ADVANCING CHILDHOOD KIDNEY CANCER RESEARCH IN EMMA’S MEMORY
Emma Jordon
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The Emma Jordon Kidz Fighting Cancer Foundation started out small, much like the little girl with a big heart who inspired everyone she knew with her fearless spunk and kindness. The Virginia-based foundation has donated more than $120,000 to Children’s Oncology Group research over the last decade, advancing studies on the biology of tumors and paving the way to better treatments and cure rates.
PHOTOS COURTESY OF EMMA'S FAMILY
Emma Jordon: Tiny, mighty force of courage & kindness
There was no stopping Emma Jordon — even when kidney cancer made it a bit harder to do her favorite things: ballet, playing princess with her besties, cheerleading at her brothers’ football and lacrosse games, and spending time with her cousins in Kentucky. In PE, she was always the first to climb the rock wall. She’d leave her blonde wig at home those days, wearing a ball cap instead so she could go all out. “You really just couldn’t hold her back,” her father, Steve Jordon says with a smile.
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Nothing slowed her down much in the first few years of her life, aside from occasional bouts of illness that seemed like typical childhood viruses. Then one day when she was 5, she landed in the hospital with a rapidly swelling abdomen. Scans revealed a softball-sized mass on one of her kidneys, later diagnosed as a Wilms tumor.
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“The kids had never met anyone with cancer, so we explained it in terms they would understand,” Emma’s mom, Elena Jordon, recalls. “We told them Emma had a mass called Wilms tumor on her kidney and she would need medicine called chemotherapy to get better.” Wilms tumors are rare, yet also the most common type of renal cancer in children, accounting for about 4% of all pediatric cancers. Wilms tumor cells typically lie dormant for a long time, then suddenly start rapidly dividing, causing the tumor to grow quickly. |
Emma and Family - Spring 2007
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Emma went in for surgery, and her tumor turned out to be too big and too close to large blood vessels in her kidney to be removed right away. But on a cellular level, the tumor had “favorable histology,” with fairly normal-looking cells — not too big or distorted in shape. As Emma progressed through treatment — chemotherapy, radiation, then a second surgery to remove her left kidney and tumor — reassurances like If a child gets cancer, this is the kind of cancer you want, because survival rates are so high kept the Jordons hopeful. So did Emma.
Emma running in the Bluegrass Games, July 2007
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“She had a strong faith,” her mom remembers. “She truly believed — we all believed that she would get better.” Sometimes tumors with favorable histology morph to anaplastic, with cells varying greatly in size and shape. After her last dose of chemotherapy, scans showed she had a new tumor. They tried a stem cell transplant, and two months later, scans showed no evidence of disease. Then she relapsed again, with anaplastic tumors throughout her abdomen. |
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The Jordons, who live in Fairfax Station, Virginia, met with researchers at the National Institutes of Health, which was running some clinical trials on experimental drugs. But the drugs were so strong, and Emma’s system had weakened so much over the past year and a half — chemo, radiation, surgery — her system could not have tolerated more intense treatment. “They told us there was nothing they could do,” Elena says. |
Emma with her dad and brothers after the Port to Fort Run.
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Emma spent the final days of her life on a Make-a-Wish family trip to Disney World, two weeks after she started second grade. She had insisted the whole family go, rather than having Disney princesses visit her at home. She wanted a getaway where her brothers Will, Zachary, and Sam could shake off the stress and sadness of cancer and have fun.
“She was fiercely protective of them, as they were of her,” Elena says. “Emma’s battle with cancer was our whole family’s battle.”
“She was fiercely protective of them, as they were of her,” Elena says. “Emma’s battle with cancer was our whole family’s battle.”
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Carrying on for Emma, funding the quest for a cure Not long after Emma passed away, her family formed a foundation in her name, determined to channel her energy, pluck, and optimism to help researchers make strides toward a cure. Since then, the Emma Jordon Kidz Fighting Cancer Foundation has donated more than $120,000 to Children’s Oncology Group research — most recently to study fragments of DNA that Wilms tumors shed in the blood of children with the kind of renal cancer Emma had. |
Emma in isolation at Children's National in 2008.
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“This kind of research wasn’t available when Emma was going through treatment,” Elena explains. “It’s groundbreaking … and so beneficial to patients who are diagnosed today.”
All cells release tiny fragments of DNA into the bloodstream. It’s part of the normal process of cells dying and being replaced by new ones. The DNA that cancer cells release is called circulating tumor DNA (ctDNA). It can help doctors detect and diagnose cancer, plan treatment, and gauge how well treatment is working over time.
All cells release tiny fragments of DNA into the bloodstream. It’s part of the normal process of cells dying and being replaced by new ones. The DNA that cancer cells release is called circulating tumor DNA (ctDNA). It can help doctors detect and diagnose cancer, plan treatment, and gauge how well treatment is working over time.
Measuring the amount of ctDNA in a patient’s blood sheds light on how well chemotherapy is working. Tumors release less ctDNA in the blood when they shrink in size — whether from chemotherapy or surgery. When chemo isn’t working, and tumors keep growing, they release more ctDNA. Researchers also learn a lot by tracking how the cellular structure of ctDNA changes over time.
“Mutations in ctDNA also can help us better risk-classify tumors to give patients the appropriate amount of therapy — not too much, not too little — to achieve a cure,” says Nicholas Cost, MD, a urologic oncology surgeon at Children’s Hospital Colorado and Chair of the COG Renal Tumor Committee.
“Mutations in ctDNA also can help us better risk-classify tumors to give patients the appropriate amount of therapy — not too much, not too little — to achieve a cure,” says Nicholas Cost, MD, a urologic oncology surgeon at Children’s Hospital Colorado and Chair of the COG Renal Tumor Committee.
“Gold Out” for Childhood Cancer Awareness Month at South County High School
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Galvanizing Emma’s community
The Jordons do more than raise funds for childhood cancer research. They work just as hard to raise awareness about the toll cancer takes on kids and their families. At events they host, they share that while cancer is a leading cause of death for children in the United States, the National Cancer Institute allocates a very small percentage of its annual budget to pediatric research. “There’s just got to be a better way,” Steve says. The foundation hosted its first events in October 2008, a month after Emma passed away, raising funds at a series of lacrosse clinics in their hometown. |
They went on to organize “Gold Outs” for Childhood Cancer Awareness Month in September, with everyone in the stands at football games wearing gold T-shirts with the foundation’s logo, a hot pink and orange butterfly Emma once drew. Gold Outs have become a regular thing at South County High School volleyball, soccer, lacrosse, basketball, and other sporting events.
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“It’s pretty amazing to see the entire student body in our gold T-shirts,” Steve says. A retired U.S. Navy Captain, Steve Jordon leads Emma’s foundation as board President, along with Elena, who serves as Treasurer. The foundation has directed the vast majority of its giving to COG since 2014. “It means a lot to know that the funds we raise with our community are going to impact kids being diagnosed today,” Elena says. “COG is always researching. They’re always trying to find better therapies to treat children with cancer. Not just renal tumors, all cancers.” |
The stallion mascot at South County High School went Gold for Emma too.
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