In March of 1997, Jane was 21 months old. I took her to a friend’s birthday party in Prospect Park. It was my first time driving in Brooklyn. I remember zooming around a curve on the Brooklyn-Queens Expressway and seeing downtown Manhattan across the river, and feeling so empowered—if I could handle New York City highway traffic, I could handle anything. Jane piped up from the back seat, “Bus!” and I was so excited because she was rather a late talker and had only a handful of words at that point.
The next day, the birthday boy’s mother called to warn me that Tommy had awakened with a stomach virus that morning. Uh-oh. Every kid at the party came down with a really nasty flu—except Jane. She was legendary for her vigorous good health.
A week later, Jane and I flew down to North Carolina on a house-hunting mission. Scott was going to apply to grad school at UNC-G. Our plan was to move down in May and spend the summer freelancing before Scott started classes. Jane and I tooled all around the Greensboro area, and to my utter delight I found a cute little rental house—a former train depot, really—on a farm just outside the city limits. $500 a month, access to the whole farm including the sheep, the donkey, and the duck pond, and there was another family on the property with a little girl whom they too intended to homeschool. Seemed too good to be true. I returned triumphantly to NY and told Scott I’d found the perfect place.
A few days later, I was changing Jane’s diaper and noticed a surprising number of bruises on her legs. I wasn’t particularly worried—she was an active kid, a big climber and jumper, and we’d been at the playground all morning. Still, I decided to run it by the doctor. Unfortunately it was after office hours, so I’d have to wait until the morning.
That night Scott and I had an argument about when he should give notice at work. I was pushing for a slightly earlier date; I was eager to get down to NC and settle in at the Depot House. (It even had a name! I’ve always wanted to live in a house with a name.) Scott thought we should hang in for one more pay period before making the big move. We both went to bed upset, with Jane zonked beside us, her fair skin luminous in the moonlight. I woke in the early dawn, those bruises nagging at my mind. I snuck out of bed without waking Scott and Jane and dug a medical reference book out of the office closet. Bruising: check for petechiae, it said—little red dots on the skin—more than a dozen means bad news.
I crept back into the bedroom and raised the blind enough to let in light from the streetlamp. I remember the cold lump of fear in my stomach. There were more than twelve red dots on one arm alone. It was Saturday, March 22nd, and life as we knew it was over.
The pediatrician had office hours that morning. He took one look at Jane and sent us to the hospital for a blood test. Ten hours later we found ourselves in the PICU watching a nurse hook up machines that would remove Jane’s blood from her body and replace it with someone else’s blood. When Scott called his mother to tell her Jane had leukemia, she thought he was joking at first. He assured her that he would never joke about something like this. It defied belief, but it was real.
By the end of her first week of chemo, Jane had picked up a whole bunch of new words, like “blue IV” and “med-o-tec-tate” (methotrexate). And to think I’d been impressed with bus. Day 8 was Easter Sunday, and she hunted eggs in her hospital room with Scott maneuvering her iv pole around the bed. We thanked our lucky stars that he hadn’t quit his job yet—his company had great health insurance. I wrote a note to the owner of the Depot House, explaining that we wouldn’t be renting after all. Six months of inpatient, high-dose chemo stretched to almost nine months, because of low blood counts and complications. Jane knew more about platelets and white cells at age 2 than I did at 20. We learned how to give injections and push meds through her central line catheter. We watched hundreds of hours of Blues Clues and read picture books until they were stacked as high as the bed.
She finished the last round of high-dose chemo on Thanksgiving Day of 1997. We ate Boston Market turkey and stuffing in the hospital playroom while her meds finished running. There were two more years of low-dose chemo to go, but we expected to spend most of that period as out-patients. When we got home that night—home, where we hadn’t spent more than ten days in a row since March—it was late, a cold, clear night, with as many stars as a New York City sky can muster. I remember thinking I couldn’t imagine ever being more thankful for anything than I was to be carrying that little girl up the stairs to our apartment that night.
I was wrong. Today I watched Jane feeding Wonderboy a jar of baby food. He thought it was hilarious to have his big sister be the one feeding him, and he could hardly eat for laughing—big belly laughs that made the other kids crack up, and then the sound of their laughter, which he can hear clearly now with the hearing aids in, made him guffaw all the harder. I stood frozen in the kitchen, holding my breath as if they were a flock of rare birds who might fly away if I moved. Beanie’s curls bounce when she laughs. Rose laughs mostly with her big brown eyes. Jane is like a poster child for joy. It bubbles out of her and spills over to everyone around.
There’s a little part of me that is still leaning over the bed in that crowded Queens apartment, counting tiny red dots on Jane’s skin, slowly awaking to the fact that we had far more important things to worry about than what day Scott should give notice at his job. It’s the part of me that knows, now, never to take a minute of this for granted—to give thanks every hour of every day for these amazing treasures who have been entrusted to my care, and for the guy who gives his all in helping me take care of them. They are miracles, all of them. Especially that golden girl beaming at her little brother as she lifts the spoon to his laughing mouth.
Scott’s Home, So It Feels Like Saturday
Blogging for a Cure: Robert’s Snow and David Macaulay
From the Archives: Life on the Trail
Two Weeks Old