarious health (she has a 504 in place but I don’t get the sense that’s super helpful unless I make everyone aware of it). I want to remove the stress of Ana feeling she has to go in when she doesn’t feel well and that means ensuring I get her work to her when she’s home. As long as that happens, I think she can continue with school as usual, staying home when she’s ill as was the case at High Meadow. I will even pay for a tutor if she needs one because this kid stresses out when she is behind on her work and she finds math particularly challenging.
I want what Ana wants – for her to attend high school normally, to get through it, to graduate. But I also don’t want her to end up in the hospital because she pushed herself too hard. I need to help her navigate through this obstacle course in a way that honors both of these challenging (often conflicting) desires. Sometimes it’s so hard. Ugh.