Saturday, October 10, 2009


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.

Friday, October 09, 2009


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.

Thursday, October 01, 2009

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.