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Adalyn’s Story of Courage and Community

  December 11, 2023

For Melissa and Evan Funk, Steinbach, Man. is home. It’s where they grew up, where they raise their own family—daughters Adalyn, five years old, and Raya, four years old—and where they run a successful serveware company, Lynn & Liana Designs.

Given their busy schedule, which involves frequent business travel, they decided to homeschool Adalyn when she started kindergarten this fall.

“Somehow, it just worked out so miraculously that we homeschooled her, because it was mid-September when we found out she had a brain tumour,” says Melissa.

A mother’s instinct

Adalyn FunkCall it a mother’s instinct, but Melissa says she could tell something wasn’t right with her “bubbly and energetic” daughter, who she describes as having a “big personality.”

“She started having random nausea,” Melissa says, adding the symptoms began early in the year. “It was only once a month or so, where she would just instantly feel like she had to puke. I thought, ‘Okay, that’s weird. It must be a food allergy or something.’ And then towards summer, it started becoming more consistent.”

Adalyn was in daycare at the time, and Melissa credits her daycare worker for helping to monitor symptoms.

It was near the end of summer when Adalyn’s headaches started.

“She would say, ‘My head hurts,’ and then she’d run to the bathroom and puke,” says Melissa. “I tracked all her symptoms and took her to her doctor. The doctor thought her symptoms might be related to a growth spurt or changing hormones and reassured me that even if something was growing in her brain, that it would take a long time to grow. He asked us to come back if symptoms got worse, which they definitely did.”

Four days later, Melissa drove Adalyn to the Health Sciences Centre’s (HSC’s) Children’s Emergency Department in Winnipeg, an hour away.

“I couldn’t handle it anymore,” Melissa says. “Adalyn was perfectly normal at that point, but I was so stressed thinking something was wrong.”

She’d researched Adalyn’s symptoms online, which is what led her to initially believe Adalyn might have a food allergy or anxiety.

“And then when the headaches started, I would search, ‘Instant onset headache and vomiting at the same time,’” Melissa says. “There were 10 different things it could have been, with a brain tumour being the worst-case scenario. I thought, ‘That makes a lot of sense.’”

Finding answers

Adalyn FunkWhen they met with the emergency room doctor, Melissa showed her the record of symptoms she’d been tracking.

“She ordered blood work and a CT scan right away,” Melissa says. “I wasn’t going to leave the hospital without Adalyn having a CT scan, so for the doctor to order it without me even asking or advocating for it—I knew at that point, it was probably pretty serious.”

The doctor told Melissa the CT scan results would come back within minutes, but Melissa wasn’t prepared to receive the results on her own. She called Evan, who was at home with their daughter, Raya, and asked the doctor not to give her the results until Evan could make it to the hospital. Melissa’s dad stayed with Raya, while Evan left to be with Melissa and Adalyn.

“Two minutes after he got there, the doctor came walking in,” Melissa says. “And Child Life staff, that help kids through trauma and explain medical stuff to them, came with a bunch of toys right behind the doctor.”

Child Life staff stayed with Adalyn while the doctor took Melissa and Evan to another room.

“She showed us the pictures, and yeah, there was a mass in her brain,” Evan says. “It was the worst moment of our lives.”

They didn’t know at that point if the tumour was malignant.

“It just looked like this big, massive thing in her head, and we didn’t know anything about brain tumours,” says Melissa. “Initially, we were like, ‘Okay, the clock is ticking, we have to count down until she’s gone.’”

The next day, a neurologist reassured them that Adalyn’s tumour was actually a very normal size and that in more cases than not, kids are successful in their recoveries.

“When you hear it’s a brain tumour, especially in a child, it triggers the worst thoughts,” says Melissa.

Adalyn was scheduled for surgery that week.

Dealing with the unknown

Adalyn Funk“The whole time leading up to surgery, Adalyn really struggled with the unknown,” says Melissa. “‘How are they going to do the surgery? What tools are they using? When is it going to happen?’ It was extremely challenging, because she was so worked up all the time.”

Their family relied on their faith and their community to get them through.

“We had probably 1,000 people praying at one point for a miracle, and for everything to go well,” says Melissa.

The night before Adalyn’s surgery, the family stayed at Ronald McDonald House in Winnipeg.

“We gave Adalyn pictures of the brain,” Melissa says. “She explained to us her knowledge of how the brain works, and then all of a sudden, she was just so calm. And she said, ‘I trust you.’

“It was such a powerful moment, when she was like, ‘Okay, whatever it is, I’ll let it be.’”

Melissa says her family was fortunate to have fantastic care from the HSC’s Children’s Hospital staff as well.

“I know the medical system often gets a bad rap,” Melissa says, “but we just had the best experience possible.”

Post-surgery life

Adalyn was released from the hospital one day earlier than expected, following her surgery.

Melissa says that physically, Adalyn’s recovery has gone very well. She’s had no issues walking or talking, though she has had a few temporary side effects from her surgery and medication.

Adalyn was given steroids to reduce swelling in her brain, which caused some water retention and an increase in her appetite.

“She would eat more in one sitting than her dad would eat in an entire day,” Melissa says. “She was eating three eggs, toast, cereal, and yogurt for her first breakfast, and she would have three breakfasts.”

While her eyes are healthy and she has normal vision, Adalyn has experienced strabismus, or crossed eyes, since her surgery. She’s been following up with an ophthalmologist, who is hopeful that her eyes will correct themselves eventually.

The family was recently given the good news that Adalyn’s tumour, a low-grade glioma called Pilocytic Astrocytoma, is non-malignant.

Most of it was removed during surgery, though doctors left a small piece on Adalyn’s brain stem as their attempt to remove it affected her heart rate and her blood pressure.

During Adalyn’s follow-up MRI, Melissa says doctors couldn’t see the small piece that was left behind.

“They weren’t sure if it was because of her healing, or if maybe it dissolved because they cut off the blood supply,” she says. “We’re hoping that’s the case.”

Adalyn ended up back in the hospital two weeks post-surgery, as she was vomiting again. However, there was still no sign of her tumour.

If her tumour has been fully removed, Melissa explains, there is a 99 per cent chance it will never grow back. If part of the tumour remains, there is a 10 to 15 per cent chance it could grow back.

“The odds are still really good,” Melissa says.

As Adalyn and her family return to their everyday lives following the whirlwind they’ve been through, Melissa says the challenge now is managing the trauma Adalyn’s been left with.

“In the hospital, we knew how to physically help her, and we knew what needed to be done for her to get healthy,” she says. “But now, we have this daughter whose personality has changed almost overnight and there is no roadmap for how to fix it.”

Finding support

Adalyn FunkAdalyn is in play therapy, while her parents have reached out to Brain Tumour Foundation of Canada for support and resources.

On Brain Cancer Awareness Day this year (Oct. 24, 2023), Melissa says she watched all of Brain Tumour Foundation of Canada’s stories—those from the organization and those re-posted from the brain tumour community.

“I followed all the parents I saw that had kids go through the same thing Adalyn went through,” she says. “I reached out to a few of them, and now we keep in contact.”

It was because of her newfound community that she heard of a local support group of parents who have been through medical trauma with their kids. Through this group, she’s met two other moms whose kids have the same neurologist as Adalyn.

She also connected with a woman, Kayla Krahn, while Adalyn was in the hospital. Kayla and Melissa, being close in age, bonded over the similarities between Kayla’s tumour and Adalyn’s tumour. In their talks, Melissa says she learned a lot about what Adalyn was experiencing and kindly, Kayla gifted her with Brain Tumour Foundation of Canada’s book, A Friend in Hope.

Melissa and Evan have documented Adalyn’s journey online as well. With written entries and pictures, they recounted Adalyn’s ordeal to keep family and friends updated, and to share a look back with Adalyn when she’s older.

“That was a game changer for us,” Melissa says. “Everyone was able to watch and read and know how to pray and support us.”

Giving back

Giving back has been another part of the family’s healing process.

Through their company, Melissa and Evan saw an opportunity to help others in similar situations.

“Every once in a while, we have these cheeseboards that have slight imperfections and we can’t sell them at regular price,” Melissa says. “We wanted to do a warehouse sale and sell those boards, while raising money for a good cause.”

They held their first warehouse sale in June, raising funds for a local organization, before Adalyn was diagnosed.

Following her diagnosis, they decided to donate a portion of their proceeds to Brain Tumour Foundation of Canada at the next warehouse sale.

More than 1,000 people attended, Melissa says, and were given the option to donate $5 to Brain Tumour Foundation of Canada at checkout. Lynn & Liana Designs matched every donation, raising an incredible $2,000 total.

Moving forward

Adalyn FunkAs they await Adalyn’s next MRI in January 2024, Melissa, Evan, and their girls are settling into their new normal.

Adalyn is back to homeschooling and daycare, though Melissa says she often has separation anxiety.

“She has a hard time being away from me,” Melissa says, “so we FaceTime throughout the day when she isn’t with me.”

Adalyn was in gymnastics before her diagnosis and was supposed to start swimming lessons the day after she was hospitalized.

“We had to cancel that, which was really sad,” Melissa says. “It’s disappointing when you see she can’t participate in things like that for a while and join in with the other kids. But soon, she’ll go to Grade 1, be in school, and she’ll be back in swimming and perhaps, gymnastics. Right now, she keeps busy playing outside with her friends, because that’s her favourite thing to do.”

Raya has done as well as can be through her sister’s struggles too. She stayed with her grandparents during the 13 days Adalyn was in the hospital with Melissa and Evan, visiting Adalyn every so often.

“We didn’t want her to remember that being her life for very long,” Melissa says. “We just wanted her to have her visit and go home. She does talk about it from time to time, and she’ll go to therapy at some point to deal with it, but she’s doing as well as can be.”

For now, the family is enjoying being back at home together, and celebrating the small wins after a whirlwind couple of months.

“It’s all part of Adalyn’s story,” says Melissa, “and one day, we’ll get to explain it to her.”