Well friends, we are back in the hospital. Caleb spiked a fever again last night right before bed and so back we went. His body is trying so hard to fight the virus but his counts are just so low he is having a hard time. So the hospital with all the right meds and care is the place we need to be right now.
Up until last night we were having a great weekend though! I woke up Sunday morning to find the boys watching one iPad together. I love it when they get along and want to be with each other!
Then we all went to St. Jude together because Caleb needed a count check. The boys played while we waited for results. Caleb is still on Isolation protocol so he had to be confined to the room while we waited for results. He and Tyler played, and after about an hour and a half we got the good news that he didn’t need any transfusions! We were free to go home!
Tyler was anxious to try out his new T-ball gear, and it was a beautiful day, so daddy and Tyler went outside to get some practice. Caleb and I took a nap, and then we joined them. Caleb was actually hitting the ball well too! He was having fun and then all of a sudden got really tired. So we sat down in a chair on the porch and had a snack. We didn’t think much of him being tired. He gets worn out quickly when his counts are low. However by about 7:15 last night he was begging to go to bed. So James went to tuck him in and then realized he felt warm. We got the thermometer out and sure enough, his fever was 100.4.
I had such a sinking feeling… here we go again. Another 3-4 days at least in the hospital. They said that it’s not uncommon to relapse and even though it seemed as though his counts were coming up, his ANC was still 0 meaning his body is just having a hard time fighting this virus. So we are going through the same procedures again… watching blood cultures for 48 hours to make sure there are no signs of any other infection. He’s on antibiotics, and has had two doses of Tylenol for fever. Unfortunately he spiked a fever again this morning so he had to have more Tylenol. This time in order to get discharged his ANC will have to come up, so that could take another 4-5 days or longer… who knows… He is also currently having another blood transfusion because his Hgb dropped a bit again. I still don’t like transfusions but ultimately it will make him feel better so it’s a necessity.
I am sitting here now looking at him sleeping, watching him breathe. I am glad he’s sleeping. He needs to rest and I know it’s the best thing to help his body recover. But it also makes me sad because he looks so sick. I am sad that we are in the hospital again but also glad we are here. It’s the best thing for him right now because I know he will get everything he needs here to feel better.
There are so many things you could never expect when you first get a cancer diagnosis for your child, and being hospitalized this much is definitely one of those things. I never expected we’d be fighting fever so much. As we told the doctors, we wash our hands, we sanitize our apartment, we wash every blanket, pillow, and stuffed animal on a regular basis. But sometimes there just isn’t anything you can do. All of the doctors and nurses here have reassured us several times that it’s not our fault. This definitely makes us feel better because it’s easy to blame yourself when you feel like you weren’t able to protect him. Our lives are a constant balance of keeping him in a bubble and letting him have a normal childhood even through all of this. I don’t know if we are doing a good job, but I do know that we give 100% every day and we are exhausted because of it. I hope that getting past this hiccup with the fever and moving on to our LAST CYCLE will bring a renewed energy as we inch our way toward going home.