DB residents Hannah Rose Meeson and Sandra Roe are survivors of childhood cancer. Hannah is eight years old and Sandra, 47. They share their stories with Trisha Hughes.
There is no pain greater than to be helpless in the face of a child’s suffering. With a diagnosis of cancer, your world changes in the blink of an eye. Your goals, your dreams and your priorities are forced to take a different turn. Instead, you’re dealing with the realisation that your child will be going through radiation, chemotherapy and the terrible side effects of both.
You’re allowed to scream and you’re allowed to cry at the injustice of seeing your child suffering but for his sake, you smile and hold back the tears. Deep down there’s the knowledge that you will never give up hope. That you would never do. Hope becomes your anchor – it is stronger than fear. And even a single thread of hope is a very powerful thing.
There are moments in everyone’s life when they know nothing will ever be the same again and time is divided into two parts: before and after. For one DB resident, eight-year-old Hannah Rose Meeson, that moment came on Monday July 9, 2012 when she was just four years old. “Everyone thought I had autism,” Hannah says. “But it turns out I had an aggressive cancer of the brain, probably existing from my birth. When I was four and three-quarters, we visited the paediatrician, Dr Sarah Newton in Cayman, where we used to live, because Mum was concerned about me falling over and bumping into things.”
Hannah was admitted to hospital that day and had a CT scan that evening which revealed a tumour mass on her brain. The next morning, Tuesday, she was airlifted to Miami Children’s Hospital. On Thursday, after an MRI, she had an eight-hour surgery to completely remove the tumour. “For a while, I could not walk or talk but with therapy, I gradually recovered,” Hannah explains. “Then on July 29, we flew to Houston, Texas, where I had another MRI, and it showed the cancer had spread to the membranes surrounding my brain and spinal cord.”
Through 31 sessions of radiation and six rounds of chemotherapy, through nausea, vomiting, hearing loss and blood transfusions, Hannah’s mother Gaylene stood staunchly by her daughter’s side, refusing to give up hope. And on March 31, 2014, her hope became a reality. An MRI showed that the cancer had gone, although the disabilities would not. Hannah will always suffer from a total loss of balance and loss of coordination in her legs, as well as speech and hearing loss. Despite this, she attends Hong Kong International Learning Academy here in DB part-time, and home-schools the rest of the time. She says, “I am happy and I am doing OK.”
Another courageous survivor who has refused to let this disease make her a victim is Sandra Roe, an eightyear DB resident. Sandra has fought the battle twice, once at 14 and again seven years ago. “At 14, you don’t have an understanding of what cancer is and about dying.” Sandra says. “After my dentist palpated my neck during a routine check-up, he found a lump under my chin. The lump was later diagnosed as Hodgkin’s Disease. During treatment, I lost the hair at the back of my head and I was very embarrassed. I had X marks on parts of my body so that when the machine was lined up, my organs were protected during radiation. I used to make up a story that I was a voodoo doll!”
Being a survivor of childhood cancer doesn’t mean you are home free of the disease. At 39, in 2008, Sandra had been sick with numerous illnesses for some time and the last was double vision. When she could not remember a conversation that had happened a minute before and started asking the same questions several times, her husband took her to an oncologist. After a bone marrow test, blood work and a brain biopsy, the result came in. Sandra had brain cancer. Once again, she buckled up and began the battle with eight rounds of chemotherapy over a six-month period.
But that was seven years ago. As of December 23 of last year, Sandra is now cured although, like Hannah, she has on-going illnesses. With a weakened immune system, Sandra has since been diagnosed with lupus.
Finding ways to cope
Every cancer survivor begins each day with two beliefs: the future can be better than the present, and I have the power to make it so. These survivors know all about chemo and sickness, they know stress, they know tears and they know pain. But they force themselves to put one foot in front of the other each day and they refuse to let it beat them. They go about the business of survival. As John Wayne said, “Courage is being scared to death but saddling up anyway.”
During her treatment (as an adult) Sandra would change words to make herself feel better. “Someone just made up the word dying,” she says, “so I changed the word to transformation to make myself feel calmer. The red warning sign on the chemo bag scared me as well, so I refused to look at it. After a while, I decided that red meant love and they were pumping me full of love, so I had more love to give. Creating coping skills is such a powerful way to make the process easier.”
Everyone has different ways of coping. Gaylene explains: “We didn’t look ahead, we just focused on the ‘now,’ one minute and then one hour and then one day at a time. During the day, you stay positive because you have to. Nobody is promised a tomorrow. The grief and despair hits at night, alone in the dark and then you wake up and start all over again. In the hospital, you always meet kids having a tougher time, despite your dire situation, and you find yourself helping others. Everybody is in it together and you draw strength from families around you.”
The need for funding
The survival rate has improved significantly since the 1950s, thanks to better therapy options and tireless research into paediatric cancer. But there is still a long way to go. The Cancer Fact Library provided by The Truth 365, a social media campaign that gives a voice to children with all types of cancer, is a good source for up-to-date statistics. It states that 1 in 285 US children are still being diagnosed with cancer and 1 in 5 of those children are left with little hope of survival. Of those children, 35% will die within 30 years.
The goal is to create a world without cancer and to achieve this researchers are looking for support from involved individuals like you and I. Leading US-based, childhood cancer researcher Dr Gregory Aune posted this telling statement for the St Baldrick’s Foundation in July: “We need further research to find a cure
and for that research, money is needed. The National Cancer Institute in the US has only a budget of 4% allocated to children, and pharmaceutical companies fund virtually nothing to childhood cancer. Help is desperately needed. Our children depend on it. They are, after all, the future of the world.”
September is Childhood Cancer Awareness Month – what better time could there be to dig deep and do what you can to help?
Alongside Gaylene Meeson, Justine Barlow, the principal at Hong Kong international Learning Academy, is leading Discovery Bay in going gold this September. To get involved in the fundraising initiatives they have planned for Childhood Cancer Awareness Month, email email@example.com.
Make a donation
To make a donation to Hannah Rose Meeson’s hero fund for childhood cancer research, visit www.stbaldricks.org/hero-funds/hannahsheroes.
Fight it with laughter
After her treatment, Sandra Roe wrote a series of 15 books for children to help them understand some of the side effects of chemotherapy. By sharing some of the humorous things that occurred during her treatment, Sandra hopes to help children and their parents cope – and laugh. The Farting Princess, the first book in a 15-part series, is due for release towards the end of this year through Scholastic. 50% of the net profits will go to cancer prevention, research and cure. You can contact Sandra at firstname.lastname@example.org.
Image: Baljit Gidwani www.evoquepotraits.com