March 10, 2024
2 Years +
3/8 (Mosaic Trisomy 8 Awareness Day) Tate has her very own unique version of this. No syndrome, all autoimmune/autoinflammatory. But both kinds are rare and today is for all the kids, adults and families affected by this life altering disease.
Today’s 1 Year Memory was a hematology appointment reflection where we learned Tate’s Lupus was back post transplant. A disappointing day. I recall the frustration of various medical opinions of what was “possible” and “not” and the exhaustion of trying to get a team unified again to get a new plan in place.
Today’s actual rheumatology appointment and labs confirmed Tates lupus is giving her trouble and acting up once again. Crummy labs are always, well…crummy. Kind of a disappointing day. Tate has been rashy and swollen with more neuro symptoms. With the addition of low counts across the board (wbc, rbc, hgb & platelets,) rheum labs gave us our answer today. Tate had an ultrasound of her ankle today too just to rule out the addition of brewing arthritis. No arthritis-yay! That leaves lupus for the swelling. I was grateful to see Dr. Moore today and only have to work with one provider. We reflected, both with a bit of emotion, how this isn’t quite where we thought we’d be when we first met her when Tate was 9 years old and had zero idea what was in front of us. But we sure are grateful for her! She’s been with us every step of the way.
Two years ago Tate was headed into her Birthday week in the ICU with terrible mucositis from her bone marrow transplant. So at least we aren’t mirroring that this week. These memories are important for us. They remind us on the hard days how much she’s already waded through.