Well, 3rd time’s a charm I guess. After visiting the ER Friday night, Saturday night, and for the 3rd time Sunday night, Caleb was admitted to Tampa General. What it all came down to (we think) was the spot that showed up in the upper part of the scar area from his second surgery.
About a day or two before he started school we started noticing a spot protruding from the upper part of the scar from his second surgery. James and I were nervous it was another growth that would eventually need to be removed. However over the next day or two after we saw the bump it turned into a white head. It looked like a huge pimple on the side of his head. I felt so bad for the kid because he went to school with it like that. Thank goodness he’s only 4 but I’m sure people still wondered what it was. Our doctor looked at it during that time and said it was best to leave it alone. If he tried to open it up or drain it, it would be more likely to get infected.
Well, Friday night came and Caleb wanted to swim in the pool. We all swam and had a great time and I guess that softened the spot enough for it to open up because when we got out of the pool Tyler asked why Caleb had a hole in his head. The area underneath the white head, once opened up, was much deeper and looked much different than we expected. So that was our first trip to the ER on Friday night. They determined that what we were seeing on the inside was some sort of calcification and the red area on the outside surrounding it is cellulitis. Instead of pus coming out like we thought, what was inside was actually hard. At that point he wasn’t having any fevers so they gave us a topical cream with an antibiotic plus an oral anti biotic to take at home. In case you want to see the spot after it opened, I’ll just post the link below. It’s kind of gross. Tyler asked if his brains were going to fall out the hole… I can’t make this stuff up people! All you can do is laugh right?!
Saturday was a pretty normal day. Caleb started chemo Friday night so he was a little loopy and a little tired in parts of the day Saturday as to be expected. Tyler and I had a birthday party to go to and Caleb stayed home with James. In the evening we all played outside and all seemed good. In fact Caleb was so worn out from playing he fell asleep on the couch, and that’s when the trouble started. I went to pick him up to move him to bed and he was burning up. So we took his temperature and sure enough he had a fever. That’s the night James took video of their whole experience, and you can read all about their ER experience here: Fever Vlog
But, miraculously they let James and Caleb go home Saturday night. They felt that they had the fever under control and couldn’t find any other immediate cause for concern. The spot was still to blame for everything. So we took him home to monitor him closely, and with permission to use Tylenol to control his fever.
Sunday seemed to start off ok but Caleb got tired very quickly. He even fell asleep at church. We took him home to let him rest and take a nap. He felt a little warm Sunday afternoon but the Tylenol was keeping things under control. Sunday night about 11pm I woke Caleb up to drink his chemo. We have to do it this way because he has to take it on an empty stomach. Waking him up is hard, but it’s easier than starving him at some point during the day because the kid loves to eat! So I woke him up for Chemo and also gave him another dose of Tylenol because he felt hot! At that point he could not stop shaking. He kept saying he was so cold. I took him into our bed and we watched him for about 30 minutes. By then the Tylenol should have been kicking in but he was still shaking and still felt so warm. At that point we took his temp and it was 102. So, up went James and Caleb to the ER once again, and this time they admitted him. There was still no evidence of any other virus or cause of the fever but with him being in the hospital they are able to give a much stronger antibiotic than the oral one they prescribed at home. That seems to be what he needed to kick the fever. Just a side note… the green machine in the pics is some sort of sensory machine that is supposed to calm the kids. Caleb was very intrigued by this so they let him check it out. I can only imagine how cool it looked to him at that time because he was already loopy from his chemo ha ha!
Caleb was discharged Tuesday afternoon so we are finally all home together once again. And, if life couldn’t get any crazier, the school nurse called me Monday morning while I was already at the hospital visiting Caleb and said Tyler had a fever and a headache. I had to turn around and drive back to Brandon to pick him up from school and take care of him. Tyler is almost never sick so I’m sure it’s just the start of the school year “crud” going around. I didn’t mind though. I am always taking care of Caleb and almost never get to just take care of Tyler so we rested all day Monday and just hung out together. And since I’m a mean mom I made him do all his homework for the week ha ha ha!!!
There are times when I think life can’t get any crazier. It’s one twist and turn after another. At the end of this week we will have been going through this for 1 whole year. I don’t know what we expected when we decided to “battle cancer” but I thought it would be a whole lot more throwing up and sleeping, and a lot less of the mystery fevers, strange food cravings, and loopy chemo experiences. But I always knew it would be constant worrying and that hasn’t changed. But no matter what we go through I am grateful. We weren’t sure he’d be standing in front of us today when we started this. And he is not only standing, he is punching cancer in the face like only a superhero can. He is so strong. I am so proud of him. I’ll battle for a million years for him if I have to. And at the end of a long day there always seem to be reminders around us of God’s hand in this. We get the most fabulous rainbows in our backyard at the end of almost every day. The storms always seem to move through in one direction, with the sun setting in the opposite direction, and it’s a beautiful reminder that one way or another, everything is going to be ok.
Prayers continued for our little superhero. He is so strong as is your family. You are always on my mind. I speak to God every night about Caleb I know God is on our side
I hope you and James are taking really good care of yourselves. Love and prayers to all of you.
Big big hugs to you all ❤️