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September 27, 2018

Young Cancer Patient Finds Answers (and “Rainbows”) at Mayo Clinic

By In the Loop

Alley Downing has had a difficult journey since being diagnosed with and treated for Hodgkin's lymphoma. But there have also been "bright spots" along the way.


Alley Downing was marking a milestone. She'd finished her last chemotherapy treatment, and to celebrate, she got a crown: a beautiful henna design that rested where her hair had been just months earlier.

The whirlwind journey to that royal ending started in April, when Alley began to feel tired. Really tired. Then she came home from track day at her school and told her mother, Tamra, that it hurt to take a breath. A trip to urgent care suggested inflammation of Alley's trachea, but the medication she was prescribed didn't help, and soon Alley was experiencing additional symptoms. She had migraines. Dizziness. Low blood pressure. More doctor appointments led to more medications, but no resolution. When Alley discovered an enlarged lymph node above her collar bone, her mother – who'd worked as a nurse and physician assistant before her children were born — started to panic.

"My alarm bells went off like crazy," Tamra tells us. By this time, Alley was also having fevers and night sweats, and had lost five pounds in just a week. Yet doctors near the family's Chicago-area home insisted Alley's symptoms were likely related to a virus.

"I was feeling desperate," Tamra says. "I felt it in my bones that something was wrong. My daughter felt it in her bones that something was wrong. But the whole time, no one was listening."

That changed in early June, when Tamra brought Alley to Mayo Clinic's Rochester campus. Within three days, doctors had a preliminary diagnosis: Hodgkin's lymphoma. "At Mayo Clinic, I finally had doctors who listened to me and took my concerns seriously," Tamra says. "I was so thankful we came up here." Additional testing confirmed the diagnosis, and pediatric hematologist/oncologist Vilmarie Rodriguez, M.D., laid out a plan for treatment, which included surgery and chemotherapy.

Treatment wasn't easy. Chemotherapy often left Alley feeling exhausted and nauseated. But there were bright spots along the way. One of them was Brighter Tomorrows, a nonprofit organization that supports families affected by childhood cancer. Another "cancer mom" invited Tamra and Alley to one of the group's monthly meetings. "Alley wasn't feeling well, so I told her we'd only stay for five minutes," Tamra says. "We brought her in in a wheelchair. She felt horrible. She was sad. She was shy. But a group of girls came up to her like they'd known her forever. They were so encouraging to her, so loving to her. By the end of the night she was out of the wheelchair, having fun and making friends. She had a smile on her face."

Tamra says she "fell in love" with Brighter Tomorrows that night. "It has been a godsend to me," she says. "The people there have walked in our shoes. The support the organization gives is unbelievable."

Also unbelievable, Tamra says, is Mayo Clinic, from the care providers who listen, to the art and music therapy programs that also put smiles on Alley's face. (You can see that smile — and hear Alley sing — in this video). "Throughout this experience, there have been rainbows," Tamra tells us. "It's been a horrible experience, but a beautiful one."

It's an experience that continues. "Treatment is over and we're so happy about that, but it's not like this ends for her," Tamra says. Alley still has side effects from treatment, including significant pain and weakness in her legs. Since chemotherapy can affect fertility, Alley may have difficulty someday becoming pregnant, and she had one of her ovaries removed and preserved in case she does. And though test results show she's now cancer-free, Alley will need to be monitored for the rest of her life to make sure that remains the case. "Cancer is devastating for anybody," Tamra says. "But when you're 14, or 4, or 4 months, it's a completely different thing."

That's something that has changed Alley's perspective on life. "I feel like every day you should be thankful," she tells us. "Live every day like it's your last."

You can see Alley's art, including work she created during her treatment, here. Then be sure to leave a comment below before you use the social media tools atop this page to share this story with others.


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Tags: Dr. Vilmarie Rodriguez, Hodgkin's Lymphoma, Mayo Clinic in Rochester, Patient Stories

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