POGO

The Pediatric Oncology Group of Ontario.

Sounds so little, but there is really a ton of substance behind the little logo.

Our direct contact with POGO so far has been through their financial assistance program for families that provides reimbursement for lodging and food expenses while Georgia was in hospital.

Our oncologist are members of the group, and they had access to treatment protocols including the latest information from all over the world.

These folks don't make a lot of noise, but they're working in the trenches to cure kids cancer.

Check 'em out.

Candlelighters

Candlelighters is a national charity devoted to children with cancer and their families.

In Ottawa, there is a chapter of Candlelighters that serves the children and families at CHEO.

We received parking pass assistance which helps us with our oncology follow-up appointments to this day, but there are other programs available and lots of good advice.

There is a crisis fund, for families who are in treatment and need the help. This is so important.

I remember sitting down with my husband when we weren't sure whether Georgia would need up to 18 months of chemotherapy. We came up with a simple financial plan. Because it would be absolutely impossible for me to be that far away (about a 2.5 hour drive) from her, I'd give up my job. He would do the same. We would keep one car and lose the other vehicle and our house, and move our stuff into my parents' basement. We made it through with the help of some generous family members and the fact that Georgia did not need intensive long-term therapy, but this kind of worry was not what we needed to be spending our time on at that point.

There are bursaries for kids going into post-secondary school, and a laptop program for kids in treatment -- to help them keep up with their schooling.

They've got Elgin's Place at Scotiabank Place.

There are also events and other services including coffee breaks, bereavement support, birthday greetings and seminars.

Take a minute and visit their site.

Ronald McDonald House

We were at an amazing retreat with the James Fund families this past weekend.

It was regenerating, emotionally draining and uplifting, and sometimes just plain fun.

One of the common experiences we all had when dealing with a neuroblastoma diagnosis was navigating the maze of helpful, supportive groups, organizations and agencies that serve families who are faced with childhood cancer. Some of us weren't aware of programs that could have helped until it was far too late.

I thought I'd start a series of posts about the different organizations that are available to help -- because, when you're dealing with the immediate moment -- trying to breathe for the next 60 seconds and waiting to find out whether you can go home next week -- searching for financial aid and other support is far from your mind. But it's something that you need.

So, here goes.

One of the most famous organizations available to families is the Ronald McDonald House (RMH).

When Georgia was undergoing her treatment and staging at CHEO, we were able to stay at the Ottawa Ronald McDonald House for part of the time.

For parents -- if your child has a neuroblastoma diagnosis and you're at a children's hospital for treatmnt or care, you should qualify to stay at RMH. The staff at the hospital should be able to tell you how to make a reservation -- at CHEO, the nursing staff made the reservation for us.

For one of the weeks, we couldn't get in because the house was full. Another time, we stayed 1 night -- which probably wasn't the best use of this resource (I'll explain why below).

Tips (from our experience, and IMHO):

- ask the hospital staff to explain to you how the reservations are made - and try to have the space reserved as soon as your next hospital dates are known -- the RMH fills up quickly -- at $10/night, of course it does

- you're probably best to use the RMH when you are going to be at the hospital for multiple days in a row -- you need to clean your room and launder your sheets, etc, when you leave -- if you're only staying 1 night, then one of the parents may be missing the appointment while they are left behind doing the clean-up

- ask the staff at RMH about lunches, or look for the postings in the kitchen -- many groups will come in and provide meals for you at lunch time -- you can take advantage of this and save time cooking, to spend that time with your child instead

- RMH has space in the kitchen for you to keep your own food -- this will help to save some cash and allows you to eat meals as close to family style as possible. I know for us, Georgia got really ticked when she was on liquid diet and we brought food to the room, and rightly so. It may be easier on your child for you to sneak out for a bit and grab your food rather than eat something forbidden in front of her.

- at RMH Ottawa, the staff was wonderful, the atmosphere was incredibly peaceful and the rooms were spacious and well-furnished.

Cheers.

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.)