It’s been a couple of days since our last update, so I’ll catch everyone up on what has been going on. We had a lot of appointments on Friday and Caleb was not feeling well at all! He started off the morning not wanting any breakfast. This is very unusual for him! But we did his blood draw and then went to his speech appointment. In speech they show him pictures to see how he describes things, they watch how he forms certain words, etc. Of course Caleb scored very well on the assessment even though I could tell he really wasn’t feeling well.
By the time we finished his speech appointment he had managed to get down about 2 Cheez-it crackers and that was it! We went to his clinic appointment to find out his counts and by this time all he wanted to do was lay in his wagon. This is again very unlike Caleb. He usually likes to hop out of his wagon to play in each playroom, but he wanted nothing to do with the toys on Friday.
When his doctor came in and saw how he looked he suggested that he stay on the fluids for the rest of the weekend. His blood counts were still good, but his magnesium was low, and that combined with the fact that he wasn’t eating or drinking much made the decision to keep him on fluids an easy one. At least he would stay hydrated and they would also add magnesium to his saline solution so he could get that back up to a normal level. The pump he uses is an ambulatory infusion pump that is small and runs on batteries. It is hooked up to a large bag of saline and pumps it in to Caleb’s port slowly over a period of time. Both the bag of saline and the pump fit in the backpack they gave us to carry around. The good thing is that the pump is portable. But the bad news is that through eating, sleeping, playing, riding in the van, etc. Caleb is always attached to that backpack. It made James and I nervous all weekend because if he or Tyler were to step on the tubing, or it were to get caught on something and get pulled, it would pull on the needle accessing Caleb’s port. His port has been pulled a few times on accident during inpatient stays and it’s very painful for him. But since he knows how that feels he was very mindful of where the tubing is and where the backpack was all weekend. Any time he wanted to move around the apartment he just dragged the backpack right along with him. It was like second nature to him. It’s unbelievable to me that a 4 year old can be that responsible with something like that but he totally was!
But back to the rest of Friday… Unfortunately Caleb didn’t feel well for most of the day. He wanted to eat lunch so bad but when we got to our table in the cafeteria he got sick. It was the saddest thing. And then right after that he fell asleep for over an hour in his wagon. Luckily no one was really around us where we were sitting in the cafeteria, but I wish I could say that that even mattered. There are holders with barf bags in almost every room of St. Jude and it’s kind of a pretty normal thing. If I were able to snap out of this altered reality that we are in I would think it’s strange and unacceptable for that to happen in public, but there are 2 things that bothered me when we first got here that no longer bother me at all… watching kids throw up, and seeing kids that look sick. When I first got here I looked at each kid and wondered what their story was and felt sad at how sick they looked. Now I look at each kid and see nothing but their sweet face and think about how strong they are. It’s funny how your perspective changes and I often wonder if I’ll ever snap back to my “norm” or be changed forever.
But anyways, I digress. Luckily Caleb slept a little over an hour while we waited for our last appointment of the day. This was an appointment in the med room where they had to hook up his bag of saline to the pump for the weekend and also give him his immune booster shot that he gets after each round of chemo. I was so sad because Caleb was actually in a better mood than he had been in all day until he saw the shot sitting on the table next to us. He hates shots! He looked and it and cried “she’s gonna give me a shot!” I felt so bad because his short-lived happy mood was over. But as scared as he gets of shots, or needle sticks, or anything he always stays still. He might cry or say he’s scared but he never kicks or screams or tries to get away. He sat very still in my lap and was so brave and in a couple seconds it was over. We were able to go home for the day!
On Saturday morning Tyler had his first t-ball practice of the season. Normally Caleb would have gone to watch but we had to consider a few things… He has been very sensitive to the sun, and he was hooked to his hydration pump so he really couldn’t run around and play with the other kids. The kids usually play on the playground before and after practice and it just didn’t seem fair to tell him not only can he not play t-ball right now, he also can’t run around and be a kid. So we decided that for Saturday it was best to keep him home. Daddy and Tyler had an awesome time at t-ball and so far it seems that Tyler is way more interested in t-ball than he was in Soccer! James said he was focussed the whole time, had pretty good form when hitting, and is a really fast runner. T-ball seems pretty promising for him so far! I did the best I could to make Caleb feel special at home. We played his favorite games and did some art with some cool new paint pens he got for Easter. We had fun even though my heart was breaking inside that he can’t just be a normal kid and get out there and play t-ball too. I know he will in the future, and some day this will all be behind us, but right now honestly it just plain stinks!
Saturday afternoon Caleb received a package from Killin’ it for Kreid. It’s an organization that sends care packages to childhood cancer patients and their siblings. Killin’ it for Kreid was started by two sets of parents who both lost their sons, Kade and Reid, to AT/RT. This obviously hits very close to home for us. They sent Tyler and Caleb some super cool pajamas, a shark blanket, and a shark pillow. The boys were thrilled! Through our experience we have discovered many organizations that do things like this and I can’t tell you how much it means. It makes Caleb feel special and puts a huge smile on his face. I hope as Caleb grows older maybe we can have our own organization that can do the same thing. I would love to pay forward all the love and gifts that we have received to other families going through the same thing. Who knows what will happen in the future, but we were very grateful to this amazing organization for the care package.
Sunday (today) we had a lazy morning at home just waiting for our 2pm appointment at St. Jude. They ran an electrolyte panel to see if Caleb could go ahead and stop the fluids through his pump. All his levels came back normal so we were able to disconnect him from the pump and de-access his port. He was free from any wires for the first time in almost a week, since during his inpatient stay he is constantly hooked to a pump as well. We were like “you’re free, you’re free!!!” ha ha! So of course we came home and played outside and enjoyed the beautiful weather.
Tomorrow (Monday) Caleb has an EEG scheduled. This is a test to monitor his brain activity. They will be able to see if everything looks normal or if there is any seizure activity. He had an EEG in the days following his brain surgery, but hasn’t had one since. His first EEG showed no seizure activity, and we aren’t expecting anything to show up on this one either. They just like to monitor things because radiation, his brain healing from surgery, etc, can all cause seizure activity. Right now he’s on a medication to prevent seizures, but his EEG showing normal brain activity will be a step in the right direction to eventually weening him off of that medication. So, fingers crossed!!!
I love this silly boy so much. Sometimes I feel like he’s stronger than me but I’m trying to stay strong for him as we enter these last couple months of treatment!