As Brick Girl Fights Melanoma, Mom Fights For Drug's Accessibility

BRICK, NJ -- Danicka Lacey Fike is your typical 3-year-old girl -- equal parts spunk and princess.

"Nothing fazes her," her mother, Kristen Fike, says. "She throws a crown on it and calls it a day."

That spirit, Kristen believes, is one of the reasons the Brick Township preschooler is making progress in her fight against a rare cancer. Danicka was diagnosed with stage 4 pediatric melanoma in July 2015, a cancer diagnosed in just 500 children a year, according to the National Cancer Institute.

But Kristen Fike also believes the experimental medicine that Danicka is receiving, at nearly $5,000 per treatment, is playing a huge role -- and she's determined to make sure the drug is available to other families. She and Danicka are traveling to Washington, D.C. this weekend to talk with Sens. Cory Booker and Robert Menendez to ask them to push for changes that will move the medication Danicka is receiving from the "experimental" list to one that is a first choice for treating children diagnosed with pediatric melanoma, and get it covered by medical insurance.

"It shouldn't be for just the wealthy and the elite," Kristen Fike said. "If you have the drug and it's life-saving then it should be available to everyone."

Finding the cancer

From the time Danicka was born, Kristen said, she has treated her daughter like a princess.

"I had wanted a little girl for 30 years," she said, recounting how, when Danicka was born, she insisted on putting a bow on her head almost immediately. "A big pink bow the size of her body," she said.

"She hasn't been cleaned off yet, they said to me, and I said 'I don't care, please put this bow on her now,' " Kristen said with a laugh. "They must have thought I was crazy."

And from the start, Kristen was forever doing Danicka's hair, brushing it, putting in bows and thoroughly enjoying the experience of raising a daughter. It was during that daily beauty routine that she first discovered the cancer; on Feb. 1, 2015, while brushing Danicka's hair, she found a bump on her head. It was tiny -- like a little pimple.

No one had an explanation; some said perhaps it was an ingrown hair, Kristen said. She asked her pediatrician and a dermatologist and neither could tell her.

"I thought she had a wart on her head," she said. She took Danicka to a doctor and a biopsy was performed, but it was inconclusive. In May, she took Danicka to a Michael Nagy, a plastic surgeon in Wall, who removed a spot that was now the size of a half-dollar and was deep -- it had grown into the fourth of five layers of skin on Danicka's scalp.

A few weeks later, she and her husband, Aaron, were preparing to leave for a weekend in Atlantic City to celebrate their anniversary when Nagy called.

"We were all packed and ready to go," she said. Nagy asked her if she was sitting down, and then delivered the news: "Danicka has cancer."

"I still have trouble saying Danicka has malignant melanoma stage four," she said.

Research and decisions

Until Nagy told Kristen that Danicka had melanoma, she'd never heard the term before. Nagy told her he'd had two pathologists look at it to be sure, because he was surprised by the diagnosis.

She and Aaron went to Atlantic City, but she was distraught. And in Atlantic City, a fundraiser was being held for a girl who was battling melanoma, with signs about the event seemingly everywhere.

"I had never heard of it and now I couldn't sneeze without bumping into it," she said.

It was Aaron who nudged her into fight mode.

"She's not dead yet," Kristen recalled him saying. "Let's not grieve this, let's do something."

"He is my rock," she said. "I couldn't do this without him."

When they returned home, Kristen started researching like crazy, looking up everything she could on melanoma. At first, it left her feeling it was her fault that Danicka had melanoma, because the skin cancer can be triggered by too much sun exposure in adults. But according to the MD Anderson Cancer Center at the University of Texas, where Danicka receives monthly infusions of Cobimetinib, a drug developed by Genentech in California, pediatric melanoma is not primarily caused by sun exposure; it frequently has a genetic cause.

Melanoma in children can be challenging to diagnose because it can present differently than in adults, the MD Anderson website says. It also can grow faster in children; however, they sometimes fare better than adults with the disease through treatment, according to the website. It accounts for about 2 percent of childhood cancers, is occasionally found in newborns and becomes slightly more common as children get older, the MD Anderson website says. It accounts for about 8 percent of cancers in teens, and researchers are seeing an increase in cases among teenage girls in particular due in part to the use of tanning beds, the site says.

Through intensive research into treatment options -- she talked to experts at every well-known cancer research hospital, including Children's Hospital of Philadelphia, St. Jude, Moffit and others -- Kristen found out about Cobimetinib. Chemotherapy was an option but wasn't always effective and had significant side effects. Radiation presented significant dangers for a child as young as Danicka, and surgery wasn't guaranteed to stop the cancer because all too often surgery can result in the spread of "rogue" cells that cause cancer to metastasize.

But there was a problem: Cobimetinib is considered experimental because it isn't approved for use in children, due to ethical concerns about testing drugs on children. It has been used for adults for a couple of years now, she said. There are concerns is about how the therapy might impact kids as they go through puberty and whether it will impair their ability to have children, she said.

Kristen said Danicka's ability to have children is low on her list of worries.

"When I was a kid, IVF wasn't common and now it's being used all the time," she said. "I don't know in 30 years what they'll have available. I can't worry about that. I just want her to be old enough to have children."

"When someone throws cancer at you, it's not like trying on all these dresses until you find something that fits," she said. "It's not a cure-all -- the first step is to operate." But the immunotherapy suppresses the rogue cells that break away and cause cancer elsewhere in the body -- which is what makes melanoma fatal so often.

There was a clinical trial being conducted on the drug, but Kristen passed on the opportunity to participate.

"I was afraid she'd wind up in the placebo group," she said. "I couldn't take that chance."

Researchers told the Patch that oncology trials do not use a placebo group in testing, and the main reason drugs aren't approved in children is because of ethical concerns in testing experimental drugs in children. Additionally, the small number of children with pediatric melanoma makes it difficult to achieve a study with statistical significance, they said.

The U.S. Food and Drug Administration, which oversees the approval of drugs, is working with drug companies to facilitate the approval of medications for use in children. There are currently 38 oncology drugs being studied under the Pediatric Product Development program.

Wanting Danicka to have a treatment she felt gave her daughter the best chance of survival, she settled on MD Anderson, which has done the most work on pediatric melanoma. So they travel to Dallas once a month for intravenous infusions of the drug, because there was nowhere else that was willing to administer it to a child.

But because the drug is considered experimental, the Fikes' medical insurance does not cover the treatments. The Fikes took out a second mortgage to pay for it.

"I'll probably never own my home but I'm OK with that as long as we have her," she said.

It takes a family ... and a village

In addition to the monthly whirlwind trips to Dallas -- they fly in, check into the hotel, zip over to the hospital for Danicka's treatment, sleep, then fly back home -- Danicka is seen at Children's Hospital of Philadelphia twice a week to monitor her response to the immunotherapy treatments and make sure the cancer hasn't spread.

"Just to have her be here with us -- just to have another day with her I would gladly drive to the moon," Kristen said.

Her mother takes time off from work to come stay with Danicka's siblings -- A.J., who's 8, and Audrianna, who turned 1 in February -- while Kristen and Danicka fly to Texas each month.

Aaron, who works in an auto body repair shop, is the sole financial support.

"My husband works his butt off so the kids don't miss out on things," she said, taking A.J. to baseball and Cub Scouts and providing perspective that keeps Kristen grounded, she said.

"When I'm worried about spending the money on baseball, he reminds me that it's important," she said, and they find somewhere else to cut back.

Danicka's diagnosis has been hard on the family, Kristen said. A.J. has struggled with fears of losing his sister, Kristen said. And Audrianna has logged almost as many travel miles as her mother and sister, accompanying them to every CHOP appointment.

"She balances out Danicka's diva side," Kristen said, calm and quiet. "She must have gotten the memo that we couldn't handle two of them," she said with a laugh.

The biggest surprise to her, however, has been the support from the Brick Township community. The Brick PBA recently knocked on the family's door and announced that Danicka would be the recipient of its 26th annual Helping Hands Benefit Basketball game. The game, scheduled for 7:30 p.m. March 18 in the East Gym at Brick Township High School, pits members of the Brick Township Police Department against members of the Brick Dragons high school football team. Tickets are $3 per adult and $2 per student either in advance or at the door.

"I was speechless," Kristen said. "I started crying. My neighbor saw the police cars and saw me crying and told me later that she thought something bad had happened, 'Dear God hasn't this family been through enough?'

"I told her I was just overwhelmed," she said. "It leaves you speechless."

There also is a benefit being held tonight (Friday, March 11) and Saturday at the Java Haus Cafe on Brick Boulevard, in conjunction with the Brick PBA, according to the cafe's Facebook event. The Java Haus fundraiser will feature Frank Sinatra, Elvis, a trio of comedians and "most likely a few unannounced guests," the cafe says. In addtion, the 40footholestudio.com radio family will be participating. Danny Coleman of Danny Coleman's ROCK on RADIO will be emceeing the event and DJ Midnight Cobler will be providing sound and broadcasting the event worldwide, the restaurant said.

There have been other benefits as well and more, including one by the moms at the dance school Danicka attends, are in the works.

And there is the neighbor who buys dresses at the Disney Store continuously that Kristen uses to ease the weekly CHOP appointments, by telling Danicka she's being measured for a princess dress, which Kristen slips into the trunk of her car and gives to Danicka each Friday after the second appointment.

The generosity stuns her, she said.

"People who I barely knew have bent over backwards for us. I'm not from this town (the Fikes moved to Brick from Hazlet before A.J. was born) and yet they have done more for us than I could possibly imagine," Kristen said. "They have given me a gift I could never repay."

"There's not enough words in the English language to express my gratitude," she said.

But every benefit lets them continue Danicka's treatments, which have been helping.

The goals: NED and access for all

When Danicka was first diagnosed, there were signs the melanoma had spread to her lymph nodes and to her lungs, Kristen said. But the Cobimetinib infusions she has received since September have eliminated it from her lymph nodes and the spot on her lung has shrunk.

The goal, and the words Kristen hopes most fervently to hear, is NED -- no evidence of disease. But Danicka, who turns 4 in July, has come a long way since the diagnosis.

"I don't know what the future holds for Danicka but I know a year ago I didn't know if she would be 4. To have someone tell you that and to see how far she has come is amazing," Kristen said.

Even better, the immunotherapy has had fewer and less extreme side effects. Her hair has thinned but she hasn't suffered the more extreme effects associated with chemotherapy. There are things they have to avoid -- birthday parties at Chuck E. Cheese have been a no-go, for example, because the risk of Danicka picking up an illness, even a cold, that could compromise the immunotherapy is too great. Any time Danicka is ill, it means a trip to CHOP for monitoring, Kristen said.

But Danicka is attending preschool and dance school, and despite warnings that the infusions would leave her tired and possibly make her nauseous, Danicka has shown few ill effects. She has a permanent bald spot on the back of her head that Kristen covers by pulling her hair over it, and a scar on her thigh from the skin graft performed to replace the skin removed when the cancer was surgically removed, but that scar is fading over time.

"Inside she is fighting for her life, but you wouldn't know that from a typical Tuesday with her," Kristen said.

Kristen attributes some Danicka's response to her spunky nature, which she admits is as much of a challenge as it is a blessing.

"Danicka is like having four kids. She says what everyone is thinking. She is full of sass," Kristen said. "It's her world and we all just live in it."

She is the family's fashion critic: seeing Aaron dressed in his work uniform one day, Danicka said, "I don't know what I think of that," Kristen said. "He had to explain to her that it was his work uniform and he didn't have a choice in what he wore. She wasn't approving."

"She's like 3 going on 30 and full of energy. She keeps us on our toes," Kristen said.

She believes it also helps that Danicka doesn't realize she is sick.

"She thinks she thinks this is life, this is what everyone else is doing ... it's like potty training, something she just has to do," Kristen said. "She takes it all in stride."

It's precisely because Danicka has responded so well to the immunotherapy that Kristen is fighting to get medical insurers to cover the cost of it.

"It's already bad enough your kid has cancer but then you can't afford to take care of her," Kristen said. "I want Danicka to be better but I want it to be simple for those parents who face this in the future."

She's also fighting to more attention to pediatric melanoma, so that children are diagnosed more quickly, she said. She is grateful Danicka was diagnosed before the cancer had spread to her brain, but she wonders if things would be different if more people were aware of the disease.

"No one even knew what they were looking at, Kristen said. "I thought she had a wart on her head. I just want to change that for the next mom and dad."

She also wants others to be aware of the dangers of melanoma, which apply to everyone, she said, noting it was what led to the death of reggae singer Bob Marley. Now that Danicka has been diagnosed with melanoma, she will be at risk for a recurrence the rest of her life. That means daily applications of sunscreen -- 30 SPF in the winter, and 70 SPF when the weather warms, plus always wearing a hat and sunglasses outside.

"Melanoma affects everyone," Kristen said. "(Danicka) has the scars to prove it and she wasn't even laying in a tanning bed. I want people to understand the risks."

The community support just spurs her forward.

"I want to show Danicka how everyone has come together for her," she said, "and how you need to come together for people who can't fight for themselves. Just because you're fighting somethign doesn't mean you can't stand up for something else."

"We have to make a difference. Parents shouldn't have to fight for medication. This is what you need," Kristen said.

The dual fight -- for Danicka's life and for better access -- consumes her days, but Kristen said there's no way she will back down.

"I just want to look forward to telling her, 'No, you can't go to the tanning salon for prom. I want to experience her going to kindergarten. I want to see her perform in her dance recital.

"She's my little princess warrior. She does everyting with a smile on her face and she doesn't go quietly. I owe it to my daughter and the other kids to keep fighting (for access to the immunotherapy) ... because of it Danicka is going to see her fourth birthday.

"I don't want any parent to go through this." Kristen said. "I don't want any parent to be denied by insurance. God forbid she ever relapsed, we would have to go through this again. I just want to change it so the next person going through this they never have to deal with this (insurance fight), so they can just focus on fighting melanoma.

"The people who don't have the money or support, they don't have a shot in hell," she said. "If it saves one other person's life, it won't be in vain."

"I don't care that I will never have a new car or I may not go on vacation again, because every morning when I wake up, she's here," Kristen said. "As long as she's here and living and breathing, I've done my job."

How to help

If you cannot attend either of the fundraisers -- tonight and Saturday at the Java Haus Cafe or next week at the Helping Hands game, there are ways you can assist.

Donations for the Fikes can be sent to Brick PBA Local 230, P.O. Box 1067, Brick, NJ 08723, c/o Officer John Turrin. Checks can be made payable to the “Helping Hands Fund.”

The Fikes also have a GoFundme page set up for help with Danicka's medical expenses.

For further information, please contact the Java Haus Cafe 732-477-1100 or to donate directly please contact Officer John Turrin or Officer Robert Scelfo, at 732-262-1100 or Detective Greg Mullarkey at 732-262-1122.

(Photos courtesy of Kristen Fike; Danicka with the Disney princesses during a trip arranged by the Make A Wish Foundation; Danicka in her Cinderella code shirt "Have Courage and Be Kind;" A.J. and Danicka, and Danicka alone.)