We have had an amazing couple of weeks. We participated in the St. Jude walk/run, we have been swimming in our pool, playing with friends, and celebrating birthdays. Unfortunately, things must have caught up with Caleb because by Sunday afternoon he had a fever.
James and Caleb took their usual trip to the ER for a blood draw, antibiotics, a nose swab, throat swab, etc. To our surprise they sent us home after that and said to follow up the next day (Monday) with our doctor to see if Caleb needed to get additional doses of antibiotics, and to see if anything grew on the cultures.
Sunday night into Monday morning was scary. I think we would have rather been in the hospital. He had a 102 fever and was burning up. Fever is so scary for a cancer patient, especially someone with a port. Not knowing the cause of the fever is even scarier. They immediately gave him a broad spectrum antibiotic when he went to the ER, but if they can pinpoint the cause of the fever they can target the antibiotics to treat the specific issue. Of course if it’s viral it’s just something that has to run it’s course. Either way they can keep him on fluids to keep him hydrated when he’s in the hospital.
The viral panel (They test for about 40 of the most common ones) all came back negative, and Caleb’s counts were pretty strong Sunday night so they decided to send him home.
He was burning up all night and we kept trying to break the fever with cool wet washcloths and Tylenol. By the time he woke up in the morning he actually looked alright. He wasn’t burning up anymore. I got a 98.8 reading on the thermometer, and he was running around playing. I thought “maybe we are going to be ok.” This was short lived though, as about mid-morning he got really cold and started shivering. This is usually a sign of fever for him.
We called his hospital and they told us to come in so they could give him more antibiotics, check counts again etc. If his ANC was under 500 we knew we would be getting admitted. Caleb looked so sad and lethargic. He fell asleep on the way to the hospital and again when we got there. He just looked so sad! He had a 100.8 temp when we got there. They waited a little bit to see if it would come down but we eventually had to give him Tylenol to control it. His ANC came back at only 470 so we were officially getting admitted.
We know how to make the best out of our hospital stays. The child life department is amazing at giving him little toys to keep him entertained. He also enjoys going to the playroom, taking walks, and picking snacks out of the vending machine. I guess I don’t mind paying 3x the amount I would pay at the store for a bag of chips or candy if it gives us something to do and gives him a little excitement.
This morning when our doctor came to visit we unfortunately were told that they want to keep Caleb inpatient until his counts recover. The part that makes this tricky is we are currently right in the middle of his chemo cycle. His counts are already low and still dropping. He sometimes doesn’t recover for 2 weeks. In the doctors words he wanted to prepare us for a “lengthy hospital stay”. I definitely wasn’t ready to hear those words. I was so sad when our fun weekend ended with Caleb in the ER and even more sad that it’s resulting in him staying in the hospital for an unknown amount of time. We are lucky that the staff is amazing and caring and takes very good care of him, but it’s not home. We did get moved to a larger room since we are staying, which is really nice and a lot easier to tolerate than the single rooms. The walls don’t close in quite as quickly. He’s not in isolation (since he didn’t test positive for rhinovirus or anything this time) so we can freely move about the hospital as long as he is wearing his mask. That also makes entertaining him a lot easier. Tyler picked out a couple new toys for him that I got to surprise him with today, and Grebbie also came to play so that made things much much easier on me today.
But just because we make the best Of it doesn’t mean it’s easy. Our family is split up, sleeping at the hospital sucks, and eating take out food or hospital food gets old. James works during the day but at night he comes to stay with Caleb and then we switch back again in the morning. I can’t imagine doing this for 2 weeks when it’s hard enough to do for a couple days, but, we’ll do anything for Caleb so if that’s what we have to do then we’ll do it.
The boys were missing each other tonight so James picked up Tyler from school and brought him to visit. We all had dinner together which is nice because I hate it when we aren’t together as a family. Grandma and Bruce were in the neighborhood so they came by to visit too.
So, my heart is just sad today. I have been kind of down today but I guess not just for any one reason. Overall I am tired of this cycle and this process. I have enjoyed the last 2 weekends so much. We had fun and made so many memories and I was so thankful Caleb was strong and healthy enough to be at some very important events, especially Tyler’s birthday party. I know tomorrow will bring a new perspective and a new day and that everything will be alright. We will focus on Caleb and keeping him safe and healthy until we can get through these final chemo rounds. I know it’s only a couple more months, but days feel like weeks and weeks feel like years sometimes. I’m thankful for all the support of our family and friends and even when we’re in our lowest times. This fever thing is beyond frustrating, but we will get through it. Caleb’s laugh and smile and silliness are all I need to keep me going.