Well it’s been a little bit of a rough start to Cycle 4. Usually Caleb doesn’t feel the effects of the oral chemo, Alisertib, until later in the 7 days we give it to him. In the past, he will start to get very sleepy and low energy by maybe day 5. This time around he has been sleepy, cranky, and irritable from day 1. I feel so bad for him because he wants to play and have fun but he just doesn’t feel well enough. Since he is only 4 he isn’t good at explaining his emotions and tends to fight me on taking a nap so I have to trick him into it by saying “let’s watch a movie” or something like that. Whatever I do I can not say the word “Nap”. This makes Caleb very angry ha ha!
I am not sure if I have ever shown the process of giving Alisertib at home, but here is how it goes. Because the immediate effects of Alisertib make Caleb very dizzy, and sleepy, and make him seem almost “drunk” for lack of a better way to describe it, we give him the chemo at night. He has to take it on an empty stomach, so we wake him up about 11pm, have him drink the chemo, and then he goes back to sleep. He hates the way it tastes so we always have his orange juice (his drink of choice) ready in a cup so he can wash out the bad taste and go back to sleep.
Usually by the time Caleb wakes up he doesn’t feel the effects anymore because he has slept through the worst of it. But this Cycle is different. He has already been very agitated and easily angered, which isn’t Caleb’s personality at all. He only acts like that when he doesn’t feel well. It breaks my heart and I just try to comfort him and sort through his emotions without getting angry at him. I can only guess that his counts are already dropping quickly because they were already lower to begin with, but I am not sure. I do know the effects of chemo add up as the cycles go on.
He also started having accidents in his pants which isn’t like Caleb. He’s been potty trained since he was 2! He says he can’t feel it coming, and I share this not to be gross but because I try to be honest about what we are going through, and yesterday he had 3 accidents before 8:30am! I just don’t know what’s going on, but it’s adding to him being upset because it makes him upset when it happens. He knows he’s a big boy and he hates when he has an accident! I have mentioned it to his doctor so we’ll see if there is anything that can be done.
To top things off it’s raining today so Caleb cried that we can’t play outside. He also cried because at 10:30am he asked if it was time to pick up Tyler from school, and I said no not yet. And then a little while later he asked again if it was time to pick up Tyler, and I said no, not yet and he burst into tears. I said “what’s wrong?” and he said “I miss Tyler!!!” It was the sweetest thing ever! I feel like they have been especially close lately and Tyler didn’t have any school on Tuesday so they have been spending a lot of time together. I guess being with only mom all day gets boring!? HA HA!
I am hoping that the rest of the 7 days goes better. Tonight will be the 3rd dose out of 7. I hate seeing him like this, but currently he is taking a nap (yes, I won!) and I really think rest is the best thing he can do right now. I know he will feel much better when he wakes up. I know this won’t last forever, but I just hope I can comfort him through these next few days and that his body can recover by the time we go inpatient again for our next stay.
I hate that this post feels like I am complaining but I feel like if I am not honest about our bad days, it really doesn’t paint the whole picture of what goes on in our lives here. We have been very fortunate that Caleb has taken everything well so far, and I know he’ll get through this too! I would do anything to take care of him and give him everything he needs, so cranky or not, I love him and wouldn’t trade being with him for the world!
I am looking forward to our best friends Taylor and Jonathan flying in tonight. It’s always nice to have friends or family in town to take our minds off things and give the kids a distraction as well. Hopefully we can have a little fun despite what is going on with Caleb. I will update everyone on how the rest of this cycle of at home chemo goes.
We love to see all the updates & to hear how things are going, the good & not so good. I hope Caleb is feeling better ❤️. Even Superheros have an occasional off-day ❤️❤️❤️
Hope our superhero feels better!! Love, Grandma. xoxoxo
Thank you Jamie ❤️ He’s having a much better day today so far 🙏
Continue 🙏🙏 for Caleb’s well being..
You’ll help another family in the long run by posting the bad with the good. I stand in utter admiration of all of you.
I will up my prayers! ❤️‼️