BMT: Chemo (Day -7)

Every morning I wake up a bit anxious (and very sleepy). I’m never sure how the day will go. What if something goes wrong? What if Clark has a bad reaction to one of his medications? What happens if he gets an infection with his white blood count so low? What if he is in pain or is inconsolable? Will I react quick enough and do the right things to help him?

It is stressful even on a “good” day.  Each day has its own list of challenges, and it is a lot of work just trying to keep up with all of them.  As the day goes on, and if Clark is happy – I am happy. If he is sleeping, I can clear my head and (if I’m really lucky) read for a while. By the way, A Dance with Dragons (book 5 of Game of Thrones) is pretty good so far!

Today has been another “good” day. Clark is full of energy and bouncing all over his crib. The physical therapist came by this morning to play some games with Clark. Clark’s favorite game was a Simon Says style of game with dance moves. :) And then this afternoon the Child Life specialist came to play! She laid a mat out on the floor for a larger play area. They had fun playing with cars and trains. Tomorrow she will bring some new toys for Clark to play with!

Clark had the same regimen today as he had yesterday. 30 minutes of Fludarabine, 6 hours of Campath, and another dose of cortisone steroids. Before, during and after, Clark is also given pre-meds and other preventative meds to help protect his liver and other organs that the chemo can damage. So far today, Clark has not had a fever, and has only had very minor hives.

In between visits from doctors, nurses and other hospital staff that are interested in Clark, we quite enjoy our room. There is a flat screen TV with a DVD player (perfect for when Clarkie is finished playing) and a wii (which I haven’t tried yet). There is a desk with a computer and wifi, as well as a stereo. My bed is a twin, and it is pretty comfy (or I’m just too tired by the end of the day to notice.) No one is allowed to shower in our bathroom because of bacterial/ fungal growth in the water vapors. So, whenever I get a chance to slip out of the room, I use a shared (single stall with a lock) family shower on the floor. Thankfully Patrick brought me some flip flops to wear on the tile floor! All in all, the facilities are pretty nice and I feel fortunate to be in such a great hospital.

Clark’s naps during the day directly affects how he sleeps at night. For example, yesterday he had 2 good naps and ended up having a full nights sleep… Today, on the other hand, wasn’t so great. Clark was woken up during his 1st nap because the nurses needed to do vitals (needed while on chemo). And then, as he was settling down for his 2nd nap, there was a shift change with the nurses….and everyone kept pouring into the room (for multiple reasons). This caused him to skip his second nap, leading to a very long and strenuous evening of trying to put him to bed for the evening. For his sake, and mine, I hope he gets a good night’s sleep tonight.