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.


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