Caleb had several appointments today, and for whatever reason he just wasn’t feelin’ it. We had a bit of a rough morning which I will blame mostly on the fact that he couldn’t eat breakfast. He had to be sedated for a test later in the day, so, no eating for him.
We started our morning with a clinic visit, which was just to check in and see how he was doing after his first day of chemo. He is not having any major side effects so far. So after that appointment we went back to the Radiology office so they could check in with Caleb. It has already been a month since his last radiation treatment, so they wanted to see how he was doing and also talk about any side effects still to come from the radiation. But again, so far so good, so that was a pretty quick appointment. Caleb just wanted to play and not be bothered by all of their tests and checkups. So he was already pretty cranky by the time we arrived at the next appointment for his blood draw. He cried and said he was scared even though he knows the blood draw through his port doesn’t hurt. He just did not want to be touched by anyone today.
After the blood draw it was time to go check in for his MET PET scan. Luckily the Diagnostic Imaging office has a really nice play room, and Caleb started to calm down once he got a chance to just relax and play. After about 20 minutes they called us back for the test. This scan is different from any others because you have to be evaluated by the sedation team for anesthesia first. Once they clear him they order the dye for the test. It has to be mixed fresh and is made on site. Unfortunately, this process takes an hour and a half. But thank goodness I brought his Grebbie with me for backup. We played and watched TV and entertained him in the room until it was time for him to do the test. This particular test only lasts about 15 minutes, so you end up waiting around longer to do the test than the time the test actually takes.
As soon as he was asleep for his test we ran to the Cafe to eat lunch. Caleb isn’t the only one who suffers when he can’t eat. We don’t eat in front of him so the rest of us were starving too!
When he woke up from his anesthesia our day of appointments was over. We went home to rest for a bit, but then Tyler had a Christmas show at his school tonight. All of the Pre-K classes learned some Christmas songs and performed them in the Cathedral. Tyler had been talking about this show for days, and had been singing around the house. Even when we arrived he was all smiles. However, the moment he stepped on the alter and looked out at all the people he kind of panicked. He spent most of the show turned around kind of hiding behind the kid next to him. He’s such a good kid, but apparently public performances are not his thing. And that’s ok! I don’t really like to be up in front of people either. All of the other kids did an excellent job and I loved the songs they sang. The show was so cute. I still enjoyed it, even if Tyler wasn’t singing!
After the show he was perfectly fine and played with all of his friends. So, we’ll try again next year with the performing thing! HA HA! The school had refreshments for everyone and Tyler also gave us his gift he made. I love handprint artwork and I absolutely keep every single thing that the kids make with their handprints. Things like that are my favorite!
All in all it was another busy, but good day. Caleb did not actually receive a chemo dose today. He will have another one tomorrow morning. When we got home from Tyler’s show Caleb was so tired and started to fall asleep. So we laid down together on the couch and he fell right asleep while laying on me. This whole process has been hard, but the one thing I can’t get mad about is the extra time I get to spend with him. He always wants me and needs me and I think all the time we spend together has made us extra close. It’s a positive side effect of what we are going through, and him falling asleep on me was the perfect end to my day.
Nothing like a cuddle at the end of a difficult day. You are truly making this the best possible experience under the circumstances. Proud of all of you.