Dec. 16, 2016.
The night of the Christmas show.
Erica’s eyes are locked on her honey-haired 4-year-old, Adyn, as he makes his way up to the front of the church with his pre-kindergarten classmates. Soon their little voices ring out with the childhood favorites of the season.
“Frosty, the Snowman, was a jolly, happy soul,” they sing.
But Erica, sitting in church with her husband, James, her mother, and 3-year-old daughter, Abby, can’t take it in. She has just ended a phone call with the doctor. Adyn’s test results are back.
“Rudolph, the red-nosed reindeer,” the kids chirp.
The doctor told her that her little boy has cancer. Acute lymphoblastic leukemia. She never expected this. Yes, Adyn was having some unusual bruising, and had not been feeling well. But cancer?
“We wish you a merry Christmas…”
The family weeps quietly in the church as the children sing, and everything about life as they have known it up to now fades to black.
Dec. 11, 2018.
Adyn is curled up on the couch inside his room on 7 South, the cancer floor at Johns Hopkins All Children’s Hospital. With furrowed brow, he is laser-focused on his latest Lego masterpiece, a colorful and intricate model train, complete with railroad tracks on the floor nearby.
Left-brained, thoughtful and articulate, Adyn speaks with the words and inflection of someone older than his six years. When a new visitor comes in, he begins to organize.
“Stand right over here, please. I’d like you to see my train. But I’d like you to wait until I’ve finished the caboose. Because you can’t have a train without a caboose.”
“He likes things to be a certain way,” Erica says. “That’s just how he is. There’s a certain order to things.”
For a boy who likes structure, Adyn has shown remarkable resilience. Over the last two tumultuous years, he has endured a cancer diagnosis, multiple hospital stays for chemotherapy treatments at Golisano Children’s Hospital near the family home, frightening drug reactions, a lung infection, radiation—so many tough days.
There were some blessed months of remission. Adyn only missed a single day of kindergarten. He tussled with his sister, played soccer and did stuff boys do. Then, on his very first day of school as a first-grader, came the dreaded news. Relapse.
Erica and James sat the kids down.
“We told them Adyn’s cancer had come back, and we had to fight again,” Erica says. “We fight because … that’s what we know how to do. We’re not given a choice in this.”
Adyn would need a bone marrow transplant for his high-risk pre-B cell acute lymphoblastic leukemia (ALL) —and he would need the right donor.
Johns Hopkins All Children’s experienced bone marrow transplant (BMT) team is adept at caring for patients and families through the entire transplant process, from the time they're first referred by their oncologist, through the actual procedure, and beyond that, through the delicate period of care required after the BMT.
But who would make the best bone marrow donor for Adyn? The family is tested. Five-year-old sister Abby proves to be a near-perfect match.
“Even if you can find a 100-percent match from a donor who’s completely unrelated,” says Gauri Sunkersett, D.O., Adyn’s primary transplant physician, “we always evaluate the immediate family first, because that can decrease the chance of potential complications.”
Abby adores her big brother. When Adyn was undergoing immunotherapy at home, he wore a backpack with his medication feeding into his port 24 hours a day. Abby would follow him around the house and carry his pack when it became too much for him. The little girl with the big personality was fond of proclaiming, “Cancer picked the wrong kid!” when referring to her brother.
But her parents worry. They worry about any risk of complications for their daughter. Will she understand what is being asked of her? Can she carry the physical and emotional weight of this choice?
“I remember explaining to her that her brother has ‘bad bones,’ and she has ‘good bones.’ Her brother needs some of her ‘good bones’ to get better,” Erica says.
Abby will have her bone marrow harvested on the same day of her brother’s transplant. But as the day grows closer, she is struggling.
Child Life team members play together with Abby. They want to help her to understand what will happen, and to offer her comfort.
“We also wanted to make sure she didn’t feel as if being the bone marrow donor was her only role in the family,” says Child Life specialist Heather Bailey. She didn’t.
“What helps you when you are scared?” they ask.
“My family and I pray together,” she answers. “There are lots of other people praying for us, too.”
“I’d like her to understand what she’s giving him as his sissy,” Erica says. “She’s saving his life. There’s no greater gift you could give any one.”
Abby’s biggest motivator will prove to be her own school Christmas show—scheduled for a couple of days after her procedure. She’s been so excited, practicing her Christmas songs, and she wants more than anything to be there.
Bone Marrow Transplant Day
Early on the morning of Dec. 12, Abby undergoes general anesthesia. A needle is used to harvest her bone marrow from her pelvic region, and it is then immediately sent by courier to H. Lee Moffitt Cancer Center in Tampa for processing.
Within a few hours, Abby is sitting by her big brother in his room on 7 South, laughing and trading knock-knock jokes.
Abby: “Knock, knock.”
Adyn: “Who’s there?”
Abby: “Interrupting cow.”
Adyn: “Interrupt …”
She’s feeling some aches and pains, but her sense of fun is intact. She is very proud of herself, as she should be.
“They just put a needle in my arm, and I went to sleep,” she says. “When I woke up, my voice was scratchy and funny.”
Adyn gets his bone marrow transplant early that evening. For all the lead-up, the waiting and the anticipation, the procedure itself is a simple IV infusion that takes only about a half hour.
“I was surprised at how uneventful it was, and I was relieved it all went smoothly,” says James, Adyn’s dad.
Now they wait …
Around the time children across the world are ripping open the wrapping paper to reveal their new toys and games and bikes, this family is hoping for a different kind of gift … a sign that Abby’s bone marrow has been well-received.
The transplant team is watching for Adyn’s bone marrow to begin producing healthy cells. A consistently higher white blood cell count would be a most welcome sign.
“That is called ‘engraftment’ and it is a very important milestone in the bone marrow transplant process,” Sunkersett says.
That is Erica’s sole Christmas wish—the restored health of her son. She is so tired. If she could, she’d load her family into that magical Lego railcar her boy is building and take a fast train out of here, away from hospitals, away from illness, away from fear. Still, she is extraordinarily grateful for the good days.
“To be able to see my children still smiling through all of the pain and chaos and the unknown, that’s what fills my heart. They are such good kids.”
James imagines a life that is normalized, a life that could be.
“My kids … just to go fishing, to go to the zoo, the idea of a normal family life. That thought keeps me going.”
There Must Have Been Some Magic
Forty-eight hours after Abby underwent the procedure to extract her bone marrow to save her brother’s life … she is attending her Christmas show. She’s wearing her favorite dress, standing with her little classmates, all in their Christmas attire. A chair is there for her, in case she’s hurting, but she barely uses it.
Family and friends cheer her on as she sings, full-voiced and face beaming—Rudolph, the Red-nosed Reindeer, Feliz Navidad, and of course, the Frosty song.
“Frosty the Snowman … was alive as he could be.
And the children say he could laugh and play just the same as you and me.”
Her brother couldn’t be here, of course. Adyn will be in the hospital for a long while.
That’s OK, though. Tonight, she’s singing for him.