Shauntelle Tynan with her mother, Leona
SHAN Tynan spent her 17th birthday hooked up to machines in Waterford hospital. When she should have been out partying with her friends, she was being given a care plan that will dominate her whole life for the next year. That plan was about the chemotherapy that she’ll go through in her battle against a rare form of cancer called Histiocrytosis X.
It’s so rare that only one in a million people get it and the only doctors who know anything significant about how to treat it are in Texas.
The cancer manifests itself in many ways and at first Shan’s doctors were baffled by her diverse symptoms.
In June 2014, she began to suffer skin lesions whereby her skin broke open. Next, her period stopped and she began to feel pin pricks in her scalp, “like an itch that you just can’t get to.” Finally, she developed a dreadful thirst that forced her to drink 15 litres of fluid a day. By night, she vomited up all that fluid.
She was prescribed strong steroid creams and antibiotics for the skin lesions, but they only made them worse. She was referred to Waterford University Hospital in July 2014 but didn’t get an appointment.
At their wits’ end, Shan, (her full name is Shauntelle) and her mother, Leona (who is originally from Newbridge) “packed their bags and went to the A&E department in Waterford”.
She was admitted straight away and within three days, was diagnosed with having multi-system Histiocrytosis X, a cancer that attacks the endocrine system.
Doctors now know that Shan has growths on her hypothalamus and pituitary glands so that her hormones aren’t functioning correctly, hence the range of symptoms all connected with the endocrine system.
Having been finally diagnosed, the care plan will be carried out in Waterford, under the guidance of doctors in Our Lady’s Hospital for Sick Children and Dr Kenneth McClain in Texas.
She’s already been through a lot but really, the treatment only starts next Monday 10 August when she’ll undergo five consecutive days of chemotherapy every month for a year.
Mum Leona, is determined that Shan will be treated personally by Dr McClain in Texas because, as she sees it, “there’s been no deaths from Histio in his hospital”.
“They say that there’s no expert in this because not enough people have it but if there is an expert then that’s Dr McClain because he’s treated the most people,” Leona explained. “He has the biggest clinic in the world for this and no one has died from Histio in his hospital. I want Shan to have the best chance.”
Leona has now set up a facebook page called Shan Histio Warrior, detailing her story.
But though the young teenager is indeed a fighter and has already drawn on such strength to get her this far through her disease, in person, she looks far from a warrior.
Tucked up on the sofa beside her mother, Shan is a gentle girl whose skin is delicate and soft and whose eyes are full of questions and anxiety.
Shan has two younger siblings, Stephen aged eight and Sophie aged four. Her mother Leonie is from Newbridge but the family is now settled in Carlow town.
She has read lots of literature about what’s wrong with her and what she will have to go through.
“It’s really hard some days. I used to be able to go out with my friends all day but now my bones feel weak and I don’t have much energy. The vomiting really takes it out of me and I can’t sleep at night,” she says, simply.
“It’s really, really difficult seeing your child so sick,” Leona says.
The family have now started a fundraising campaign to raise money to send her to Texas. They estimate that each trip could cost in the region of €30,000 but until Shan’s assessed and treated, they don’t know now many trips they’ll need to make and so have a target of €100,000. And if there’s any money left over after treatment, Leona has vowed to continue highlighting the condition and making people aware of it.
“I don’t think that this will ever stop, we’ll keep on telling people about it,” Leona said.
The fundraising has already begun with family and friends all rallying their support.
“People have been truly amazing to us. If they say they’ll do something they just go and do it,” Leona said.
A table quiz will take place in The Fun Factory, Naas on Friday night. Tickets cost €40 for four people and are available at the door. A 5km and 10km Histio Warrioe run will take place also at the Curragh Racecourse on Sunday 20 September. September is Go Blue for Histio month and also marks childhood cancer awareness month.
Wristbands bands are also for sale, with #TeamShan printed on them.
Shan will begin the course of chemotherapy next week on Monday 10 August. The family know that it’ll be a tough year on her but are determined to keep their chins up and be brave for her.
“You have to cope, you have to,” Leona concludes. “We do have our wobbly days when all we can do is cry but you have to look to the future, too.”
“You have to stay positive,” Shan concludes with the smallest of smiles.
Check out Shan’s story on facebook Histio X Journey for Shan or donate to the cause through www.idonate.come or through paypal.
Pull quote
“I want Shan to have the best chance…“It’s really, really difficult seeing your child so sick”
