Today, as with every day in this journey, came with mixed emotions. It was day I couldn’t wait for, but it was also a day I dreaded. We have 5 cycles of chemo to go through, so in my mind the sooner we get started the sooner we can go home. But I am also giving Caleb “medicine” that I know will make him very sick. It’s hard to willingly give something to your child that will cause them any discomfort. But for the long run I know it’s what we have to do.
So, today was the day we have been thinking about for a long time. The ironic part is it was rather uneventful really. The process began with them taking a blood sample. They wanted to monitor his blood levels very closely today since it is his first cycle. We won’t have to do this every cycle, but for today Caleb had a blood draw before the chemo, and then a half hour, hour, hour and a half, 4 hours, and 6 hours after he was given the dose. He will also have another blood draw tomorrow morning (24 hours after), and then the next morning (48 hours after). Luckily drawing blood is really no big deal since Caleb has a port. They just hook a syringe up to the line and he doesn’t even feel it. It just made for a lot of waiting around all day. Luckily James could be with us. Even when he has to work some of the time he is there, it’s so nice that he can be at St. Jude with us. The cafeteria is his remote office HA HA!
This first chemo drug, Alisertib, is a liquid that Caleb drinks out of a syringe just like all the other medications we give him. He did a great job drinking it down even though we have been told it doesn’t taste very good. We were told that kids get drowsy, sleepy, and sometimes just plain loopy on this particular chemo drug. Well, they were right. It didn’t take long before Caleb’s eye lids were getting heavy, and his speech and motor function started to lag. We are used to seeing him this way because he acts kind of the same way when anesthesia is wearing off.
Caleb had to wait 1 hour after the chemo dose before he could eat. He kept asking for Cheetos so as soon as the hour had passed I went to the cafeteria and bought him Cheetos. I was just happy that he wanted to eat and wasn’t feeling sick. But since he was kind of out of it, his hand reaching into the Cheeto bag and then going back to his mouth again was sooooo slow. We just kept laughing at how slow he was moving. And at one point he was sitting in the cart, Cheeto in hand, and he looked at me and said “Hey, I want something to eat!” And we said Caleb, you have a Cheeto in your hand! And he looked at it and said “oh ya!”, and then kept on eating. In serious situations we have learned to find the humor and laugh, and so that is what we did today. We really have no other choice. But luckily Caleb makes that easy on us because he is such a funny and entertaining kid.
The eating continued as the day went on, so Caleb definitely didn’t have any nausea with this drug. Tomorrow we start our day at 8am with a couple of follow up appointments in Radiology, and then the 24 hour post-chemo blood draw. After that he has a MET PET test. He had another one of these back in September, and it’s basically a PET scan for the brain. It uses a slightly different type of dye than a normal PET scan so that it can show the detail they need to see in the brain. Some areas of the MET PET lit up last time, especially around the tumor bed site, meaning that those could be cancerous cells. I am anxious to see how this MET PET will compare to the last one. This is not a mandatory test, but something we chose to do because it not only helps St. Jude’s research, but is also another layer of information about Caleb’s condition. We will take all the information that we can get. In the event that any new tumors or questionable spots should ever show up on a future scan, we will have many different scans to compare to, which could help detect things or help us make decisions going forward.
Tomorrow will be a long day, as we start appointments at 8am but Caleb doesn’t actually go under anesthesia for the MET PET test until noon. This means he can’t eat, so it will be a long morning of bouncing around to different playrooms, distracting him with his iPad, and molding things out of play-doh in order to keep his mind off of food. Pray for Caleb, and me!!!