KIRSTEN FINLEY, MOTHER OF BRAVE CANCER SUFFERER SPEAKS TO SUNDERLAND, OPINION AND STORIES ABOUT A CANCER RESEARCH FOUNDATION HER SON KAYNE SET UP BEFORE HE PASSED AWAY. HE CALLED THIS PROJECT ‘CANNONBALLS FOR KAYNE’; A FOUNDATION FOCUSED ON FINDING A CURE FOR A RARE BRAIN TUMOUR CALLED DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG), WHICH IS COMMITTED TO SUPPORTING FAMILIES THROUGH EDUCATION AND RAISING FUNDS FOR RESEARCH.
Kirsten lost her son to DIPG cancer at the age of 18, a highly aggressive brain stem tumour found at the base of the brain. Kirsten states that DIPG cancer is ‘diffused’, meaning that healthy tissue is mixed with bad tissue.
Kayne, an intuitive, unique teenage boy, thought differently to others. He was a teenager who loved life and found happiness from helping others.
Kirsten explained how DIPG affects three unique parts of the brain and causes a variety of side effects as the tumour progresses. She says:
“The affects of bodily functions depends on the location and shape of cranial nerves in the brain.
Unfortunately, treatment for DIPG hasn’t changed in fifty years. There are 120 types of brain tumours that are difficult to operate on”.Kirsten Finley, Kayne’s mom.
Kirsten also described Kayne’s neurosurgeons decision to not collect a biopsy from her son to determine if Kayne had a gene mutation. Kayne agreed with this decision; but gave consent for skin samples to be taken.
Following his death, Kayne’s family found out that he had a gene mutation called H3K27M. Prior to his death, he gave consent to donate his tumour and tissue to Cincinnati children’s hospital medical center for research.
He didn’t want his final few months suffering with cancer to interfere with enjoying life. Kayne was concerned that being exposed to unnecessary oxygen during a brain biopsy would alter his personality and speed up the disease process.
In 2017, three months after his diagnosis, Kayne along with his family founded his foundation called ‘Cannonballs for Kayne’. He followed the motto of ‘paying it forward’, because he wanted to offer support and guidance for other people and families in the same position as him. Kayne also spoke at schools, corporations, met with state legislators and the governor of Kentucky and Louisiana to create awareness and gain funding for DIPG cancer.
In the US, only a small amount of cancer funding from federal government goes to childhood research. DIPG, an ‘orphaned cancer’, affects less than 400 children, teenagers and adults per year. As a result of this, very little support and funding in America is given, as very few people suffer from DIPG in comparison to other cancers.
Cannonballs for Kayne supports research into other cancers, as well as DIPG cancer. Kayne’s family carry on his legacy now.
Kirsten’s faith has helped her journey since her son’s death. She believes that she will see her son again in an eternal afterlife and says:
“Believing in God and knowing that there is an ‘after place’ for us that is more beautiful helps to keep me going every day. I try not to get caught up in the grief, sadness and anger that comes with the feeling that Kayne is not here anymore.
“God helped shape the character and person Kayne was and Kayne felt longevity because of faith and prayer. He found comfort in people supporting him. ‘Trust God and stay on the ride’ is what I used to say to him. Kayne believed in an afterlife, somewhere that is pain free and gives everyone hope.
“I truly hope he has found that.”Kirsten Finley, Kayne’s mom
Cannonballs for Kayne supports Cincinnati children’s hospital medical center with research and their genetic studies. Kayne’s foundation made an initial grant of 30,000 dollars based on last year’s fundraising efforts and they have been able to help 18 families with financial assistance.
The foundation provides grants of one thousand dollars to each family when they are referred by social workers. They are now working with eight different hospitals and hope to expand both of these programmes in 2019.
Keagan, Kayne’s younger brother has also formed the ‘Cannonballs Across America’ fundraising programme and has connected with various hospitals, churches and schools in a multiyear effort to help raise awareness and funds for DIPG cancer research. Keagan and his friends have a goal to cycle from California to Florida to raise a million dollars for cancer and DIPG research.
Kirsten, Kayne’s mother said:
“Ultimately our aim is to encourage the next generation of supporters. We want board members and members of the extended committee of our foundation to be young. It helps to foster an environment that helps young people learn about the philanthropic element of doing something good for the community, environment, health services industry and financial stability of the country.
“No-one plans for cancer, so as a result of this we hope to be able to provide light and growth for people.”Kirsten Finley, Kayne’s mother.
Life is about finding your way, learning the routes to get you there. Whether it be the long way, by taking shortcuts, hitting bumps or entering closed doors. Kayne had the mindset of ‘someone beyond their years’ and left a legacy of true gratitude and an acceptance of life.
“It’s not about what you’ve done, it’s about what you do and continue to do from here on out.”Kayne Finley.