Mother's Day seemed fitting to update on Taleah and life back home.
There is no way to catch up on everything that has happened in the last 7 months that we have been home. It has been more than wonderful in so many ways. She was able to start back in cheer, dance and gymnastics in November. She started kindergarten in the middle of March. Taleah has LOVED being a part of normal life stuff. She has caught every sickness there is (it feels that way), but we knew that was expected. That doesn't mean that I didn't freak out every time she had a fever.. I did and much more.. has to be some sort of PTSD or something. She has the attitude back in full force and amazes me with the strength she has.
It hasn't all been easy... like the kids in stores that ask if she is a boy because of her hair. Or when kids she knows treat her as if she is contagious (they would whisper or just ask me) and keep their distance. Many things that I would have to help her understand and explain that they are kids and are either curious or just don't know any better. I will say that the good has outweighed the bad by one million though!
Medically... things have been pretty good. Not perfect... but good. We have had a few scares with labs, tests, ect. It was so heart-wrenching in the moment that I could barely talk about it and for some reason I couldn't write about it.
Basically, she has labs and a visit with the Bone Marrow Team every 4 weeks. We tested the her bone marrow before day 100 and her chimerism was at 100% donor. I can't remember why they decided to test the blood chimerism, but they did and I got a call the day after Christmas. They told me that they didn't want to ruin Christmas but her labs were concerning. Her blood chimerism was at 85% (you want 100%) and obviously we don't want that 15% of her blood because her blood makes cancer cells. I was FREAKING out and they wanted us up there in the next few days to do another bone marrow aspiration to see where she was at. Typically, the bone marrow (where the blood is made) is a little lower than the blood. I was in a panic because this would mean that her bone marrow is making a comeback and killing of Tait's. I was sick, heartbroken and could hardly function. We made it up there without letting her know what was happening and I was basically told not to panic until we received the results (yeah right). I talked to many cancer moms and not many had this similar experience. The results were in and they were a little stumped but optimistic. Her bone marrow was still 100% donor. Her blood was 85% and breaking that down even more was due to her T cells (the ones that fight cancer). She still had 15% of her own T cells circulating in her blood. The plan was to test every 2-4 weeks and see if it was rising or declining. If it were declining, we would worry because her T cells obviously sucked at fighting cancer. IF the cancer were to come back she would only have 85% of the army to fight it off. I was still super nervous but felt a little better that her bone marrow was still in a good place. The explanation for the marrow to be 100% but not the blood was due to some of the cells in the blood never being killed off before the transplant. Tait's T cells are just taking a little time to kill off Taleah's T cells.
Long story short, we did lots of tests and trips to SLC but as of last week her T cells are up to 96%. Yay! That is a big step and we feel really blessed and we need it to keep rising.
We are close the the one year post transplant so we will be doing another bone marrow aspiration and lots of other testing within the next 6 weeks. I am already starting to feel a little anxious about it but I need to remember that God has a plan for us.
Honestly, today (Mother's Day) didn't go exactly how I thought I was wishing it would. Scott ended up having to work all day, the kids fought, tantrums galore, crying, time outs, extra amount of poopy diapers, disobedient moments, ect. BUT there were also Mother's Day songs, hugs, kisses, homemade gifts, yummy food, time with family, a hard working husband, and cute funny moments. It was a perfect reminder of the Mother's Day I wished for last year as we were preparing for the transplant... a day with all of my happy, healthy kids under one roof. That was just what I had and I am SO grateful. Life can be chaotic and crazy but I feel very blessed to have spent the day with my 4 littles.
I had to write about it, update our friends and family and ask for good vibes and prayer on her behalf over the next little bit. Staying positive and trying to eliminate the anxiety.
Happy Mother's Day to all of the wonderful mothers out there.