We went to St. Jude yesterday for more blood work and got the news that Caleb’s ANC was up enough to start the next round of Chemo. It was at 900, which still isn’t great but is strong enough to start Cycle 2. Cycle 2 will go exactly as Cycle 1 did, so we started the oral chemo (Alisertib) at home last night.
All of the chemo drugs are the same as the first cycle, and will go in the same order. However the one nice thing about this cycle is we are able to give the oral chemo at night now instead of during the day. The first Cycle they wanted to make sure he wasn’t going to have a really bad reaction to it. But now that he took it pretty well the first time around we are able to switch the dose to night time. This is a huge advantage because it made Caleb very drowsy and silly and unsteady on his feet. Now he is able to sleep through the worst part of those side effects, and it doesn’t disrupt our day as much as before.
We did have to go to St. Jude for one quick hearing test this morning (he passed with flying colors), but other than that we were able to be home and play and pretty much have a normal day. He was really into coloring and painting today so we did some of that. We also played a few games. He helped me make dinner (Taco Soup!) and helped daddy put a shelf together. He’s pretty handy and actually knows how to use a real drill.
The biggest change lately has been Caleb’s appetite and energy level. He picks at food all day but doesn’t necessarily eat a lot at one time. He’s lost a little weight, probably about 4 pounds since we first arrived last September. I don’t want to see him lose any more so we give him whatever he feels like eating whenever he wants it! We also started mixing some protein shakes with his milk (he refuses to drink them alone for some reason). And as far as his energy goes, he feels like playing or doing an activity here and there but definitely tires out easily. We will do one thing and then he’s ready to lay down and rest. He’s been napping 2-3 hours every afternoon as well. This is great except that he isn’t always tired at his actual bed time any more, so sometimes we let him stay up a little later and he tells us when he is tired and ready for bed.
So, tonight will be his second dose of seven of this first chemo drug in the cycle. Since he can’t take it for 2 hours after he’s eaten something, and then can’t eat for another hour after, we wake him up in the middle of the night to drink his dose. He took it really well last night and went right back to sleep. I feel bad waking him up but he’s such a trooper and this is really the best thing for him so it causes the least amount of interruption in his life.
We don’t have to go back for more blood work until Tuesday, so we will continue the oral chemo at home until then. I’ll be anxious to see what his counts look like after that and if we will be on track for the next phase of this cycle. More updates soon!
Sending hugs and prayers ❤
So-o glad for the more normal night-time dosing. So glad you all can do fun things together. I think of and pray for you all every day. Keep the blogs coming whenever you can.
I am a friend of evelyns. I so admire your strength and courage. Praying for your family.