Everything was going well for Katie Knudson of Portland, Oregon in the spring of 2001. She loved school and her kindergarten teacher and she had a great 6th birthday party. She loved her dance class and was a very cute ballerina. At school, she loved to run and play with her classmates at recess and in P.E. Then school ended and she was out for summer vacation. What could be better than summer vacation when you are six years old?
Then Katie came down with a summer fever. Nothing too serious, but she was lacking her normal energy, and by the next day it was up to 104 degrees. Her parents, Mark and Karen, decided to take her to the doctor just to be safe. The pediatrician, a wonderful woman who had taken care of Katie since she was born, thought it might be a virus that would run its course in a couple of days. Katie’s Mom was still worried and asked the doctor to order some blood work.
On June 22, 2001 the pediatrician called to ask Katie’s parents to take Katie to the hospital immediately. She asked several times during the call, “is Katie okay” and wanted to know “what is she doing right now?” And then, the pediatrician began to cry and through her tears told Katie’s mother, “we think Katie has leukemia.” That day, Katie’s life and the life of her family took a whole new turn.
Katie spent four days in the hospital, having lots of blood drawn, intravenous fluids pumped into her, and her first bone marrow aspiration – a needle inserted into her hip to test the bone marrow. By the time they had Katie’s fever under control and were ready to send her home, they also had a diagnosis – Chronic Myelogenous Leukemia (CML), a type of leukemia usually found in people over 60 that is extremely rare in young children. Katie may have been the youngest person in the United States with CML in 2001.
As soon as Katie was released from the hospital, she began outpatient chemotherapy. The doctors started with a drug intended to help improve her blood quality without all the side effects associated with more aggressive chemotherapy. During 1995-2001 the three to five (3-5) year survival rate for patients diagnosed with CML was less than 40%. The doctors described the treatment plan for CML – chemotherapy, radiation, and Katie would need a bone marrow transplant before Christmas. The doctors explained both the relatively low survival rate of CML patients and the potential for serious adverse lifelong effects as a result of the treatments for even those who survive.
With no choice apparent, the Knudson family began the search for a bone marrow donor. No family member was a match, but the family was incredibly relieved when they found a suitable unrelated donor. Katie and her family met with the doctors and staff at Doernbecher Children’s Hospital, who would be responsible for the bone marrow transplant. The doctors confirmed Mark and Karen’s fears about the serious long-term health problems associated with some bone marrow transplants.
The doctors then discussed another option with the Knudsons – a new drug, “Gleevec” – that had been approved by the United States Food and Drug Administration (“FDA”) only a few weeks earlier. Gleevec was developed by the pharmaceutical company Novartis. When physician and researcher Brian Druker proposed to conduct clinical trials to see if Gleevec might be effective for treating certain forms of leukemia, Novartis was not willing to bear those costs, so Dr. Druker turned to the Leukemia & Lymphoma Society (the “Society”). The Society funded Dr. Druker’s research and the research was successful. CML was precisely the type of cancer that Gleevec treats, but because CML is so rare in young children, fewer than a dozen children had ever been treated with Gleevec.
Katie started taking Gleevec on August 8, 2001. Every evening after dinner she takes two pills. No aggressive chemotherapy with the profound side effects. No hair loss. No hospitalization. No bone marrow transplant. Regular hospital visits, many bone marrow aspirations – the needles inserted into her hip to test the bone marrow, but in six months the Gleevec had worked – Katie’s leukemia was in remission.
Today, four years later, Katie still takes the Gleevec pills. She still has appointments at the pediatric hematology ward for examinations and twice a year they test her bone marrow, but there have been no signs of the leukemia that changed everything so suddenly in 2001. Katie’s leukemia is not “cured” – and it remains a constant concern that a bone marrow transplant or other treatments will be necessary in the future.
Through all the stress and fear the Knudson family endured, Katie has blossomed. Ballet gave way to soccer as Katie’s favorite activity and now she plays softball and golf as well.
Aware of all that the Leukemia & Lymphoma Society’s funding of Dr. Druker’s research has given them, Katie and her family have committed themselves to giving back. Gleevec meant that Katie Knudson never lost her hair, so she donated her beautiful waist-length brown hair to “Locks of Love,” to help someone else who will have to endure the aggressive chemotherapy the Knudsons have avoided. Katie’s story and her parents’ decision to select Gleevec over the potential cure offered by a bone marrow transplant have been discussed in Newsweek and other national publications.
Katie and her family have become leaders in the cancer community. Katie participates in the Leukemia & Lymphoma Society’s annual “Light the Night” fundraising events. Katie has been a spokesperson and poster child for the Society’s “Pennies for Patients” program, which raises over $10 million per year and reaches six million children in 12,000 schools. Katie has been the “honored hero” for several Team in Training events. She has also been a featured “honored hero” for Soccer Kicks for Cancer, the national program for youth soccer players and teams that was launched in 2005 by the US National Soccer Team players along with the Society and the US Youth Soccer Association. Pictures of Katie with US National Team star Landon Donovan appear in the US National Soccer Team Players website and at the Soccer Kicks for Cancer website. Katie’s artwork is part of the 2006 Leukemia & Lymphoma Society “Twelve Months of Hope” calendar.
After Hurricane Katrina hit the Gulf Coast and the Portland Water Bureau sent people and trucks, one of the mechanics going to New Orleans asked for some yellow Lance Armstrong Livestrong bracelets to distribute to people in New Orleans. Katie and her family responded by providing a bag full of Livestrong bracelets and the red Leukemia & Lymphoma Society bracelets with the message “Relentless,” as in “Relentless for a Cure.”
While Katie and her family have become dedicated to the Leukemia & Lymphoma Society and the cancer community, their commitment has not prevented Katie from having fun doing all the things a ten year-old girl should be doing. She loves to play soccer and her coaches love to see her at practice and on the field. She is not the fastest player on her team or the strongest, but she always does her best and gives 100%. For her teammates and their parents, who know what Katie and her family have been through, Katie contributes something extra – inspiration to everyone else and a reminder of how precious and sometimes how fleeting good health can be. No matter how she plays, she has a smile on her face. But, then, she and her family all have good reasons to smile. The US National Soccer Team Players are privileged to be able to welcome Katie Knudson as a Time In program honoree.
