As I was thinking about today’s entry, I was telling myself that I didn’t have much to report. Well, when it comes to today’s events, there really isn’t much. Another day of Busulfan with levels being checked. Since tomorrow is the last day, they will not need to check levels, ’cause they won’t have another day of doses to adjust. I might mention that they did lower day two and lowered it again on day three. I guess he is not clearing it as quickly as they would like. Not quite sure what that means for his overall health, but it did get lowered. Four more doses left, then two days of Cytoxin. Ugh! I hope I can get him to sleep in pullups for the next few nights!!
I finally was able to make the mental shift that this is going to be our Home for the next 45ish days. I’ve been living in this space, as if it were separate from us. Today I was able to “make it home”. I moved a few more things over, stuff that just make life a little more convenient. Even something as simple as discovering a great light over the sink, that makes night time awake hours that much better. Putting a calendar on the closet door. (If you know me at all, you will know that I just do not like not having a visible calendar!) Finally hanging up a few clothes in the closet. Bringing over the frog hamper. Amazingly enough, we do have plenty of room for it! Figuring out the tempature settings that we like to live in. Warmer during the day and cooler at sleep time. A floor full of toys helps, too. I’ve been maniacally putting things away, when I think Gregory is through with them. Today I let the toys/activities pile up a little. It was somewhat refreshing to have a little bit of kid chaos. A pair of scissors! It’s frustrating to have to ask for something as simple as scissors. Our windows have a double blind system. Thick opaque blinds and weave-like translucentish ones. I’m figuring out how to use them so we still get the benefit of light and a little dimness, from time to time. It’s not difficult to do these things, it comes automatically once the mental shift is made, that this is home. For now. It makes being here that much easier. That much healthier and healing, too.
Receiving Red Cells yesterday made a big difference. He was awake, happy and playful all day. No nap, either. Which meant, when bed time arrived, he was READY! Today’s Counts: HCT ~ 34, Platelets ~ 15, White ~ 23.2. Never did I think I would be aware of Lymph nodes. While bathing him today, I noticed that the lymph nodes where his legs meet his trunk are all enlarged. Which is part of all this. It was strange to feel those enlarged bumps. I then went on a lymph node expidition and checked out the ones on his neck and he has two that are frequently enlarged at the base of his hairline. Yep, they were all enlarged. He also likes to creep his temperature up in the afternoon. The last few days he has had an afternoon elevated temp. Thankfully nothing that requires action. Pretty darn close, though. 37.8 Celcius is blood culture time and he hit 37.7 yesterday and today. An elevated temp doesn’t necessarily mean that there is an infection, but it gets treated as if there is. Elevated temps are not a good thing.
Since neither of us had a nap today, I sacked out with Gregory at 9:00 tonight. Slept for three and 1/2 hours and felt great. I’m pleased that he will get roughly 10 hours “straight” tonight. If you call interuptions at 12:00, 2:00 & 4:00 sleeping straight. With the occasional need to pee, too. 12 & 4 are vital checks with Busulfan at 2.
Being at a hospital that specializes in children is so different. The families that you talk to all have extreme stuff going on. It’s not just an occasional family, either. It’s ALL of us. I knew there was a set of cojoined twins here. Today I caught a glimpse of them. Sweet, curly haired little girls. When it comes to challenges with our children’s health, I’m learning that there is no worse/better off. It’s all bad, horrible, no good, heart wrenching, soul changing and life stopping. Every situation is just plain different.
Rather than thank yous tonight, I have a request. A fellow Leukemia family needs your light, love, prayers, hope and positive energy. They are facing a potential relapse. They will have more info next week. Please keep Parker Brown and his family in your hearts and thoughts.