Tonight I am writing this blog post from a hospital room at St. Jude. Caleb’s ANC rose significantly from Tuesday. It went from 400 to 1500 in just a few days! That’s normal range!! It hasn’t been that high in a while so I was thrilled.
Leading up to today we have enjoyed some time at home with Grebbie and Grandpa. The weather got bitter cold for a few days! When I woke up to take Tyler to school one morning the temp was 25 degrees, and my water bottle that I had in my car had ice in it! I know the majority of the country is dealing with much worse right now, but for a Florida girl, THAT’S COLD!!!
On those really cold days, and with Caleb’s immune system too low to go anywhere, we did our normal cycle of activities in the house… craft projects, cooking, his learning games on the TV and iPad, reading books, watching movies, and playing games. I enjoy every moment with him even though being inside all day is hard sometimes.
Luckily it has warmed up slowly each day and finally was nice enough for us to get outside to play! It’s nice to be able to add some variety to our day by getting outside and the sunshine felt so good!
That all lead to this morning when it was time to go in for Caleb’s blood draw. I was so happy when his ANC was 1500! However his Hgb was still under 8, and to meet the parameters of the inpatient chemo it has to be 8 or above. Since it didn’t recover on it’s own they ordered a blood transfusion. It was not a large amount today, but transfusions take so much time. You have to wait an hour to an hour and a half for them to order the blood and get it to the Med Room. Then you have the actual transfusion time, which today was about 2 hours. And then lastly we had to wait 30 min so he could get his blood drawn again to check Hgb levels. I was so glad Grebbie joined us today to help me entertain him and to keep me company. I don’t mind going to appointments alone, but when the day ends up long it’s nice to have someone there to give you breaks and also to talk to. Caleb also loves playing with his Grebbie! At the end his Hgb rose to 9.6 so we were good to go!
From the moment we went home to pack our bags Caleb was sooooo excited to go to the hospital to sleep. Everything is an adventure to him, and I’m so thankful he sees life like that. He couldn’t wait to get to his room and play and watch a movie. Even though it was late we let him play a little bit, and then we got him into his jammies and in bed. He was so worn out from all the excitement that he fell asleep within minutes. While inpatient stays aren’t my favorite thing, it would be 100 times worse if Caleb was upset by them. But since he’s not I’m trying to be positive about it and focus on playing with him, passing the time, and getting home as soon as we can.
Caleb is currently sound asleep as I write this. He is hooked up to hydration and will start chemo in the morning. He has to be on hydration for at least 6 hours before they will start the first Chemo dose. Tyler is with Grandpa and Grebbie. I am bummed this inpatient stay ended up over a weekend, but Grandpa and Grebbie have some fun things planned for Tyler.
I will update more as we go along. Oddly enough the inpatient stay isn’t really the rough part of treatment because it takes 7-10 days for his counts to completely drop, and then start to recover again. So when we are here he is actually a lot of fun, and loves to play and make all the nurses laugh. But last cycle when we went home was when things got a little harder, and he slept a lot, and ended up with the fever that we had to come back in for. I do not want that to happen this time around, so I am praying that we can keep him healthy and entertained this whole cycle.
It was not easy to be delayed a couple days because I am so anxious for each cycle to go as quickly as possible, but I am grateful for the extra time I got to spend just hanging out with him. He has been eating non stop and gained some weight back the past few days. He is starting this part of the cycle even stronger than last time. His ANC was only 600 when we were admitted last cycle, and now it’s 1500. Unexpected changes to our plans are hard, but ultimately the extra time ended up being a good thing and I hope it will carry him through the cycle stronger than last time. I will update everyone again soon on how it’s going!