When Stanford University School of Medicine science writer Tracie White first saw Whitney Dafoe’s face, she was peeking at him through the keyhole in his bedroom door. White sat, not too quietly, outside the room — something his family does to gently let him know it’s time to begin his day.
Dafoe, 37, has suffered for more than a decade from what was eventually diagnosed as myalgic encephalomyelitis/chronic fatigue syndrome. The illness robbed the young photographer of his ability to work and travel, something he loved. It left him weak and unable to eat, talk or tolerate sound, vibration or touch. Even getting out of bed is painful.
On the day White met Dafoe, his family members — his father, Ron Davis, PhD, a renowned Stanford professor of biochemistry and of genetics; his mother, Janet Dafoe; and his sister, Ashley Haugen — were preparing him for a ride to a local hospital to have a new feeding tube inserted. The preparations included giving him Ativan, an anti-anxiety drug, to lessen the stress of the change in routine.
White had first visited Dafoe’s home while reporting a Stanford Medicine magazine article about his father’s search for a cure. White and Davis detailed the family’s journey in a new book, The Puzzle Solver: A Scientist’s Quest to Cure the Illness That Stole His Son, from which the following excerpts were selected.
A family working
as one to find a cure
Ron looked up as Janet entered the kitchen; she patted him on the shoulder and took the three filled syringes. I heard her shuffle down the hall to Whitney’s bedroom. The couple, married almost fifty years, often move in tandem like this. One picking up where the other leaves off. A team.
Ashley arrived dressed in black yoga pants, her long blonde hair pulled back in a ponytail. With the grace of the ballet dancer she once was, she too crossed through the kitchen to the closed hallway door that leads to Whitney’s room. Her tiny, white fluff-ball of a dog, Frankie, was tucked under her arm and started to yap. Janet’s head popped out suddenly from behind the hallway door.
She grinned and reached for the dog. She too was dressed in black, as were Ron and I because of Whitney’s sensitivity to colors. That was our uniform for the day. Janet squeezed Frankie tight, laughing as the dog’s long pink tongue washed her face. Ashley set Frankie down on the kitchen floor, and together they walked back to Whitney’s bedroom, with Ron following. Then Janet waved to me to follow.
“Stay outside of the bedroom in the hallway,” she instructed me. She’d told me earlier they’d discovered that Ativan did more than calm Whitney’s nerves. It also seemed to calm some of his sensory processing difficulties, making sounds and movement more bearable. When he took the drug, he could communicate with his eyes and pantomime using his hands and arms and facial expressions. I watched carefully from the door as the family, huddled together in Whitney’s small bedroom, gathered around his bed as if in prayer.
These moments, I knew, were so rare, they were almost sacred, and emotions ran raw. Ashley sat cross-legged on the floor in front of her brother’s bed, her eyes rimmed in red from tears. Ron, smiling softly, reclined on the carpeted floor just behind her, his long legs stretched out straight. His gaze drifted outside to the backyard.
The winter sun sat on the leaves of an oak tree, painting the room’s carpet with reds and gold. Janet stood next to the bed, beaming down at her beloved boy, waiting for him to acknowledge them. After the drug worked its way into his blood system, Whitney emerged from his comatose-like state.
His eyes opened. The family had told me that usually, at this point, he would look up at his dad with his eyebrows raised, asking, Is there a cure yet? His father would shake his head no, then make fist pumps with his hands, meaning he’s working hard. And then Whitney would begin to pump his fists too, asking for his dad to work harder.
Then they joined together, fists pumping out like boxers. A few hours later, as the drug began to wear off, Whitney’s newfound energy would slip away. In tears, he would head back to the abyss. Ron, Janet, and Ashley all would begin to sob. And then, suddenly, he was gone, alone again in his comatose-like state.
But today was different. He raised his hands to his face and clicked an invisible camera. Ashley sprinted from the room to get a real camera, her high-end Nikon. I couldn’t believe what I was witnessing. I had expected to see Whitney alert for a only few minutes; now he was sitting, smiling and interacting with his family. Tears began to fill my eyes. He was still unable to speak, but through pantomime he told them that he wanted a photograph of the family together.
He could not hold the camera, but from his bed with two ice packs covering his concave stomach, he gave instructions to Ashley on just how to stage each photograph. His hands motioned his parents to move in together for a shot. The professional photographer still knew how to command a room. I could feel a hope fill the room. Ashley even laughed.
Early on, before he got too sick, Whitney had begun to document his illness with plans of someday making his own film about the disease. Now it appeared he still wanted to tell his own story. Maybe I could help him.
This excerpt takes readers back
to before Davis began investigating:
Ron would come home in the afternoons and help Whitney put on compression socks to ease the pain in his legs. And continue to add the endless numbers of supplements and antibiotics and other drugs to his IV line.
Whitney was diagnosed with sleep apnea and tried using a CPAP machine to help him breathe. After months of trying, he gave up. He just didn’t have enough energy to deal with it. Ron began to panic. He watched his son wasting away and couldn’t do anything to stop it.
Whitney still managed to find bits of joy listening to his music: He filled the empty hours by creating playlists on his iPod from bed. He liked to curate the lists to tell a story and named them things like Long Road Mix and Bummer Mix. He could eat some foods, although that was getting more difficult each day. Ice cream had been replaced by yogurt and constant stomach pain. But Ron was busy hatching new plans. He couldn’t stand by and watch his son’s endless suffering.
And so he got started on his own. I imagine him one night, shuffling out to his toolshed out back after setting up Whitney’s IV, filling his water containers, and changing his socks. Ron had set up a sort of makeshift science lab on his tool bench. It was cluttered out there, so he cleared out a space on the workbench, pushing aside his old woodworking tools. He showed me the centrifuge — a tool used for blood separation and analysis. It’s still there, small and round, rather old, but functional. It reminded me of one I’d used in a high school chemistry class.
“Is this where you built Whitney that beautiful oaken cradle that you guys keep inside the house?” I asked him.
“No, we hadn’t moved to this house yet, but these are the same tools,” Ron said, looking at one of the hammers nostalgically. He hadn’t been out here for a while and was sort of embarrassed by the clutter. Plus he was always hesitant to talk about himself, so he laughed nervously when he added, “My dad was a carpenter. I’m good with my hands like he was.”
That’s how his scientific investigation first began. Once a week, after chatting with Whitney in his bedroom, he’d take a vial of his son’s blood, then carry it with him to the work shed out back, curious to see if he could find any molecular clues to the mystery. He’d watch it spin around fast in the centrifuge, separating into its different parts, and then he or Janet would get into the car and make the twenty-minute drive over to his lab for processing.
This is the way Ron has worked throughout his life. He would find the right tools to tinker with, in settings where he felt free to disappear into the imaginary three-dimensional worlds of scientific exploration. A place that feels safe to him, that feels like home.
… As Ron began to study his son’s blood cells, he also began to worry about how he would fund any future research. He set to work making plans for experiments and more advanced testing, getting his lab involved. He knew it would take a lot of money. He made plans to run every kind of available test in his high-tech Stanford lab on Whitney’s blood, searching for clues of what had gone so badly wrong in the cells’ molecular pathways that could lead to treatments or even cures.
The list was long and complicated. Testing would include things like cytokine analysis, genome sequencing, microbiome sequencing, metabolomics, magnetic levitation profiling, PCR assays for any viruses, antibody assays for mycotoxins, and much more.
Over the years, Ron’s lab had developed a wealth of biotech inventions and advanced diagnostic testing tools. In 1989, Ron cofounded the Stanford Genome Technology Center with a large government grant to help build tools for the $3.8 billion Human Genome Project, the same project called by President Bill Clinton at its completion “the most wondrous map ever produced by humankind.”
Ron became director of the lab in 1992 and has remained there since. The lab made a name for itself as a think tank for the creation of diagnostic tools to help battle human illness and pinpoint disease. It also became the launching pad for biotech scientists who would go on to develop successful new startups to advance medical care.
But now he was thinking about changing the course of his research. Exactly how to launch this new project kept him up nights. He needed a plan.
From The Puzzle Solver: A Scientist’s Desperate Hunt to Cure the Illness that Stole His Son by Tracie White with Ronald W. Davis, published by Hachette Books. Copyright © 2021.