We started this morning off with a 7am blood draw, and then we were expecting to be admitted for Caleb’s next inpatient stay. But, after packing all our clothes, and all of his clothes, and all of his toys, and his favorite blanket, and mentally preparing for the sleep deprivation that happens from around the clock vitals checks and bathroom trips, we weren’t admitted today because of Caleb’s ANC count. His ANC has to be over 500, and it was only 450. So we will check his counts again early Monday morning. This has happened to us once before, where we thought we were going inpatient and then had to wait. It’s a strange mix of emotions because we really do get so mentally prepared for those stays. When we are inpatient we have to keep him entertained, we don’t know how sick he’ll get, and on and on. So then to have to wait a few extra days is kind of like a relief, but is also delaying the inevitable. However, James and I are happy to be able to have a normal weekend at home instead of being in the hospital.
Even though James and I were a little relieved, Caleb on the other hand was disappointed. He doesn’t mind inpatient stays because there are endless amounts of movies to watch, and all sorts of superhero treatment. The nurses are always awesome at making him feel special, and of course he gets to order anything he wants off the food menu and it gets brought straight to his room. King Caleb loves this HA HA!!! So he left St. Jude today very confused because we had prepared him to spend the next several nights at the hospital. He was actually upset that plans had changed, so we promised him a family activity at home. This lead to building the Batman Ginger Bread house we never got to put together at Christmas, a glow in the dark dance party, and “zombie hunting” where daddy played the Zombie and we attacked him with our “zombie blasters” ha ha! After some special time Caleb felt better about everything and wasn’t upset anymore.
So, we’ll spend our weekend doing more of the same things we usually do. We are forced to stay inside because it’s raining here again!! And with Caleb’s ANC so low it’s not safe to take him anywhere. But we are getting really good at balancing our day with a mix of learning activities, playing games, watching movies/ipad, and doing household chores. And of course Caleb likes to pretend to be daddy and “go to work” HA HA! James has to learn not to leave his computer unlocked or Caleb will come along and type a bunch of gibberish.
Earlier in the week we had Tyler join Caleb for an appointment with Child Life. This is the department that helps explain things to the kids and their siblings on a level that they can understand. I am sooo thankful for them because on a regular basis they help distract Caleb while he is getting various procedures done, offer toys or play-doh when he’s having a bad day, or have an appointment where the boys can do medical play on a doll. This is the second time we have done an appointment with medical play and it really helps the boys understand what’s going on. This time she put the doll on the bed and they hooked his port up to the chemo, just like Caleb does during an inpatient stay. It really makes everything less scary to both Caleb and Tyler because they are able to do all of these things to the doll (his name is Jack) and really understand what is going on. Jack’s head even opens up so you can see his brain and his “sick spot” (AKA tumor) in his head. It’s a great visual for the boys and a welcomed appointment among all of the other not so fun appointments we have.
This week we have also been super lucky to have “Grebbie” in town. The boys have had so much fun with her and James and I were happy to have her help watching Caleb during the day. She and Tyler leave tomorrow to go back to Florida where Tyler will spend the week. He is out of school for Spring break, and although I will miss him so much, I know he will have an amazing week in Florida! It wouldn’t be fair for him to be cooped up here with Caleb since we can’t really go anywhere right now, so this worked out for the best. I am so grateful Grebbie was willing to fly up here to take him home, and Grandma and Bruce are hosting him for most of the week at their house. I know he won’t get spoiled at all!! HA HA!!!
We will return early Monday morning to St. Jude to check Caleb’s counts, and hopefully his ANC will be high enough to get admitted and get the inpatient stay for Cycle 3 done! I’ll be so happy to have that behind us! But for now, we will have a pretty chill weekend hanging around the apartment. It will definitely be oddly calm and quiet without Tyler home!
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