Jan 23, 2017 6 min read

The Mon Valley YMCA is hosting Bike for Brenley, the latest of several fundraisers organized and supported by family and friends – and even strangers – for a 3-year-old Monongahela girl whose life was turned upside down less than three months ago.

“It gives you chills,” said Brenley’s mom, Alyssa Farner. “If there’s any good that comes out of this, that is one of them. The support has been overwhelming. We keep saying, ‘How are we ever going to repay these people?’ We are so blessed that there are so many people out there praying for her.

“You don’t know why things happen. As a parent, you say, ‘What did we do wrong?’ It’s nothing we’ve done, but you never think it’s going to happen to you. All that anybody can do is just remind her that there are people who care and are praying and thinking of you. That in itself means more than anybody could ever know.”

Brenley is fighting an extremely rare, aggressive cancer called malignant rhabdoid tumor. She was diagnosed Nov. 14, seven months to the day that she was told she has Type 1 diabetes, and just seven days after she turned 3.

Bike for Brenley will be held Saturday, and will feature two cycle classes, one at 8 a.m., and the other at 9 a.m. Cost is $10 per person. Instructor Jan Hartung also will accept donations from those who are unable to attend.

“This Mon Valley YMCA is a community that cares,” wellness director Peggy Herforth said, adding that Brenley’s grandmother, Erin Campieri, and her great-grandmother, Terri Shannon, both teach classes at the YMCA.

“It’s all about helping each other,” Herforth said. “It gives you energy, and it makes you feel good to know that your energy is going into a positive cause.”

Brenley’s battle began innocently enough, when she complained that her tummy hurt. But when the pain failed to subside, Alyssa and her husband, Josh, took Brenley to Children’s Hospital, where, after ordering an X-ray, ultrasound and CT scan, doctors confirmed the youngster had a tumor – and it was cancerous.

“It looked like a fist was protruding from her left side,” Alyssa said.

Brenley was admitted immediately, and the next day, she underwent a 7 1/2-hour surgery to remove the coconut-sized tumor, plus her left kidney, adrenal gland and lymph nodes.

Doctors initially thought it was a Wilms tumor, the most common – and treatable – cancer of the kidneys in children.

But when the pathology report came back a week later, the diagnosis – and ultimately the prognosis – was significantly different.

According to the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, malignant rhabdoid tumors typically start in the kidneys, but also can occur in other soft tissues or in the brain. There are only about 20 to 25 cases diagnosed each year in the United States. There is no known cause, and cells from malignant rhabdoid tumors in children can metastasize to other parts of the body. Since the tumor is so rare and aggressive, there is no defined standard of care, and treatment options are tailored to each child.

In Brenley’s case, she spent 12 days in the hospital following her surgery before being discharged on Thanksgiving afternoon to spend what would be her last “normal” week at home for quite some time.

On Dec. 1, Brenley began her treatment, which has included radiation and chemotherpay. She already has completed 13 consecutive days of radiation, and on Thursday began the seventh week of an intensive 30-week chemotherapy treatment plan that involves both inpatient and outpatient medical care.

The treatment has made Brenley extremely sick, and on Dec. 29, she developed an infection in the colon and intestines, which interrupted her chemo treatment.

But Alyssa said that actually was a blessing.

“She really hasn’t had a break since she was diagnosed,” Alyssa said. “She needed some time to heal. She’s been playing, been smiling, and her personality is finally shining through. It’s very enjoyable to watch.”

At the same time, everyone is trying to control Brenley’s sugar. When she had the infection, she wasn’t eating or drinking. She has lost 11 pounds, and now weighs 24 pounds, less than two pounds more than her 17-month-old sister, Brysen.

“It’s hard to look at,” Alyssa said. “She was like the best eater. Now, things don’t taste good. She’s going to turn into a waffle and soft pretzel. That’s all she wants. We are trying to get her to eat and gain weight. She has to be strong for the chemo. It’s crucial she feels good.”

Despite all her daughter’s been through, Alyssa said Brenley continues to be a real trouper.

“She is my inspiration each and every day,” Alyssa said. “It’s no exaggeration, the resilience she has, and her spirit … she’s not your typical 3-year-old. She knows she has Type 1 diabetes, and she knows she has cancer. When she was diagnosed with diabetes, she was pricked and poked at all the time. But that’s only a fraction of what she’s had to endure.

“She did all 13 radiation treatments without beging sedated. She was the youngest patient to do it without sedation. She just keeps going. She doesn’t put up a fight. She makes it as easy as it can be. Ever since she was a baby, we knew God would use her in a mighty way. We didn’t think it would be this way. She truly is our hero.”

In addition to local fundraisers, a Go Fund Me page has been established in Brenley’s name at www.gofundme.com/313ta4w. More than $18,000 has been raised since Nov. 27. The money will be used to help defray Brenley’s medical expenses and to build a foundation that will support research and, more importantly, raise awareness of malignant rhabdoid tumors.

Alyssa said when the family was told the diagnosis, some of the nurses said they had never heard of MRT. Brenley’s parents also received a 300-page book about childhood cancer, and only a fourth of a page was devoted to Brenley’s type of tumor.

“To us, as parents, that’s extremely unfair,” Alyssa said. “To know that your child has cancer, and the type of cancer your child has makes it worse. I don’t think anybody should go through that. We deserve to know all the facts.

“As parents, you do whatever you need to do and by all means necessary. There is no time to think about it, or question things. You don’t know what God is going to have in store for you. We have a strong faith, and we believe. In our mind, there is no other option. She is going to be fine. We also have to acknowlege the reality. The cancer is aggressive, and it outsmarts the chemo.”