Post BMT day 257
+257
Todays hematology appointment and poor labs landed Tate with two units of blood for a transfusion. Tate has been struggling with low iron, low HGB and low Red blood cells. Iron isn’t absorbed well in those with gut issues. She’s not getting enough iron through food and you can’t load up tpn with it. So, a blood transfusion is the best way to give her a boost in all areas, give her body a break and hopefully help her have more awake hours during the day. The day was long. Left the house at 6:45 and returned at 2:45 in time to catch a PT appointment. Thankfully it was to measure Tate for a new, much more user friendly, comfortable and lighter wheelchair and didn’t require much on her part. She is exhausted and has been sleeping since.
Tate has been struggling with more “bone pain” especially at night and skin issues primarily with her central line dressing. We have some new solutions to try! We are now needing to run IV fluids daily. Thankful we can do that at home.
Fun stuff! A few weeks ago Tate was invited to a teen night hosted by the center for cancer and blood disorders at childrens. She was excited but it felt like a tall mountain to climb. The night was Friday, she made it and it was amazing! They took a dozen or so teens on a party bus to a restaurant and then to go bowling. Tatum met some wonderful kids and told me the best part was “everyone gets it.” Being a teen in this world is lonely. Unless you’ve lived it, it’s so hard for other teens to have any idea what daily life is like or how hard they fight just to enjoy a “normal” night out. This night….was amazing! I still tear up with gratitude that not only did Tate have this opportunity but she had fun, made some new friends and saw that she can power through. Saturday she didn’t Even get out of bed and Sunday she slept until 4:00. But Tate says, “It was so worth it!”