Today marks the 7th day of the first chemo cycle which means today was his last day (for this cycle) with the first chemo drug he was taking. So I’ll catch everyone up on the last few days to let you know how it’s been going.
This first chemo drug, Alisertib, makes Caleb very loopy within about 15 minutes. He gets silly and very chill, but is also very unsteady on his feet. When the effects start to wear off later in the day he seems very agitated, especially at small things that wouldn’t normally make him angry. We can’t tell if he’s tired, doesn’t feel 100% like himself, or what. But we observed the same effects for several days in a row. The one thing I am thrilled about is that this drug didn’t affect his appetite one bit. Aside from having to wait the 1 hour after taking it to eat, his appetite has been normal. Maybe even a little increased because he eats like crazy once he finally is able to each day. What this has meant for us is many low-key days at home keeping him entertained and happy, while also making sure he doesn’t do anything too physical because he’s a little loopy.
We have been so lucky to have Grandpa and Grebbie in town to help us. Sunday they took Tyler out for a while so we could just relax and give Caleb some rest time. During the week they have been taking Caleb for the day and treating him like a King. Monday, as soon as Caleb could eat, they got him pancakes and bacon, followed by a day of lounging around and eating snacks from their hotel bed! Caleb just loves being spoiled by them, and I think they might like it a little bit too!
Grandpa and Grebbie didn’t just sit around with him. They handled some of the hard stuff too. Tuesday I had the opportunity to join Tyler on a field trip with his school, but that meant Grandpa and Grebbie had to take Caleb to his appointments. They had to help with getting his port accessed, entertaining him in between blood draws, and giving him his chemo. But they handled it all for me so that James could work and I could go with Tyler on his field trip to see the play Peter Pan. It was nice to be able to relax and enjoy Tyler and all his little friends on the field trip knowing that Caleb was being taken care of… and of course living up to his nickname of “King Caleb.”
Tonight was Grandpa and Grebbie’s last night in town. We are going to miss them so much! Since they won’t be here for Christmas we had a little mini Christmas tonight and the boys got to open a few presents from them including brand new scooters (with the coolest helmets I’ve ever seen). They were sooo excited! Especially Caleb! He just couldn’t believe he had a scooter! We don’t really have room to store bicycles here so the scooters are a perfect way for the boys to be able to play outside without having to have a huge bike in our apartment. Although I am sad Grandpa and Grebbie won’t be here for Christmas, we made some great memories in our own little “pre-Christmas Celebration” tonight. The rest of our family will be joining us in the next few days to spend Christmas with us, and we are definitely looking forward to that!
Tomorrow Caleb has an appointment with his main doctor and another couple blood draws. But then we have a full week with NO APPOINTMENTS!!! After tomorrow we don’t have to be back at St. Jude until the day after Christmas. That is when things get real though because we have to check in to the inpatient part of the hospital where we will stay 4-5 days. We have not had to stay there yet. Everything we have done so far has been outpatient. I am nervous about that stronger chemo that is coming, but I am trying to push it out of my mind so we can enjoy the next week with family in town celebrating Christmas!
Wishing your family.wonderful Christmas blessings and happiness and lots of laughter
Wishing you and your family all the best on this holiday season.
Christina my heart breaks for little Caleb. Praying for Caleb, you, James, and Tyler. I know it’s hard on Evelyn and the rest of your family. Praying for everyone. Your a super Mom taking care of the sweetest little Super Hero. Continued prayers for healing. Hugs to you and your family❤️❤️❤️