LOOKING BACK, Jillian Bolding says tending to her son’s gastrostomy tube (G-tube) was difficult. In 2017, her 7-year-old son, Alexander, was diagnosed with medulloblastoma, a brain tumor. She and her husband, David, turned to St. Jude Children’s Research Hospital for help.
“It’s not just about the cancer,” Jillian says, recalling her G-tube struggles. “It’s about the other things that go along with it. I wish there had been somewhere for us to find information in one place.”
The tube, needed to deliver drugs and food, was inserted through Alexander’s abdomen and into his stomach. When asked, Jillian didn’t hesitate to share photos of its use and care with other families via a new online resource for pediatric cancer called Together.
Germ of an Idea
In 2014, James R. Downing, MD, St. Jude president and chief executive officer, asked a simple question: “Can St. Jude develop a website that has everything families need to know?”
When faced with questions after a cancer diagnosis, many parents turn to the Internet for answers. Which sites are trustworthy? It’s hard for parents to know what to click and what to ignore.
Downing wanted St. Jude to build an authoritative resource where families all over the world — not just those at St. Jude — could learn about pediatric cancer, its diagnosis and treatment, care and support, and life after cancer.
Built for Families
Diane Roberts, director of medical content and patient outreach, says the Together name reflects a key St. Jude ethos: “We’re in this together with patients and families.”
Patients and families have been involved every step of the way, offering input about their information needs and preferences as well as sharing their experiences in support of other families facing similar journeys.
The launch of Together in September 2018 was a first step. The site now contains more than 450 pages, including 118 medication summaries, 67 videos and 20 medical illustrations. Earlier this year, the Together team won the Center for Plain Language’s ClearMark award for best website, topping the Centers for Disease Control and Prevention.
“Every single page was developed from the ground up,” Roberts says, noting that more than 200 St. Jude subject-matter experts made Together possible. St. Jude pediatric oncologist Jamie Flerlage, MD, understands the significance of this effort.
“One thing that is very important to me is having an up-to-date and trustworthy site for patients and families to go to,” Flerlage says. “There is a need for something reliable, and it brought all of these experts together.”
Filling a Global Need
In the last year, people from countries large and small — China and Croatia, India and Iceland — have accessed Together. Last count: 151 countries, all 50 states and all 10 Canadian provinces.
The need for this resource is clear. Earlier this year, Roberts attended a pediatric oncology meeting in Europe.
“It was remarkable,” she says. “We had people from over 35 countries approach us.”
This highlighted the next step — translating the site into multiple languages. The Spanish Together site is up, and Together will be available in five additional languages before 2020 with more planned.
Pay It Forward
Roberts talks about a “pay-it-forward” attitude. She sees it again and again: patients, families and health care professionals coming together to provide a resource so that no family has to face pediatric cancer alone.
“It’s not just about helping my patients, it’s about helping all children with cancer,” Flerlage says. “This website is another example of sharing this wealth of knowledge and resources we have at St. Jude with as many people as possible.”
Alexander, who turned 9 on his first day of school, loves fishing, bugs and playing Minecraft. If someone asks a question, he says, “I don’t have a second belly button. This is actually from my G-tube.”
“I knew the photos of his G-tube would benefit other moms,” Jillian says. “I did it in the hope of helping other mamas.”
SUGGESTIONS WELCOMED AT firstname.lastname@example.org.
Together users hail from countries that include:
Antigua & Barbuda
British Virgin Islands
Democratic Republic of the Congo
Northern Mariana Islands
Papua New Guinea
St. Kitts & Nevis
Trinidad & Tobago
United Arab Emirates
From Promise, Autumn 2019