March 6, 2024
2 Years!
March is a big month for Tate. Bone Marrow Transplant-her “new” Birthday. And her Birthday is coming too, on the 13th, Tate will be 17. We spent a lot of Birthdays waiting for healing. Theres a lot of loss with that. Tate is working through some of that. Now we just celebrate. Everyday is a gift.
This week we restarted IVIG. Yesterday and today are the long 8 hour infusion days. Headache and increased pain seem to be par for the course as her body re-adjusts. I was feeling pretty low walking into north CCBD again yesterday. The high of the pain pump is wearing off as I’m reminded we’re still fighting off this misunderstood disease process. But we were greeted by a whole row of familiar, smiling faces and we instantly weren’t on our own anymore. I’ve been trying to advocate through some other medical headaches for Tate and it was just such a relief to feel validated and supported by those who know and understand Tate and care. North team we love and appreciate every single one of you so much. Thank you for all your care. You make everything better.
Monday we were at main for a hematology appointment (where we also got to hug two of our fave BMT nurses. Missed photo ops) to either get a blood or iron transfusion. Tates labs shocked even her hematologist and we chose to hold off and recheck labs. By yesterday’s infusion she’d dropped again looking more usual for Tate but that we should’ve chosen differently the day before. And today she’s all over the place. So…one thing at a time and we revisit that again once we’re through ivig. Friday is rheumatology which will likely bring more adjustments to Tate’s plan and we’re finally hoping we can drop off the projectors……stay tuned!
Thank you for all your sweet words regarding Tate’s little video. Those words were just the confidence booster she needed. We RRR! I believe we find out soon if she is chosen to fill a slot for camp! Getting her off this TPN drastically increases her odds as they can only take one TPN-ER each week. No reason she can’t be off by then!!!