Verona Press - 9/10/2015

More than a day at the beach

Verona girl is front-runner for Walk for Wishes fundraiser

Samantha Christian

Unified Newspaper Group

Hadley Behrend sifted through a container of seashells at her home in Verona after her second day of preschool earlier this month. She held a conch shell to her ear, smiled and looked up at her mother expectantly while listening for the sound of the “ocean.”

Lynn hopes that her 5-year-old daughter remembers the family’s trip to Captiva Island, Fla. last year for the shelling and swimming, rather than the reason they went in the first place: cancer.

At only 2 1/2 years old, Hadley received a diagnosis of acute lymphoid leukemia. What started with a broken leg turned into over 100 blood draws, 10 spinal taps, numerous blood and platelet transfusions, eight different types of chemotherapy drugs and more than a month total in hospital stays.

“She’s gone through more in two years than I have in 37,” Lynn Behrend said. 

Make-A-Wish Wisconsin granted Hadley’s wish to go to the South Seas Island Resort last November so she could spend some of her childhood playing on the beach with her parents and younger brother, Chase, rather than sitting in doctor’s offices awaiting treatments.

“(Her) wish gave us all something to look forward to,” Lynn said. “It allowed us to have fun as a family without the worries of appointments and bills.”

Hadley’s last chemo treatment was completed in June, and she is happy to be in remission. She is also gearing up for the fifth annual Walk for Wishes on Sept. 20 at McKee Farms Park, where she will lead the event as the front-runner. The fundraiser will help grant the wishes of 10 other children in the Madison area with life-threatening medical conditions.

Strange symptoms

Toddlers are known to imitate behaviors, so when Hadley started limping in February 2013, her family thought she was just mimicking her grandfather who recently had a hip replacement. Besides, her mother said, Hadley had never complained of any pain.

Still, Lynn and her husband, Keith, a structural engineer with Strand Associates, decided to take Hadley to the doctor to figure out what was going on. Doctors initially thought she might have a virus, since bloodwork was inconclusive. Over six weeks of repeated visits, Hadley’s doctor ultimately discovered a healing fracture in her leg.

Hadley was fitted with a knee immobilizer, but a week later she woke up crying with a fever. So the next day, on Good Friday, doctors found another break in the same leg and ran more tests.

“You don’t think anything of it. You think it’s something small, until all of a sudden it isn’t,” Lynn said.

They sent Hadley to St. Mary’s Hospital for a full body scan where doctors found that her spleen was enlarged. Then she visited American Children’s Family Hospital on Easter Sunday for a bone marrow biopsy, and that’s when she received a cancer diagnosis.

“Besides shock, life as we knew it stopped and we became hyper-focused on getting her better,” Lynn said. “It wasn’t something any of us were prepared to hear.”

Trying times

Because Hadley was so young, it was difficult for her to express her emotions, wants and needs. She often hid under blankets at the hospital so doctors couldn’t see her, and her spunky self began to shut off around other people.

Playing was also difficult because she had to be carried around when she had her leg cast, and she also needed to be careful with direct contact since she had a port in her chest. When her immunity was low she had to keep her distance from other kids, and she was also taking steroids that changed her mood, behavior and eating habits. A small victory during that time was that she was potty trained.

“She didn’t have control over much else, but she could control that,” Lynn said.

Doctors did a test for minimal residual disease and did not find any cancer in Hadley’s spinal column, so she was considered standard rather than high risk. Her treatment course was expected to be 26 months long on an outpatient basis, but she was hospitalized about 10 times due to fevers and low white blood cell counts.

The medications Hadley needed threw the family a curveball because she refused to take any orally for the first year, even when hidden in sweet treats.

“We had a really difficult time with that, because there were some things that only came in oral form,” Lynn said. “Once the nurse saw how that was happening they were able to find an alternative that was IV.”

Lynn also had to stop breast-feeding her son, Chase, (who was 7 months old at the time of his sister’s diagnosis), because she was in contact with the chemo drugs. She also said he got to spend plenty of time at his grandparents’ house as a baby because of everything else going on at home.

Although the beginning of Hadley’s treatment was the most trying time for the family, they know that she’s not completely out of the woods even though she’s in remission.

“She’s not considered cured for another few years, so she needs to keep going back for check-ups,” Lynn said. “There’s always a possibility of relapse. And they say that children with cancer, because of the different types of treatment that they receive, are at a higher risk of secondary cancers in their life.”

Making memories

Hadley has been fighting cancer, but that’s not all she does.

When she’s not picking on her little brother, Lynn joked, she likes to pretend to read books or have them read to her. Lynn said it has also been nice for Hadley to socialize at Verona Montessori House, where she attends Pre-K with her friends, even though Hadley admits she “misses momma.” But her favorite thing to do is go to swim lessons.

“She absolutely loves swimming,” Lynn said. “She just really likes to play in water and go to the beach. We had gone a few times to Kohler-Andrae State Park and played on the beach there.”

That was one of the reasons Hadley wanted to go to go play in the ocean in Florida her wish destination.

While her brother was entertained by elevator buttons and golf cart rides at the resorts, Hadley preferred the pools and beach. One of the side trips they took during the getaway was to Cayo Costa State Park on an island where Hadley enjoyed collecting shells.

“That was probably her highlight of the trip besides swimming,” Lynn said. The family also saw dolphins.

Mostly, the trip provided a much-needed break from doctor appointments, calls to insurance companies and worrying about bills.

“It was completely stress-free … It was definitely a once-in-a-lifetime opportunity,” Lynn said. “And she’s at the age where she can’t fully comprehend all that it took, the people that organized it and the people that donated money so we could go, but we remind her of it.”

A Christmas card hanging on the refrigerator with a picture taken in Florida triggers Hadley’s memories of the trip. And even Chase, now 3 years old, remembers taking the flight there last year.

“For her going through this at such a young age is that she won’t remember a lot of the pain and things that she went through,” Lynn said. “We remember it, but she won’t … she’ll only have the positive things like going to the hospital and seeing her favorite nurses and going on this trip and all the good things that came out of it.”

Hadley will be making another memory in a couple of weeks during the Walk for Wishes event, which features a 5K or 2-mile run/walk, wheelchair race and kids’ dash, face painting, bounce houses, music, games and raffles. She’s also had some practice since the family recently went hiking in the Upper Peninsula. As front-runner, she will lead the other Wish kids on the walk, some of which she has already met through support groups.

For information about the event, visit walkforwishes.com.