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Father’s photos capture faces of those caring for son with leukemia

Updated: 2013-08-04T03:23:49Z

By ERIC ADLER

The Kansas City Star

People cope with crises in their own ways.

But at Children’s Mercy Hospital, one Shawnee father has been dealing with his crisis — a son diagnosed last year with leukemia only a week after his second birthday — in a manner that staff members say has left a truly lasting impression.

Jason Tracy, 37, has been asking them to say “cheese.”

Doctors. Nurses. Care assistants.

The amateur photographer has, in fact, asked everyone who has directly helped in the care of his son, Jack — who is now 3 and who on Monday received what doctors hope will be a lifesaving bone marrow transplant from his 6-year-old sister, Julia — to sit for a formal black-and-white portrait to include in a digital album. Tracy calls it “The Faces of 4 Henson” after the name of the hematology and oncology wing.

“If you do anything funny or goofy, it’s pretty much guaranteed to be in the book,” he has promised each subject.

It is a promise he has kept to staff members who cross their eyes or flash rabbit ears over friends’ heads.

Surprising to Tracy is the breadth of the album, the large number of people who are frequently overlooked or forgotten in the midst of a medical crisis but who have a hand in the care of any single individual.

The portrait count so far: 90-plus and counting.

There’s Crystal, the care assistant who would throw back shots of milk with Jack to help him drink and who would wake Tracy, sleeping at his son’s side, with, “Good morning, sunshine!” She’s the one who decided to work in medicine because she knew what it was like to have cancer.

On the second day Jack was in the hospital, Crystal — who once had non-Hodgkin lymphoma — gave Jack’s labor attorney mom, Katherine Tracy, a piece of advice she uses time and again.

“She told me you can’t go to the dark place,” said Katherine Tracy, 36.

Dealing with cancer is hard. Treatment will bring highs and deep lows.

“She told me you can’t go there because there is no coming back from that. I don’t go there. I can’t go there.”

There’s Stephanie, a nurse who dressed as gymnast Jordyn Wieber for Halloween. And there’s nurse Brittany, whom Jack called “Randy” because he couldn’t pronounce her name.

Next to their portraits, the subjects have written short notes to Jack about themselves and about him.

“She’s the one who would dance and sing with him,” Katherine Tracy said of Brittany.

In her blurb, Brittany reveals: “I was a patient on this floor when I was 12.”

She had a blood disorder.

“I wanted to pay it forward,” she wrote.

There are dozens more: Audra, who is also in the Army National Guard, and weekend night nurse Leslie, who assured the Tracys that “life is not cancer.”

There are the six workers on the staff who knelt together in a three-tier pyramid for their portrait.

“It’s a therapeutic thing. For them and us,” said Jack’s physician, hematologist and oncologist Allyson Hayes, 35. In her portrait, she strikes a pose, eyes narrowed, clasping a needle.

“I look so like a psychotic person,” she said with a laugh.

For Jason Tracy, who works as an information technology administrator, the point of the album is basic. His child is so young that if all goes well, Jack’s cancer one day will be a vague shadow in a distant past.

“We didn’t want Jack to forget all the great people who cared about him and took care of him. And not just him,” Jason Tracy said, “but all of us.”

Jack’s diagnosis floored the Tracys.

Their active boy had always been healthy.

“Perfect,” his dad said. “Never had an issue a day in his life.”

On May 12, 2012, he turned 2. His mom had noticed a slight rash on his thighs. She took him to see his pediatrician for an annual checkup on May 18.

“She pulled the blood and got the results back and, literally, called Children’s Mercy and had him admitted before my wife left the office,” Jason Tracy said. “She says, ‘The doctor found something weird in his blood. … I don’t know what this means yet.’”

It meant acute myeloid leukemia, known as AML, the second most common leukemia in children, after acute lymphoblastic leukemia, or ALL.

AML, a leukemia that comes on suddenly in the bone marrow, affects about 1,500 to 2,000 children each year in the U.S., about half the number of ALL.

The survival rate of the more common leukemia is between 80 and 90 percent, but Jack’s form has a five-year survival rate after treatment of about 55 to 60 percent, said Children’s Mercy bone marrow transplant surgeon Mohamed Radhi.

“We aren’t in a perfect world, so not everyone can be cured,” Radhi said. “The idea is, of course, to completely remove those cancer cells, the leukemia cells — eradicate the cancer completely.”

From June to November, Jack went through four rounds of chemotherapy.

In order to cope, Jason Tracy — who had taken photography classes at Johnson County Community College — began documenting his son’s journey.

“My inspiration was — and I hate to put it bluntly — if he gets through it, I want to show how strong he was,” he said, adding there was also a fatherly reason.

“If he doesn’t get through it, I want to document every last day with him.”

To the Tracys’ surprise, they discovered that between Jack’s third and fourth round of chemotherapy, their oncologist had left Children’s Mercy for a hospital elsewhere.

“That’s when it crystallized,” Jason Tracy said. “I had been documenting his life and what he was going through, but there were all these people who were taking care of him who we were completely missing.”

Tracy set up a makeshift studio in an office that was under construction down the hall from his son’s unit, where each round of treatments often meant a stay lasting nearly a month. His parents, taking shifts during the day, stayed by his side.

In slower moments, often between 9 p.m. and midnight while his son slept, Jason Tracy decided to sit staff members down, snap their photos and ask them to write something personal.

“It’s almost like shooting pictures of family,” Jason Tracy said. “They are like good friends.”

Now there are two albums.

Jack was free of cancer after the first of his four rounds of chemotherapy, which ended in November. They had five wonderful months. But in March, cancer re-emerged.

Unlike other transplants, a bone marrow transplant is not surgery. Bone marrow cells are infused into the body, like a blood transfusion.

“They go and circulate in the body until they find their home” in the marrow, Radhi said. There, if all goes well, they grow into healthy blood cells.

Monday marked day zero of the transplant, which, Radhi said, “went fine.”

“His sister donated the cells, and she was doing wonderful,” he said. “She was up and running the next day. He (Jack) tolerated the volume of blood we got from his sister, and the number of stem cells we got was perfect.”

It will be 10 to 14 days before physicians know to what degree the cells from Julia, who is entering second grade at Clear Creek Elementary School in Shawnee, will help combat the disease, or whether other options such as a second transplant might be needed.

“She told me in the car last week, ‘Dad, I’m kind of freaked out’” regarding donating bone marrow, Jason Tracy said.

But his daughter also was adamant about helping.

“‘Then I can save his life, and he can come home faster,’” he recalled Julia saying.

Tracy, with his camera, is praying for the best, knowing he and his family will be surrounded by friendly faces.

To reach Eric Adler, call 816-234-4431 or send email to eadler@kcstar.com.

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