In the end, little Alexandra ran out of wishes.
She was too sick to go to Disney World, where the Make-a-Wish Foundation was happy to send her with her family. Going on a toy-shopping spree held no allure. She could no longer see. What about a garden? her parents wondered. It would be a place where they could sit with Alexandra in the time she had left and where they could go after she was gone to remember her, though they knew even then that they would remember her everywhere, always.
But on the day ground was to be broken for the garden at their Laytonsville home, Alexandra died. She was 4.
“I feel like I’m having an out-of-body experience where I’m talking about my life,” says Jennifer Cullen Meyer, Alexandra’s mother.
We’re in a Bethesda coffee shop. The conversation is like so many I have at this time of year when I write about Children’s Hospital, except for this: There was no miracle for Alexandra.
Her off-balance gait was enough of a red flag to prompt a visit to the pediatrician. The diagnosis was medulloblastoma, a malignant tumor of the brain. Alexandra was whisked to Children’s National Medical Center, where she had surgery to remove the tumor, then three cycles of chemotherapy over eight weeks. That was followed by a stay at the MD Anderson Cancer Center in Houston for proton radiation therapy.
In the end, the tumor proved too strong. Alexandra died April 6, 13 months after the cancer was diagnosed.
Since then, Jennifer has been a strong advocate for research into therapies to cure childhood cancers. Most chemotherapy regimens for children, she points out, use altered dosages of drugs designed for adults. She’s testified twice on Capitol Hill and fears that sequestration — the “fiscal cliff” — will decimate research money.
Many people in her situation, I point out to her, would want to run as far as possible from cancer, not to talk about it whenever possible.
“I feel like this awful situation has become an enormous responsibility to make sure that this gets better,” Jennifer says. “I think, honestly, it gives me a sense of purpose. If I’m not doing something for this, I start getting fidgety and sad again. It just keeps my mind very busy. . . . This is now my mission. It’s a crusade.”
Most people, Jennifer says, barely think of cancer in children. She didn’t, despite being an epidemiologist studying prostate cancer. She remembers once being handed a flier for a pediatric cancer hospital and thinking,“This is so sad, but thank goodness this doesn’t happen to many people.”
Jennifer adds: “I tucked away that thought too quickly. I think the problem is all of us, we tuck it away too quickly. I don’t think people ever go there fully. I didn’t go there fully when I looked at that flier. I think that’s where the harm is in not being an advocate.”
Jennifer, her husband, Reginald Meyer, and Alexandra’s older brother, Samuel, now 7, were touched by many kindnesses. An artist volunteered to paint Alexandra’s room with Tinkerbell designs. Their church, St. Bartholomew’s in Bethesda, was a source of strength.
“Children’s Hospital was good to us, most importantly,” Jennifer says.
On the day it became clear that Alexandra wouldn’t make it, a doctor the family barely knew sat and cried with them.
And after Alexandra died, a local firm, Denchfield Landscaping, donated its time and materials to build her memorial garden. It features a weeping cherry tree, a patio, a ceramic handprint from Alexandra and a plaque with a lyric from “Barking at the Moon,” a song from one of her favorite movies, “Bolt.”
“There is no home like the one you’ve got ’cause that home belongs to you,” it reads.
“The first thing I wanted to do was just sit in that Tinkerbell bedroom and be around her stuff,” Jennifer says. “I can’t imagine not keeping that room that way or moving or living in a different house. Because she died in that house and a piece of her is with us always.”
Alexandra’s parents have insurance. Not every family whose child has cancer is as fortunate. But even those who don’t need not worry that they will be turned away from Children’s National Medical Center. That’s because it treats everyone, regardless of their ability to pay.
Children’s is able to do that because of donations from readers such as you. For more than 60 years readers of The Post have supported the hospital’s uncompensated care fund.
Won’t you please make a tax-deductible donation? Go to www.childrensnational.org/washingtonpost or send a check (payable to Children’s Hospital) to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.
For previous columns go to washingtonpost.com/johnkelly.