We are getting used to our routine this week. We wake up, get Caleb plus one parent to St. Jude, and the other parent runs Tyler to school and then returns to St. Jude to be with Caleb. As soon as Caleb goes to sleep for his procedure, James goes to work and I go to workout. We are getting pretty good at this and we like his early morning radiation appointment time. I hope it can stay that way for next week.
Caleb is used to not eating breakfast now, so that has become less of an issue. He is such a good kid and handles everything so well, but this entire process isn’t all sunshine and roses. It takes a toll on Caleb and us. The hour after Caleb wakes up he’s pretty irritable. In this picture I think he is crying because I didn’t put his wagon in the exact right spot in the room!? I can’t remember, but if it wasn’t that it was something equally as silly. You would have thought the world was ending. And then a minute later he is content with his iPad again. This cycle goes on over and over while he’s coming out of anesthesia.
When we finish up his appointment we go straight home to rest and eat lunch. Usually about an hour after that his energy is back up and he is ready to play. This afternoon we played on the playground and kicked the ball around. There is also this hill that Caleb loves to run up and down!
I struggled a little today with where we are at in his radiation treatments. We are about half way through the full Brain and Spine Radiation and I just can’t wait to have that finished. It’s hard knowing the side effects that could come from this and yet in order to save his life and give him the best chance at a long life it is something we have to do. He makes me so proud because he handles it so well, but I think it’s just the long term unknown side effects that bother me. It isn’t fair that he has to go through this. I’ll never understand why. All I can do is be there for him and make it as easy on him as possible. I try to keep all of these thoughts out of my mind because I know there isn’t anything I can do to change it. But still, the worry creeps in on certain days and there is nothing I can do to stop it.
We ended the night with take out from Panera. The weather is gorgeous here at night and we decided to eat outside on the patio. As we were sitting there a bunch of superheroes walked through and of course Batman was with them! You should have seen Caleb’s face. He was starstruck ha ha! He was being shy and didn’t want us to take his picture, but it was so funny to keep watching him look up at Batman, smile, and then look away all shy. The real life Super Hero was too much for my real life Super Hero HA HA!! The kids talked all night about how they met Batman.
So, as I sign off from writing this I must go fill out a field trip form for Tyler, cut out box tops that are due for the school’s Box Tops for Education program, pack his soccer stuff for practice tomorrow, and pack his snack. The funny thing about life here is that it still goes on pretty normally. Caleb may be the reason we are in Memphis, but we also have a healthy child that deserves a normal life. And so I try not to let the ball drop on anything with Tyler because he deserves the best too. They are both my world and I love them so much!
Christine you are doing an awesome job. Prayers continue for Caleb and you and your family. You all are SUPER STRONG and live each day to the fullest. God Bless You all .
Another day behind him; so awesome! Your boys are blessed to have you & James as their parents! 😊
You & James are doing such an awesome job!! Thinking & praying for you all! Rachel misses her Caleb ❤️
Christina, there are so many uncertainties, nagging worries and things totally beyond your or anyone’s control. I have deep admiration for the efforts you have already gone to, to make this bad time in your lives as pleasant and normal as possible. You are an inspiration to me and to others. Thanks for writing this. I said my prayers for you this morning.