Well it has been quite a week! Quite a LONG week! ha ha! Between shuffling Tyler around, celebrating my birthday, and James and I working in shifts to watch Caleb, we are exhausted. This stay has set the record for longest consecutive hospital stay at 6 nights, 7 days. We can’t wait to be home together, which is hopefully going to happen tomorrow (Sunday).
Our doctor in Tampa has been observing Caleb closely, and also communicating with our doctor at St. Jude. He is happy with Caleb’s overall energy and appearance, as well as his strong vitals, and a healthy appetite. Caleb was able to come off IV fluids since he is eating and drinking so much on his own. On top of that they are able to give Caleb a G-CSF shot, which helps stimulate the production of blood cells. We received these after chemo at St. Jude as well, and it should help Caleb recover a little faster. With all of this combined, and taking into consideration that Caleb hasn’t had any fevers since Tuesday, they have decided to let us go home tomorrow. The one stipulation is we must come in for count checks every day until his ANC is above 500. So they will still be watching him very closely, and he is still very much at risk for catching something, but we’ll do our best to put our protective bubble around him at home until he is fully recovered.
My birthday was this week, and even though being in the hospital wasn’t the way I would choose to spend my birthday, I am overwhelmed by the lengths people went to to make me feel special. For 2 straight days I was showered with food, cake, and gifts. On my birthday we went to the back of TGH by the water and had a picnic with gorgeous views. The one perk of TGH is that it’s in a beautiful location, right on the water with a great view of downtown Tampa! It’s nice to be able to escape the walls of the hospital room and get outside to enjoy the scenery.
Caleb finished his last dose of chemo for cycle 3 on Friday evening (yesterday). So, we are half way done through his oral maintenance chemo. It’s harder than I ever thought it would be honestly. Each day is kind of like a cycle of dealing with the side effects of the chemo and it can be exhausting. Caleb wakes up super silly and full of energy. He’s funny, but also reckless, so he has to be closely supervised. I come in to the hospital during this time, and James (who has been with him all night) goes home to work. After the silly stage comes the angry/tired stage. At that stage I can tell he’s coming down off the chemo high and probably doesn’t feel that great. As I see that stage setting in I try to get him to lay down and rest with his iPad or take a nap. He’s been taking good naps this week so I can tell he’s been pretty tired.
When he wakes up he kind of wakes up in a fog and it takes 20 minutes or so to calm him down. Then he’s finally back to himself and ready to play again. At this stage James and I usually switch places. James comes back to the hospital in late afternoon/early evening to take over for the night while I leave to pick Tyler up from school, do homework, get dinner, etc. Caleb stays pretty active through 8 or 9pm, and then James let’s him watch his iPad until he’s ready to go to sleep. We usually have an earlier bed time at home, but hospital stays are a little different schedule. Then we wake up and do it all over again the next day. I am glad this cycle of chemo is over because Caleb’s demeanor is much more even-keeled when he’s not on the chemo.
I have to say we are so impressed with the Child Life department at TGH. They have really helped make our long stay bearable. They have a play room with lots of toys, movies, games, etc to play with. They do a lunch buffet once a week and Caleb loved the spaghetti this week! The girls even gave me a gift on my birthday! They just really help cheer up all of us and give us things to do to pass the time so I am so grateful!
On top of the Child Life playroom we also take walks, visit the vending machines, and make a “movie theatre” (which basically means popping popcorn and watching a movie).
As I mentioned, Caleb will get to go home tomorrow but first today he had to get a blood and platelet transfusion. His counts are dropping and getting close to that threshold where they would transfuse. Our doctor wanted to make sure we are able to get out of there at a decent time tomorrow so they decided to transfuse tonight. This means Caleb has to take his pre-medications (to avoid allergic reaction) on top of his regular meds. He has to get a shot in his leg for the G-CSF and he hates shots!!! Caleb will also go home on 2 oral anti-biotics, so this is 2 more meds on top of our normal 3 meds per day already. It’s a lot! And most of the time he’s good about it all but sometimes he just doesn’t want to do it. It makes me sad because he doesn’t deserve to be going through any of this. I hate it when he’s sad and when we have to make him drink disgusting medicine that I know must taste terrible. I just hope that we can get past all of this soon. It will be the beginning of 2020 before things really start to get better, we just have to keep holding on.
And lastly, the most important thing I am taking away from this week is that we continue to be blessed. No I didn’t want to be in the hospital all week, and no I didn’t want to cancel my real birthday plans and spend it in a hospital. But even though at times I was sad what really matters is that we were all together. 1 year ago, when I celebrated my birthday at St. Jude, I didn’t know if the 4 of us would be together next year. But here we are, all together. Despite the setbacks Caleb is still thriving. He is strong! I love watching him do things like catch a ball, and run and dance. And Tyler is doing so well in Kindergarten. He is reading very short simple books and learning all his site words. He is curious about the world, has a love for animals, space, legos, superheroes, and most of all loves his brother! The other night when we got home from the hospital Tyler said he saw a shooting star (it was really an airplane, but whatever!) We made a wish anyways, and Tyler said “I wish for my brother to get better.” I don’t think as a mom I could ask for anything more than that. And then after he made his wish his said the shooting star was going up to God so that God could know his wish. I am pretty sure my heart burst in that moment. I have the most amazing kiddos. I took a picture of the sky that night just so I would never forget my conversation with Tyler and his sweet heart.
Well that was a way longer update than I anticipated but it’s been a few days. Hopefully this week will be uneventful because next week we are scheduled to fly back to St. Jude for scans and checkups! We really want to stay on track to make it up there next week for all of our appointments. But more on that in an upcoming post!