Published on October 05, 2013
Six-year-old Andrew Kennedy of Cambridge, left, loves spending time with his family, including dad George Kennedy, mom Janet Fairclough, sister Leigh and brother Robert. Andrew was diagnosed with a brain tumour a couple months before his fifth birthday. – Kirk Starratt, www.kingscountynews.ca.
Published on October 05, 2013
Six-year-old Andrew Kennedy of Cambridge, left, his sister, six-and-a-half-month-old Leigh, and his brother, 10-year-old Robert, have a strong sibling bond. – Kirk Starratt, www.kingscountynews.ca
Published on October 05, 2013
Six-year-old Andrew Kennedy of Cambridge, centre, with his dad George Kennedy and his mom Janet Fairclough, has exceeded everyone’s expectations as a Grade 1 student at Cambridge Elementary. – Kirk Starratt, www.kingscountynews.ca
By Kirk Starratt
As his mother shared his story, Andrew Kennedy could sense her sadness, so he came over to comfort her.
His parents said it isn’t uncommon for the six-year-old Cambridge boy to do this sort of thing, as he is full of love. As he gave her a big hug, his mom, Janet Fairclough, reassured him that she just had a sniffle.
Andrew was diagnosed with brain stem glioma when he was four years and 10 months old. Janet said he had been having chest infections and no one seemed to know what was wrong with him before the tumour was discovered.
Andrew was diagnosed nearly two years ago, on Oct. 14, 2011. Janet said they came home on Dec. 19 and Andrew spent his nights at the Valley Regional Hospital until March 7, when the family finally got all the necessary equipment in place to have him at home around the clock. Janet said Andrew was given a short sentence, nine months to a year, if nothing worked.
“We’ve been very lucky, he’s made it a year and a half past,” she said. “He isn’t supposed to be here.”
It’s obvious that Andrew greatly enjoys spending time with his parents and siblings. With a negative prognosis, the family, which also includes dad George Kennedy, older brother Robert and baby sister Leigh, is making the most of the time they have together. Janet said they haven’t discussed the prognosis with Andrew, as they don’t want to burden him further. She said they’d discuss it with him when he brings it up.
Living with a brain tumour
October is Brain Tumour Awareness Month, and Janet said they wanted to share their story, as they’ve faced many challenges and have experienced difficulty finding information and statistics.
“There must be other families out there who have been faced with similar situations,” she said.
The tumor did a lot of damage and Andrew’s oxygen saturation level was very low. As a result, Andrew underwent a tracheostomy. He isn’t allowed to take any liquids orally, although he can eat some solid foods. He now takes chemotherapy once a month at home, a big improvement from the five afternoons a month at the hospital he used to endure. It means he now gets to spend his whole day in school, which he really likes.
George said Andrew’s situation is quite unique. One nurse at the IWK Hospital with 30 years experience told them she doesn’t remember another cancer patient needing a “trach.”
The family currently takes care of everything Andrew needs, but George recognizes that “there will be a time we need overnight support.”
Support from community
Janet said the community has shown tremendous support, with several groups and organizations holding fundraisers for them. The money raised was very helpful. However, she doesn’t think some people realize that after that support is gone, families can still be burdened.
Their employers have been very supportive, but Janet has been on a leave of absence from her job and has had no income since last June. Janet said they’ve found that, because of Andrew’s age, there really isn’t any government support or income assistance available. She finds this sad because Andrew depends on them and has to have someone with him at all times. She said nothing has come to fruition through contacting local MLAs.
“We’ve found that’s where the system is failing,” Janet said. “When you’re given such a drastic scenario, it would be better for families to be given some ease of mind that a parent could stay home with some assistance to help make the most of the time remaining.”
Andrew doesn’t want to be separated from his siblings and Janet said the family wants to be together, with one or both parents at home with the kids. She believes this is helpful to Andrew’s health in a holistic sense. If he were sad all the time, she says, the emotional stress would wear on him.
“We’re trying to make sure everything is kept as normal as possible to keep his spirits up,” she said.
Making the most of life
As a Grade 1 student at Cambridge Elementary, Andrew has surpassed everyone’s expectations. Janet said the school and the support they’ve provided is phenomenal. When asked what he likes most about school, Andrew said, “Gym.”
Andrew gets help from three educational assistants, including one who travels with him so he can go to school with his big brother on the bus. Janet said she is very thankful to have such caring EAs who are so invested in Andrew and have worked hard to make his school experience the best it can be.
Andrew loves to play cards and garden. He enjoys tobogganing, playing on the ice and playing in the water, although he can’t participate in those activities anymore.
After it was discovered in February 2012 that Andrew’s tumor had grown, the family had a rushed Wish trip to Niagara Falls. Janet said Andrew had a great time. Other activities within a whirlwind couple of weeks included a school bus ride with his brother, a family pizza party and a ride in a Kentville Fire Department truck with his uncle, Ian, at the wheel.
“We were working on potentially a one-year time limit,” Janet said. “We were trying to get as much family time and activity in as possible.”
George pointed out that it’s more challenging to have an overnight at Andrew’s grandparent’s house than it used to be. One of Andrew’s favourite activities is camping. Although they can’t go on overnight camping trips in the wilderness anymore, Janet said they had a couple day trips to campsites recently.
This will be the second year the family has attended the Brain Child Family Camp weekend at Camp Brigadoon. Janet said Andrew really enjoys it and it gives them a chance to connect with other families who have shared similar experiences.
Brain tumour facts
- Every day, 27 Canadians are diagnosed with a brain tumour.
- It is estimated that 55,000 Canadians are surviving with a brain tumour.
- There are more than 120 different types of brain tumours, making effective treatment very complicated.
- Brain tumours are the leading cause of solid cancer death in children under age 20, now surpassing acute lymphoblastic leukemia. They are the third leading cause of solid cancer death in young adults age 20 to 39.
- Brain tumours in children are different from those in adults and are often treated differently. Although as many as 60 per cent of children with brain tumours will survive, they are often left with long-term side effects.- October is Brain Tumour Awareness Month. For more information, visit the Brain Tumour Foundation of Canada website at www.braintumour.ca