September 25, 2006 @ 5:45 pm | Filed under: Family Adventures, Leukemia, Little House, Paper & Desk
I found 1997 in the bottom of a box today.
1997 was the year that brought two of the most significant events of my life, and my family’s life. It was in March of 1997 that Jane, then 21 months old, was diagnosed with leukemia. A few months later, in her hospital room, I received a phone call from my wonderful editor at HarperCollins, telling me the Laura Ingalls Wilder estate had loved the sample chapter I had been commissioned to write, and they wanted me to write the Martha series.
The talks about my possibly writing Martha had begun months earlier, before any of us had the faintest inkling that there was something terribly wrong with my sweet baby. I had written a chapter (which later became the ending of Little House in the Highlands) and, huge Little House fan that I was (and am), was immensely excited about the prospect of diving into Laura’s family archives and writing books about her great-grandmother. There were actual letters from Laura in those archives! I would get to read them! I would get to try to write books worthy of being shelved next to hers! It was thrilling to contemplate.
And then one day Jane was covered with bruises, and the whirlwind swept us up and dumped us in a children’s hospital on Long Island, where we spent most of the next nine months fighting for her life.
By the time the call came, she was well into chemo. Her hair was falling out. She threw up all the time, usually on me. She lived on ketchup and breast milk. I was learning how to gauge the degree of her fever by the touch of her hand. She was hooked up to multiple IVs day and night.
I wasn’t thinking about writing any more. What I did was take care of Jane. I slept in her hospital bed with her, I changed the dressing on her central line catheter, I swabbed out her mouth with antiseptic and antifungal rinses. I read to her for hours at a stretch, until my voice went hoarse. I sculpted enough little Play-Dough people to populate, well, a cancer ward. I inhaled the scent of toxins from her skin, I took her for walk after walk up and down the corridor, past the nurses’ station and the other patients’ rooms, dragging her i/v pole alongside us.
Scott spent every minute he could at the hospital, but eventually he had to go back to work. He’d race out to Queens each evening, bringing us dinner (which Jane never ate), clean clothes, a book for me to stare at after he dragged himself back to our apartment at night.
Oh, the nights were the worst. You can’t sleep in a hospital. The lights, and the nurses, and the pumps beeping, and the loud voices in the hallway, and the trash cans being emptied with a bang. I would get Jane to sleep, her poor face paler than the pillow it lay on, a cord snaking out from her chest to a dripping bag on the pole beside the bad. I would watch her sleeping and feel grateful I had been given another day with her, and write about that day in a blank book that my friend Alice had given to me the week the nightmare began.
She knew I would need a place to write about what was happening.
That was one of the notebooks I found in this box today. Between the scrawled notes about which doctors had done what are snippets like this:
The other night her i.v. was beeping; she looked at the pump and announced, “Fusion complete.” Gave “timentin” to her baby. Told Daddy he was her best friend.
6:15 a.m. wake up, realize Jane has soaked through all the bedding, both sheets beneath and blankets above. Change her, and then the nurse comes in to say she’s running 100.1 axillary, so could I give her some Feverall. Yeah, right. Try for ten minutes, she pukes up the one sip she swallows, we give up. Jane is now wide awake. I turn on Sesame Street and doze while she plays Barnyard Bingo, using the curve of my body as a recliner.
Or this one, dated 9/27/97, which follows a lull:
This has been a tough month. Not just all the inpatient time, but also the deaths of three of our little friends here: Eric, Jen, and Tiffany.
I don’t want to write about that.
It’s official now that I’ll be writing the Martha books. And Jane herself is exploding with new words and new skills. In clinic one day, the two of us sat eating lunch by ourselves. Jane looked up at me and said, “Me have really good time with you, Mommy.” Melt…
When HarperCollins offered me the books, I wondered if I could possibly manage to write them with all that we were going through. But the nights in the hospital were so agonizingly long. Better to work, I thought, than to sit there marking the hours by the dripping of the drugs into my baby’s veins. When you spend a lot of time in a hospital, there’s a real danger of getting broody. The worry can consume you. You have to forcefully turn your thoughts to something else. Work helps, if it’s the right work.
Martha was. The folks at Harper sent me a laptop to use at the hospital—awfully sporting of them. And they lined up a researcher in Scotland to hunt up answers to my forty thousand questions, since obviously I couldn’t get out to hunt them up myself. I spent the next two months poring over notes in the dim room while Jane slept the sleep of the drugged, and one night I took a deep breath and started to type.
Loch Caraid was a small blue lake tucked into a Scottish mountain valley. On its shore were a half dozen cottages that had no names and one stately house that did. It was called the Stone House…
…and I was off.
Oh, what Martha gave me during those long, hard nights! Highlands is the story of a little girl running freely on the grass, rolling down hills, poking in the corners of the kitchen, getting into scrapes, doing all the things I was afraid my own wee lass might never have the chance to do. My friend Elizabeth, herself a cancer survivor, recently pointed out to me that I talk a lot about Martha’s hair in that book. She is always shaking her heavy curls off her shoulders. Every last wisp of Jane’s hair was gone by the time I started writing, all those fine golden strands swept away by a janitor’s push-broom.
I found my Highlands notebook in the same box today, crammed with descriptions of houses and furniture and meals and customs. There’s a line about how floorboards often had holes in them near one end, holes bored at the lumberyard so that a rope could be threaded through to keep them stacked for the journey on rough, rutted tracks that could hardly be called roads. Next to this interesting snippet I scribbled a large star and the words, “COULD BE FUN—HAVE MARTHA DROP SOMETHING THROUGH HOLE TO ROOM BELOW.” In the years that followed, I wrote three different chapters involving Martha dropping something through a floorboard hole: twice I had her tormenting a guest by raining nuts upon his wig, and twice I axed the episode as not quite in character. I think somewhere in Highlands she pokes her toe into a hole while her mother is brushing her hair; and in Heather Hills I finally used the floorboard hole to full advantage when she desperately needed to get a message to young Lew Tucker, the blacksmith’s son, in the kitchen below.
I wrote Heather Hills here, in Virginia, and it’s strange to remember the details that took root way back in that hospital room in New York.
More from the hospital book:
November 1997—lost first broviac, got new one.
—finished last IV chemo on Thanksgiving Day
—we are pregnant!
December—Bone marrow biopsy on 12/6—still in remission.
Feb 98—Rocky. J has fever. Low potassium. Is utterly lethargic.
4/23, pretty bad again. Not wanting to walk. I asked Dr. R. if we could d/c the Dapsone. She agreed, somewhat doubtfully.
3rd day off Dapsone. Jane jumped out of bed and said, “I would like Daddy’s leftover gnocchi for breakfast.” !! First voluntary mobility in three weeks. We were floored. She devoured a dishful, then two big slices of raisin bread.
Best moment by far—I watched her running in circles on our bed, holding a pair of underwear in one hand, a piece of raisin bread in the other [INTERJECTION: WHAT IS IT WITH THE RAISIN BREAD?], singing:
I’ll never stop dancing
I’ll never stop eating
I’ll never stop doing either of these things.
I’m having fun
Whoa, I’m having fun
How do I express how moved I was by this, and how grateful?
5/20 She has begun to tell long imagined stories. Is also very excited about “her” baby and often kisses my tummy and talks to it.
She saw the word “Kalamazoo” in a book and said, “Look, Mommy! Zoo!”
Oh, and she’s got her curls back.
Fun Fun Fun
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