By: Trish Adkins
Quincy was just 4 months old when he was diagnosed with juvenile myelomonocytic leukemia (JMML), a rare type of leukemia that comes with a poor prognosis.
First attempts at getting Quincy to reach remission and be well enough for a bone marrow transplant failed. He kept getting sicker and sicker. Because of an Alex’s Lemonade Stand Foundation (ALSF) Center of Excellence Grant, Quincy’s doctors at the University of California San Francisco had access to an advanced genetic test called the UCSF-500. The test compared the genetics of Quincy’s cancer with the genetics of Quincy’s healthy cells.
That test revealed that Quincy had a rare mutation, and that mutation had a matching drug to treat it: a therapy previously approved for use in adult liver and kidney cancers.
Trying this treatment brought about a lot of unknowns, but Quincy had no other options.
The drug worked.
Quincy is now 4 years old. Every milestone in his young life — from first steps to first words to first days of school — has been because of a treatment that saved his life. Kids like Quincy celebrate milestones in spite of cancer every day.
1. Enjoying an Extraordinary Childhood: Jonathon and Lakelynn
Lakelynn was 3 years old when doctors discovered a rare sarcoma tumor intermeshed in the nerves of her right arm. A genetic test revealed that Lakelynn had a rare mutation and there was a clinical trial funded by ALSF that offered hope.
Lakelynn enrolled in the trial. Her tumor shrunk and stopped growing. Today, Lakelynn is 7 years old. She continues on cancer treatment. And she also continues to live an extraordinary, relatively normal childhood — filled with Barbie birthday parties and playtime with cousins.
Jonathon was 2 years old when he was diagnosed with acute lymphoblastic leukemia (ALL). Jonathon’s treatment stopped some of those normal toddler milestones — like potty training and playing with other kids. But Jonathon, who is now 4 years old and in remission, persevered. His dream: to be an oncologist when he grows up to help other kids just like him.
2. Reaching Childhood Goals: Lily and Tony
Lily was 14 months old when a brain tumor, called ependymoma, threatened her life and her childhood. Doctors said she probably would never walk. But Lily did walk, and she hasn’t stopped since. Today, Lily is 14 years old and even though cancer treatment’s long-term side effects still pose challenges for her, she fulfilled her goal of joining her high school rowing team. Now, Lily has her eye on competing (and winning) in Spring Regattas with her team.
Tony was just 2 ½ years when he was diagnosed with cancer for the first time. He beat neuroblastoma; but treatment left him with a myriad of long-term side effects, including kidney failure which led to a kidney transplant. That transplant set off a chain reaction of serious medical complications — landing him in organ failure and a coma.
Today, Tony is 16 years old. He continues to battle the side effects of cancer and treatment, but he also continues to keep his eye on his goals. Tony, just months after returning home from his long stay in the hospital, earned his Eagle Scout award. Now, Tony is looking towards graduating from high school.
3. Growing Up: Taylor and Kaela
A day before her 5th birthday, Kaela was diagnosed with osteosarcoma. Her treatment included chemotherapy and the amputation of her left leg — a surgery that left Kaela feeling doomed to a life of struggle. But Kaela rallied and thrived. She is a triathlete and now, a college freshman. Kaela says she draws strength from her milestones and continues to plan a future of more accomplishments.
Taylor relapsed with osteosarcoma when she was 13 years old. This time, the cancer was in her lung and she needed to try a different treatment to ensure she did not relapse for a third time. Taylor enrolled in an experimental immunotherapy clinical trial funded by ALSF. The trial worked.
Now, Taylor is all grown-up. She’s graduated from college and fulfilled her dream of becoming a nurse and working with children. she is also recently married — reaching yet another milestone.
Milestones in a child’s life are their biggest moments growing up. But when a child has cancer, they might miss out on some of these experiences. On Giving Tuesday, your donations will fund childhood cancer research that can lead to safer, more effective treatments. That means more opportunities for every kid to experience these milestones.
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