We had another count check today, and unfortunately Caleb’s counts have still not increased enough for us to start Cycle 5. In a way we were surprised because we really thought that his numbers would be higher by now, but in a way we weren’t surprised because he has been so tired the last couple days.
We usually do a lot of activities throughout the day, play outside, etc, however the last few days Caleb hasn’t felt like doing much. He gets up to play for a couple minutes and then either complains that his stomach hurts or just gets tired and needs to lay down. It does make me sad to see that it has gotten to this point, but I don’t hate the quiet time that we get to spend together. When he isn’t feeling well I bring him snacks in bed and put on a movie and completely spoil him. And I’m fine with that because some day he won’t be little and I won’t get to do that anymore, so I enjoy our time with just the two of us hanging out.
Caleb is still eating well, and that is a very good thing! Funny story… no matter what time of day our appointments are at St. Jude, Caleb always has a bowl of Frosted Flakes (AKA Tiger Cereal) with bananas and strawberries in it. He has even learned to cut all his own fruit. It’s his absolute favorite for breakfast or lunch, whenever we happen to be there!
I think Caleb was just as excited to go home with no appointments for the weekend as we were, and he got in a crazy silly mood right before we left today. He was making everyone in the Starbucks line smile. But that’s our Caleb… always making people laugh! So many people tell me he has one of the best laughs they have ever heard and I would have to agree!
We did make it to Tyler’s T-ball game as a family of 4 tonight! We probably shouldn’t have let Caleb go out but honestly I was just fed up with our family being split up, and Caleb always having to stay home. So we went and it was really nice to be out of the house for a little while. It was really hot outside though, so about half way through the game James took Caleb back to the air conditioned car to sit and watch the rest of the game. The heat just zapped Caleb’s energy. I can’t wait until we are past all of this and he is playing like a normal kid again!
We are waiting until Tuesday and then we will do another blood draw to check Caleb’s counts again. Hopefully they will be up, as every day that goes by puts us farther away from going home. We *loosely* calculated the schedule and it puts us going home about mid-late July now. But things change on a daily basis so there are no guarantees. When I miss home I day dream about floating in my pool with a cold drink in my hand, sleeping in our King size bed that we miss so much, or watching the kids play while relaxing on the front porch swing. I know that we will get there… some day… but for now we wait and hope for better news on Tuesday!
I want a pair of those green sunglasses. They are just the coolest things ever. I hope your family has a wonderful week-end together. Prayers for strength, patience and good numbers Tuesday.
The happiest day will be when you all set your feet back in Florida…. Our journey continues with all the incredible prayers and wonderful people in our lives that have always been there for us .. God is next to us every day…. ❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻😇