Today was a big day in a couple different ways. Caleb had his Radiation Simulation, which is basically like a practice run for the radiation team. And back at home their school put together a Trike-a-Thon event to raise money for our family and show their support.
Our day started out rough because it was another “no breakfast” morning. Even though the night before a procedure we sit down and explain things to him, he often wakes up and forgets. Caleb handles most things very well, but being told he can’t have food is not one of them.
Meanwhile, back at home his school had organized a Superhero themed Trike-a-Thon for him today. Luckily we had a break in our appointments and we were able to FaceTime with his teachers and friends during the event. I wish we could have been there in person, but seeing all the kids dressed as superheroes and riding their bikes in honor of Caleb brought me to tears. The community there is so amazing. The kids have been at that same pre-school since they were less than a year old, and many of the teachers have watched them grow up. Everyone there is like family to us, and the fact that they organized this meant so much. Caleb was so happy to see everyone on video and it definitely brightened our morning and distracted him from thinking about food!
When it was time for Caleb to go back for his procedure, he got a little scared. He has never had his port accessed while he is awake before. We put numbing cream on so he wouldn’t feel the stick from the needle. They place the needle into his skin right over the port and then it is “accessed”. That means they can give him medicine, take blood, or do IV sedation all through that port. It really is a great thing because that was the only time Caleb will have to get stuck with a needle this week. They will take the access out on Friday so that he doesn’t have to keep the needle in over the weekend, and then access it again Monday. The needle has a butterfly on it (thats the yellow thing you can see in some of the pictures) so it doesn’t look scary to the kids. They call it their butterfly. The funny thing is Caleb never talks about that. He gets more annoyed at the bandages and tape all over him!
I have decided that while Caleb is in his treatments, which last about an hour and a half, I will try to get my workouts in. I have definitely been slacking off and been in the “I can eat whatever I want” self pity mode the last 2 weeks. I need to make sure I stay focused on myself so I can keep my energy up to take care of Caleb. So lucky for me St. Jude has a Parent Exercise Room right across the hall from where Caleb gets his treatments done. It felt good to run and let loose. And their treadmills have TVs! So I even got to watch Fixer Upper while I ran. This definitely beat me sitting in a waiting room just thinking and worrying about him. It was good to get my mind off things for a while.
When Caleb woke up from his treatment I was there with his special request of Pringles and Candy with Sprite to drink. I always tell him he can have anything he wants when he wakes up, so this is what he asked for today. I love watching him try to eat when he first wakes up because he is so drowsy and makes an absolute mess! This snack was followed by pizza in bed back at home. He is pretty unsteady for a while after the anesthesia so I try to get him to stay laying down, which means I wait on him hand and foot in bed ha ha! But I don’t mind. I’ll do anything for this little guy.
For those wondering, James is still trying to work but it’s less than ideal conditions in our current housing situation. He went to Office Max last night and bought an office chair, which he is trying to use at our little table in our room. I just had to snap this pic of him today because he handles it so well even though I know it’s uncomfortable.
We can’t wait to have our apartment so we can cook again and start the meal service that so many people contributed to. But for now in our tiny space we have just been eating out every night. That sounds fun until you do it for over 2 weeks, and then you just get tired of trying to choose a place to eat every night. We were out of ideas tonight, so we went to IHOP and everyone had “breakfast for dinner.” Even when we are home we do breakfast for dinner probably once a week and the boys think it’s so fun. So this was a winner tonight!
Tomorrow begins Caleb’s first radiation treatment. I feel relieved that we are finally starting what we came here to do! But I am also nervous of the path we are headed down for the next several months. I know it’s not going to be easy. I have talked with other parents here that told me how hard it is to watch your kid get sick so they can eventually be healthy again. I am going to try to keep my mind focused on the big picture, that this will be a small chapter in all of Caleb’s life. One that he will hardly remember more than likely. I just hope I can be strong enough to get through this. But, our motto is one day at a time, so for tomorrow we will begin his first treatment. And we will see what happens from there…