School, community rally to help girl with unusual cancer

Friday, November 6, 2015 - 09:04
Nov. 14 run at ERHS set to raise awareness, funds
  • Maddy Brandl of Eagle River snuggles with Mr. Piggy who goes to her chemotherapy sessions in her battle against ovarian cancer. PHOTO COURTESY JENNIFER BRANDL FOR THE STAR

Her doctors cannot explain why Maddy Brandl had ovarian cancer at the tender age of nine.

It’s beyond rare. According to pathology information from the Mayo Clinic based in Rochester, Minn., only five percent of all ovarian cancers occur in children less than 13 years of age. The youngest case in the United States was a four-month infant.

Fortunately, for Maddy, she hasn’t had to travel Outside for treatment.

“We are so blessed that the team at Providence has been able to take such amazing care of her here in state,” Jennifer Brandl, Maddy’s mother, said. “If we had to travel, that would just be so much extra burden.”

Maddy was diagnosed last fall during her fourth grade year at Homestead Elementary School.

She was occasionally complaining of stomach pains. She was tired. She was voluntarily heading to bed much early.

“We noticed she was getting tired a lot more, but we thought, ‘wow, fourth grade must really be wearing her out,’” Jennifer said. “Fourth grade was a hard year for our older kids and Maddy is an overachiever, so we thought she was just working really hard.”

On Nov. 13, that speculation changed. Maddy woke up “hunched over like a little old lady” as described by her mother. She said she wanted to go to school. Jennifer said no and had her rest in the morning.

By lunchtime, Maddy’s pain worsened and Jen took her to a walk-in clinic in Eagle River. Staff there felt something on her left side, but suggested she might be one of those rare individuals for whom the appendix is located on the left side. Perhaps that organ was inflamed. Staff sent Maddy and Jen to the emergency room.

That is where Jen got the news no parent wants to hear: Your child has cancer.

Worse yet, that news included the announcement that her daughter — who hadn’t even hit puberty yet — had a cyst the size of cantaloupe on her left ovary. The ovary and the fallopian tube have to be removed, doctors told her. An emergency surgery was scheduled for the next morning.

It was almost a relief as doctors told the Brandl family that the pain-causing cyst was gone and because of her age, they did not believe chemotherapy was necessary. They would monitor Maddy’s progress via testing of inhibin, a hormone that become elevated when Maddy’s type of cancer — granulosa cell carcinoma — is present.

“We were thinking we were done with it,” Jennifer said.

Not so.

In February 2015, the inhibin levels increased.

A scan showed nothing.

Maddy seemed otherwise healthy, she was attending school and was playing with friends just like any other fourth-grade kiddo.

That changed in August 2015 when inhibin levels were again on the rise. This time a scan showed an 11-millimeter cyst in her pelvic region.

Chemotherapy was necessary.

Jen said Maddy took the news like a trooper, and insisted that her head be shaved prior to the first chemotherapy so that another child could have her long tresses.

Her best friend, Kaleigh Holdt, had her head shaved, too, to support Maddy.

The most frustrating part for Maddy was not being able to attend school. Her chemotherapy treatment required a Monday through Friday stay at the hospital. Brave as her mother describes her, the little girl in Maddy also showed up through the presence of two of favorite comfort objects — Mr. Piggy and a hand-tied fleece throw blanket from her aunt — in her arms for the duration of chemotherapy treatments.

Weeks off from chemo were spent at home regaining her strength. Her immune system was just too strained to be in the elementary school environment where despite regular hand-sanitizing reminders, germs still abound.

“I miss my friends and recess,” she said.

A visiting teacher comes to the Brandl home once a week. When Maddy’s numbers indicate she is stronger, select friends are allowed to visit as long as they have not been sick or have been around others that have been ill.

Doctors often prescribe chemotherapy in an effort to shrink a tumor prior to surgical removal. The pelvic tumor was removed in mid-October.

Another series of chemotherapy has begun. Plans are for one week of chemo with two weeks of break in between until mid-February of next year, her mother said.

It would be an understatement to say this has strained the family finances.

Maddy’s father, Nick, owns Brandl Electric. When Maddy’s cancer diagnosis came, the family had no insurance.

“Providence has been wonderful working with us on the financial side of this,” Jennifer said. “They truly have been incredibly patient and have helped us with finding the necessary resources.”

Jennifer said an application for Medicaid’s TEFRA (Tax Equity and Fiscal Responsibility Act of 1982) program, which is designed to help children less than age 19 pay for major medical or disability expenses, is in the works.

Jennifer said despite all of the challenges, she feels blessed.

Unlike many other families facing a medical emergency lasting as long as Maddy’s situation has, they have been able to keep up with their expenses and they have not lost their home. Nick — who took time off from his business when Maddy was first diagnosed — is working again and able to be with Maddy when necessary.

“Fortunately, we have been able to keep our home,” she said. “Not everyone is able to do that. Still, this takes an incredible financial toll on a family.”

Every now and then Jennifer ponders how a young girl could get ovarian cancer.

“It is just so weird to have a child that has this,” she said. Jennifer tried to find another girl close to Maddy’s age currently battling the same cancer. That search came up empty. What she did find is that only 128 cases in young girls have been diagnosed.

For now, she keeps the hand sanitizer stationed all over the house. Maddy’s siblings — William, 15; Ben, 13; and Ellie, seven, keep their own hands washed and do their best to avoid contact with others that might be sick.

“They know and do their best to not sit next to anyone that is sneezing or coughing,” Jennifer said.

Her children were already close to each other emotionally, but Maddy’s cancer has strengthened those bonds. The family’s social activities are often home-bound game nights or movies to minimize Maddy’s exposure.

On Nov. 14 at The Run for Maddy, the siblings are scheduled to lead off each of the three races being held at Eagle River High School.

Jennifer said the family is overwhelmed by the amount of support the community has given to them. From candy necklaces sold at Chugiak High School football games to the trendy “Maddy wear” T-shirts available for order at Homestead and the emotional support of their church family at Saint Andrews Catholic Church, Jennifer said she believes God placed her family in Eagle River eight years ago to facilitate the help they would need for Maddy.

“Words cannot even begin to say ‘thank you’ to everyone,” she said.

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