Since we were pretty sure we were going to be admitted today, we spent the weekend enjoying the warm (for Memphis) almost 60 degree weather! We spent as much time outside as possible knowing we were about to be in a hospital room for 4-5 days. We launched rockets, played ball, blew bubbles, had an outdoor picnic, and searched for birds in the courtyard trees. Caleb loves to be outside and the fresh air felt good to all of us!
As we expected, Caleb’s counts were high enough to be admitted today. It feels good knowing we are so prepared this time around. We know exactly what to pack, what combination of meds keeps him from feeling sick, how we can expect his mood to change over the next several days, etc. The “unknown” being gone from the equation definitely makes each stay easier, although we are always ready for the surprises that life likes to throw at us.
We actually had a great day today. As I mentioned the other day, Caleb gets excited about hospital stays. We got up to his room and got settled with lunch and turned on a movie. Then we spent a good amount of time in the play room on our floor. Caleb has to get 6 hours of hydration before they can start the chemo drip. During this time he can leave the room to go to the play room or walk around the hospital. Once he is hooked up to the chemo he is not allowed to leave his room until the bag is finished. Luckily the timing worked out perfect for us that he started his chemo right around 8pm when he went to bed. This meant he got to play all day and now he is getting the yucky stuff while he sleeps.
It’s definitely getting a little easier to see that black bag hanging above his head. For some reason they put the chemo in a black bag, like a dark cloud hanging over him. The first cycle after they hooked him up I cried. This is the really nasty chemo. This is the stuff that does the most damage and the thing that makes you think “it’s not fair that I have to poison him just to get him better”. It stinks, but I guess with each Cycle I get a little more used to it. Thank goodness over years of research they have so many meds to block the nausea and also some of the damage that these high dose chemos can cause. I am thankful that he is innocently sleeping through it all. I wish I could take it for him, but I’m so thankful that he handles everything so well, like a true superhero.
So, that’s it for now! We are settled in for a few days. We are thinking we may get discharged later Thursday evening or Friday morning, but that all depends on how things go. We are praying he will continue to eat and not feel nauseous. He has gained some weight back (up to 16 kg again!) and we really need him to stay there. He is such a trooper and I’m just so proud of him. We’ll update everyone again in a day or two on how things are going!
You all are handling all of this so well. I look forward to hearing that cycle #3 went well and is in the history books.
You remain in my prayers. love to all.
I’m glad to read Caleb got to play during the day and get the meds at night….maybe someday that bag will be changed to a different color, hope so. Just like Lorene commented, you are handling this so well. I hope there are more mild temperature days in Memphis so the boys get more playtime outside.