Hannah Meeson is 5 years old.
Her favorite color is purple. She loves puzzles, Disney princesses, pirates and her poodle, Peanut.
Hannah recently traveled from her home in Grand Cayman to Houston, Texas.
Her mother, Gaylene Meeson, asked her to tell this reporter why she had to leave.
“What disease are we fighting in Houston?” she asked.
“Cancer,” Hannah said.
On July 9, 2012, Mrs. Meeson and her husband Nigel took their daughter to see her pediatrician. Hannah had been falling out of bed and was steadily losing her mastery of certain motor skills.
“No child regresses without there being something major wrong,” Mrs. Meeson said. “If they know how to climb up the steps one day and the next day they can’t, that’s serious.”
It was more serious than they could have guessed. A few hours later, the family was being airlifted to Miami Children’s Hospital, and three days later Hannah was undergoing surgery for an aggressive brain tumor called large-cell, or anaplastic, medulloblastoma.
Although medulloblastoma accounts for less than 2 percent of total brain tumors in the United States, it is the most common brain tumor in children age 4 and younger. Almost 70 percent of pediatric medulloblastoma cases are diagnosed in children younger than 10, according to the American Brain Tumor Association.
Hannah’s tumor was labeled “high risk” and she was given a 65 percent survival rate.
After the doctors operated on the tumor, Hannah underwent six weeks of radiation and five rounds of triple-drug chemotherapy.
In April, they discovered the treatment was not working. There were cancer cells in Hannah’s spinal fluid and an MRI scan showed a regression. The cancer was spreading like “spider webs” across Hannah’s cerebellum.
Hannah’s chances for survival plummeted to 5 percent with the relapse.
“They told us surgery, radiation, chemotherapy, was the silver bullet,” Mrs. Meeson said.
“The surgery would take it out, the radiation would completely zap it and kill anything that was there, and chemotherapy would just be the mop-up in case there was a floating cell,” she explained. “And that works for most kids, quite a few kids, but it didn’t work for Hannah.”
Hannah is now on a new chemotherapy regimen using three different drugs.
“We’re running out of options,” Mrs. Meeson said. “If this chemotherapy doesn’t work, our options are getting very, very narrow.”
The truth about the cure
It’s not just the cancer that’s threatening Hannah’s life. The very drugs used to fight the disease are causing her immense physical damage.
Many of the drugs used for child cancer patients are not approved for use in children.
“They’re not approved for or tested on children, but there’s nothing else,” Mrs. Meeson said.
Hannah has lost her hair, her hearing and the use of most of her left side. This little girl who used to love to swim can now barely keep herself afloat.
“She’s walking now. We’ve just been through months where she wouldn’t put one foot in front of the other. She couldn’t,” Mrs. Meeson said.
According to the St. Baldrick’s Foundation, a childhood cancer research charity, more than 95 percent of childhood cancer survivors will have a chronic health problem, and 80 percent will suffer severe or life-threatening conditions by the time they’re 45, directly as a result of the cancer treatment they underwent as children.
“She’s got a lifetime of disabilities and it might all be in vain because we might not make it anyway,” Mrs. Meeson said.
The ribbon no one wears
One of the hardest things for the Meesons to come to terms with was the fact that there was no standard treatment for children with medulloblastoma whose cancer had relapsed.
“What we didn’t realize as parents of a child with cancer is there’s no cut-and-dry ‘if you have this, then you do this,’” Mrs. Meeson said.
This is partly because so little money goes toward childhood cancer research.
“I had no idea how little money was spent on kids,” Mrs. Meeson said.
According to the St. Baldrick’s Foundation, less than 4 percent of the National Cancer Institute’s US$5.196 billion budget in 2011 was spent on childhood cancer.
“Nobody knows about the gold ribbon,” Mrs. Meeson said. “Everybody knows about the pink ribbon. Everyone.”
September is also Childhood Cancer Awareness Month in the U.S.
In an effort to raise awareness about the prevalence of childhood cancer, Mr. and Mrs. Meeson registered as “shavees” with the St. Baldrick’s Foundation. The couple will be shaving their heads to raise awareness about childhood cancer and money for the charity.
“I can’t take Hannah’s cancer away, but I can make people aware of pediatric cancer,” Mrs. Meeson said. “Because the more people are aware of it, the more chance we have of something being done about it.”
A family friend in the U.K. and Hannah’s uncle in Australia will also be shaving their heads.
The shaving event will be held at the Wicket in Cricket Square at 5 p.m. on Sept. 20.
Details of the event may be subject to change, however, since they have been determined by Hannah’s chemotherapy schedule. Anyone interested in becoming part of the event can email Ms Meeson at [email protected]
Those interested in donating to the cause may visit www.stbaldricks.org/participants/heroesforhannah, and those who want to learn more about the cause may visit www.facebook.com/heroesforhannah.
Camana Bay is illuminating certain features, including the cinema sign and canopy, with gold lighting from Sept. 1 to 19 in support of Childhood Cancer Awareness Month. The color scheme will then change to purple from Sept. 20 to the end of the month in support of World Dementia Awareness Month.
Joanne Lawson, chairwoman for the Philanthropic Giving Committee at Dart, said that Camana Bay regularly receives requests to help raise awareness for local and international causes through their lighting system.
“It’s pretty easy for us to do because of our kinetic lighting system and we’re very pleased to be able to do it,” she said.