Alexa was your typical carefree 15-year-old teenager. She enjoyed school, spending time with her friends and being active. In late 2017 Alexa developed shoulder pain, unusual due to her lack of intense sports activities and no memory of what may have caused such acute pain. After seeing her primary doctor who initially misdiagnosed her without a push for additional scans, a trip to the emergency department led to her being diagnosed with stage 4 osteosarcoma.
Alexa’s diagnosis was devastating to her family, friends and everyone who knew her. “As a parent you naturally worry about your children. We think about all sorts of things – car accidents, kidnapping, drugs but never cancer. It’s the last think you think of. We all were completely blindsided” explained her mother, Cynthia.
Attempting to slow the process, Alexa received rounds of debilitating chemotherapy, a shoulder amputation and surgery on both of her lungs to remove tumors. It was during this period that Alexa and Cynthia found cc-TDI and were able to donate lung tissue to cc-TDI’s Cancer Registry for Familial and Sporadic Tumors, commonly known as CuRe-FAST. This in-house bio banking program allows scientists to study and share tumor information with scientists worldwide.
“In the beginning we really did have hope, but after doing some research we quickly realized how limited therapies are for pediatric cancers. I came across cc-TDI and was instantly amazed at the work they were doing. Our family spent a lot of time in the pacific northwest, and I loved the hometown Portland connection. I liked that cc-TDI was a small, independent lab not restricted by university funding or a company’s bottom line. And I was impressed that their research seemed to be moving at a faster, more efficient pace.”
In September of that year, Alexa celebrated her “sweet 16” birthday surrounded by close friends. Alexa’s lung capacity was returning, she was currently off chemo and feeling as well as she had all year. And as a soon-to-be 16-year-old all she wanted was a typical teenage birthday experience. So as a gift, her parents gave her just that – an unsupervised overnight with her friends. “Alexa told us to leave early and come back late. We left her money for food and fun with her friends, and it wasn’t until after her passing that her friends shared pictures of what really happened – the girls taking our car for an unlicensed joyride around town!” Cynthia still laughs about it to this day.
The last few days of Alexa’s life were incredibly difficult. She was in a lot of pain. Intubation and painkillers caused her to fluctuate in and out of consciousness. “I would curl up beside her in her hospital bed and just hold her” recalls her mother. Alexa passed away on Halloween, October 31st 2018. “You’re never the same when you lose a child. I’ve had to fight the anger and ongoing grief. Whenever I have small joyful moments, I feel guilty because she’s not here to experience moments like these anymore or share them with us. I just feel she was so cheated in this life. I’ve had to accept the underlying sadness as a part of who I am now.”
Upon her passing, Alexa’s family chose to set up an honor page, Alexa’s Hope at cc-TDI in her memory. They wanted to help other children and raise awareness of the need for childhood cancer research. Even though Alexa’s life could not be saved, perhaps through research efforts, another family may have more options.
“We sprinkled some of Alexa’s ashes in our rose garden. The garden has become my sanctuary and continues to help me process my grief. Each year on Alexa’s birthday, we gather in the garden with her closest friends and plant a fruit tree to honor her memory. We light candles, share stories and pictures, have a few drinks in her honor and just remember her.”
Bird, she signed; pudgy fingers fluttering – we marvel and clap.
Bird, she spoke; starts with a B, so smart, so young – we wonder and share.
Bird, she became; why must she fly home so soon? We call out and grieve.
Bird, we weep; come back here, you’ve flown too high – we cannot see you.
Bird, she whispers; let my wings enfold your heart – we will meet again.
Thank you to Alexa’s mom, Cynthia for sharing her story.