Parents sharing N.J. kids' cancer fights online
(MCT) -- When 4-year-old Angelina Phillips-Edelman was wheeled out of surgery attached to machines, with tubes coming out of her and her hands restrained to the bed, her mom felt compelled to document the moment. She went to take a picture, but Angelina's father stopped her. Instead, she took a close-up photo of his hand holding Angelina's.
Then she posted it on Facebook.
Danielle Phillips of Midland Park, N.J., is the parent of a child with cancer in the age of social media.
As soon as a child is diagnosed, parents must make decisions about treatment options, while balancing hospital stays and doctor's visits with jobs, healthy siblings and the financial and emotional stress of catastrophic illness.
Now some also choose to go public with their battle, to start a Facebook page or website about their child's illness. Families like those of Angelina, Lily Anderson and Emily Cortez, decided to turn to social media. They did so for many reasons - to keep friends and family updated; for emotional, logistical and financial support; to raise awareness of the illness; and often as the best chance to learn about treatment options.
The pages are filled with updates, fundraising event information and photo after photo: A picture of Angelina's brother Aidan telling her that people on Facebook helped her parents find a new treatment and one of Angelina eating ice cream to celebrate a successful fundraiser; Lily petting therapy dogs and guinea pigs in the hospital and another as she watched via Facetime as her twin brother, Brady, accepted her diploma at kindergarten graduation; and Emily showing off new glasses and dressed as Princess Belle. There are hospital shots or the view from an emergency medevac helicopter ride interspersed with cherished "normal kid" outings to Dave and Buster's, a family picnic or a street fair.
HOW MUCH TO SHARE?
How families share devastating news has changed. Decades ago, people wouldn't even utter the word "cancer" aloud. Then in-person support groups became part of the landscape, building a community for those facing similar situations. Today, it's public postings online that can reach anyone and everyone.
Dhavan Shah, a professor at University of Wisconsin, has spent years studying the effects of online communication and support in cancer patients and others with chronic conditions.
"Ever since the first electronic bulletin boards were present, there have been examples of people posting about personal crises and people within that small community [of early Internet users] offering support or at least sympathy," Shah said.
For more than a year, Phillips has put on what she calls her "Facebook face" and decided what to post on the Angelina's Army Facebook page: How much information is too much? How much do you share? How real do you get?
For some, particularly those who aren't frequent users of Facebook and Twitter, it's too uncomfortable to share intimate details so publicly during an incredibly difficult time. This kind of sharing comes naturally to many, however, particularly to a generation who became parents as social media became part of our daily lives.
Families of childhood cancer patients have "really used social media even more so than others, because they're so small in number," said Rebecca Kirch, director of quality of life and survivorship at the American Cancer Society. "It's the way that they can build strength."
Childhood cancers make up less than 1 percent of all cancers diagnosed each year, according to the American Cancer Society. About 10,450 children in the United States under the age of 15 will be diagnosed with cancer in 2014 and 1,350 children younger than 15 will die from it this year.
Families believe that getting the word out and creating a network that goes beyond the typical friends of friends on Facebook can mean the difference between learning about a new clinical trial and missing an opportunity, between paying the balance on the specialist's bill and falling into debt.
Often family and friends handle the page, construct the posts from their personal updates and act as gatekeepers for overwhelmed parents.
"We had to shut people out; that's where the website came in," said Yolanda Cortez of her and her husband, David, of Emerson, N.J., when their daughter Emily was diagnosed with optic glioma, a form of brain cancer, at 4 months old. Her brother offered to start the page to take the pressure off as much as possible while documenting the struggle.
"I thought it's perfect, to follow her journey from Day 1," Cortez said. "And when Emily hopefully gets cured and healed, she can go back as she gets older and read everything she went through and read all the prayers and how everyone reached out to her."
The public forum is also a way to raise awareness and inspire people to advocacy.
"Spread the message, speak out loud," Lily's mother, Barbara Anderson of Wayne, N.J., wrote in a text.
NOT TRENDING BUT LIVING
Families' private battles are now public in social media's distorted reality of "likes" and clicks and disembodied comments that can make people forget these are real people going through something all too real.
"They're not trending, they're living," said Stephen Thompson, pediatric neurologist and oncologist at Hackensack University Medical Center.
HUMC social worker Judy Solomon helps guide families through illness and treatment, including offering advice on what and how much to put out there for public consumption. The online reaction can be uplifting but also upsetting.
"You get the extremes of people," Phillips said. "You get random people you don't know who will bend over backwards to help you. You get random people who are just mean-spirited."
One woman posted on Angelina's page that she hoped the little girl's suffering would end soon and she could be at peace. On Lily Anderson's page, a grieving parent wrote that the Andersons were lucky: Her child had been diagnosed two weeks ago and was dead.
"I didn't need to hear that," said Chrissy Zak, Lily's aunt, who runs the page.
Shah's research has shown that the negative interactions are outweighed by the emotional and logistical benefits, including helping to raise money.
"Online tools for fundraising are quite powerful," said Shah, who has studied the topic when it comes to political fundraising, not health care, but said he has seen local examples of the power in those cases.
These sites function as the hub for fundraising efforts and sales of T-shirts and bracelets to keep up with the rising medical bills and regular daily expenses.
For many pediatric cancers, there are now treatment options that didn't exist 20, 10 or even a few years ago - and they are expensive options. Angelina had a stem-cell transplant. Just the harvesting of the cells cost nearly $300,000, according to Phillips.
Families are also incurring the costs of traveling for treatment, paying for childcare for their other children and losing paychecks by taking time off or, in the case of Cortez, having to quit a job to become full-time caregivers.
"The decision for Facebook was a no-brainer," Phillips said. "I knew that we were going to need to raise money, a lot of money. The other day I got a bill for $68,000. ... Yeah, there are grants and stuff out there, but they're not going to give you that kind of money."
The Facebook pages for Angelina, Emily and Lily have nearly 6,000 "likes" among them, but no matter how many sympathetic comments people post, the parents can still feel isolated.
"As much as they support us and as much as they try, people will never understand what we go through every day," Cortez said.
A COMMON THREAD
The ones who know most deeply are other parents in the same situation, and the Web pages help connect them.
Anderson's page helped her get in touch with families whose children had the same, rare diagnosis of diffuse intrinsic pontine glioma, an inoperable, malignant tumor in the brain stem.
"I connected with parents from Boston, from New Jersey," she said.
They all offered to answer her questions, whatever questions, whenever she is ready to ask. While finding someone who understood was a relief, hearing their children's stories was difficult. Many of these kids had died.
"Some people can't handle it," Solomon said. "Our job is to help the whole family with what works for them."
When Angelina was diagnosed, Phillips scoured the Internet and found page after page of children who had "earned their angel wings." Photos of kids who were bald, emaciated and on feeding tubes and who had lost their battle. In January, when Angelina was going through a particularly bad stretch and told her mother she no longer wanted to get better, Phillips thought of those kids often.
"It was scary," Phillips said. "That was her - emaciated, bald and on a feeding tube and I was like, 'Oh, crap, did I put her through all this to wind up there anyway?' Then when we got kicked out of the trial, I was like, 'What did I do?'"
Phillips was frantic and posted that they needed a new option immediately and received 400 responses from her Facebook community. The family ended up at Memorial Sloan Kettering in Manhattan with a new clinical trial.
Anderson hopes somewhere in their ever-expanding network is the answer to her family's prayers for Lily.
"I need a cure. I need to find that person [who can help]," she said from Maryland, where Lily is receiving radiation treatments at the National Cancer Institute in Bethesda. "I know what people can do. Find me somebody."
Until then, little things make a big difference. When a recent post talked about how much Lily loved a stuffed animal at the hospital's patient library and how sad she was to learn she had to leave the bird behind, the Andersons' community took action with calls and emails. A couple of days later, Lily was given the stuffed animal.
"Words can't even describe my gratitude," Anderson said in a post that came with photos of Lily receiving the stuffed animal and asleep with it in the hospital elevator.
Comments on Facebook promised to send the library other stuffed animals to replace the one given to Lily.
"We're seeing more not just virtual but how the virtual intersects with the actual," Shah said of people taking actual action like this, not just interacting virtually.
There are websites like lotsahelpinghands.com where people can sign up to bring meals or for childcare. Or people can act individually with small gestures.
Emily - who is a year into chemo treatments with at least another four months to go - has a homemade cross hanging from her stroller. It was a gift from a stranger in Texas. Someone from Virginia recently sent a box of cookies, just to try to brighten their day.
"I feel like the whole world is praying for Emily," Cortez said.
'FIRE IN THEIR BELLY'
In return, Cortez wants to share her story, inspire other families and help raise money for research. Zak said in the future she will no doubt devote part of her life to one of the organizations she has learned about because of her niece's illness. Phillips plans to create a grant for other families who end up in the same situation.
"They have this fire in their belly and they want to fight back by raising money and advocating," Kirch said. "They are small in number and that's the biggest challenge in why we haven't seen the [research and treatment] progress that everyone would like. ... The breast cancer lobby is huge and there is strength and action in numbers. So they are trying to be mighty even though they are small. And they have been mighty."
Social media may have helped bring that strength, but it still causes an uncomfortable daily internal debate even for those who embrace it. No matter how detailed and open the pages may seem, it is never the whole story.
Zak makes a point to post only "sweet" photos of Lily - the kindergartner sleeping, petting a therapy animal or doing arts and crafts, nothing that reveals too much about the devastating impact of the illness. She does the same when writing the updates she gets from her sister.
"Chrissy tries to whitewash some of my updates," Anderson said. "I can't write, let alone say, some of the things we go through during the day."
A recent post talked about waiting on the results of some blood tests for Lily. It didn't say how devastating it would be if the results weren't what they were hoping.
"I put it out there, but I can't put everything out there," she said.
In the age of social media, this is how Anderson chooses to tell Lily's story.