October 10, 2018 Update from Shasta
This update is long overdue and I apologize for the silence...
Here’s a quick (ok not quick at all) synopsis of the going’s on the past month.
1. Mia and I have been traveling back and forth between home and SF about every 1-2 weeks for blood tests and doctor appointments. These times are sweet and priceless and even though they are a disruption to our daily lives, they are trips that I cherish.
2. Her Tacrolimus (one of three immunosuppressants she’s on for life) levels seem to be fairly well dialed in and we are starting to taper back on the dose! This is huge because her kidney is sensitive to this medicine and it will begin to function even better once we can lower the dose.
3. She is off ALL blood pressure medications!
4. She started back to school at Achieve Charter High School a couple of weeks ago and is quickly adjusting and building up the stamina to attend all day.
5. We were able to participate as a family in the March For Mia that Achieve Charter School hosted. Our amazing schools raised $7,500 for COTA in honor of Mia to assist with transplant-related expenses.
6. Mia went back to dance (with strict limits) yesterday and came home tired and GLOWING with happiness!
7. She and I will once again be traveling to the city tomorrow for a full day of Cellcept (another immunosuppressant) testing, labs and appointments. I’m sure we’ll sneak in some fun, cuz that’s just how we roll!
8. Last, but definitely not least, because every happy story seems to have a little bit of a cloud, Mia is experiencing what appears to be some bone marrow suppression. In other words, her bone marrow is “sleepy” and isn’t producing the amount of red and white blood cells that it should be. If her counts continue to drop the way they have been, she will be considered neutropenic (zero immune system) in a matter of weeks. This is obviously not a great thing since getting sick while neutropenic can be life-threatening and means she will have to once again, stop school and dance. :-( The doctors feel fairly certain that the bone marrow suppression is caused by two medications that she takes on a daily basis, but hesitate to stop those medications because they are protecting her from very serious viruses and bacterial infections...kind of a damned if I do, damned if I don’t situation...so prayer warriors, hit your knees cuz we need that bone marrow to WAKE UP! We will know more on Thursday.