September 06, 2012On Monday, August 27, Bo Johnson chose to come home to die.
For nearly a year he battled valiantly against an extremely rare, extremely aggressive form of Extramedullary Acute Myeloid Leukemia, also known as EM AML (read "Bo's Battle," for more). That Sunday, his doctors told him there was nothing more they could do for him – that he will die from his disease.
Bo didn't want to die in the hospital. Bo wanted to come home.
• • •
The 13-year-old Sister Bay boy with the humble smile has called the HOT Unit (Hemotology, Oncology, and Transplant) at Children's Hospital of Wisconsin in Milwaukee his home for most of the last year.
Bo Johnson, shortly after he shaved his head during chemotherapy treatments for Acute Myeloid Leukemia.
His battle began with a Labor Day jet-ski accident and a broken pelvis that wouldn't heal. On Oct. 8, 2011 doctors discovered he had Acute Myeloid Leukemia (AML), and within days he was prepping for chemotherapy. By the time he started treatment, his schoolmates had painted northern Door County orange – the color of the ribbon to show support for leukemia patients.
They made orange GO BO! ribbons, wrist-bands, t-shirts. They bought orange shoes and orange shoelaces. They painted orange ribbons on their cheeks and GO BO! on everything they could find.
"It's been overwhelming to see all that support," Bo says from the hospital bed his family set up in his grandmother's home in Sister Bay. His voice is slowed to a drawl by the pain in his jaw, but not enough to hide how happy he is to be home among his friends. His bed faces out a wall of windows toward the water, just a few steps down from the beach where he yearns to play with his friends. "I don't know what to think. People I don't even know; you just feel so appreciated and comforted."
Bo recognized right away that he was lucky. He had his mother Annika at his side, friends begging to visit, cards pouring in, and Facebook and Caring Bridge pages blowing up with messages from friends, family, and strangers.
But on his floor in the hospital he saw other kids suffering, some of them seemingly alone. Many would become his friends, his mentors, his teammates in the fight against terrible odds.
The Gibraltar Cross Country team showed their support for Bo Johnson at a meet Aug. 29, wearing orange ribbons and painting GO BO! on their calves. photo by Joy Manweiler.
"They taught me a lot," he says. "They gave me advice. Jack and I would go along the floor pulling pranks on nurses. They showed me that it's not all doom and gloom in there."
Jack Bartosz was one of those who taught him how to fight. The nine-year-old battled neuroblastoma for seven years, and his "I Back Jack" campaign raises funds to support research for new treatments. But there's a heartbreaking risk in making friends in the HOT unit.
Jack died the day Bo got the news that there was nothing more they could do for him.
"Bo has had to see a lot," Annika says. "He has watched other children die. Watched his friends die."
In the face of such trauma, Bo struggled to remain positive where others could not.
"Some of the kids refuse to come out of their room," Bo says. "They keep their windows shut, blinds shut. It's pitch dark in their room all day. But you're not gonna get anywhere doing that."
Did he ever want to do that?
"Oh yeah," he says, rolling his head toward his Mom, "but she wouldn't let me."
He says that every note, every card, every ribbon helped him answer the bell each day. The flash mob at Fall Fest, the GO BO! group photos at the school and the Sister Bay Bays game. The notes and updates on his Facebook page and the school assembly when Dr. Phil Arnold talked to the students about his disease. The candlelight vigil in Sister Bay's Marina Park turned into a video by Chris Miller for Bo to see.
• • •
Learning that he had cancer was a shock, of course, but he says it wasn't the worst moment in his ordeal.
A single orange ribbon waved from the Gibraltar School sign the day Bo Johnson returned home to Sister Bay. By the next day, orange ribbons waved from nearly every Northern Door sign, mailbox, and tree. Instagram photo by Myles Dannhausen Jr.
"I just figured it is what it is," Bo says. "I thought I would beat it. They told me it was going to be chemo, six months of treatment, and they said it was going to hurt…I didn't know it was going to be this hard. They weren't lying."
He says this from his bed, his feet sticking out from beneath a Wisconsin Badgers blanket. His hands are too weak to shake, so when family friend Doug Bensyl arrives, Bo opts for a fist bump instead.
It is futile to try to imagine what it must be like for a boy who loves baseball, basketball, and football, to be confined to his bed, his body slaughtered by this disease. It is more futile still to try to comprehend how his spirit remains so strong.
There was a time Bo and Annika thought they had beaten his leukemia. He came home last February, his chemo complete. He returned to school on a limited schedule, put on 20 pounds, and was on his way to recovery.
They took a trip to Florida together, and when they returned Bo went to a Cal Ripken baseball practice and even ran the mile, beating his goal of eight minutes by two seconds.
"Well, what can we say!?!" Annika posted in their Caring Bridge journal in March. "Bo has never been happier than to be home with all his friends and familiar faces."
Then he joined his classmates on the annual trip to Washington D.C. in late April. Near the end of the trip his arm swelled.
On May 3, Bo's 13th birthday, they learned that his leukemia was back. This time chemo was not an option. He needed a bone marrow transplant (also referred to as a stem cell transplant).
Bo was inspired by 9-year-old Jack Bartosz, who he met in the HOT unit of Wisconsin Children's Hospital. Jack died Aug. 27 after battling neuroblastoma for seven years. Photo by Annika Johnson. photo by Annika Johnson.
They always knew this was a possibility. It's not uncommon for an AML patient to relapse in the first year after treatment. They prepped for the transplant, but on June 21, Dr. David Margolis, the program director for blood and marrow transplant at the Children's Hospital of Wisconsin, entered Bo's room and delivered news they couldn't possibly be prepared for.
"We have grossly under-estimated Bo's burden of leukemia," Dr. Margolis, told them. "It's not just bone marrow-loving. It's bone-loving. We've never seen it like this, and we don't know how to treat it."
This is when they learned Bo had Extramedullary AML, meaning that the cancer doesn't confine itself to the bone marrow, but attacks the bones throughout his body. That's why it kept coming back, why Bo couldn't get healthy. The chemotherapy was successful in fighting the AML, but chemo doesn't kill the EM AML.
"Is this rare?" Annika asked him, through tears.
"Dr. Margolis practically fell off his chair and on top of Bo's bed," Annika remembers.
"It is so rare," Dr. Margolis told them. "We have never seen a biological make-up like yours. Your whole chemistry is unlike anything we've seen before. You don't function like a typical AML patient, and we don't know why."
Bo's schoolmates have shown their support in every way they can - ribbons, fundraisers, t-shirts, even special team shoes. photo by Paula Hedeen.
They learned that his chance of beating the EM AML were extremely low, perhaps as low as three percent. It was the most difficult moment of Bo's ordeal.
"I didn't really have anything to say," Bo recalls. "I just sat there with my eyes closed, waiting to hear what they said next."
Annika thought they were talking about the wrong boy. She couldn't talk; she could only cry.
His best option was Total Body Irradiation (TBI). It is not pleasant, and for the first time, his doctors gave him the option of palliative care.
"You don't have to do this," Dr. Margolis told Bo. "This is going to be terribly painful, and it is very likely that it won't work. Nobody will question your fight if you choose to go home."
On his second night home from the hospital Bo’s friends showed up to take him to one of his favorite “hot spots,” the Sister Bay beach. Pictured (left to right): Casey Weddig, Connor Brennan, Quinn Jacobs, Ian Chomeau, Seth Johnson, Andrew Iding, Ernie Erickson, Ava Erickson, Hannah Helm, Kara Caldecott, Shannon Martin, Adele Steebs, Mariah Davis and Bo Johnson (center). Photo by Chandra Johnson.
Annika left the decision to Bo. He had been through so much already. She had watched him writhe, heard him scream, in pain. It was up to him to go through it again.
Bo chose to put the gloves back on, to go another round against a disease that had him by every measure – a foot taller, a hundred pounds, an arm's length. He would take its devastating blows one more time, in hopes of sneaking in one lucky punch.
Dr. Margolis told Bo that he had to be 100 percent sure that he could do it. That he couldn't make any excuses, play possum for the nurses, which he was so good at, or beg out of walking laps around the floor. He gave Bo a motto.
"Just do it," he told him, and he drew a swoosh on the white board of his door.
"I went by that the whole time," Bo says. "You don't want to take a bath? Well just do it. You don't want to walk laps? Well just do it."
The TBI decimated his tissue. He suffered from mucositis, which left him with open sores on his tongue, throat, and intestines that felt like shards of glass were slicing through his body.
For four weeks he couldn't eat. The only thing he could swallow were the Cyclosporin pills to help his new stem cells grow. The pills were "three big horse pills," Annika says, and Bo had to take painkillers just to swallow them.
• • •
When Bo chose to come home, his only regret was leaving his "second family" behind. The nurses at Children's Hospital were incredibly personal, he says, helping him through every difficult day.
"It's hard to be away from the hospital because you feel so safe there," he says.
Annika has a great deal of respect for Dr. Margolis. He didn't shield Bo from reality through this process, didn't sugarcoat any news. In fact, he reminds Annika of a stubborn old Swede she knew.
"Dr. Margolis doesn't hold back, he spits it out. He reminds me of my Dad," she says, referring to her late father, the restaurateur Al Johnson.
Last week Dr. Margolis delivered the hardest truth.
The GO BO! ribbon has become a ubiquitous presence in Northern Door County.
"Bo is going to die from this," he told them.
Dr. Margolis asked Bo what he wanted to do.
"I don't want to die in the hospital," replied Bo, who in a world without cruelty would instead be choosing a new pair of shoes for the coming school year, not where he wanted to die.
"I came home because I wanted to see everyone, to remind myself what Door County even looked like. I love the sunset every night," he says. "I just didn't want to go through the treatment again knowing I could have the most painful death out there. I wanted a peaceful death."
Bo does not cry as he says this. He says it almost bluntly, as if it's patently obvious. He is surrounded now by about a dozen of his friends, part of the growing stream that are coming to see him. He is happy to be with them, they are happy just to have him back, asking when they can take him to the beach, the favorite of the "hot spots" he wanted to get back to see.
• • •
Before he got leukemia, Bo and his mother would lay in bed and he sometimes asked her – "What would I do without you mom?"
"Don't you worry," she told him. "I will always be there to look after you."
She never expected the tables to turn. Now they lie in his bed and he puts his arm around his mother. He tells her that he's not scared, that she's going to be okay.
"I don't want you to sit in your house and cry all the time," he said to his mother recently. "I need to know that you will be happy."
Bo spent a lot of time over the last year thinking about what he would do if he could get healthy again. He thought of becoming a nurse, to pay forward what his nurses have done for him. This summer he came to grips with the idea he might not make it that long.
"I wanted to live a decent life as long as I could," Bo says. He hoped not for a long life, but for another year or two. "I could do a lot in two years."
"He could just be with his friends," Annika says, "and do what they do every day. Go to the beach, the football games, the basketball games."
That evening his friends wheeled him down to the pier where they used to leap into the bay. The next night he made it to Gibraltar's varsity football game.
"He wouldn't stop talking about it!" Annika says. She wants to take him to the first Packers game Sunday.
More than anything, Bo says he hopes that the support and love that his friends and community showed for him will not dissipate when he is gone. His mind turned to the small gifts that meant so much to him.
"I wanted to help people if I made it out," Bo says. "I would just like to go to the hospital, even to [Scandia Village] just to help. Or take a spare $25 that would help a family up at the HOT unit. Donate food to the nurses. Just to help anyone I could in that kind of way."
Bo Johnson with his mother Annika.
At the end of our conversation we talk about one of those small gestures, the orange ribbons that sprouted up on signs, trees, and telephone poles when the community learned Bo was coming home. He talks about what the outpouring of support has meant to him, what his friends have meant to him.
"I want them to know that they were my friends," he says. "They've been supporting me. I'd just like to thank them. It means so much."
Now, he wants people to remember him, but he wants them to continue supporting others the same way. After he got the news that there was nothing more the doctors could do for him, Bo gave his mother a mission.
"I want you to run every run, walk every walk," he says. "It doesn't matter who it's for. Raise money, and go back to the HOT unit to give families a little money or a gift certificate. Anything."
• • •
On Monday, August 27, Annika announced that Bo was coming home to die. She had it wrong.
On Wednesday, August 30, Bo Johnson came home to Sister Bay to teach us how to live.
Myles Dannhausen Jr. was born and raised in Egg Harbor. He is a contributing writer for Door County Living magazine. Follow him on Twitter @MylesPulse.