On July 13, 2012, Robin Ulness was diagnosed with leukemia at just 9 months old. Gayle Garson, Robin’s mother, said the diagnosis was a complete surprise and it all came on very quick.
“Getting the news was devastating,” Gayle said. “It was like getting kicked in the stomach by a horse. It was so surreal; I just kind of went numb.”
Robin was diagnosed with infant acute lymphocytic leukemia (ALL), which arises from white blood cells called lymphocytes that do not mature properly. While ALL is the most common type of cancer in children, infant ALL is very rare.
Robin’s diagnosis marked the beginning of two years of treatment. Robin came to Seattle Children’s Cancer and Blood Disorders Center and began six weeks of inpatient care. She then had four more rounds of chemo, which required a number of inpatient stays.
While Robin was inpatient, Gayle came up with an innovative idea for something that would not only help her daughter but would also help other children going through treatment.
Living with a Hickman
The day after Robin was diagnosed, her Hickman was put in. A Hickman is a central venous catheter used for the administration of chemotherapy or other medications, and it is also used to draw blood for testing. Over time, Gayle began to notice that the Hickman line tubes may be a problem, especially for children around Robin’s age.
She explained that when the tubes would hang inside Robin’s onesie or shirt, they would dig into her skin or they would be exposed to bodily fluids or food. The tubes were constantly in Robin’s way and the main concern was keeping them out of her hands.
“We didn’t want her tugging at the tubes and we didn’t want it near her diaper that’s full of germs and bacteria,” Gayle said. “Germs that enter through the caps can cause serious and possibly fatal infections. If she gets an infection in her line, it essentially goes straight to her heart.”
Gayle asked if there was anything that would help keep the line clean and out of the way, but all that was available was a mesh netting that didn’t provide what she thought Robin needed.
That’s when she had an idea.
An idea ignites: The Hickman Hider
Gayle searched online for something that might help the problem but the only options were either too expensive or uncomfortable.
“I wanted something simple that we could just put on Robin that wouldn’t bother her,” Gayle said.
Luckily, she had a previous background in sewing, so when Robin was out of the hospital, Gayle had a little bit of time at home to create a solution. The creation became the Hickman Hider. The Hickman Hider is essentially a tube top with a pocket where the tubes can be tucked in, which keeps the Hickman clean and away from diapers and little hands.
“The ultimate goal of the Hickman Hider was to keep Robin comfortable and safe,” Gayle said.
Gayle explains that when you are a mother to a child with cancer, you’re constantly worried about germs, sickness or something getting into that line.
“The goal was to make that worry go away,” Gayle said. “It keeps the tubes out of the way and took any temptation to play with them off the menu.”
So what does Robin think of her new Hickman Hider?
“Robin loves it and she is always in one,” Gayle said. “She has numerous colors and patterns that she alternates every day. At this point, I don’t know what she would do without one.”
Sharing the Hickman Hiders
Gayle says the primary mission of the Hickman Hider concept is to make life easier for tiny patients and their families and so she has been donating several to other cancer patients at Seattle Children’s.
Gayle has also donated Hickman Hiders to families across the U.S. She said the feedback she has received has been extremely positive.
Gayle offers a pattern and basic instructions for parents who may want to make their own Hickman Hider. They are also available for purchase on Gayle’s Etsy site, where families can buy different colors and patterns. Once Robin is done with treatment, Gayle says she will continue to make Hickman Hiders.
“When you are a family going through a time like this, you don’t necessarily have time to make them,” Gayle said. “It is definitely something I want to continue to do to help others.”
Robin’s road to recovery
Robin is now 21 months old and is doing really well. She is currently in her final round of treatment, which will last through July 2014.
“She’s catching up on her milestones, her hair is growing back and she’s getting some physical therapy.” Gayle said. “She is doing great!”
Robin still has her central line in, however, she might be able to get rid of the line in another month or so.
“I don’t want Robin to have any memory of the pain she has endured at such a young age,” Gayle said. “My hope for Robin is to live life as a normal kid.”
If you are interested in following Robin’s journey or donating to The Robin Fund visit: http://www.robinaviva.com.
If you’d like to arrange an interview with Gayle, please contact Seattle Children’s PR team at 206-987-4500 or at firstname.lastname@example.org.