Category Archives: Leukemia

Books, Family, Leukemia, Robert's Snow

Blogging for a Cure: Robert’s Snow and David Macaulay

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"There are things I think people have a need to know . . . I want them
to look around more — to pay attention to the world around them, to
take an extra moment to look at things, to think about things."

—David Macauley

Ten and a half years ago, when our 21-month-old daughter was diagnosed with Acute Lymphoblastic Leukemia, Scott and I were told to be thankful it was ALL and not some other kind of cancer. We were thankful, strange as it was to feel glad about anything related to a cancer diagnosis. We knew that the prognosis was better for kids with ALL than with other types of cancer.

But we were a full week into treatment before we found out how very good the prognosis actually was. Jane had started the week with two complete blood exchanges, purging her body of all the cancerous white blood cells that had escaped her bone marrow and were coursing through her tiny veins. She had made it through the first terrible week of chemotherapy—the fevers, the vomiting, the countless needle sticks. One week down, years to go. The head of the hem/onc department came in to meet us, and he asked us, rather professorially, what our goal was with Jane’s treatment.

"Remission?" I asked. He smiled in obvious amusement.

"Yes, of course," he said, shrugging. "We will get her into remission, and very soon. But that is just the beginning. Our goal is to keep her in remission. Our goal is a cure."

Scott and I stared at him. I started to cry. A week earlier, during the nightmarish hour between leaving our pediatrician’s office and arriving, per his urgent instructions, at the children’s hospital emergency room, we had swung by our apartment to restock the diaper bag. On the way out the door, I had grabbed an old (but not that old) medical reference book we happened to have on the shelf. In the car I read aloud to Scott in horror. If the pediatrician was right, if the baby had leukemia, the best-case scenario, according to this tome, was a five-to-seven-year survival rate.

Until that moment when the Chief Oncologist said the word "cure," Scott and I had believed our best hope at the end of putting Jane through the torture of chemotherapy was that she would live to see her ninth birthday.

"I didn’t know," I croaked. "I didn’t know there was a cure for cancer."

"For this kind, there is," said the doctor.

We all know that ALL is but one of the many, many kinds of cancer. The treatment—the cure—doesn’t work for everyone, but it works for a lot of people, especially children. Ten years later, Jane is still in remission and spilling joy everywhere she goes. If you find joy on this blog, she is a large part of the reason why. I threw that old medical reference book in the trash long ago, because the hard work of doctors and researchers, and the courage of patients who came before my Jane, had rendered its somber pronouncements inaccurate.

At the Dana-Farber Cancer Institute, researchers are working on more, and better, cures. This research is paid for by the Jimmy Fund, named after a 12-year-old cancer patient who made a radio appeal in 1948 that brought in some $200,000 in funding for research that first year. Jimmy, like Jane, survived his cancer. It’s possible that Jane survived because of breakthroughs in chemotherapy protocols developed by the doctors at Dana-Farber—I don’t have any idea who all the people were whose work saved my daughter’s life. I only know that I am thankful to the very marrow of my bones. And hers.

Children’s book illustrator Grace Lin wrote a picture book called Robert’s Snow during her husband’s fight against bone cancer. Robert Mercer was diagnosed with Ewing’s sarcoma just months after he and Grace were married. Grace tells the story on the Robert’s Snow site:

Nine months later, Robert was declared cancer-free. "Robert’s Snow"
was accepted for publication. We felt that our good luck had finally
arrived. But, in March 2004, Robert’s cancer returned. We were
devastated. Our doctor told us that Robert’s best chance for long-term
survival was a breakthrough in cancer research.

So we decided to help the doctors the best we could. Because
"Robert’s Snow" had meant so much to us the first time, we decided to
use it as an inspiration for a fundraiser. We recruited children’s book
artists to paint wooden snowflakes and auctioned them off — the
proceeds going to cancer research at Dana-Farber Cancer Institute.

The response was tremendous. "Robert’s Snow: for Cancer’s Cure" snowballed greater than we ever dreamed.

I am grieved to say that Robert Mercer passed away this summer. But Robert’s Snow lives on. To date, the Robert’s Snow snowflake auctions have raised over $200,000 for the Dana-Farber Cancer Institute. This year’s auctions will begin in November, and you can bid on a stunning array of snowflakes illustrated by some of the most talented artists in children’s books.

Starting last week, bloggers all over the kidlitosphere joined in an effort to spread awareness of the upcoming Robert’s Snow auctions. Encouraged by Jules and Eisha of Seven Impossible Things Before Breakfast, who dreamed up the "Blogging for a Cure" event, dozens of bloggers are featuring snowflakes by some of the participating illustrators. There are many, many more snowflakes being auctioned in addition to the ones you will see in these posts. I encourage you to go explore the auction site and feast your eyes on all these beautiful pieces of art.

Here is one of them. What an honor it is to be able to feature David Macaulay’s snowflake here at Bonny Glen. I mean, David Macaulay! Caldecott winner! Author of The Way Things Work! The man who taught Jane what a laser is, and how parking meters work, and what is the difference between nuclear fission and nuclear fusion!

David Macaulay painted a snowflake for the Robert’s Snow auction. Here it is, front and back, reproduced here with permission:

039_snowflake

Don’t you love that sweet, pensive face?

Ten years ago, when Jane was diagnosed, David Macauley’s books already had pride of place on our living room shelf. I first saw The Way Things Work in the children’s bookstore I worked at during grad school. I bought a copy with my employee discount. I hoped to have children one day, lots of them, and I knew they’d want to know how stuff worked.

Now here it is 2007 and I’ve got those children, a lot of them!, and they are indeed full of ‘satiable curtiosities. David Macauley’s books have helped show them the world. Sit down with one of his black-and-white "Building Books" masterpieces, and you’re likely to spend the whole rest of the day immersed in the details of another corner of the world. Here are some of the books he wrote and illustrated, a homeschooler’s dream library:

City: A Story of Roman Planning and Construction
Cathedral
Pyramid
Mosque
Ship
Underground
Mill

Cathedral    Mill   Pyramid

He also wrote the Caldecott winner Black and White, a stunner of a picture book, as well as the charming Angelo.

There will be three rounds of snowflake auctions, beginning November 19th. If you’d like to see David Macauley’s snowflake hanging on your Christmas tree or in your winter window, it will be sold in the second auction, which starts on November 26th. (Trivia time: one of the other snowflakes in that auction was made by the illustrator of one of my books. Do you know who?)

Many thanks to Mr. Macaulay and all the illustrators who donated these gorgeous works of art for the Robert’s Snow auction, to Grace Lin for founding the event (view her own snowflake here), and to Jules and Eisha for organizing the Blogging for a Cure effort. And many, many thanks to the folks of the Dana-Farber Institute for continuing to work toward cures for other people like Jane.

Here are the rest of this week’s Blogging for a Cure snowflake features (thank you, Tricia and Jen, for the list!):

Monday, October 22

Tuesday, October 23

Wednesday, October 24

Thursday, October 25

Friday, October 26

Saturday, October 27

Sunday, October 28

Related links:

Blogging for a Cure page at Seven Impossible Things Before Breakfast.

David Macauley page at Houghton Mifflin.

Robert’s Snow main page.

Main auction page.

David Macauley’s snowflake auction page.

Family Adventures, Leukemia, Little House

Unearthed: The Notebooks

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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 thank God that I had been given another day with her, and write about that day in a blank book that 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. Prayer helps. 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. Elizabeth 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 many floorboards 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’m dancing
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.

Family Adventures, Leukemia, Who We Are

Giving Thanks

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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 to God 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.