Sarah Booth looks over her words of praise for the local hospital. Sarah has made plenty of visits to hospital since being diagnosed one and a half years ago with a rare form of cancer.
©THE GUARDIAN/Jim Day
Sarah Booth needs only two words to answer each question.
The two-word answers get right to the point. No need to embellish.
How does six-year-old Sarah feel about heading to the hospital for chemotherapy?
“I’m scared,’’ she says.
What is bad about the needle?
Sean and Pam Booth are half of the four-person team required to restrain their little girl so a tube can be inserted into Sarah’s chest to begin intravenous chemotherapy. They are forced, in the best interest of their daughter, to force her into a period of pain and more than a fleeting moment of horror.
In return, Sean and Pam must absorb their daughter’s fear-fueled wrath.
“I hate you mommy. I hate you daddy,’’ she will say in the throes of panic.
Naturally the hardest part of this emotional volcano for the parents, says Pam, is seeing the terror in the eyes of their girl.
“She gets scared and goes into her zone,’’ adds Sean. “And she gets really quiet until it is over.’’
But it is never really over. There are only reprieves. Merciful breaks.
Sarah has beaten a steady path to the hospital since, three days before Christmas in 2012, she was diagnosed with a rare form of childhood cancer called acute B cell lymphoblastic lymphoma. So rare is her form of cancer, Sarah’s is the first such case seen by the IWK Health Centre in Halifax in 10 years.
The bubbly but shy girl who loves camping and crafts has been following a rigorous treatment program that has included more than 100 hospital visits. Roughly half those trips have been for IV chemo.
A return home to a peaceful, scenic setting on former farmland in Greenwich does not, however, bring an end to all the nastiness for Sarah.
Medicine must still be doled out. Lots. And mostly pretty unpleasant stuff.
A simple spoonful of sugar is not enough to help the medicine go down.
To coax Sarah into taking the essential drugs, Sean and Pam regularly resort to bribes (promises of treats, movies, going out to dinner), threats (no TV, no visit to friends) and even manipulation (“Can you be a big girl?’’).
“It’s horrible, really,’’ says Pam.
Sarah knows all her pills by name.
She can pronounce the likes of Dexamethasone, Septra, Chlorhexidine, Mercaptopurine and Methotrexate with the ease and familiarity that a child would rhyme off his or her favourite Disney characters.
Dexamethasone, taken by Sarah twice daily for five days following chemotherapy, tastes “really bad’’ even when crushed up and mixed with honey.
Sarah actually used to like the taste of Septra when it came in cherry-flavoured liquid form. However, the drug in that form is out of supply so Sarah is taking Septra pills twice a day on Saturdays and Sundays.
She tastes the “yucky pill’’ much more than she does the Gatorade or honey used to sweeten the medicine.
Sarah only needs to take Methotrexate once a week, but she needs to take 11 of the tablets that mom and dad crush and put in liquid.
She had been taking amoxicillin to fight off an infection, but is off those pills for now.
She continues with a rinse twice a day to prevent infection in her mouth. The rinse, not surprisingly, tastes bad.
Then there is the need for precaution when mom or dad pulls on plastic gloves to administer Mercaptopurine, a powerful chemotherapy drug.
In total, Sarah has received about 15 types of chemotherapy medication, most received in hospital because they need to be administered intravenously.
At home, taking daily medicine remains a major challenge. There is no simple popping of the pills.
Sarah has a real fear of taking her meds — a fear once so strong that for several months she had a feeding tube inserted into her stomach via her nasal passage so that her meds could be given to her.
Today, taking the drugs still often involves tears and can take hours a day.
Eating restrictions near pill taking time only complicates the process. At times, Sarah must go hungry, forgoing snack time.
The host of drugs given to help save Sarah’s life regulates the lives of Sarah’s parents.
“It’s stressful,’’ concedes Pam. “It is our life now.’’
Sean notes the decision to make the family’s story public was a difficult one.
The nod was given in the hope of raising awareness of the challenging road that cancer brings to children and their family.
“This was in the hope that people will have a better understanding, and help others if such a thing crosses their path,’’ he says.
— Between 2005 and 2009, 15 children on P.E.I. aged 14 and younger were diagnosed with cancer.
— Since 1985, there has been a dramatic decline in childhood cancer death rates, dropping from approximately 40 to 20 per million children by 2009.
— The overall rate of new cases of childhood cancer has remained relatively stable since 1985.
— The three most common types of childhood cancers are leukemia, cancers of the central nervous system and lymphomas.
Source: Canadian Cancer Society