Katy

    Today an article about Katy was published in the Toronto Star. It was difficult doing the interview a few weeks ago, but we like the way the article turned out. It was strange that they kept referring to her as 'Barnes', but I guess that is the journalist way of doing things.

If you have access to a paper copy of the Nov 23rd Toronto Star, it is on page R5.


Tough and cheerful on a medical marathon

The article mentions that Katy wrote for "BrainScan", the Pencer Brain Tumour Center at Princess Margaret Hospital. Check out page 5 of the Spring 2003 newsletter.

Oh, and the web site that the article refers to is carepages.com. We found this site extremely helpful keeping everyone informed what was happening without having to make hundreds of phone calls, or having people worried about contacting us.
Jen

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Update: Toronto Star does not seem to understand the concept of Permalinks and the link no longer works, so here is the content of the article:

Tough and cheerful on a medical marathon
Hiked in Peru with brain tumour Never stopped to ask, `Why me?'
Nov. 23, 2006. 01:00 AM
CATHERINE DUNPHY
OBITUARY WRITER

Because it was her favourite colour, Kate Barnes' family put on orange toques to walk five kilometres last month, on the day of the Toronto Marathon. They were walking to support the Gerry and Nancy Pencer Brain Tumor Centre at Princess Margaret Hospital, as were many others. But, yes, they stood out in that crowd that day — "just like Kate, who always got noticed," said her sister, Jen Nolan.
And they felt wonderful.
Policemen gave them the thumbs up, pedestrians waved. There were cheers whenever anyone crossed the finish line at Queen's Park.
"There were 5,000 people walking and they all knew someone with cancer," said Brian Lindsay, her stepfather.
"It was very joyful," said her mother, Jane Lindsay.
"You felt a lot less alone," said her brother, John Barnes, who vows to jog the course next year.
The walk took them one hour and nine minutes — a short journey compared to the one taken by Barnes in the 10 years between her diagnosis and death on Jan. 25 from a brain tumour.
Their Katy had kept them comforted with her toughness, her honesty and her wisecracks. She would introduce herself to people quite cheerfully as the BT girl, as in brain tumour, lest anyone not know how to acknowledge or refer to her reality. When told she had only a short while to live, she replied: "Sh-- happens." She'd joke about opening a Tim Hortons — her source for hot chocolate — on the other side, especially with the doctor who was hooked on Starbucks.
But it was only after Oct. 15 this year, when they had walked her walk, that her family was ready to tell her story.

Born in Montreal, brought up in Lorne Park, Barnes was off to see the world as soon as she could. After finishing school, she left for nine months and came home three years later. She visited Australia, New Zealand, London, Indonesia, Ethiopia, breaking up her travels only once, in typical dramatic fashion, to appear on her mother's doorstep in a surprise visit on Christmas Day.
And everywhere, she made good friends. Outgoing and chatty, genuine and friendly, it was her gift.
Almost 11 years ago, when she did come home to Canada, she got a job as traffic controller for the television station run by Torstar Media Group and started taking flying lessons at Toronto Island Airport. Six months later, in May 1996, Barnes was taking the ferry back from the airport after one of her first solo flights when she had a seizure and was rushed to hospital. Medical experts are still mystified about what causes brain tumours. Hers came out of the proverbial blue.
"Everything crashed with that," said her mother. "She lost her dream."
But not her spunk.

`But she did say, "Goddammit, I'm a Leo and it's not going to beat me"'
Brian Lindsay, stepfather


Doctors operated right away; after six weeks of radiation, her gorgeous, wild, untamed curls fell out and she had to move home to be looked after by her mother and stepfather. There would be many more challenges to come, but not once did her family see her cry. They never even heard her say, "Why me?"
"But she did say, `Goddammit, I'm a Leo and it's not going to beat me,'" Brian Lindsay said.
She flew to Australia to be at a friend's wedding, dyed her cropped hair bleach-blond, and was back at work by February 1997. She was being monitored, going for an MRI every six months. "She would get very anxious before every MRI," recalled her sister, but for four wonderful years she was in remission.
Then the MRI picked up something — the tumour was growing again. Once again, she was rushed into surgery, then put on a pharmaceutical clinical trial and monitored monthly. When she was able, she went back to work, moved back downtown, and decided to hike the Inca trail in Peru. Her doctor made her promise she would tell her group leader about her tumour and her medication. On the last morning of the four-day hike, she burst into tears.
"It made me realize I can do what I need to do. I can do what I want to do. Yes, I have a brain tumour and yes, I take Dilantin on a daily basis. But I took care to prepare myself to be as strong as possible," she wrote in an article published by the Pencer Brain Tumor Centre. "It was the pride I felt when I walked through the Inca trail and through the Sun Gate that has given me the strength to move on with my life."
She and her sister got in a trip to Ecuador, the Amazon and the Galapagos — where Barnes became very vocal when she discovered the litter left by the party of the Ecuadoran president also visiting the island, Nolan recalled — and Barnes was bridesmaid at Nolan's wedding in the summer of 2004.
Then, that September, Barnes had to undergo more emergency surgery. A month later, after she demanded the truth, her doctor told her she had months, possibly a year, left to live.
"It was a wonderful year for all of us," said her mother.
There were movie nights, afternoons in the garden, a helicopter ride over Niagara Falls, walks with her mother and long talks with Lindsay, whom her mother married two years after Barnes' father died when she was 16. "We were buddies," Lindsay said.
In May 2005, she visited family in England and Ireland — a hard trip because everyone knew they were saying goodbye to her. By October she was ready to go into palliative care — in fact, after she and Brian Lindsay visited it, she chose Ian Anderson House in Oakville.
She was 35 and she had accepted her death. "She made it so easy for us," said her admiring mother. Barnes started a webpage to keep in touch with her friends around the world. She was still irrepressible. "We are almost at the end of October ... time is flying by when having fun?" she wrote Oct. 19. "I am still having trouble speaking, tired or not. Can I blame it on the colder weather? I smirk!"
She planned her party — as she called her funeral wake — right down to the quesadillas she wanted served, and told Maureen Daniels, co-ordinator at the Pencer Brain Tumor Centre, that she wanted to live until Christmas. She wanted her recipe for pancakes and real maple syrup served up Christmas morning, and that is what her family made happen for her at Anderson House.
But she also told Daniels she would be ready t o die after that.
"`My Dad's waiting for me and we've got plenty to talk about,' she told me," Daniels said. "We see upwards of 300 people with newly diagnosed brain tumours a year here, but she was pretty amazing. It is hard to be positive and realistic at the same time, but she was."

    We are putting together a team to walk 5km and raise funds in support of the Brain Tumour Center at Princess Margaret Hospital, in memory of Kate Barnes.
If you are in Toronto and want to join us during the walk, then register online, select "Join an Existing Team", enter "JourneyOfKate", select the team from the search results, and register.
If you are not in Toronto or if would like to support our fundraising, then please sponsor one of the walkers. We have a team web site - you can select one of the walkers on the page and sponsor them online.
The "Head for a Cure" walk is scheduled for Sunday, October 15th. It is organized as part of the Toronto Marathon (but we only need to walk 5km).

Thank you, Jen (Kate's sister)

I know I have not been blogging much recently; things have been really difficult. Some of you who also follow my husband's blog will have seen his memorial posting about my sister Katy who died after a brave battle with her Brian Tumour. I wasn't able to post anything myself at the time. Things are now getting back to normal; not that I will ever forget Katy. I try to focus on remembering her when she was well, but I will always remember how many people she touched when she was in palliative care for the last few weeks of her life. Even though she had trouble communicating near the end, her smiles and facial expressions were precious to us and amazed the staff who have seen so many people go through the last stage of their lives. I really admire all the nurses, doctors, and staff who work with people with terminal illnesses. It must be so difficult to say goodbye to so many people. However, they also have the opportunity to get to know wonderful people like my sister, and to see how their efforts can extend and improve the lives of their patients. Especially Dr. Mason and Maureen at the Pencer Brain Tumour Centre who helped Katy over the many years of her illness. Medical technology really has come a long way, and changed a lot even over the past 10 years. Katy recovered from her third surgery so much faster than her first surgery almost 10 years ago and there are a lot more treatment options available now compared to when this started. Which shows that the funding going to research is really having an impact; hopefully one day a cure will be found. If you consider that this world has four basic dimensions (time + space), then it means that Katy will always exist between 1970 and 2006. And she filled that time with so much, more than others do in a whole lifetime. I miss her, Jen