Brooklyn had her last LP, Vincristine and steroid pulse three weeks ago. It was SUCH an awesome day and she was so proud of herself at the end of it all. We all were. We have been at this for over two years now and the side effects of the Vincristine and Steroids seemed to have lessened over time to an almost tolerable level, but this last round...it hit her hard. She complained of leg and back pain, had wild mood shifts. Her enthusiasm about school diminished and all she wanted to do was be home. It was a rough round, reminiscent of the early days in treatment.
I should also note that treatment is not done for us, she still has to take home meds until April 1st. A date that can not come fast enough. Home meds, a relatively simple nightly task, are suuuuch a drag. Every single night: Open a bottle, crush a few pills, dissolve in juice, suck into a syringe. Then you have to sneak into her room at the late hours of the evening and convince her to take it in a half sleep haze. The primary medication 6MP, we've recently discovered, has caused her to experience severe hypoglycemia on some mornings. So severe that she often wakes up, downs a cup of juice and then immediately vomits it back up. This is a side effect. The only side effect of home chemo, really. So, I suppose we should be grateful it's nothing worse. Anyway, April 1st. The end is near.
So what does the future hold for miss Brooklyn? Well, for starters we want to get that port taken out ASAP. They will wait two months after treatment is complete "just to make sure she continues to do well" (and she WILL continue to do well), and then we'll schedule surgery. After that she's got 6 months of immune system recovery ahead of her. We'll have to continue being obsessive about keeping her healthy and away from sick people for that long.
Brooklyn will continue to see her oncologist once a month for the first year, after that, every three months, then twice a year, then once a year for the rest of her life. The oncologist suggests that Brooklyn has about a 90% chance of living without relapse. A fear that has gripped me since the beginning. The odds are on our side, but I think I will never stop worrying for her.
On our next visit, we will discus the long-term side effects of chemo with our oncologist. We are already beginning to see the psychological side effects of trauma in our Brooklyn. Her doctor told me that, while we often think that being diagnosed at such a young age is good because they won't remember it, we really don't know what damage is caused during such a formative period in their lives. At this point, she's been a leukemia patient for half of her life. It's all she remembers. This afternoon she is heading to CHLA for her first NeuroPsych evaluation and we shall see what comes of it. We want to be as proactive about this as possible.
All in all, a weight has been lifted, but I still feel a great deal of anxiety for our sweet girl. I remember speaking with a friend, whose child also finished chemo around the same time as Brooklyn. We both agreed that the end of treatment is scary as hell. The support net, it's gone. It's like, as long as she's on the drugs then the cancer has no place to go. But now, now we just pray like hell that her body can deal on it's own.
Anyway, I'm really in awe of my daughter, who at four has seen more awfulness than most adults will ever see in a lifetime. She's done it with so much charm and loveliness and this great big smile and that all-knowing look in her eyes.
She's got this.
