- Posted by jdavis on June 13, 2011
by Sarah Perry, The Dallas Morning News
August 24, 2010
The first thing you notice about the baby is her eyes. Bright and sparkling, they stare at you from every wall in Jenny Scott’s office. But the most captivating picture of Allie Scott is tucked inside a silver charm around her mother’s neck.
The charm arrived in Scott’s mailbox five years ago, wrapped in plain brown paper. The sender: unknown.
Scott received many gifts from strangers after Allie was found to have leukemia in 2004. Depressed and angry, Scott began blogging on her family’s website. Within weeks, her posts received about 40,000 hits a day.
“I am a bit panic-stricken,” Scott wrote in August 2004 when Allie’s white blood cell count plummeted. “I struggle with praying.”
Back then, Scott was in the vanguard of social media. What she was doing – dealing with a serious family illness by sharing her thoughts and fears online – is now the norm. Patients, families and caregivers use blogs and social media to connect with others going through similar experiences.
These people agree that social media made their lives easier, the battle less stressful. Scott relieved her stress by writing. Another woman researched her son’s disease to find treatments. And one Coppell resident looks to others online for hope that she, too, will beat brain cancer. All three use the Web to schedule times for volunteers to bring meals. All three have written their stories for strangers.
And all have found that the connections formed can be more enduring than the illnesses they’ve faced.
A parent’s nightmare
When Allie’s two-week fever didn’t fade, Jenny Scott took her to the doctor. She thought it was teething problems. The blood work told a different story.
“We think your baby has leukemia,” the doctors said.
Scott could do nothing but write.
Her husband had set up their website, scotthousehold.com, to showcase pictures of the chubby, giggly 4-month-old to their family. After Allie’s diagnosis, Jenny Scott blogged about Allie’s condition to vent her frustration. Eventually, she referred her loved ones to the blog and asked them to stop calling.
“I could not tell the story 12 times a day,” Scott says today. “It was physically and emotionally draining.”
News of Allie’s struggle spread. Scott, of Allen, was a member of babycenter.com, a discussion board for mothers, and the members sent out e-mail blasts asking for prayers. The traffic to the blog exploded, and she began communicating with other mothers whose children had cancer.
Strangers began showing up with meals at the hospital. Others arrived to pray over Allie. The hospital didn’t know what to do, Scott says.
While Jenny Scott found that writing online built a real-life community, another woman found an online community that led to treatment for her son.
About a year after Allie’s illness was diagnosed, 5-year-old Alex Podeszwa complained about his leg on a walk home from school. Tests at Texas Scottish Rite Hospital for Children led to a diagnosis of Stage IV neuroblastoma, a type of cancer that affects the nervous system.
It was the beginning of a five-year fight by his mother, Ann Podeszwa of Dallas (TX).
From the time Alex’s illness was diagnosed, Podeszwa lived on her laptop. She searched high and low to find a child whose story matched Alex’s. She searched for hope.
“You have a box of Kleenex, a glass of wine, and you’re sitting there bawling, trying to figure out what child is your child,” she says. “Problem is, no disease for any child is the same. That’s a tough pill to swallow.”
Podeszwa started exchanging e-mails with other parents whose children had cancer. This led her to acor.org (Association of Cancer Online Resources), a site that allows people across the globe to share information about cancer. Podeszwa signed up for the neuroblastoma group and found treatment options for Alex that weren’t available in Texas. After talking to her doctor, she flew Alex to the University of Michigan.
“I’m convinced he’s alive today because of it,” Podeszwa says. “If we would have stayed until the treatment came here, he would not be here.”
While Podeszwa scrambled to save her son’s life by combing through studies and websites, Melinda Wells searched the Internet for inspiration.
Wells, 38, of Coppell (TX), began having seizures in 2007. She saw a neurologist and was driving to work when she got the call.
“You have a growth in your brain,” she remembers the doctor saying. Within four months, what she was told was “nothing serious” transformed into radiation and brain surgery.
Wells has had surgery two more times because of cancer recurrences. The past three years, she has relied on e-mails and CaringBridge.org to keep her family and friends updated. About a half-million people have Web pages through the nonprofit organization’s site.
Wells has had a similar experience to Podeszwa. She follows one child in Arizona through CaringBridge. She tracks a man in Highland Village (TX) with cancer who does weekly video updates.
“I feel like I can pray for them in ways that other people who haven’t been through this can’t,” she says. “You kind of start feeling like you know them.”
For all three women, the connections found online have become vital parts of their lives – even if they aren’t dealing with cancer today.
Podeszwa still researches for treatment options for her son. Alex is 10 now and his cancer is stable. But just as she did in the early days of his illness, she has continued to reach out and make connections online.
She and her family recently visited a woman in Hawaii she met on acor.org. Her child also has neuroblastoma. And Podeszwa and her husband spent an entire evening in June on the phone with another woman whose child is taking chemotherapy.
She still seeks advice on treatments from a woman in Minnesota whose son died of neuroblastoma. The connections give her hope.
“You have today,” she says. “And you’re feeling good today.”
Melinda Wells’ last surgery was in January. Scans show she is cancer-free. She still blogs on CaringBridge.
“The second I hit ‘post,’ I have a peace come over me because I know so many people are praying for me,” she says.
Allie Scott died on Sept. 13, 2004. Jenny Scott’s website was flooded with messages from strangers around the world. Some became friends, and today she and five other women she met online are known as “the posse” and take vacations together each year. Others are now employees and business partners.
Her nonprofit organization, Heroes for Children, helps families with cancer-stricken children pay for expenses. She and Larissa Linton, whose child also died of cancer, have provided about $2 million to families.
And she writes. On June 11, she blogged about the 100 things that make her happy: No. 14 – “My Allie Necklace.”
www.caringbridge.org – gives people with serious illnesses a free Web page to blog, post photos and share their stories.
lotsahelpinghands.com – organizes family and friends to manage volunteers and activities to help the ill. Provides a group calendar to coordinate visits to the doctor, meal times, etc.
upopolis.com – a social network for young hospital patients to connect with family members and friends and blog about their journey – a type of Facebook for the sick.