Hurry Up And Wait

Just thought I aught to get on and update, because it's been a little while.

Matthew's doing pretty well. I think he feels pretty good, and that makes him a little bit stir crazy. He's sick of being stuck at home all the time. This phase of treatment has been relatively good, and I was nervous about it, so it's a pleasant surprise. His last chemo was one week ago, today, and he had another one ten days before that. He has shown almost no symptoms, which I think is pretty amazing. I say almost no symptoms because for the last few days, he's had some leg pain, and I think he's pretty achy all over. He doesn't know how to express that, but he just gets progressively more grouchy each day, and you can just tell he's more tired than usual. But you could never convince him that he needs a nap! I've been giving him pain medicine pretty regularly to get him through.

While I hate giving him pain medicine, I think he's gotten through this experience relatively well in that department. He's only had to get a new prescription for it twice. So each bottle lasts him more than two months. You always hear how painful it is to endure cancer treatment, and so I expected worse. Either he isn't having as much pain as I would expect, or he has a high tolerance for it. Or he doesn't know how to communicate it very well - although he has learned when to ask for it. He calls it "ouchie medicine."

I'm starting to look at some of the realities of Maintenance. It's coming up soon. Only about another 5 or 6 weeks. I can't wait to see how he randomizes. It's hard not to be able to plan ahead, even a little bit.

Here's what I've figured out recently, though:

1) I kind of thought I would be able to return to work full time when he hit Maintenance, because he would be allowed to go to school if he was old enough, so I figured he would probably also be allowed to go to daycare. But, as I've watched other kids reach this point, I've seen that most of them don't go to school as much as a regular student would. They miss a LOT of time still. Counts still jump up and down through all of Maintenance, and they are neutropenic sometimes. They still get hospitalized for infections or serious illnesses (pneumonia, RSV, etc..). So, I don't think I would be able to rely on his ability to go to daycare enough to send him there when I go to work. It would make me too unreliable of an employee. (PS, I cannot fathom how single parents do this!)

So, I've been exploring the avenue of getting him into Head Start. A few people I've talked to think they'll give him an IEP (Individual Education Plan - which is for kids with special needs). With an IEP, I guess he's pretty much guaranteed a spot in Head Start. Head Start would be really good because it would get him some social interaction, and some pre-school learning (although he's already pretty advanced - it's still good to keep his brain active), and it's good because it's free. Maybe while he's at Head Start, I could find some other way of bringing in income that isn't as rigid as a full time job. Or, maybe I could use that time to work out and run errands! Sounds heavenly to me.

2) I'm scared to go a month at a time without a CBC. That means he'll be neutropenic sometimes without any kind of warning.

It's funny how a short time in life can change so much. When Matthew first got the infection in his cheek, the ER doctor was considering giving him IV antibiotics, and I totally balked at it. The thought of someone putting a needle into Matthew was hard enough, but an IV? I was relieved when she decided not to do it. In hindsight, it probably would have done a lot better to control the infection, but maybe it would have made the cancer harder to diagnose. In the end, that infection that just wouldn't go away was what led them to look at his blood and then his bone marrow.

Now, less than 8 months later, I'm totally afraid to go a whole month without someone drawing his blood to look at it under a microscope. It feels like I'll be walking around in the dark.

3) Although, it feels like we'll start to get our lives back, it's a little bit scary. Again, like walking around in the dark. I don't know the long term effects this will have on our family, as a whole. It feels like soon, we'll be dealing with aftermath. It's exhilarating, but a little bit scary. I hope we don't have too many pent up emotions.

On a MUCH brighter note, though, I just called Make-A-Wish to nominate Matthew to be a Wish Kid. That means he can wish for anything he wants. He wants to meet Mickey Mouse on the beach, which translates to Disney World. I hope they can grant him that wish! All of my kids deserve something like that this summer, don't you think?