A 'beary special' day

Thanks for visiting today. There’s lots going on over at Taylored Expressions this week and I’m especially excited about the sneak peeks today. Two ‘Beary Special’ Whimsical Wishes sets are coming your way on June 5th and Taylored Expressions will donate generously for each set sold. So why Sick Kids up in Canada?

As many of you know, my son Henri was diagnosed just under two years ago with chronic granulomatous disease (CGD), an immune disease he was born with. I’ve often thought that we were so fortunate in this case not to know earlier because Henri was allowed to do everything that kids love to do and that he saw his older brother and sister do—he splashed in puddles, played at parks, picked up frogs, plucked flowers, climbed trees and jumped in lakes. All of these things are on the DO NOT DO list when you have CGD because the beautiful world around us naturally has fungus and mould just doing it’s job and not visible to the eye. A persistent and odd infection on Henri’s wrist (probably from getting stuck by a thorn on a bush), which travelled up his arm to his lymph nodes, brought us to emergency and very quickly to Sick Kids. A young, ‘very with-it’ doctor led us from his diagnosis to the immunology team for testing. We didn’t think we would ever need to go for a risky bone marrow transplant, the one possible cure, but within a year that’s where we were.

I originally thought about creating a scrapbook page to give a glimpse of Henri’s experience since August 2007 at Sick Kids, but I thought just two pictures would tell you quite a bit...

Here Henri is three and desperately wanting to water ski like his older siblings. He’s trying out his moves on the dock at the cottage. He looks healthy and we believe he is—we have no idea that he has an immune disease or that an aspergillus infection is spreading from the tiny mark on his left wrist to his lymph nodes, his lungs and his spleen. This was about two months before we were given the devastating news. I think this picture should be the poster for CGD. Look at his life vest, which says 'endurance' on the badge. Endurance is something he’s needed and fortunately has plenty of!

The second picture tells just as much. Here Henri is just outside of 8B (the isolated bone marrow transplant ward) visiting with his twin siblings, Morgana and Aidan. Henri has started his chemo but still feels well enough to venture out of his little room, which will eventually be more strictly isolated and he won’t leave for about 20 days after his transplant. Look at his face and then his sister who will give her bone marrow blood to save her brother in about 10 days. Neither look uncomfortable or frightened (well actually, I guess Morgana looks a little nervous)—Sick Kids has been Henri’s home on and off throughout the year; the public areas are open, welcoming and often where you might see a favourite doctor, nurse or clown; Henri thinks his central line is cool and certainly better than a line in his arm; he knows that everyone is looking out for him and that even though the chemo and pre-meds are awful that he wouldn’t be going through this if we didn’t believe in his cure.

I’m working on a simple collection of cards to take to Sick Kids when we go for Henri’s bloodwork and follow-up on Friday.

I haven't coloured them yet but I may leave them as is and wrap up the collection with pencils--kids in hospital beds like to colour too. If you have a children’s hospital (or any hospital) near you, think about taking in some cards—some children live for long periods of time in the hospital and celebrate birthdays and other important holidays while they’re there. From Feb. 2 to May 29 last year Henri lived at Sick Kids and celebrated Valentine’s Day, St. Patrick’s Day, Easter, Mother’s Day and his own birthday before he got out—did I miss any there? Some kids don’t get cards unless the hospital has a great child life program in place. Please give it some thought...

But here's my card for today's sneak peek. Yes, a tangerine monkey inspired by one of the twin's first stuffies. I flipped Taylor's Cupcake Challenge sketch this week and used papers from K&Company (Carolyn Gavin Greenhouse collection) and We R Memory Keepers (Nonsense). The flower is cut from a slice from the Greenhouse collection--I couldn't believe how well it went with the flower image in this set! I used four of my favourite images from the two sets to create this little scene and coloured with copics, but I desperately need someone to teach me how to master them. Karen??? Anyway, 'thanks for your kindness' visiting today...

Enjoy the sneak peeks this week!!

~Nancy

If you are interested in knowing more about CGD, Henri’s journey and how Sick Kids has made a huge difference in our lives, please visit the blog we kept to keep family and friends informed: http://henri.typepad.com (username=henri; password=hair).