It took about 50 million stem cells, 1,000 cranes, a host of family and friends around the world, and a pair of lucky socks to get John Killip to the first anniversary of his treatment for multiple myeloma.
Killip is the husband of Kathleen Didde Killip and the son-in-law of Emporian Carl Didde. The Killips live in Kansas City, Mo.
He’d had a private dental practice and had been a volunteer as a dentist at the University of Missouri Kansas City Dental School, where he continued to volunteer after he sold his practice. He later became assistant professor there and now is dean of student programs.
The transplant enabled him to continue his work and his life.
“If he hadn’t had the stem-cell transplant, he would have had two to three years to live,” Kathy Didde said. “The transplant’s not a cure, which is why we’re anxious to have a lot of stem-cell research done. I keep hearing, I keep seeing in magazines, on TV, all these little bits and pieces about stem-cell research and how it’s touching leukemia, lymphoma, multiple myeloma. Now they’re talking about diabetes and Parkinson’s.”
The treatment is expected to extend his life expectancy 12 to 14 years, and perhaps longer.
“If he can get 15 years, he would be 80,” she said. “That would be nice. That’s what we’re working on.”
The multiple myeloma crept into Killip’s life insidiously, beginning perhaps in the fall of 2006, when Killip began a series of bouts with recurring pneumonia and kidney or bladder infections that sent him repeatedly to his internist. Kathy Killip wondered what was wrong with her husband, who had been so healthy. The internist was concerned, too. Early in the visits, the doctor began to suspect a possible cause.
“My internist was on the ball, but I didn’t want him to be,” John Killip said. “Each time I would come in for one of those, he would say, ‘You know there’s something going on in your body that you’re not healing.’ And I agreed with him.”
Agreed with him, yes; wanted to be tested for the cause, no.
The internist always ticked off two or three possible sources.
“Multiple myeloma was always in his conversation,” John Killip said.
In August 2007, the internist refused to go further until Killip had undergone a battery of tests, including a bone marrow biopsy and a full scan, to find out what was happening. The results of the bone marrow test went to the pathologist at the dental school, but the slides ended up on Killip’s desk at the office. He returned them to pathology without looking at them.
“And the pathologist said, ‘Well, maybe I ought to talk to you — or maybe I shouldn’t talk to you,’” Killip recounted the conversation.
When the slides arrived, the pathologist had opened the package, looked at the results, and realized what he was seeing.
“Then he went back and looked at the letter and saw it was me,” Killip said. The pathologist then had sent them to Killip’s office.
The hematologist confirmed in October 2007 that Killip had multiple myeloma, a cancer that affects the plasma cells in the blood. The Multiple Myeloma Research Foundation considers it “incurable but treatable,” and it strikes, on average at 64 or 65 years of age. Killip had gotten the disease right on time.
Killip called his wife when he got the news and continued working. When he got home, she remembers hugging him tightly. He told her that if she needed to cry, then was the time to do it. After that, they would tackle the problem together.
“(He said,) ‘I don’t want to be mothered, I don’t want to be smothered,’” she recalled. “’I want you to walk beside me.’ He always walks beside me. That’s sort of the basis of our relationship. We both have our identities but we’re there for each other. He took charge from that minute forth.”
They kept his cancer secret through October until they could tell all four of their children at the same time, when they gathered in Kansas City for Thanksgiving dinner. Then, they would be free to tell others.
“Those four weeks were absolutely horrible,” Kathy Killip. She confided in one close friend, but she found that her body was reacting to the strain.
“I had to take Prilosec,” she said. “I’ve never had to take anything like that.”
Once the word was out, though, the support system began to unfold, through family and a broad network of personal and professional friends around the world.
The children reacted positively, in their own ways. Whitney, the oldest, lives in Germany with her husband, Klaus, and their month-old daughter, Charlotte. Whitney is the strong one for the family, her mother said.
Brielle, who lives in St. Louis, created a blog site to deal with Killip’s illness.
Wyeth, who lives in Pittsburgh, Pa., started a Web site that is almost an homage to his father, Kathy Killip said.
“He was always a runner in high school and several of our kids have done triathlons and half marathons, so Wyeth’s project is “I TRI 4 Change … like pocket money,” she said. “For every mile he runs, he puts in a penny, I think. So that’s the concept that came out.”
Keelia, a junior at William Jewell, is studying to become an orthodontist, something that has been on her mind since sixth grade.
Because the family enjoys the art and the culture of Japan, Killip had asked that she bring him back a hanging of 1,000 origami cranes from her trip there. The cranes, however, could not be purchased because of their deep symbolism, so Keelia and her host family folded about 500 of them while she was gone. She brought the cranes back with her and folded another 500 before Christmas, when she could present the entire hanging to her father, who was stunned by the effort and the love and support behind it.
“The tradition is that if someone needs support or thoughts or prayers, the friends fold them for you and gift them to you, so that’s your good will,” Kathy Killip said. “You’re thinking good wishes, thoughts for this person. In turn, those hours are gifted. It’s a strong sense of support.
“All of them have given him a response that was so supportive.”
The Killips chose to stay in the metro area for treatment, which was done at the University of Kansas Hospital.
The doctor at KU spent about 45 minutes explaining the disease and its treatment in detail.
“He was a totally, totally brilliant person,” Kathy Killip said. “He told us the good, the bad and the ugly, and everything in-between.”
Before starting any treatment, he first had to pass a stringent physical, particularly regarding his heart, to ensure that he was strong enough to undergo treatment.
They learned that preparing for the transplant of his own cells — an autologous transplant — would be a months-long process, from receiving doses of a Thalidomide-related drug and steroids, to harvesting stem cells by the millions for the upcoming procedure.
The drug combination was intended to reduce the number of myeloma platelets, because it’s the platelets that mutate and form the myeloma, he said.
Those cells reduced dramatically, about 50 percent in the first 90 days. The goal was 25 percent, and when Killip reached between 25 to 30 percent, doctors were satisfied.
He went back on a higher dose of the Thalidomide drug for another month, then was given a month off so the bone marrow could clear itself of the medication before the harvest.
“During that time frame your body’s making new stem cells all the time,” he said. The cells contain the cancer, too, but the freezing during the holding process kills almost all of the myeloma cells.
He received three or four days of a drug, Neupogyn, which is intended “to make the stem cells jump out of your bone marrow and into your peripheral blood,” Killip said. “So you sit in this machine for about five or six hours and they spin your blood through a centrifuge.”
The goal is to collect a total of about 50 million stem cells, which are tallied by a laser counter. The first day, Killip gave up about 23,000 stem cells in a five-hour period; succeeding harvests gathered even more.
“I was just underneath 50 million stem cells and they said that’s enough,” he said. “We’ll use half of them this time. We’ll freeze half of them so if you need a second transplant, we’ll have them.”
About a week later, he went to the hospital for pre-transplant chemotherapy.
“I went in Monday and Tuesday; both days I got 20 minutes of chemotherapy, and you just sit around and enjoy yourself,” he said.
Kathy Killip, an artist who also owns a marketing firm, had been photographing her husband’s treatment and e-mailing pictures out to family and friends, along with messages from John about his progress. His messages continued until he became too sick post-treatment to correspond and Kathy Killip took over, generating a log of events throughout his recovery.
During the first chemotherapy, on Monday, March 17, 2008, she photographed the bag of assorted poisons being dripped into his body.
“She Photoshopped it to green chemo,” Killip said, amused at her acknowledgment of St. Patrick’s Day.
Neither was taking the gravity of the situation lightly, but both were determined to not let it change their attitudes.
“You don’t want to be beat down,” he said. “I think also another key to the whole process is going in with the appropriate attitude. If you go in there with ‘this disease is not going to get me down,’ it’s different than going in with ‘this disease is going to get me down.’”
The appropriate attitude had been in place since soon after the diagnosis and John Killip approached the treatment with his usual good humor.
“John always brings fun into his life,” Kathy Killip said.
He started with a pair of “lucky socks,” that had become a staple for major events since he and Kathy had planned a prank for a reunion of the Killips and three close friends from the American Dental Association and their spouses.
“I went to the old-time pottery, import junk stores,” he said. “Got great big bouquets of ugly plastic roses for all of the ladies, a bunch of Halloween wigs that are red and green and yellow, and then we bought the socks for everybody.”
When the colleagues arrived at the reunion destination, on their separate flights, the Killips — and one by one, their friends — were greeted by people in costume.
“And as everyone got off, we were all there, dressed in our socks and our wigs and our pants rolled up, just like Mom and Dad, waiting,” he said.
The friends joined in the joke and began wearing their lucky socks or taking them along for important occasions — like a job interview.
“So on the day they collected the stem cells, I wore those socks. Then on the day of either the chemo or the transplant, I had on those orange Tibetan slippers with the socks,” he said.
The photos went to friends and family across the Internet.
But Killip, despite his upbeat attitude, still struggled with the idea of his body rebelling.
When the transplant was ready to begin, on Thursday after St. Patrick’s Day, he made an unusual request.
“I said, ‘I want to give them back to myself,’ and they were all thinking I was crazy,” he said. “It’s the rest of my life and I would like to have a little bit of control. Everything else is spinning out of control.”
They allowed him to inject the stem cells himself and, for the first three to five days afterwards, Killip said, he felt rather normal.
“Then because of the effects of the chemo, you start going down and down and down,” he said. “A friend of mine had told me they’re going to get you down as close to death as they can get you, and then bring you back.”
During that process, Killip lost several days’ worth of memory. People visited and gifts were dropped off, but he cannot remember any of that happening. Then he began to improve.
“They tell you, and it’s so true, when they start this process on Day 10 you will know that those babies are taking effect and they’re working. … Day 10 is really the miracle day. Your body is now beginning to make enough new blood cells that you’re beginning to function again. Then Day 11 is better and 12 is better and 13 is better. It’s very easy up to Day 100.”
Day 10 started a miracle for Kathy Killip’s peace of mind.
“If the new stem cells don’t graft back on, you’re done with,” she said.
The transplant, despite its success, made him extremely nauseous for eight or 10 days. He considered himself lucky to have vomited only once, because others vomit frequently. He did endure four or five days of intense diarrhea and his appetite was long in returning. He felt bad that he could manage only a “half spoonful of everything (Kathy) put on the plate” even after he got home. The first truly tasty food he ate was Kathy’s cucumbers and onions in vinegar. Then lemonade, tea with lemon, and other sour foods became appealing.
“Then just very, very slowly, things start tasting better,” he said.
He regained the 30 pounds he’d lost during the long process and now continues to feel better almost every day.
He still feels as if he needs a nap around 4 p.m., but only manages that on weekends; he’s usually in bed around 9 p.m.
“I feel wonderful,” he said. “There are days, and the days get more and more frequent, when I think I’m feeling better now than I have in a long time. …
“The energy level’s not back 100 percent. We all say yes, it will be, all of us patients, but realistically in my particular circumstances, it will probably never be back to that level. But every year that goes by, we’re getting older.”
Next week, the Killips will attend a dental association meeting and gala, and a 40-year reunion of his dental school classmates — including those three close friends — in Phoenix. He had to miss the event in 2008.
“And I’m going to take advantage of it this year,” he said. “I’m going to wear the lucky socks with my tux. I’ll pull up my pants and show them my lucky socks.”
peters43 (anonymous) says...
John is one of the people I most admire. When I came to work for the American Dental Education Association a few years ago, he gave me the benefit of his experience and insights, and I have drawn on those lessons to achieve improvements in services to dental students (his particular passion). There's nothing surprising in this story, except that there are so few people about whom it could be written. I look ahead to toasting our 80th birthdays together.
March 23, 2009 at 2:34 p.m. ( permalink | suggest removal )
martin1948 (anonymous) says...
Wonderful article about a great person! Thank you.
March 24, 2009 at 12:22 a.m. ( permalink | suggest removal )