Today was pretty much a repeat of yesterday. We played, watched movies, went to the playroom, etc. A little bit of cabin fever has set in, and even Caleb is feeling it. He asked to take a walk to the Cafe to pick out a snack and when we got down there he picked out pizza and cantaloupe. As we were about to leave the Cafe to head back to the room with the food Caleb begged to sit at a table and eat it down there. So I think even he enjoyed the change of scenery!
As far as medication goes, he got his bag of chemotherapy this afternoon. The dose today was a drug called Cyclophosphamide. It is the same one that he got yesterday afternoon. Today’s dose completed all the chemo he will receive for this inpatient stay. So now we wait to see how low his blood counts drop. This will happen over the next 7-10 days. Some kids don’t even get sick from the chemo for 7-10 days. We are thankful he is doing very well now, but we aren’t out of the woods yet.
We will be inpatient until tomorrow afternoon so he can receive his 24 hours of post chemo hydration, a couple more bags of Mesna (protects his bladder) and a booster shot to help his immune system.
We also continued with his mouth care (teeth brushing and mouth wash) Since he dislikes it so much and was putting up a fight, we let him do it on Hulk first. Then he decided to be brave and do the mouthwash himself. Just look at that face. He does NOT like anything that tastes like mint!!
We will have a few days with no appointments and then start coming in for blood draws so they can monitor everything. The rest of this chemo cycle will be waiting for him to recover so we can start the second cycle. We will then start all over again with the first chemo we gave him orally at home. We are only about half way through the first cycle and we have to do 5 total cycles.
We learned a lot in this first inpatient stay. We learned now much team work we need between James and I to be able to take care of Caleb, get a decent amount of sleep, and also escape this room a few times a day. When I get overwhelmed he sends me to my happy place, the treadmill lol. I am thankful to have a supportive partner that understands I need this to clear my head. I am also thankful that we were able to do this first stay together, because I have watched some other parents here that are alone and I am sure it’s not easy to be the sole caretaker of a child receiving chemo.
As I sit here tonight Caleb is fast asleep. He played ball in the room with daddy for quite a while and tired himself out! James went home to be with Tyler tonight because we don’t want to leave him for too many days either. I miss him so much, but they are going to come visit tomorrow and then hopefully we will all be back at the apartment as a family tomorrow night!
He is a little boy, fighting a huge battle, in a big room of scary things. He is so strong and so brave. Good night my little superhero!
I hope you all are out of there in a few hours, to “home” for a while. Love and prayers!
Praying for some “fresh air” quality time for you all.
Prayers that you will be home as a family tomorrow night and that you all stay strong.🙏🙏🙏