Hard-Won Rewards
Dressing changes are especially hard so, not unsurprisingly, they are worth 100 Hope for Henry Bucks.
Because the six-year-old leukemia patient we work with is suffering numerous complications from his bone marrow transplant, he has a central line and a port implanted in his chest. Through these lines, he receives blood products, antibiotics, and other life-saving interventions. And because the lines are directly connected to his bloodstream and need to be kept sterile, dressing changes are required every week. This six-year-old’s fear of dressing changes caused by the pain associated with tugging on increasingly irritated skin to loosen the bandage was made easier only by the anticipation of the Hope for Henry Bucks he would earn. Eating and drinking — both critical to his ability to live another day — also reap $100, but he’s decided he only needs to earn $5 for being hooked up to his “pole,” a hardship he’s endured on-and-off for nearly one year. His older sister earns 50 Hope for Henry Bucks for equally difficult tasks like not crying when dad leaves the hospital, for putting up with her little brother, and for when she is feeling especially lonely.
Together, over a period of nearly two months, the siblings, who live together on the oncology floor in an isolated hospital room with their mom, have earned 6,500 Hope for Henry Bucks. Today they cashed in their stash for a brand-new, sleek Nintendo Switch with blue and red Joy-Cons. They picked it because it was something they could still do together. Perhaps one of the final things they can do together.
Children and adolescents with chronic health conditions face a unique set of physical and emotional challenges and a special set of solutions. They may be scared that their condition will worsen or be contending with pain, either from their condition or from its treatment. The uncertainty that defines their life, the experience of medical setbacks, impaired physical abilities, forced dependence, and continuous disruptions to their schedules and social lives often result in feelings of depression, loneliness, and anxiety. These emotional challenges can contribute to non-adherence (lack of match between patient behavior and medical provider recommendation) to prescribed treatments, which is the primary cause of treatment failure in pediatric chronic illness.
That’s why Hope for Henry created its groundbreaking pediatric patient incentive program — Super Path to Super Duper Better — which improves coping and medical outcomes for kids whose serious, chronic illnesses require lengthy hospitalizations and complex medical interventions like chemotherapy, radiation, and bone marrow transplantation. As the kids accomplish their medical challenges, we reward them with Hope for Henry Bucks, which they earn and exchange for gifts like Nintendo Switches — whatever will motivate them to do what they need to do to get better.
Price-gouging and shortages are not limited to PPEs and toilet paper. Acquiring a new Nintendo Switch in the time of COVID-19 was nearly as elusive. As increasing numbers of people are stuck at home with little to do, demand for the hot new Nintendo Switch is extraordinary. As demand increased, supply diminished, prices rose. Smart coders created bots to quickly buy up available product as soon as it hit the shelves and what was once a $300 product nearly doubled in price.
But there was a little boy in a hospital room fighting for his life, enduring one bandage change after another. And a little girl by his side, doing all the things she needs to do to be strong during the most unspeakably difficult time. And the one thing they can do together as his odds to make it to second grade becomes more and more tenuous is to play Super Mario on their Switch.
Hope for Henry’s mantra is to get to yes. We searched until we beat the bots to a brand-new device for which we paid $500, plus rush charges, and today the kids played together. As siblings should.
