Well, I realize it's been a while since I've blogged, so I thought I would today, while I have a quiet moment.
Matthew is doing really well. Exceptionally well. I'm very pleased with his adjustment to Maintenance.
During his heavier treatment, he was always on this big roller-coaster with chemo and his counts. They'd give him chemo, and his counts would tank. They'd push it 'til he needed transfusions, and had no ANC to fight off infections. Sometimes, those things would cause the chemo to pause, but not usually. I think he only had one delay, which is unusual - most kids have more, but he just handled it all so well. So anyway, his counts would tank and then they'd give him a break for "count recovery." So, every once in a while, he had two or three weeks off of chemo to allow his body to build its defenses back up. During these breaks, it was like a window that allowed us to see him as a normal 3 or 4 year old. I cringe at that word - normal. But it's the only way to describe it. Before all of this, he was normal. He went to daycare, and played with his friends, and ate at the kitchen table. During his treatment, he has suffered from a lack of contact with the outside world. It was by necessity, but nothing about it has been normal. I can't wait until his life is more normal again. But anyway, at the end of these count recovery breaks, they would give him more chemo that would tank his counts again.
I was always on watch for fevers. I can hear a child cough from a mile away, and won't let Matthew spend time with a coughing child. Before someone could visit, I'd always ask if they, or anyone in their home, were sick. Matthew watched a lot of TV. He was tired all the time. And this leads me to my point.
I don't think I realized just how tired he was during that time, until the roller coaster chemo stopped. Now, he's on a low, but more steady dose of chemo, and the goal is to keep his counts at an even rate, which is still immune compromised, but not tanked out. I can tell that he feels better. He never, ever complained about it before, but now he doesn't want to watch TV anymore. He wants to play! My sweet, brave boy. He just wants to get back to living his life.
I told him the other day that he doesn't go to his "school" (daycare) anymore. We were driving past there, and he was talking about going back, and the truth is, I don't know if he'll ever get the chance to go back. So, I was honest with him about it. He was SO mad at me! That's HIS school, and he WILL go back! Now, more than ever, I see that I need to find a way to make that happen. He needs his friends. He needs the lessons he learns there. He needs the teachers, who love him so much.
I can't wait for him to be off treatment completely. Right now, it seems like an eternity to wait. 2 more years, and 5 more months. Well, I guess closer to 4 months now. I know it'll go by so fast, and then we'll be able to move on with our lives, but from this angle it looks awfully long. For most cancers, treatment is less than a year. Of course, there's usually a trade-off of prognosis. I wouldn't dream of trading his good prognosis for shorter treatment.
And in the meantime, Maintenance seems a lot better, so far. Since he started Maintenance, he's had the croup, and a cold, and he fought them both off on his own. This is a good thing. No fevers, no antibiotics. Just good old Neutrophils, fighting off infection the way God intended.
In spiritual matters, the LDS General Conference was this weekend, and I swear, it's like they were talking to me. I know it feels that way every time, but I don't know if I've ever heard so many references to sick children, or families facing adversity of monumental proportions. Elder Ronald A. Rasband gave a talk specifically about this. His grandson was born with major health problems and spends a lot of time at Primary Children's. He said the staff there are angels, and they are aware of the worth of every tiny soul they care for there. Boy! Did he hit the nail on the head or what? Sometimes, in quiet moments there, you can feel the angels. Especially in ICS. And he talked about how hard it is to go through times like this, but how much growth you experience from it, too. I think it was in his talk, but it could have been another - but it was said that if we were to see someone drowning, we wouldn't ask them if they needed help, we'd jump in and help them. He said it should be the same when we see a family suffering from overwhelming adversity, such as life-threatening illness. It made me realize that I do this a lot. I ask people if they need help, and I know better because when we were in crisis mode during the first few months of Matthew's treatment, the thing that helped me the most was when people didn't ask, they just did. So many people showed up and knew their unique way of offering help, and they just did what they could. With all of the efforts combined, we were carried through. I will be better about just doing something from now on. And to those of you who did all those things for us - thank you. It really was like being rescued while drowning. We'll never forget the kindness we were shown during that impossibly difficult time.
Matthew's next appointment is April 11th. I'm anxious to hear how his counts have held up for a whole month. If his ANC is 1000, they'll leave his doses as they are, which would be a really great thing. If it's too much higher, they'll increase his dose, which could make him tank. I'm nervous that will happen. He always has better counts than they expect, so I think he'll end up with higher than usual doses. If his ANC is low, they'll decrease his dose and try to work their way back up to the current dose.
For the last couple of months, his doctor has been telling me to wait a couple more months to talk about daycare or preschool. I'm hoping this month will be the month. Poor Matthew might not survive another month.
I'll update again soon. If not before, than after his appointment.
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