“Every surgeon carries within himself a small cemetery, in which from time to time he goes to pray, a cemetery of bitterness and regret, where he must look for an explanation for his failures.”
— René Leriche, “La philosophie de la chirurgie,” translated by Roberta Hurwitz
How then to celebrate the victories?
The question weighs on a University of Virginia pediatric neurosurgeon and his former patient, who is now a nurse to the teeniest patients at Carilion Roanoke Memorial Hospital.
The story of Dr. John Jane Jr. and Addie Kingery is joyful. He not only saved her life as a tumor pressed upon her brain stem, but he did it in a way that allowed her to become a collegiate high jumper. The care she received at UVa inspired her to become a pediatric nurse and pay it forward.
But celebrating doesn’t come easy for the surgeon in whose hands parents place their children’s brains or for the NICU nurse whose slender hands dwarf newborns too fragile to hold.
“She has such a heartwarming and touching story, and a triumphant story, it is one that we felt people should know about because it has the possibility of being inspirational to people who are facing similar circumstances,” Jane said of a video produced by UVa Health System to share their story.
“But I have to let you know, I feel conflicted about this. The fact is not everybody does well,” he said. “And so, as a physician, I feel at times reluctant to celebrate our victories because there are children and adults who by my hand aren’t going to have her outcome.”
People with Kingery’s exact tumor can be left with permanent lifelong deficits. She knows this. She saw children just like herself with the same tumors while interning at St. Jude Children’s Research Hospital in Memphis.
“I always knew how lucky I was to come out of such a traumatic surgery and be basically fine, but seeing that opened my eyes even more. And that defined that I wanted to go to nursing school. I decided in the hospital I wanted to go, but that really solidified when I saw what could have been. I had to do something to give back because I was so lucky,” she said.
Kingery was 18 when she first met John eight years ago on New Year’s Eve of her senior year of high school. She grew up in the Southwest Virginia coalfields town of Lebanon, played a number of sports and was being sought by colleges to high jump.
Throughout high school, she would pass out when she became overheated playing indoor sports. Her parents, Tim and Susan Coleman, took her to doctors.
“They never could figure it out. They made me check my blood sugar, but it was always fine,” she said.
She slept a lot, more than typical teens.
“They found out I was anemic. There was always an answer to the little stuff that was happening. Nothing like, oh, you have a brain tumor.”
By Christmas break, Kingery was having excruciating morning headaches accompanied by dizziness so weird that it hurt. Her ears felt as if they needed to pop. Her hand trembled.
Then she passed out in a hot shower.
Her mother took her back to Dr. Jack Davis in Richlands. Kingery said the pediatrician had cared for her since the moment of her birth when she did not breathe and watched over her that first night. Now, he was concerned that the morning headaches meant pressure. He wanted a CT scan. The insurance company did not agree.
“My parents were, ‘If you think she needs it, we’re going to pay for it.’ I had the CT scan that day,” she said.
She and her mom were told to go to lunch and then head back to Davis’ office.
“I’ll never forget. I don’t even know what you call it where they read x-rays with a back light because it’s all digital now, but the CT scan is up there and you could just see a tumor. And I said, ‘What is that?’ It was scary, and I started crying,” she said.
Davis told them the radiologist thought it was a cyst that needed watching, so he had already made an appointment a week away at UVa for them to follow through.
“When we left, my doctor didn’t feel comfortable with the radiology report, so he sent it to another one to read,” she said. “The next morning he called my mom crying and said, ‘She needs to get to UVa right now.’ ”
There was a cyst, but it was attached to a tumor that was attached to her brain stem. It had grown so large it had nearly shut off the fourth ventricle and Kingery’s life.
Her parents didn’t want to scare her, so she remained oblivious as they forced her to abandon her New Year’s plans and get in the car for the four-plus-hour drive from Russell County to Charlottesville.
“Luckily I never had an ER visit because I went straight to a room, and that never happens. I went straight to an MRI, which really doesn’t happen, and when I came back to the room in the ER, Dr. Jane Jr. was there,” she said. “He pulled up the MRI on the computers. That’s when I found out it was a tumor.”
But, Kingery told them, “I’m fine, I ran six miles yesterday. And I’ll never forget the resident turning around and said, ‘You did what?’ ”
Jane dosed her with steroids for a few days to shrink the tumor before surgery.
Kingery asked if she would be able to high jump and run.
“He said, ‘I don’t want to be negative until you know, but my first answer is no, you are not going to be able to do that,’ ” she said. “So that was hard to see what I had worked so hard at and my plans weren’t going to happen.”
To operate on the back of the skull, surgeons must remove bone.
“We generally replace it in a way that we don’t have to typically account for a high jumper,” Jane said. In closing Kingery’s opening, Jane reinforced it with titanium mesh to lessen her changes of sustaining an injury while jumping.
“I must say I think almost every neurosurgeon would have done the same. I don’t think I did something particularly amazing with her reconstruction,” he said.
Kingery thinks differently, and said there was much more to it than Jane lets on.
“My neck is an inch thicker so I would be able to run again and do high jump. He still didn’t think it was possible but he wanted to give me every chance he could. That’s not something you think of with a neurosurgeon, someone who makes a connection with you,” she said. “You don’t think of someone super compassionate but of someone super smart who is going to get the job done.”
Jane said he learned from the best, including his father, John Jane Sr., who didn’t see patients as operations but as people with problems that they could help.
“I don’t want to be prideful because it turns out neurosurgery is a humbling field. Nobody does anything alone. There is a whole group of nurses and residents and critical care doctors, and neuro-oncologists and radiologists. The surgeon is in the position where we get all the thanks and are given a heck of a lot of credit,” he said. “There is not a thing we could have done alone without the entire team.”
Kingery understands that. She sees it in her work, and she saw it during her stay at UVa.
A processing glitch
Until she was recovering from brain surgery, Kingery had planned to become a veterinarian.
“I remember looking at my mom and saying I think I’d be a good nurse,” she said.
First though, she had to get well. She was weak, dizzy, had lost a lot of weight and muscle. She needed help to sit in a chair.
Her aunt and her track coach, both physical therapists, pushed her.
One day in April, as she was walking on a treadmill, her coach told her she was ready to run.
She eased back into track.
“I focused on the high jump and ended up winning the regional track meet. I went to state, which is amazing. I never thought it would be possible,” she said.
Kingery ran track and competed in the high jump at Roanoke College for two years before tearing her meniscus and sustaining a stress fracture in her shin. She thinks she went back too soon as she had lost all those years of conditioning.
She studied biology in college. The first year, mostly a repeat of high school, was easy, but when the work got harder no matter how hard she studied and took advantage of professor hours and tutoring, she was getting Bs and Cs.
“I was working way harder than it was showing. Something isn’t right,” she said. A round of neurological testing found that she has a processing glitch.
“Your brain is a filing cabinet and you have all the things in there to pull out. I can do it, but it was backward,” she said. She’s taking medication to correct the area of her brain that was damaged.
She still gets migraines, especially with shift work. She said her colleagues are so supportive that she was able to go on steady day shifts before she would have been eligible. That has helped.
Kingery still goes to UVa for scans and exams once a year. She doesn’t see Jane but he follows her progress.
She tries to drop by and say hello when she’s in Charlottesville. They’ve kept in touch, and he attended her wedding in December 2017 to Reece Kingery.
Jane earlier had helped her get the internship at St. Jude that reaffirmed her calling to be a nurse.
She enrolled in Jefferson College of Health Sciences’ accelerated nursing program after graduating from Roanoke College, and when she did a rotation in the neonatal intensive care unit, she knew where she belonged.
Kingery said most of the nurses who cared for her at UVa were so compassionate, but not all.
She remembers one nurse who came in, yanked up her head wrap without asking in order to check the incision, told her she was going to give her a shot that would hurt, then jabbed it in.
“That doesn’t mean she was a bad nurse. She was just doing what she needed to do and leaving,” she said. “My dad was like so mad. He was like, why would she be that way? I was thinking she didn’t do anything wrong. Now, I realize, I didn’t want that. It changes your whole outlook.”
She carries within her what it was like to be so vulnerable, and what it was like for her parents to trust others to make their daughter well. So when she’s on duty nursing babies born months before they were due, she doesn’t hurry through a checklist of tasks. She knows some of the infants will never leave the NICU.
“Even when they are doing well, premature babies can take 10 steps forward and just as many backward the next day,” she said. “You don’t want to get too excited or get their parents’ hopes up because the next day it could be the reverse. I know that must be how Dr. Jane feels. He treats every patient the same because he is so optimistic and amazing, but knowing you don’t really know what the outcome will be, that’s scary. You hope that it will be good, but it’s not always like that.”
Jane said there’s a need to rapidly establish trust because there isn’t time for his patients and parents to think about what is happening.
“You need people to understand the gravity of the situation, and at the same time you cannot take away all hope. How do you adequately let them know the risks of a procedure without causing them such tremendous anguish,” Jane said.
Kingery said she trusted Jane instantly and felt as though she had known him her whole life.
“It’s not as though Addie and I and her family communicate all the time. We don’t, but by the force of what she faced, and how well she did, it quite naturally created a bond between us,” he said. “The thing that amazes me is that such a strong bond also develops between me and families of patients who don’t have the kind of outcome Addie has.”
How then can he celebrate patients who do well without dishonoring those who didn’t? How can she celebrate being healthy without feeling guilty about those who are not?
She does it by making the most of being OK because not everyone can be.
“No matter what kind of day I’m having, I leave it at the door, because I know every day that I come to work is probably someone’s worst day ever,” she said. “How can I make it better?”
He does it by accepting grace.
“I never growing up understood the concept of grace. You’d hear it at church, and I never understood the concept at all, and maybe I still don’t know it perfectly, but the closest understanding of grace I have is through the relationship I have with patients who have not done well and who give me forgiveness,” he said.