| Apr 26, 2007

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Feature Article - April 26, 2007

Caleb Daigle's story

by Jeff Green

Caleb Daigle is a very active 7-year-old boy who attends grade 2 at St. Edward’s Catholic School in Westport.

He also has neurofibromatosis type 2, a rare condition that, in Caleb’s case, has resulted in nine tumours developing in his body. Among the effects of Caleb’s neurofibromatosis are Attention Deficit Hyperactivity Disorder, blindness in one eye, and an uncertain future.

Caleb has had his condition from birth, but he was not diagnosed until 3 years ago.


That was when Caleb’s mother Jos and his older sisters Amber and Amanda’s lives changed radically. For a couple of years, doctors at the Kingston Regional Cancer Centre monitored Caleb through regular MRI and CATSCANS. Eventually it was determined that the tumours were growing, and Caleb began to undergo weekly chemotherapy treatments. This past Tuesday he received his 57th and final treatment.

The treatments are designed to limit the growth of the tumours and Caleb will again be monitored regularly now that the treatments have been completed.

Jos Daigle was clear-eyed and straightforward last week as she recounted the story of her son’s situation to Bill Bowick (from the Central Frontenac Relay for Life Committee) and myself from her home on Canoe Lake Road. Thirteen-year-old Amanda and 11-year-old Amber listened in, adding details at times, and Caleb buzzed in and out of the room.

There is no hiding the impact that Caleb’s illness has had on the family. It is something they live with day to day.

“For the first two years I was in denial,” Jos said in reference to the time between Caleb’s diagnosis and the beginning of his treatment 57 weeks ago, “but the treatment hit Caleb hard at first, and we spent too many nights in hospital, and I have had to face reality.”

As hard as it sometimes is, Jos says “I have no choice but to take it day by day, and hope they find a cure. There is really no choice.”

Daughter Amanda said “I look at life a little differently than I did before, that’s for sure.”

Caleb seems unaffected by his illness, preferring to talk about the friends he has made on his weekly trips to the hospital, how much work he does as a grade 2 student, “I actually do a lot of work, but it is really good”, and about how much he loves to sing.

“He is really not feeling any better since his treatments,” Josee offered, “but he is such a strong little boy, nothing gets him down. He is starting to understand what might happen to him, but he remains so very strong.”

Jos was forced to quit her job at the Royal Military College in Kingston when Caleb’s treatment began. Aside from the weekly treatments, Caleb has regular appointments with several specialists, including ear and eye doctors, and Jos couldn’t continue working. She is working, through correspondence, on a program of study for an architectural technologist diploma, but much of her time in the past year has been spent ferrying Caleb to Kingston for appointments or caring for him in some way.

This summer, the Daigle family is planning to move closer to Kingston to be nearer to hospitals and doctors. “We are looking at moving to Wolfe Island,” Jos said, “I’m really not a city girl.”

The Daigles are a self-sufficient family, but Jos says she has received support, in terms of help with gas money for trips to treatments, from the Canadian Cancer Society, and the entire family has been supported by Camp Trillium, which is supported by the Cancer Society.

In the summer, Caleb attends day camp, Amanda and Amber attend an 11-day overnight camp, and the whole family spends a week at the Camp Trillium location in Prince Edward County.

The support they have received from the Cancer Society has led the entire family to be involved with the Relay For Life event in Kingston each year. This year Jos is the captain for the Camp Trillium team, and Amanda, Amber, and Caleb, are all camping out for the night at RMC, where the Kingston event is being held.

“If there is anything we can do, anything that our story can do, to encourage people to support the Cancer Society, then our efforts will have been worthwhile,” Jos Daigle said, “I don’t know where we’d be without the Cancer Society.”

The Central Frontenac Relay for Life is set to take place at the Parham Ball field on the June 1st weekend. For further information on how to form a team or sponsor a participant, contact Claire Mcfarlane at 279-1133.

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