After 804 days, Tegan once again is waking up running.
Now 14, Tegan is a kindhearted, wild spirited, beautiful young woman. Ever since she was a baby, her parents Jenn and Steve, have always said “Tegan wakes up running!” However, on Saturday August 13, 2011, the lives of this Saskatoon family changed, and Tegan wasn’t running. Reflecting on what was occurring, Jenn says, “Our world shattered. It was about 5 hours from doctor’s office to a cancer diagnosis of Acute lymphoblastic leukemia.”
When she woke up that morning, Jenn noticed Tegan’s lips were translucent, so they took her to the doctor at the local walk-in clinic. The doctor did a finger poke to check her hemoglobin (HgB). However, when the test came back with a low level of 30, he immediately called the emergency department and sent Tegan to Royal University Hospital. Upon arrival, additional bloodwork and tests were taken.
In addition to learning Tegan’s blood work showed critically low HgB and platelets, doctors discovered a small amount of petechiae, her liver and spleen were swollen as well as some lymph nodes in her groin. Her white blood cells count (WBC) was high and showed blasts in her bloodwork. The doctor came back to Jenn and told her, “It’s the one thing we didn’t want it to be.”
Looking back, Tegan had symptoms for about six weeks before receiving her diagnosis. A fiercely independent toddler, Tegan suddenly became irritable and very clingy with lots of separation anxiety. Her appetite slowly decreased, and she began napping at weird times during the day. Friends and family were also commenting on how pale Tegan was looking. Her wishes to be picked up and carried were endless -- Jenn and Steve realized later this was because their two-year-old daughter was in pain and hurting from the blasts leaving the marrow at the large joints.
“The moment your child is diagnosed, it is literally breath-taking. You don’t know anything other than the words “your child has cancer” and you think the worst. You can’t breathe. You can’t move. You don’t know how you’ll do it,” adds Jenn.
Her parents and medical team said Tegan did remarkably well during treatment. From diagnosis to last chemo was 804 days (26 months, 11 days). Being so young, the nurses and doctors quickly became some of Tegan’s favorite people. She was loved and cared for at clinic and we made some lifelong friends from her time in treatment.
Her first few months were mostly spent in the hospital, as she dealt with port line infections/surgeries, high blood pressure and tachycardia, and queried kidney stones. In addition, she took blood thinners for eight months because she developed a blood clot due to some of the chemo and a shift in her port line.
The chemo was hard on Tegan’s body – physically, emotionally, and mentally -- and she lost her hair. Her reflexes took 15 months after treatment to return to normal. The neuropathy from vincristine was so bad she had trouble walking around eight months into her treatment and required AFO’s and special inserts in her shoes. Even now, she still has issues with her ankles due to laxity in her joints, but with her resilience, she continues to be active in sports.
Jenn continues, “Somewhere along the way though you find your footing. You grasp your way through your new normal. You do it because you don’t have a choice. We are incredibly fortunate that she received such a timely diagnosis as we know many families can go a long time before their child is diagnosed because symptoms are rarely ever considered to be cancer in a child.”
Childhood cancer is incredibly hard on families in so many ways. For her parents, the hardest part about treatment was just seeing how awful it made Tegan feel and knowing there was no other option because it was the only option to save her life. It was extremely traumatic for her parents and sister Jessie watching Tegan endure constant pain. There was also the financial stress for the family, as Jenn and her husband were both off work for up to 13 months. At first, they used their sick leave benefits and then received support from short term disability and accessed their savings.
“We couldn’t have made it through Tegan’s diagnosis without our family and friends,” says Jenn. “We were very literally held up by such an amazing community of family, friends, coworkers. We would have fallen very hard without them.”
Childhood Cancer Canada’s support has made a difference for Tegan and her family. From receiving Emergency Fund support to helping fund childhood cancer research, the organization is helping children and their families. “It’s hard to convey the devastation childhood cancer brings to children, families, and communities. Knowing there are others supporting makes a world of difference,” says Jenn.
Out of Tegan’s diagnosis, her mom, along with fellow SK childhood cancer mom, Carolyn Anderson, felt the need to bring awareness of childhood cancer to a local level and fundraise for childhood cancer research. In September 2015, Small But Mighty SK held their first annual Gold Walk, during Childhood Cancer Awareness Month. Bringing the community together, more than 600 SK families shared their stories and walked for 2km in Saskatoon, spreading awareness through the streets.
“The Gold Walk is a fund-raising opportunity that supports childhood cancer research,” adds Jenn. “In 2021 we split our focus to research and supporting local families -- and with the help of CCC we have set up the SK Fund.” Having raised over $150,000 to date, the Gold Walk and Small But Mighty SK are going strong. To learn more and register for this year’s Gold Walk on Saturday, September 9, 2023, click here.
Tegan is now a happy, healthy 14-year-old hero, who may be a little less enthusiastic but once she’s up, Tegan is go-go-go. A hardworking student, she is inquisitive and loyal – honest and caring – and speaks her mind. She keeps busy with her family, friends, school clubs, horseback riding and badminton. Tegan continues to follow up in the long-term survivorship clinic at JPCH in Saskatoon. But, perhaps her most favourite time is spending time with her sister Jessie, her friends, and enjoying pasta, candy, and popcorn with her family.
Each month we will honour a different Hero . If you would like to share your Hero’s story, please reach out to [email protected].