Meet the Super
Four-year-old Nusayba (“Nunu”) wasn’t thrilled about the prospect of returning to the hospital one year after her liver transplant to undergo a post-transplant liver biopsy, but now that she’s home, she tells her mom Sarah that she misses the hospital. Why? Hope for Henry!
“Hope for Henry makes such a difference,” Sarah says. “They normalize being in the hospital.” So when Nunu needed to be sedated through an IV for her biopsy, it was no surprise that Hope for Henry was there with a plan that “absolutely made a difference” for this little girl. Though Nunu is a tough kid who generally handles the stress of difficult procedures with grace and composure, Hope for Henry’s Super Rewards for Super Kids procedure-based incentive program made getting the IV “so smooth and so exciting for her.” Using the provided stickers and game board as a guide, Hope for Henry Child Life Specialist Liz walked Nunu through every step of the IV placement procedure before it happened. As the procedure was underway, Nunu placed “I Did It” stickers on the game board for each step she completed, and once she was done, she chose an exciting prize from the Super Rewards Fun Cart to honor the successful completion of the IV placement.
“Super Rewards helped Nunu understand what was going on, know in advance exactly what would be happening to her, and feel like she had some control over the process,” reports Sarah. “She even took the completed game board home to show her brother.” This sense of control and pride of accomplishment is just what Super Rewards is intended to provide. Way to go, Nunu!
Kali, who just turned 4, found out on October 7 that she would be receiving a small bowel transplant at MedStar Georgetown University Hospital on October 8. So that very day, she and her mom made the journey from her native South Carolina to Washington DC, leaving behind Kali’s beloved 11-year-old sister. As soon as Kali arrived on the transplant floor that evening, Hope for Henry Child Life Specialist Liz greeted her with toys, books, pajamas, and other goodies, helping ease the stress of the long car ride and fear about what lie ahead.
Since her successful surgery and “so many more goodies when she came out of transplant,” Kali has participated in myriad Hope for Henry programs. She received a room makeover through Hope for Henry’s Room of Your Own program, complete with sheets, pillows, blankets, room décor, and activities for Kali and her mom to do together. She celebrated Hope for Henry Day with more toys and festivities, and even got to dress up as Supergirl. Kali also celebrated her fourth birthday at Georgetown, selecting a Minnie Mouse-themed “It’s Your Birthday!” birthday box filled with toys, party favors, room décor, and, of course, a delivery of Georgetown Cupcakes. “Oh my gosh! So amazing!” her mom said about Kali’s birthday. “Everything Hope for Henry did lit up her whole day. In spite of the pain and the many tests she had that day, she was so excited to have her birthday, even though it was in the hospital.”
The program that has made the most impact on Kali, however, has been Hope for Henry’s Super Path to Super Duper Better. On an ongoing basis, Kali has to undergo multiple procedures and tests that scare her—like mouth suctioning and swallowing tests, scopes two times per week, ultrasounds, ostomy bag changes, and physical, speech, and occupational therapy. But Kali is motivated to complete these painful, but necessary, procedures and tests as fast as she can so she can receive her Hope for Henry Bucks and, ultimately, the Barbie Dream House and car she’s saving up for. “The Bucks absolutely make an impact” on Kali’s ability to cope and get through her procedures, her mom says. “Whenever she has to do those tests and they’re hard or scary or painful, we always tell her that she’s working toward her Bucks and her Barbie Dream House.”
“This whole journey has been amazing,” says Kali’s mom. “Kali misses her sister so much, but everything the staff and Hope for Henry have done has helped her get her mind off missing her and wanting to be home with her.”
In remission from Rhabdomyosarcoma, a soft tissue cancer, five-year-old Gabe has to go to Cleveland Clinic Children’s every four months for scans. This December was the first time Child Life Specialist Selena was able to use Hope for Henry’s Super Rewards for Super Kids program to help prepare Gabe for everything he would experience during his sedated MRI. Before the procedure, while Gabe’s mom Olivia spoke with the medical team, Selena and Gabe used the Super Rewards stickers to lay out on the game board every step Gabe would take during the procedure. This way, he could anticipate what would happen and ask any questions he had.
As the procedure began, Gabe got to place “I did it!” stickers next to every step he completed. When he was finished, he joyfully showed his mom his game board that displayed everything he had accomplished and selected a Spiderman Funko POP! from the Super Rewards Cart. “Using the ‘I did it!’ stickers made him feel proud the whole time he was having his MRI, and at the end, he reviewed his board with me and got to have his proud moment.”
For Gabe’s next MRI, which will be Gabe’s first MRI without sedation, Olivia is grateful that Super Rewards will be able to help Gabe through it. “This is the first time he’ll be having an MRI [without sedation], and Super Rewards will give him the confidence he needs because any time something is new, it’s scary. It will help him feel braver. Bravery is a big part.”
Ten-year-old Sonam, a small-bowel-transplant patient at MedStar Georgetown University Hospital, was given special permission to leave the hospital to celebrate his birthday at home with his family, which, according to his mom Brandi, was bittersweet. While an at-home celebration lifted Sonam’s spirits, returning to the hospital a few days later felt crushing. In fact, Brandi and Sonam were an hour late for his first hospital appointment on the day of their return because Brandi “just had nothing left to give.”
Hope for Henry Child Life Specialist Liz knew—without being told—that this would be a very hard day. So in anticipation of Sonam’s return, she unpacked a Hope for Henry birthday box and decorated Sonam’s room with all kinds of Star Wars party décor and a birthday banner signed by his medical team. When Sonam walked into his decked-out room, his medical team sang Happy Birthday, and Liz pulled out party favors and wrapped gifts. Brandi says, “I felt the love—I just broke down. The whole rest of that day, we forgot we were even in the hospital. Our spirits were lifted back up.”
Liz has made Sonam’s hospital stay much more bearable in so many other ways. She has brought him books and toys, accompanied him to innumerable procedures, and transformed his room into a personal, cozy space through Hope for Henry’s Room of Your Own program. “Every day, it seems, she brings something to Sonam that he likes. It’s always personal to him. She listens to him, she knows what is meaningful to him. He is a reserved child, but he is not reserved with Liz. She is his personal friend. Without her, I don’t know that we would’ve gotten through some of our hardest days.”
Liz also helped Sonam by introducing him to Hope for Henry’s Super Rewards for Super Kids program. The morning after a late-night change of the dressing surrounding Sonam’s PICC line, Sonam expressed to Liz that the dressing change was scary and painful. Liz pulled out a Super Rewards program packet, showing Sonam with the included stickers and game board all the steps that he had undergone during the procedure and learning from him which aspects were the most difficult. Using the program as a guide, she also helped him find the words to express to the medical staff when he is uncomfortable or needs a break. The next time he had his dressing changed, he used the words Liz had taught him, and the procedure went much more smoothly. More importantly, Brandi says, “He felt empowered. He was in charge of his own treatment. Usually I am his voice, but he used his own voice. Super Rewards did that for him.”
Brandi says she could “go on for days” about the impact Hope for Henry has had on their long stay in the hospital, including the nine weeks during which Brandi was unable to leave Sonam’s room due to COVID restrictions. “It’s the model for quality and care across the board. Everything is above and beyond in terms of quality and quantity. And Liz—she always puts a smile on our faces. She’s been a support not just for Sonam, but also for me. She is our rock.”