We’ve been home just a little over a week now and it feels like so much has already happened. We’ve been enjoying our home a lot! Tyler went back to his old pre-school for just a few weeks before he starts Kindergarten. He is so happy to see his friends! We have been visiting with friends, swimming in our pool, and just in general enjoying being back in familiar surroundings! Have we enjoyed ourselves? YES!!! Did we overdo it a little… probably. Sadly Caleb caught a virus and because his immune system is too low to fight it off, we are back in the hospital.
This is all a learning process, and we are still learning about how this oral chemo will effect his counts now that he isn’t getting the harsh chemo in between. But since his body is still recovering from the many rounds of chemo he has already received this first round of the oral chemo at home still hit him pretty hard. It was definitely a harsh dose of reality that even though we are home, life still isn’t bouncing back to “normal” as quickly as we would like it to. It was a good reality check for us that we still need to practice the precautions we practiced in Memphis, and basically keep him in a bubble when we suspect his immune system is low. But, for now Caleb is safe and getting the care he needs to get better. He had Rhinovirus, which is basically a cold virus, once before in Memphis so there is no guarantee that we could have done anything different to avoid him getting it at home. This is how life will be until we get a little farther out from all the high dose chemo that he received, and his body truly recovers. There just hasn’t been enough time yet.
Before all this happened Caleb and I were starting to get into a routine in our new house. We have so many more activities to choose from than we did in Memphis… we can go to the neighborhood playground, we can go swimming, we can go for a walk, he has a million more toys to choose from (ok, not a million, but close to it ha ha!). So we were really enjoying exploring the new neighborhood.
Funny story… Caleb went to get himself dressed the other day but doesn’t know where all his clothes are located yet. But somehow he found a pile of clothes with his hospital gown in it so he came out dressed in pajama pants and a hospital gown HA HA! We told him good job for getting dressed on his own, but we took him in his room to show him where his actual clothes were located.
We are slowly getting our house unpacked and organized. We pick one small project to tackle each night when the kids go to bed and we are making good progress! My mom came over the weekend to watch Caleb (James and Tyler were at this parents house out of town) so I could get some more boxes unpacked. Unfortunately Caleb started not feeling well and wanted Mommy a lot, but I still made a huge dent in getting my office set up. I am most excited about this room because I haven’t had a desk of my own in almost a year. I miss having my own space. This room will be a combo office/workout room so I can’t wait to get it all completely finished!
So, as I mentioned Caleb started not feeling well on Saturday afternoon. He became very lethargic, stopped eating, and just wanted to lay around… NOT like Caleb at all! I monitored him closely for fever all through the night Saturday. He would wake up and cry and cough and he also had a runny nose. He became very congested while laying down sleeping Saturday night, but still didn’t have a temperature high enough to consider it an emergency to take him in the middle of the night. When he woke up Sunday and still refused to eat I knew something was very wrong. Caleb usually wakes me up begging me to get up and get him breakfast. But instead, since we didn’t get much sleep the night before, he laid in bed with me until almost noon!
We decided to take him, for the first time, to his doctors here in Tampa. He was very nervous because their procedures are a bit different, and of course the doctors are different, but he was so brave. He hardly cried and didn’t even move when they put his IV in his arm. He did everything the doctors asked. They could tell he’s done it all a million times before. He is so sweet and I just wish I could take this all away from him!
There is a clinic near our house that is where we took him to first to get checked out. But once they saw him and understood his condition they transferred him to Tampa General Hospital in Tampa. So that is where we are now. When we arrived here they were comfortable accessing and using his port, so at least he was able to get the IV removed from his arm. This made him a lot more comfortable! He has been very quiet since we got here. Every time he tries to talk he ends up coughing so he’s just been very quiet. I can tell he just feels horrible. The rooms here at Tampa General are nothing like St. Jude’s patient rooms. The rooms at St. Jude are HUGE and have a separate room and bathroom for parents. We knew it wouldn’t be like that here but we also didn’t expect it to be this small. The room is SO small and there is one sleeper chair where poor James spent the night in last night. We love our team of doctors here so far, and all the nurses have also been amazing, so he is getting great care in that aspect of things. However James and I are a little homesick for St. Jude when it comes to the hospital itself. I never thought I’d miss those rooms more than I do right now. It makes me realize even more of what a special place St. Jude is. But we are hoping that we won’t have many inpatient stays here in the future!
So far this morning we have just been hanging out. Caleb is quietly watching his iPad. The team of doctors made their rounds and I am very impressed by their attentiveness and care to Caleb’s specific situation. They have spoken with his doctor at St. Jude to make sure their protocols match up with St. Jude’s, and to understand anything else special that they may need to do. So far we are very happy with the team here and appreciate their understanding of how delicate Caleb’s situation is.
At this point we will definitely be here at least one more day. We are waiting for the virus to run its course and for Caleb to start feeling better, and hopefully eating and drinking. The only time he has smiled this morning is when Grandma sent up balloons, a toy, and some treats from the gift shop. He likes his little Chase stuffed animal, and laughed at the doggy balloon because the dog has a bandaid on his head. Other than that, Caleb has been pretty quiet this morning. I am hoping things will start to turn around soon, but he made need another transfusion before we leave since his numbers are still trending down. We will keep everyone updated as always, but let’s hope Caleb can kick this nasty virus very soon!