We have been stuck in the same cycle of one day off with no appointments, and then the next day going into St. Jude to have Caleb’s blood counts checked. So this is our life right now. We’ve been keeping ourselves entertained at home on our “off” days. James found the patience (and it took a lot!) to teach them how to play “Connect 4” and now they want to play all the time! Their Grebbie sent them several kinds of popsicle molds and now we spend all day watching the freezer waiting on the latest batch to freeze. Caleb likes to put a “surprise” in each one (skittles).
Saturday was a pretty rare and awesome day for me because I got to have a lunch date with my mom and a dinner/movie date with James. Times like that are far and few between so I felt pretty lucky that I got to go out for 2 kid-free meals in one day!!! My mom and I went to a Taco place called Babalu. They put bacon in their tableside guac, need I say more!? The food and drinks were delicious! And we followed that up with a pedicure.
Then mom switched with James and she watched the kids while James and I went out for Sushi and went to a movie. The kids had a blast with Grandma as always. They played and made home made pizzas for dinner. It was her last night in town, so I know she was soaking up every second with them. Tyler is going to miss all of his sleepovers at the hotel with her. We were joking that we will have to book nights at the Holiday Inn every once in a while just so he can use their cool pancake maker.
Sunday we had to go to St. Jude for Caleb’s blood draw. So now we are getting pretty familiar with the process and it goes like this… We show up at our appointment time and they draw blood. We wait 45 min to an hour to find out those results. The results will determine whether or not he needs a transfusion. So today we were really hoping that after waiting an hour for the results his counts would have recovered enough that he wouldn’t need any more transfusions for this round. However, even though his Hgb came up a little it still wasn’t in normal range. His platelets also dropped significantly from Friday and so he needed both a blood and platelet transfusion today.
The official Numbers were:
Hgb: 6.9 (up from 6.6 on Friday)
Platelet Count: 14 (down from 76 on Friday)
ANC: Still 0
James and I were both a little surprised just because we feel like Caleb still looks so good. He still plays with a decent amount of energy. He eats a decent amount of food throughout the day, although that has dwindled the past couple days. He hasn’t thrown up and never even tells us he feels like he’s going to. So all in all we were hoping that his counts would have recovered by now, but I guess it’s impossible to tell just from looking at him. This is our first experience with all of this so we really don’t know how long it will take for his counts to recover. We can only take each day at a time.
Grandma had come with us today to St. Jude and had to head to the airport from there. The goodbyes were hard from all of us. Every time family leaves it gets harder and harder. Everyone is so helpful when they are here that we really miss them when they leave!
James and Caleb spent the rest of the day at St. Jude. The Infusion process is very slow. I think it took about an hour and a half for platelets and 3 to 4 hours for the blood. Our blood draw appointment was at 10:30am and I picked James and Caleb back up about 6:30pm. It’s a long day spent laying in a hospital bed for Caleb. He’s so patient and just watches movies and hangs out. We are so blessed that he is so good with all of this. I was very sad because today was a beautiful sunny day in the 60’s (very rare for this time of year in Memphis) and Caleb had to spend it inside a dark room in a bed. I know it’s not forever but I just hate that things have to be this way sometimes. The nurse did bring him several popsicles though, so he wasn’t all that upset about it! ha ha!
I spent the day with Tyler since it’s not fair to make Tyler spend his day in a hospital. Tyler has had several “daddy” date days so today was my day with him. We spent a little time hanging out at home (playing his new favorite game Connect 4) and then I took him to Walmart to pick out some new shoes and a real volleyball. He’s been so interested in learning volleyball, but all we have had to play with is a bouncy ball. So today I bought him an actual volleyball. We came home and played and while we were outside he spotted more dandelions. So, of course we had to make another wish. I think we all know what I wished for, and I am pretty sure Tyler wished for the same thing.
By the time we got home from picking James and Caleb up from St. Jude it was late. Thank goodness we started our meal delivery service this week. Way back in September when all of this started many kind people contributed to a special fund that was for meals. We always intended to use that money to have fresh, healthy meals instead of eating out all of the time. Our lives have finally slowed down enough for us to be able to take advantage of that so we tried a delivery service called “Freshly”. They come in individual portions and all you have to do is microwave them. Let me tell you the food was delicious!! It seriously tasted like a home cooked meal and both of our meals were ready to eat in about 5 minutes. At the end of a long day when we would have just gotten take out or eaten junk food this was a wonderful thing to have!
So, tomorrow Caleb has no appointments again. We will re-check his blood counts on Tuesday, with the same possibility of more transfusions. I pray there won’t be any more this cycle, but we will see. Tyler also goes back to school tomorrow. He’s been off for winter break. We have had so much fun, but I know he loves his school and he needs to be in a normal routine so I am looking forward to him going back. I will update everyone again on Tuesday!
I admire you and James. I know I’ve said it before. You just keep giving us reasons. Our prayers continue.
Thank you for keeping us updated on Super Hero Celeb’s progress. My prayers continue for him, and for you and your amazing family.