Sick Kids Radiothon in Peterborough - May 9th

These are my favorite girls.

As part of our fight against neuroblastoma over the past 2 1/2 years, we have been encouraging Sydney to take actions that help her feel that she is helping her little sister. She's always been a bit of a diva (in a good way), and interested in helping others.

Here's the depressing backstory. Georgia was diagnosed with neuroblastoma on January 6, 2006 (the news was delivered to us at about 1:41 pm).

Neuroblastoma is a rare and often fatal cancer of children (up to 80% will die from it before the age of 10). Because it's rare, the pharmaceutical companies aren't interested in doing research--there's no profit in rare diseases. There were no government funds researching this disease, either, because there were no theories that promised any sort of success. And the big national cancer societies devote less than 7% of their budgets to ALL children's cancers. This was pretty depressing to find out.

But, in the midst of darkness, there is a flicker of light. Families are taking matters into their own hands. The families of neuroblastoma children, and the families of angels (who have lost their fight) are banding together and raising the money required to start research. The Birrell family from Peterborough, Ontario, started a fund when their son, James, was deathly ill. They have raised over $2 million, initial studies have shown enough promise to attract some federal funding, and their current goal is to set up an endowment fund so that the money will be there to support research in the future. They have given us so much hope.

So, we started raising money for The James Fund at SickKids Hospital in Toronto. My daughter Sydney, who was 8 at the time, put a piggy bank in the office of her school. And she asked me to make something that she could sell.

I made bracelets (and am still making them).

She's" done radio advertisements for Sick Kids, and television interviews.

I'm telling you all this because she's going to be featured on a radiothon this Friday afternoon on two Peterborough, Ontario radio stations between 2 and 3 pm. They both have web streaming, if you're interested she'll be interviewed on The Wolf. ca between 2-2:30 and 980 Kruz am between 2:30 and 3 pm.

I'm so proud of her.

Georgia's prognosis is relatively good. Because she has other issues that were being followed with abdominal ultrasounds, her adrenal tumour was found very early and removed. Right now, she is 2 1/2 years NED (no evidence of disease). This is good, but we always say it with our fingers crossed. And we will continue to participate in our fundraising until we can say that there is a good treatment for this disease that will give some hope for the 50 families in Canada and 600 in the United States who are given this death sentence diagnosis every year.

Thanks for listening.

Thanks Lars

There's a really cool group of photographers who collaborate on socially important topics based in Toronto, called Photo Sensitive. One of their latest projects is a photo exhibit about cancer.

Launching in May, it will travel across Canada.

Local photographer Lars Hagberg volunteered his time, following us around CHEO and other locations as we lived the life of a family dealing with cancer.

His photos are amazing.

Thanks, Lars.

Comfort & Joy

Georgia got a new little tikes camera for Christmas. Here are some photos she took:

My hardwood floors look fabulous in this shot (not sure whose knees):

And this is the star herself, blowing up the ugliest balloon I've ever met:

Happy Holidays!

Beautiful Girl

We were at the Camp Trillium Christmas party last weekend.

Georgia was running & dancing.

Isn't she gorgeous?

This photo, and many others of Georgia and Sydney, was taken by Lars Hagberg. Lars lives near us, and is helping us to participate in The Cancer Project.

Every time I see this picture, it takes my breath away.

Hey--Syd is still selling bracelets like mad, and Global News was here last week interviewing her for a feature story to be aired Christmas week--we'll be shouting out the air date once we know it.

Peace,

Faye

The James Run/Walk

It was a beautiful day on Sunday. Crisp. Sunny.

The family of Elgin Fraser was there. This run was in his memory.

The participants in this charity run varied. There were world-class runners there: a few who are training for the olympic trials, at least 1 who has qualified for the Boston Marathon. I believe the fleet-footed finished the 10 k run in 32 minutes.

There were students from the University, since the run was being held on the lovely Trent campus. There were local recreational runners, warming up and going the distance.

And there were families. Neuroblastoma families.

Although the 3 young men with 'Fill the minute . . ." on the back of their shirts were inspiring for their strength and dedication and speed, I think of something completely different when I'm among the friends of James and I think of filling empty minutes.

We did the 5 km walk as a family. G rode in the stroller, Charlie trotted along on his leash. Sydney walked, skipped & ran the whole way -- and she's the only one who didn't want to nap on the way home. I guess that's her gymnastics training showing.

Afterward, the Birrells kindly invited several of the families and their close friends for lunch. The food was fabulous ! Charlie made a new friend. And Georgia trolled around the house, completely at ease. If she needed something, she simply asked the nearest adult--and she usually got just what she wanted (including at least 3 glasses of cream soda).

It was a day I won't forget.

Cheers.

We Like Mike!

Hello!

Wow, what a year. My computer and I had a major disagreement in January, which resulted in my sending it off to boot camp. It was reprogrammed, but it refused to retrieve my mailing list until I sat down with a bottle of wine and beat it to within an inch of its’ life. However, no wine was injured in the production of this e-mail.

We have had a GREAT 2007! Georgia has had her 18 month, cancer-free check-up (applause). In merely 3 ½ more years, we can use the ‘c’ word (cure) with a bit of confidence, and our fingers crossed.

Georgia has had a few health issues, and parents of children with long-term illnesses will appreciate, they have been more than usually worrisome for us. She has had seizures when she gets a cold, X 3. The first one resulted in a 911 call, an ambulance ride and a long evening in the emergency room. However, Dr. Keene the neurologist (and, if you’re counting, that means Georgia’s 10th specialist, thank God for universal health care), who looks like Santa, has assured us, after the EEG, that they are most likely ‘atypical febrile seizures’. Nothing Georgia does is typical, of course.

She also had a fight with Salmonella, and came out winning. She coined the phrase ‘my bum is puking’ during that battle.

Sydney has also had an amazing year, especially with her fundraising. She was asked to be part of the SickKids fall fundraising campaign—and there is a radio spot now out on the CHUM stations in Toronto. Scott absolutely loved our visit to the recording studio—and it was just like it looks on TV. Sydney’s fans can hear the commercial here: http://www.sickkidsfoundation.com/Believe/radio.asp

We are also THRILLED that the James Fund researchers at SickKids are planning a joint research project at CHEO in Ottawa, where Georgia has had her treatment. It was announced to the public at CHEO and the James Fund will be using the proceeds of their November run—the honorary chairman of the run? None other than the Ottawa Senators’ Mike Fisher!

Ladies, he’s as cute as he looks, his teeth are perfect, and he’s a gentleman. The press conference was held in a waiting room that serves the urology clinic, the sports injury clinic and the anesthetic assessment clinic. Before the cameras began rolling, he greeting every child who wanted to say hello, signed shirts and hats and wheelchairs, and generally made time for each person who wanted to speak to him. After the cameras stopped rolling, this nice young man posed for photos with an almost endless parade of smiling women. His father Jim was there, and it’s obvious where Mike gets his impeccable manners and charm. 3 out of 4 Inverary Whytes are now firm Senators fans, and the 4th has agreed that he will cheer for Mike when he’s not winning against the Leafs.



We spent the last weekend of September in Muskoka at Camp Ooch, a childhood cancer camp, for the 1st James Fund Neuroblastoma family retreat—and I daresay, it was the 1st annual. It was a wonderful weekend. I confess, I’m still digesting all that happened and will have to write more about it later. Just be warned, we have more plans! We are definitely not stopping until there is a cure for this disease!

One highlight I can’t ignore—we met a woman who is a 30+ year survivor of this disease. Thank goodness Jennifer doesn’t mind physical contact, because I ended up petting her like a lucky rabbit foot. She’s just such a comfort, and she’s so sweet.

I’m now on Facebook, so if you’re there, please look me up. I’ll also post updates and more photos there.

Cheers to all,
Faye

Great Charities for Cancer Kids

I want to share with you some of the great people and groups who have helped us in the past year.

Last year, I saw a post up on the wall of the Medical Day Unit at CHEO about Camp Trillium.

My husband was home with the girls last summer, so we knew a vacation would have to be on a tight budget if at all. What did we have to lose by taking a chance on this camp?

Hmmm. Now I think about what we gained.

The camp we went to, on Garrett's Island, is truly a world away for families dealing with childhood cancer. At Garrett's Island, kids are kids.

We all have the same elephant in the room--and we felt an almost-instant bond with the other families.

The week we spent at camp last year was a huge boost for us all--it reminded us there are many others in our situation, and they are fighting and surviving.

As well as summer camping, Camp Trillium has monthly events for the children all year round--with arts and crafts, snacks and lots of hugs from the wonderful volunteers. If you think that young people these days are not loving, giving and capable of great depth, then you need to meet the Camp Trillium volunteers.

If you choose to donate to Camp Trillium, you will be providing swimming, sailing, canoeing, kayaking, climbing, running, jumping, laughing and healing for children with cancer and their families.

Thank you to Camp Trillium and all your wonderful 'special friends' for memories that will last us a lifetime.

Cheers.

(P.S. We'll be going back this summer, and Sydney will be going on a kid's camp week as well--we can't wait.)

Don't Pity Me

I can tell when you're doing it. I see the look on your face, and I can tell.

People sympathize, they feel pain with us. Often, they have been through this type of experience--dealing with cancer face-to-face, hospital waiting rooms and random acts of kindness and unexpected lab results. I truly appreciate that sharing look, the understanding look of those who feel that pain and want to make it better.

But the other folks. The ones who are secretly thinking--I'm so glad I'm not you. It's no secret. We, the people you pity, can see it in your eyes. I know you hang up the phone and tell someone that I'm 'holding up remarkably well', or that you 'don't know how she does it'.

Guess what? I don't want your pity, and I don't deserve it.

Don't get me wrong, it means a lot to me when someone will listen to my story. I can't tell you how much strength I've received from friends, acquaintances and strangers who are moved by my family's predicament and our fight against it. Your pity doesn't help fight. It doesn't help me keep going on the days I want to stop and scream. All it does is drain me--and I can't afford that.

Thanks.

Beautiful Christmas

I can't show you the decorations or smiles or the chocolate-smeared faces. The new camera is in the shop. Haven't heard yet when it will be fixed, but I'm not going to hold my breath.

This year is a lot different than last year. Last year at Christmas time, we were innocent, but scared. We had a surgery date--and we knew that it would be a 2-3 day hospital stay. And then, the lump would be gone and we'd all live happily ever after.

I do remember spending a very strange day trying to do a 24-hour urine collection from an 18 month old child--it wasn't fun for anyone.

This year, we have no time for fear. There may be terrible days ahead--and, like January 6, 2006, they will come upon us with little warning. And we'll rely on our family and friends and our faith when those days come.

For now, we have two delightful, beautiful, strong girls whose eyes shine when they see the red ribbons and scented candles and greenery hanging in the house.

I'm still knitting madly--now down to 1 project with a bit of finishing and 1 hopeless. And little Georgia will climb up beside me on the couch every time she sees a new project in my hands--and she'll ask ''blankie for me?". She thinks the idea of Santa and gifts is great--but he's still not a good enough guy that she'll sit on his lap.

Sydney has become a super-sleuth these past weeks, inspecting every piece of paper, reading every note, counting the number of trips we're taking to the basement. I think she's going to be surprised, but only because she's afraid of me and I've forbidden her to go into my room.

Have a peaceful Christmas. Enjoy the meaning of the day by taking a moment to remember or call or help someone else. Be kind to your family, because they are a gift to you from a higher power, given for reasons you might never understand. Stop worrying about stuff and start spending your energy wisely--on the things that nourish your family and your soul.

Cheers,
Faye

Knitting for Christmas

Hi all,

Thanks so much everyone for your kind words and for the bracelet orders that have been coming in. I smile and my heart warms when I think of G & S bracelets all over the country, being given to family and friends as gifts. Thank you all for helping to make this terrible time in our family meaningful.

If you do send bracelet orders this week or next, please be patient. The next bracelet orders will be mailed out on December 11 (lots of time to receive them before Christmas, if required).

I am madly knitting Christmas gifts (more on my knitting blog).

Here's a sample (with my appreciative cat):

Hugs to you all!

P.S. You can reach me by leaving a comment--they are sent to my yahoo email address. Or, you can email directly bracelet at kingston dot net (replace the words with symbols as per usual).

And a big ???thanks??? to the folks who harvested the bracelet email addy off the CityTV website and send several dozen spam messages each day in Chinese.

Cheers.