We're home...for now

It was haircut night at the Brand house.

And it was cupcake night. Thank you Betty!

Caleb had physio with Carolyn today. His knee joints really stiffened up over the first week of hospital stays and beginning treatment. His knees definitely do better with more exercise, another reason why it's good to be home.

Today we were discharged from the hospital at suppertime. It took two trips to get everything down to the van, but we're home. It's good to be home. We are scheduled to be back at hospital for "clinic" on Thursday morning. Clinic will be a routine part of our lives, starting now. It is the place/time that will deal with our outpatient issues. We'll get results of blood work, receive transfusions, and have chemo at clinic. I was given a good run down of how that all takes place, what the procedures are, etc. this afternoon. It is well run; there is quite a system to how clinic happens. I like how well planned it seems to be. There are many people coming through to access these services, and many health care professionals to coordinate, and it all seems to work as well as might be expected with so many variables. I am once again wowed by our health care system. We have been told to expect Caleb to spike a fever sometime in the next few days or weeks, it's very common. We'd be re-admitted because of Caleb's low counts, and in the hospital for quite some time again. This is again a reminder to us to limit Caleb's visitors for the time being. It hurts, but it's best.

I am also continually amazed by how much can happen in a day. This morning we got up at home, had breakfast, and made our way to the hospital. Caleb had an X-ray, a physio appointment, a transfusion, meds, meals, and of course TV time. I met with our social worker, physio person, clinic nurse, doctor, and "interlink" nurse (Interlink helps to connect home and hospital experiences--they're planning a home visit for Wednesday). Caleb and I had a fun wheelchair ride down to X-ray, our first trip there. Previously the X-ray technicians had come to him. Now he's healthy enough to go to them. It was a little scary at first, but 3 stickers later we were done.

The platelet transfusion was the last thing that needed to get done before we were free to go. Caleb was exhausted and so was I. We had a busy and not so fun evening time (I think we do all have those sometimes, actually) before the kids went to bed. We can definitely see the side-effects of the steroids. Caleb was quite morose and grumpy shortly after arriving home. I am hopeful that a good night's sleep will at least give us some more sunshine and smiles in the morning, or part of the day. This is just part of all of the treatment. It's hard to handle, though. Please pray for patience.

We did haircuts tonight. We had talked about it for a few days, a good summer haircut for Tim and Caleb. Our intent is to ease Caleb into losing all of his hair. Tim was a trooper and let me cut his hair. In fact, I actually chickened out of cutting off Tim's hair just before doing it. He insisted that we do this. He'll need to get a bit of sun on his head to even it out. Not too much though :). Caleb was mad about his haircut, although he wanted it, and he liked that Dad was getting his haircut too. He particularly wanted the shower after the haircut, because he can finally get his whole body wet because he has no IV line or tube of any kind dangling out of himself. He was at first worried that his bandages would get wet, but relaxed when I told him that was okay. We did end up having a nice bedtime, and the kids are all sleeping. Caleb said "Why oh why is my bed so comfy?" Thanks, Dan, for setting up the kids' beds.

Here's to strength for tomorrow. I hope we all have a good night.

J