Aislynn’s Angels give her wings

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

She calls them her angels – Aislynn’s Angels. They are her team at Riley Children’s Health, the people who have been by her side for 10 years as she battles a cruel, debilitating disease that will one day take her life.

But she still has life to live and love to give, and that’s what Aislynn Ball is doing, even as she sits in a recliner in her Fishers home with rescue kitty Agatha on her lap and her parents, Steve and Ashleigh Ball, nearby.

Today is a good day, Aislynn says, because she gets to tell her story in her own words, sharing what her healthcare team, her family and her faith mean to her.

She has put off her pain medications so she can be alert for this interview, but she knows that later in the day she will need to sleep.

RARE GENETIC DISEASE

Aislynn is 23 now, but she was in junior high when she first started coming to Riley, with her parents desperate for a plan to attack the rare genetic disease that was stealing their little girl away, bit by bit.

It was actually a trip to the dentist and orthodontist during intermediate school that led to a diagnosis, Ashleigh said.

“Nothing ever showed up as a warning bell until she needed braces at 11.”

An oral surgeon found and removed small tumors in her gums, but follow-up scans detected more. While what they saw was rare, they reasoned it happens in some kids.

But after learning about other issues Aislynn suffered, including a cyst (or osteoma) on her head and unexplained pain while participating in cross-country, the girl’s dentist and oral surgeon put their own heads together on the golf course one day.

“They told us they thought Aislynn has a very rare disease that they had never seen in a patient but had learned about in dental school and she needed genetic testing.”

The Balls sought testing and diagnosis, as well as a plan of care, at other hospitals, but they didn’t really find what they were looking for until they landed at Riley, both Ashleigh and Aislynn said.

What they found was a second family. And a place where Aislynn felt safe.

“As scary as things have gotten for Aislynn her multiple times in the ICU, all the things she’s been through, she feels safe and supported there, which is huge for us,” Ashleigh said.

PAINFUL TUMORS

Aislynn suffers from Gardner syndrome, which can cause many symptoms, from extra teeth and noncancerous but painful bone tumors (desmoid tumors) to hundreds of colon polyps that can become colon cancer.

While desmoid tumors are not generally cancerous, they can be very aggressive, growing into nearby tissue and organs.

In Aislynn, they’ve attacked her neck, shoulders and back. In perhaps the cruelest twist, surgery to remove them can actually result in them growing back with a vengeance, her mom said.

“They are incredibly painful, excruciating,” Ashleigh Ball said. “They are rock hard.”

Right now, one of those tumors is wrapped around Aislynn’s neck, encroaching on her esophagus and trachea. Her head leans to the right, basically resting on her shoulder. Surgery is not an option. She can still eat and take oral medications, but she requires oxygen 24/7 and uses a BiPap machine at night to help her breathe.

First identified in 1951, the syndrome in its more advanced form is considered a terminal diagnosis.

For the past decade, Aislynn has been treated by oncology – to manage the tumors – and palliative care – to manage the pain – at Riley.

She has lost count of the chemotherapy regimens, the radiation courses, the surgeries and the drug trials she has endured, all in a bid to slow, if not stop, the tumor growth.

Through it all, she persevered through school, graduating with her Fishers High School class on time. She was accepted to Ball State University, but after the first semester of online classes, she had to step away. Fighting the disease was consuming all of her energy.

It has taken an enormous toll on the young woman, who had wanted to become a nurse before the disease robbed her of her independence.

FEELING HEARD

Yet it hasn’t taken her voice, and she has used that voice over the past decade to tell Riley doctors and nurses what she is feeling and fearing.

What has impressed her most is that they have listened.

“They were the first doctors who ever listened to me,” Aislynn said. “It’s exciting when you finally meet those doctors, those nurses, those people who listen to you.”

She holds a special place in her heart for her oncology team, especially Dr. Michael Ferguson, and her palliative care team.

“Amy Haskamp has been with me since the very beginning of my move over to Riley, so she knows me really well,” Aislynn said. “She knows exactly what to do.”

Haskamp, advanced practice nurse for the palliative care team at Riley, describes her patient as “an extraordinary human.”

“Aislynn is such an amazingly strong woman,” Haskamp said. “She has spent much of her life in pain, although she rarely lets others know this. She shares a smile and asks others about their day or lives … but will allow herself to be vulnerable with us, as she knows we need to understand her pain to help her as best as we can. She has taught me much over the past 10 years, about managing pain, but also how to face adversity in life.”

Last year, Aislynn decided she wanted to forgo any more invasive treatment. No more drug trials, no more intervention.

“I don’t want to feel miserable all the time,” she said.

She wants to be present in body and spirit for family movie nights, birthday parties and holiday celebrations with her parents and two brothers as long as possible, even when that means skipping a dose of the pain medication that makes her drowsy.

“Going out on a good note,” she said. “Spending time with my family. That’s what I have chosen.”

WAITING FOR BUTTERFLIES

She is touched by the work her father did to create a butterfly garden in their backyard, researching and planting the flowers and bushes that are meant to attract the delicate creatures that she yearns to see from her bedroom window.

“I have loved flowers and butterflies since I was little,” she said. “I can remember running around in my grandma’s backyard chasing the butterflies and smelling the flowers. My dad decided he wanted to make me a garden – Aislynn’s butterfly garden.”

Quite a feat for a man who acknowledges he knew nothing about gardening.

“I normally have a black thumb,” the retired Hamilton County Sheriff’s detective said, as he showed off the colorful flowers and butterfly bushes he planted a few weeks earlier.

But he is determined to succeed at this, not only to spread joy to his daughter while she is here, but to have a place to remember her when she is gone.

“We watch for butterflies every day,” Aislynn said. “Dad goes out every day and takes pictures of all the flowers and sends them to my phone because I can’t walk (outside) very well.”

The two also share a love of roller coasters, though it’s been years since they’ve been able to ride them together.

“She’s my roller coaster buddy,” Steve said, recalling how they would go up to Cedar Point and he would push her in a wheelchair around the park. “But when the tumors started infiltrating her neck, we couldn’t do it anymore.”

Now, they play Words with Friends, watch police shows and talk about butterflies.

ANGELS AT WORK

Palliative care keeps her as comfortable as possible, while Aislynn holds off on hospice care until the day she is no longer able to swallow, to speak, to communicate.

“We are in awe of her level of pain tolerance and the sacrifices she makes to be with us,” her mom said.

“I am so honored to be her mother. Her resilience and her bravery in the face of everything, and she has never lost her faith. She has never lost her love for life and her love for all the people in her life, not just her family but her Riley family. She calls them her angels,” Ashleigh said, adding, “I wish I could tell the world how incredible Riley is. I know that I would not have my girl here with us right now if it wasn’t for them.”

The palliative care team has been a lifeline for the family, she said.

“It is about pain management but so much more. It is about the special people who are part of that team. They have sometimes been able to hear Aislynn better than I have. In the 10 years that she’s been on this journey with Riley, I’ve never had a moment of feeling like I wasn’t heard or she wasn’t heard.”

Even now, as Aislynn carefully articulates her thoughts while her pain builds, she counts her blessings.

“My faith is the number one thing that has kept me going all these years,” she said. “I promised God that I would walk this path he set out for me. Even though I don’t know what I’m meant to do or what he put me here for, I know I can always rely on him …”

Her parents marvel at her inner strength.

“I admire her faith,” Ashleigh said. “As her mom, I say, “Why?” but she does not question it.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org