“Make sure Jacob gets a room with a Magic Closet.”
— Henry’s advice to Jacob’s mom Rachel as they prepared for Jacob’s bone marrow transplant
My son Henry’s colorless, sanitized, isolated hospital room in the University of Minnesota’s Children’s Hospital’s bone marrow transplant unit was a shocking contrast from where we had been just two weeks earlier: preschool, Funland amusement park, a championship soccer game, and a going-away superhero extravaganza. Instead of the sounds of kids laughing or screaming with delight, the only noise was the constant swishing and beeping of Henry’s IV pump or the squeaking of the nurses’ shoes. Instead of colorful classroom walls featuring kids’ artwork or Henry’s bedroom filled with soccer trophies and Pokémon posters, the hospital room walls were white and bare. Replacing the scent of fresh-cut grass, popcorn or cookies was the antiseptic smell of clean. We had traded everything for almost nothing at all.
In Room 5 of Unit 4A where he would remain for a minimum of one month in nearly total isolation — an eternity to a four-year-old — Henry took numerous intravenous antibiotics throughout the day and night to protect him against infection. He had to brush his teeth and the inside of his mouth with a special pink sponge toothbrush five times a day, and get frequent sponge baths and bandage changes to prevent infection.
We knew there was no way we could get our child who had never taken pills before to all of a sudden swallow 28 a day. As luck would have it, there was a Magic Closet in Henry’s dreary hospital room.
Henry was the biggest Batman fan in the world. I knew that Henry would do almost anything for a brand-new Batman figure. So, we filled the Magic Closet with Batman action figures of all shapes and sizes. When Henry threw up, had to take a fistful of pills, or endure a fifth attempt to insert an IV into his bruised vein, the Magic Closet delivered. There was a Magic Closet in every hospital room Henry stayed in, from University of Minnesota Children’s to Johns Hopkins, Hackensack University Medical Center, and MedStar Georgetown University Hospital.
It was our way of acknowledging the hardship and providing incentives to keep Henry going. It also kept him taking his medicine and doing all the other things he had to do to get better. Because way before Henry was a patient, he was a kid. A kid who loved catching fireflies, dressing in costumes, playing soccer, collecting marbles, blowing bubbles, chasing Snow White around Disneyworld, flying kites, going on playdates, making snowmen, having lemonade stands, slow dancing, wearing a tuxedo, sleeping in tents, going to Spring Training, climbing trees, wearing flip flops, getting a hole-in-one in mini-golf, making s’mores, hitting Wiffle balls off our front porch, cracking open Batman pinatas on his birthday.
Henry’s experience of having to spend years in the hospital is not unique. 43 children are diagnosed with cancer each day and their average length of treatment — 1,095 days.
Regardless of their outcomes, they all share one stark reality. To get better, they must endure years of treatment. They must take medicines that taste terrible, make them weak and nauseous, and cause them to lose their hair. They must undergo medical procedures that are agonizing and scary. They must be away from family, friends, school, summer camp…everything that makes life worth living. To do all this, they need incentives. Because their lives depend on it.
