The incomparable words of Alfred E. Neuman are quoted fast and furiously over our long blended-family weekends. His Pokemon phase gloriously fading, K, my soon-to-be stepson, now can’t get enough of MAD TV. And while I much prefer this obsession to the last one—have you ever tried to watch a Pokemon episode? There’s 24 minutes you’ll never get back—these days his looped repeats of “What, me worry?” seem to mock me at every turn.
In February my daughter, E, reached a milestone: Four weeks off her weekly shot, N Plate, her platelet count stayed within normal range. At the hospital visit with her doctor, to whom I give all the credit for her progress, I asked him how important this number was. “It’s huge,” he said.
Huge is a huge word to a mother’s ears, and not one Dr. B had used before. E’s case, while not the toughest he has faced, has been no walk in Prospect Park, either. When we came to Dr. B, the final stop for many of the toughest ITP cases, we were at our wits’ end, child puffy and steroid-riddled, mom depressed and holding onto the last thread of hope that this doctor would have the answers. After logging in two months of overnights at Westchester Medical Center, the specialists who were treating her there threw up their hands; they were out of tricks. Their next move would have been splenectomy. So in April 2009, five months after her diagnosis, off we went to our second-opinion doctor, one of the world’s leading blood disorder specialists. He was our last hope.
The promise of N Plate, the drug she was just weaned off of, took nearly four months to be realized. And we had to add a pill to supplement it, which I initially resisted. But in late July 2010, it happened: Her numbers shot up, well within normal range, instead of taking their usual roller coaster dive. From that point on, she said goodbye to steroids and IVIG treatments. The new course was working. The following March, we started slowly reducing her N Plate dosage–her numbers were comfortably in the normal range now, and had been for months. By last fall, she was only receiving a tiny dosage and still maintaining healthy platelet counts.
So in January, it was time to see what her body would do without the medication that had stabilized her. A month later, we were hopeful that she would hold her own, but as with any chronic autoimmune issue, even the best specialist can’t fully predict the outcome. Every patient is different; there is no one path to recovery.
Yes, February15th was a “huge” day, the day we started to believe that E may, in fact, be in (dare I say) remission. What a huge relief. And four weeks later, just this past Monday, her platelets were at a very healthy 280 (that’s short for 280,000. A normal platelet count falls between 150,000 and 400,000). I should have been ecstatic. And part of me was.
But the other part was crippled by a new fear: another health issue E was grappling with, this one of a gastrointestinal nature. Could it be Inflammatory Bowel Disease (IBD)–a la Crohn’s or ulcerative colitis? Celiac’s? Or possibly just a passing gastrointestinal virus? (I am doubtful of this, as are both her pediatrician and Dr. B., but E’s dad—always eager to find the easy answer—is convinced that’s all it is.) All will be revealed–next week.
The three rounds of tests now in the lab, this is the “waiting week.” And despite hitting the mat every morning, there’s no amount of Zen that can make this less worrisome. E is feeling it, too. When I implored her to “try not to worry” a few days ago on our ride home from school, she quipped back, “Too late.” Yes, we’re all worried, and not ready for another health battle on the heels of the first one. Whatever it is, though, we’re getting prepared to fight if we need to.
More than a less-favorable diagnosis, dealing with more doctors, experts, symptoms, treatments, and uncertainty, my biggest worry is what another chronic condition would do to E’s childhood. She’s a good kid. She’s suffered enough. So, I’m putting this out there to the universe: Isn’t it time to let her be a normal kid again? That’s my wish. And then maybe I’ll be able to agree with Alfred, that it’s really just madness to worry at all.