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  • PATRICK'S PEOPLE: Payton Kannarr to reach 100th day since bone marrow transplant

  • The American Independence Day is July 4, but Payton Kannarr, 11, will celebrate a personal day of freedom on Friday.

    July 12 will be the 100th day since the St. Mary’s Elementary School fifth grader received a bone marrow transplant from her little brother Brody, then 8, as a treatment for acute lymphoblastic leukemia.

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  • The American Independence Day is July 4, but Payton Kannarr, 11, will celebrate a personal day of freedom on Friday.
    July 12 will be the 100th day since the St. Mary’s Elementary School fifth grader received a bone marrow transplant from her little brother Brody, then 8, as a treatment for acute lymphoblastic leukemia.
    “The 100th day means I get my freedom for doing things,” Payton said. “There’s less chance of infection.”
    She loves swimming, and is looking forward to finally being able to scuba dive now that her Hickman port, installed for infusion therapies, has been removed.
    “I certified for scuba last summer, then I broke both my arms,” Payton said.
    She’ll be free to eat eggs over easy, go rollerskating and have friends over.
    The daughter of Dr. Shane and Amy Kannarr, Payton was diagnosed with leukemia on Nov. 8, 2012.
    “Payton hadn’t been feeling well for several months, her energy levels were declining and her interest in daily activities was decreasing,” Mrs. Kannarr said. “Then she began having daily headaches. I took her to SEK Urgent Care because she was pale. I thought she might have mono.”
    Instead, a full blood panel ordered by the doctor discovered the leukemia.
    The diagnosis was confirmed that evening when Payton was checked at Children’s Mercy Hospital, Kansas City, Mo. However, the prognosis was hopeful.
    “Acute lymphoblastic leukemia is the most treatable form of leukemia,” Mrs. Kannarr said. “The next day Payton had a bone marrow aspiration, spinal tap and internal port placed to begin her 28-day chemotherapy induction cycle. After 28 days of chemotherapy, they said, she should be in remission.”
    Instead, another bone marrow aspiration on Dec. 10 confirmed that Payton’s leukemia was not in remission.
    “It kind of knocked us for a loop,” Mrs. Kannarr said. “Then we had to go to Plan B. The chemotherapy doctors consulted with other doctors around the country.”
    Payton’s father, an optometrist, said he was very impressed by this collaboration.
    “The nationwide group effort has been very impressive,” he said.
    Payton underwent two rounds of very aggressive chemotherapy in December 2012 and January 2013.
    “It didn’t knock the leukemia down much,” Mrs. Kannarr said. “Payton needed a bone transplant, but needed to be in complete remission for it to be successful.”
    That was where Plan C came in. Payton was accepted into a Phase 1 clinical trial at the National Institutes of Health/National Cancer Institute in Bethesda, Md., for a promising new treatment called anti-CD19 chimeric antigen receptor (CAR) T-cell therapy. At that point, only one child per month was being accepted for the trial.
    “We found out on Monday, Jan. 28, that Payton was not in remission, and the exact spot opened up for her in the trials,” her father said.
    Page 2 of 4 - Kannarr doesn’t use the word “miracle,” but noted that the family firmly believes in the power of prayer.
    Payton and her mother left for Maryland on Jan. 30, with airplane tickets arranged and paid for by Alex’s Lemonade Stand Foundation.
    On Feb. 4 doctors harvested Payton’s t-cells through apheresis, a medical technology in which a patient’s blood is passed through an apparatus that separates out one particular constituent and returns the remainder to the circulation. The harvested t-cells were altered by the doctors into killer cells, allowed to multiply, then infused back into Payton on Feb. 15.
    “She ran a temperature of 104 or 105 degrees for the next five days, but after that Payton was symptom-free,” Mrs. Kannarr said. “On March 13 a bone marrow aspiration confirmed that she was in complete remission. We flew home that day.”
    She and her daughter were in Maryland for six weeks. Mrs. Kannarr said she received a personal telephone call from Kathleen Sebelius, former Kansas governor and current Secretary of the Department of Health and Human Services, as well as U.S. Rep. Lynn Jenkins.
    “We received a tour of the White House on the morning that Barack Obama decided to cancel all White House tours,” she said.
    Her husband added that Sen. Jerry Moran also called to express concern and offered to help in any way he could.
    Back home, St. Mary’s Elementary School held a card drive for Payton and she received more than 1,000 get-well cards.
    The St. Mary’s Colgan High School-Frontenac High School basketball game was dedicated to Payton and live-streamed so that she and her mother could see it.
    “I really liked it that I could watch the game in Maryland,” Payton said. “I felt like I was there.”
    Many attending the game, along with some players, wore orange Team Payton T-shirts, sold as a fundraiser to help with expenses. Orange is the color of the leukemia awareness ribbon.
    “Our neighbor, John Minton, was instrumental in making this fundraiser a huge success,” Mrs. Kannarr said.
    She added that the school and a family friend, Mike Austerman, earlier sold lime green bracelets for Payton with the phrase “She won’t fight alone.”
    That has been true. Payton and her family have been the target of prayers from the entire community and beyond.
    “We’ve heard there’s a prayer group in Texas, and prayer groups in Saudi Arabia and Africa praying for Payton,” Kannarr said.
    Family and friends also rallied to help him and his two younger children while Mrs. Kannarr and Payton were in Maryland. Little sister Sydney did some mommy-type chores around the house.
    “I had to take clothes out of the dryer and help with cooking,” she said.
    Page 3 of 4 - “One of the quotes was when Sydney told Brody and me that we had no idea how hard it is to be a woman,” Kannarr said.
    The youngest family members were able to continue their activities and school work with help from family and friends.
    “It’s amazing how many people cared for us,” Sydney said.
    The ordeal wasn’t over when Mrs. Kannarr and Payton came home. While the killer cells had knocked the leukemia into remission, it was not a cure and she still needed a bone marrow transplant.
    “Payton is one of the first, maybe the first, to have the t-cell therapy before her transplant, instead of afterward,” Mrs. Kannarr said. “She’s a pioneer in that sense.”
    All the family members were tested in December as possible bone marrow donors. They learned Christmas Eve that Brody was a perfect match.
    “I was scared, but I was also happy,” Brody said.
    Transplant preparations started on March 26, when Payton began three days of intensive total body radiation, followed by four rugged days of chemotherapy to completely wipe out her existing bone marrow.
    For the five days prior to the donation, Brody received injections to stimulate his bone marrow to pump out more stem cells. On April 2 he was admitted to Children’s Mercy Hospital and a line was placed in his neck through a surgical procedure.
    On the morning of April 3 his stem cells were harvested through apheresis, a six-hour procedure.
    “For six hours I had to eat Tums,” Brody said.
    His father explained that the apheresis process can deplete calcium from the blood.
    “Usually they would do an IV of calcium, but there was a calcium shortage, so Brody had to eat Tums,” Kannarr said.
    Brody left the hospital after the donation. He took an iron supplement for two weeks, but resumed normal activities immediately.
    Payton received her brother’s stem cells through an IV drip later that day.
    “Rather than transplant bone marrow, they transplanted the stem cells and Payton’s traumatized bone marrow was able to tell the stem cells what to become,” Kannarr explained.
    The month following the transplant was very, very difficult.
    “Payton suffered from vomiting and a severe case of mouth, throat and GI tract sores, known as mucositis, for many days following the transplant,” Mrs. Kannarr said. “She did not take a single bite of food the entire month of April. She was on IV nutrition known as TPN.”
    On April 16 the youngster was placed in the Children’s Mercy Hospital PICU (Pediatric Intensive Care Unit).
    “She had to be put on a ventilator for five days because of her throat swelling shut,” Mrs. Kannarr said. “That let her body heal, and when she came off the ventilator she was so much better. Brody’s cells were engrafting and eventually the swelling went down.”
    Page 4 of 4 - Payton was released from the hospital the 27th day after the transplant and transitioned into the Ronald McDonald House Bone Marrow Suite. She was able to come home on May 7. Doctors are hopeful the leukemia is gone for good, but will keep an eye on her to be sure.
    “Payton will be watched closely for the next five years,” Kannarr said. “The first year will be the most intensive.”
    The family’s gratitude is also ongoing, and Kannarr fears trying to list everybody who helped because he might leave somebody out.
    “I can’t remember how many kindnesses have come from people,” he said. “The community support that we’ve received throughout southeast Kansas is unique. It epitomizes all the great things about this area.”
    The Kannarrs have started giving back. On June 8 Payton, Brody and Sydney had a lemonade stand in front of their father’s office, Kannarr Eye Care.
    “We raised more than $1,600 for Alex’s Lemonade Stand,” Sydney said proudly.

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