If ever there was a month I was happy to see the last of it was November 2007. It just seemed that everything was infected by the November blahs, or the Fourth Course Blahs as it were, especially Benjamin. We ended a record stay of almost 6 weeks when Benjamin was finally discharged on November 25th. Since then we've been back twice to start the last course of chemo, only to be sent home because his neutrophils still aren't high enough. "Third time's the charm" I hope since we're giving it another shot tomorrow. While on the one hand, it is easy to complain about the length in between treatments, it was expected, and we're glad to have had Benjamin home for almost 2 weeks.We were all affected by the Fourth Course Blahs as well. Emily started getting whiny and cranky again, asking when Ben would be coming home, and Roger and I came as close to the edge of marital disaster as we ever want to. It's just that with the time change and the extra long hospital stay and the fatigue and frustration that goes with it, even small little things will set you off. All of a sudden the entire world is against you, and no-one cares what you think and what you do. In hindsight it is classic wallowing self-pity, but at the time it just feels like such gut-wrenching despair that you think that there's no amount of crying that can make the feeling go away. I actually told the social workers at the hospital that the one thing missing was a soundproof padded room for the parents (and older patients) to go and vent their frustrations without disturbing the other families. And that's actually one of the reasons that I didn't blog much - I didn't want you all to think I was suicidal or anything, since my posts would have been so sickeningly depressing. But it's all OK now; these two weeks at home have allowed us to regain our equilibrium as well. Move along folks, there's nothing to see here.
We really should have anticipated all this, since we watched the mother of another AML patient slowly break down while waiting extra long for her child's counts to come up after the fourth course. And then, after 7 weeks in the hospital, it took another full three weeks at home before the fifth course could start. But if we use this family as our guides, the fifth course and subsequent recovery went very quickly and smoothly (4 easy weeks). So here's hoping.
Other than those pesky neutrophils, you'd never know that Benjamin is sick. It's as if he knows his days at home are numbered, and he's going to make sure he packs as much mayhem into them as possible. Let's just say that if it's not nailed down, it's toast. This morning he was too quiet for too long. When I went to check it out he had emptied the contents of his lower drawers and spread them all over the floor. And look out if the stairs have been left ungated - our little climber/slider is not about to let any opportunity go to waste. Sharing is a new concept for Benjamin, and he throws fits regularly when he is refused the toy with which Emily is already playing, regardless of what it is. It goes both ways, with Emily indiscriminately confiscating stuff from Benjamin because it is "too dangerous", only to play with it herself. Unfortunately for Emily, Benjamin has turned into a little speedster. Whether it is crawling or cruising, he gets where he wants to go - fast. His new thing reminds me of monkeys leaping from tree to tree. From one cruising surface, Benjamin will take a leap of faith and a quick step or two, essentially flinging himself to the next surface. So far he has only missed once, smacking his head on the coffee table when his hands just missed the mark. If he's not in motion then he's begging for table scraps. I guess it just makes sense that a bundle of endless energy requires a bottomless pit for a stomach. I just wish he had more teeth. The seventh one finally broke through yesterday, and we hope the others aren't far behind, but it's hard to say how much the chemo has delayed his development.
The best thing is that he's finally starting to communicate verbally. "Beba" is belly button, "Laah Laah" is any Teletubby, "Bob-Bob" is SpongeBob, and "Aaaaaaah" means that he wants us to sing the SpongeBob theme. And "Kha-kha" means he needs a diaper change. Since the infection, Benjamin has become very aware of his bowel movements. That's not to say that he doesn't mind sitting in the results. He will usually stop whatever he is doing, announce the arrival of a present and then continue on his merry way until he is stopped. Benjamin will also pick up the phone and have whole gibberish conversations with it held to his ear - unless there is actually someone on the other end. Of course, there are the standard "Mama", "Dada", "EmaEm" for Emily and "Baba" with a wave for bye-bye.
