On Mother’s Day, we celebrate all moms, each special in her own way. Mothers of kids who have fought childhood cancer have traveled a journey no one would have chosen. May is also Brain Tumor Awareness Month. We asked Gaylene Meeson to share her story of being mom to a very special brain tumor survivor, Hannah.Gaylene Meeson and her daughter Hannah, survivor of an aggressive brain tumor called anaplastic meduloblastoma.
Photo by [Kenneth Lim, kennethlimphotography.com].
What was your life before Hannah’s diagnosis?
Hannah was born in the Cayman Islands and has always loved the sea and nature. Her favorite pastimes were swimming, horseback riding, reading and playing games. We were always planning holidays between playing golf and sailing and had numerous holidays abroad chartering sailing boats and skiing in the winter.
Hannah loved adventures and had her first sailing holiday in the Grenadines aged just 4 months, having a nightly bath in a bucket on deck, island hopping from Grenada to St Vincent. She also loved golf and would ride in the buggy until we got to the green, when she would chip and putt it down the hole.
How did things change?
Hannah’s cancer was detected in July 2012 in the Cayman Islands. There was no treatment available there, so we were flown by air ambulance to Miami, Florida where she had an emergency resection to remove a 4.5cm mass in her cerebellum. This was followed by 6 weeks of proton radiation at MD Anderson in Houston, Texas, then radiation to the full brain and spine and a 6-month course of chemotherapy in Houston.
We were very near the end of the course when Hannah relapsed and with a less than 5% chance of survival, we embarked on a different chemotherapy regime which hadn’t actually worked for anyone, but there wasn’t anything else. At best, we hoped to delay the inevitable and there were times that we thought we had sentenced Hannah to a non-life because she was so gravely ill.
My husband was in the Cayman Islands working and he visited as often as he could, but for a lot of the time, Hannah had no immunity whatsoever, being wiped out by chemo and she was gravely ill so we couldn’t go anywhere. Miraculously 660 days after we started the journey, she was declared to have “no evidence of disease” and has remained that way to date.
What’s life like now that Hannah is no longer in active cancer treatment?
Our lifestyle has changed dramatically. We’ve become a lot more spontaneous and living in the moment. We’ve travelled all over Asia and embarked on as many adventures with Hannah as we possibly can, knowing that at any time the cancer could come back. It’s the only way to beat it. To not let it have the last word by dictating how we live.Hannah at the beach, ready for adventure
Hannah doesn’t remember life before cancer. She was only 4 years old. She has huge cognitive impairments, is partially deaf, partially blind with absolutely no balance, but you couldn’t meet a more determined, positive, passionate, resilient, kind human being.
At 13 years old, she has endured more than most adults would ever experience. She is only 133cm (4’ 4”) with no further growth and almost no hair on her head, but those who judge her by what she looks like miss out on getting to know a remarkable human being who is a lesson for us all in how to approach life and relate to the world.
What would you like other people to know about parenting a childhood cancer survivor?
It is really tough knowing that the late effects she endures were inflicted on her to save her life — that we signed the consent form to radiate a brain that wasn’t even 5 years old. She has obvious disabilities that cause people to stare. It’s hard for her to make friends because her processing speed is off the chart slow and the world hasn’t slowed down to embrace everybody and take everybody with it.
But on a positive side, it has opened my eyes to a world of inequalities that I am determined to right and I’m also passionate about raising money for research so that kids in the future can have access to less debilitating treatments.
What are your hopes and wishes for Hannah’s future?
That she can live a full life and continue with her mission to make the world a better place. That people will see beyond her disabilities and see her for the remarkable person she is.Hannah in 2016
What do you enjoy most about being a mom?
Navigating the world with a special needs child people see differently to how she sees herself. I wish that people were more accepting of differences and that there was less discrimination everywhere. Why is it still so wrong to be different?
You are a rock star volunteer, raising funds for research through an event on Cayman Island and a St. Baldrick’s Hero Fund called Hannah’s Heroes. Tell us why you give so much of yourself to this cause.
It’s the most rewarding thing I’ve ever done, and I’ve got far more out of it than I ever thought possible – making a difference to future generations so that a cancer diagnosis will no longer be life threatening and cause so many late effects.
What started as a ripple has become a huge wave. The ability to inspire others to find their passion and make a difference, to give back and care about their community gives a meaning and purpose to your life that I never realized was missing. The value is priceless.
Is there anything else you’d like to share?
I think the work that St Baldrick’s does to give hope to kids fighting cancer by funding research is just priceless! They have the experts; they just need people like us to raise money for them.
See more of the impact of this special girl and her special mom: Hannah’s Heroes has raised more than $2.5 million for life-saving research since 2013.
Donate now and help support research to help kids like Hannah survive – and thrive
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