She is on the slide. Then she is on the swings. Then she is standing on a tall, fake rock, declaring, “I’m on top of the world!”
Her mother, Lindsay Revenew, watches and smiles.
“She’s been through a lot at 10 years old,” she says.
The first time she saw her daughter, in those moments after she gave birth, she didn’t understand why the medical staff was scrambling around her and saying, “Oh, my gosh.”
“My baby is beautiful,” she recalls thinking.
She still thinks that. But eventually, she too could see how a tumor was distorting her daughter’s face, pulling down the right half, as if gravity suddenly shifted its strength on that side.
Eventually, she watched that tumor cause her daughter’s right lid to drape more and more over an eye that could no longer see, and then remain shut.
Eventually, she prepared a PowerPoint presentation so she could help Autumn explain to her classmates why she looked different from them but was in other ways the same.
“When kids are mean, and they do make fun of her, that’s when she has the sad days,” Lindsay says. “That’s when she says, ‘Mom, I don’t want to be different’ or ‘Mom, I wish my eye was open.’ But then she has other days when she says, ‘Mom, it’s kind of cool that I’m always winking at everyone.’ ”
The first time they talked to her class, Autumn was in kindergarten, and the girl with caramel-colored hair couldn’t explain much more about her condition beyond, “I was born this way.” When school began this year, Autumn spoke on her own to her fifth-grade class virtually, while her mom sat nearby, out of the screen’s frame.
Autumn told her new classmates that she was born with neurofibromatosis type 1, or NF1, and that it can cause children to develop tumors on various parts of their bodies.
She also explained why she sometimes has to miss school to head from her home in Kansas to Maryland.
Autumn is one of 50 children who have been participating in a clinical trial that has taken place on the Bethesda campus of the National Institutes of Health since 2015.
When it started, the children ranged in age from 3 to 17, lived in states across the country and faced different medical concerns. But they shared this: All had inoperable tumors as a result of NF1 and no option for treatment.
That has since changed.
In recent months, the trial has given the NF1 community something that has long been elusive: proven results and hope.
Right now, the pandemic has us as a society holding our collective breath, waiting for the medical community to produce a vaccine for the novel coronavirus that will allow us to return to the lives we knew just months ago. For many of us, it’s the first time we’ve had to think about the people behind those scientific efforts. It’s the first time we’ve had to feel the weight of the wait for results.
But for so many of the families who travel to NIH for clinical trials and studies, the slow tick of that clock has long been their reality.
Brigitte Widemann, chief of the Pediatric Oncology Branch for the Center for Cancer Research at the National Cancer Institute, started conducting clinical trials for NF1 in 2001. But none resulted in a proven way to shrink the tumors or stop their growth.
“Our breakthrough came with this trial,” Widemann says when we speak over the phone on a recent afternoon. She recalls the moment medical tests confirmed what her eyes could see: that one child’s tumor had gotten smaller. “That was just a tremendous moment. We had never seen that before. From there, we saw other shrinkage in other tumors.”
While the tumors are not cancerous, they can cause serious health concerns, such as disfigurement or blindness, and can lead to amputations. They can also eventually become cancerous.
About 70 percent of the children who participated in the trial have seen some tumor shrinkage. Many also reported feeling less pain and the ability to do things they couldn’t before.
One boy who had a large tumor on his arm and shoulder was able to wrestle for the first time with his sister.
Another boy, who had a tumor on his neck that threatened to block his airway, reported that it had grown less noticeable, to the point that people no longer asked him about it.
In March, the results of the trial were published in the New England Journal of Medicine. And in April, the FDA approved the medication selumetinib, which trial participants have been taking, as the first treatment for NF1.
The medication’s approval is “huge progress,” Widemann says, “and we will work to make more progress.”
She and Andrea Gross, who worked with her on the trial, say many questions remain, such as how long a person will have to stay on the medication and what might happen if a child started taking it before a tumor grew large. Also, not all the children in the trial saw successful results. Six experienced disease progression, and five stopped taking the medication because of side effects.
Both women, when talking about the medication, make a point to note that “it’s not a cure.” It’s a start. The hope is to ultimately find a way to make the tumors disappear.
Lindsay tracks the growth and shrinkage of Autumn’s tumor with a chart that uses dots to mark its weight over the years. They form the shape of a mountain range consisting of two medium mountains followed by a much larger one.
That spike in growth came when Autumn was temporarily taken off the trial.
Lindsay describes that time as one of the most terrifying for the family. Autumn’s tumor is wrapped around parts of her brain stem and her carotid artery, and the family doesn’t know what will happen when it runs out of room to grow.
Since returning to the trial in March, her tumor has shown a steady shrinkage.
“I’m sure she would have had a stroke by now” without the trial, Lindsay says. “I don’t know if she would be alive right now, honestly.”
Like other 10-year-old girls, Autumn loves pizza rolls, drawing comics and playing on her tablet and phone. That day on the playground at the Children’s Inn at NIH — a nonprofit that houses families who participate in clinical trials and has become a second home to Autumn — she clicks on the app “Littlest Pet Shop.”
“Oh, a lot of them need caring,” she says of the animated animals on her screen, before she starts tapping away to give each what it needs.
When Lindsay thinks about what she wants for her daughter, it looks a lot like what we witness that day. A girl who doesn’t feel the need to hide any parts of herself. A girl who, without hesitation or a glance around, kicks off her silver ballet slippers to twirl on a piece of playground equipment.
A girl who sees a camera pointed at her and starts posing, unafraid of what the lens might capture.
“I really want her to feel safe and feel proud of herself,” Lindsay says. “I want her to feel normal. I want her to feel she is no different and deserves no less than anyone around us.”
She wants her to feel free to dart, always, in any direction she chooses.
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