Tuesday, June 2, 2009

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).

18 comments:

Dana White said...

Nancy the stamp sets are amazing!! I would have bought them regardless because of the amazing cause - I know how much Sick Kids has done for you & for a girlfriend of mine in Toronto BUT I totally WANT the set from the your sneek peek!!
Looking at those pictures it's hard to imagine all that Henri went through and Morgana was amazing for her brother

Anonymous said...

Nancy, I have just hopped over to your blog and was reading about your little boy , Henri. I have an 11 year old boy who had a bone marrow transplant at 5 years old due to ALL (diagnosed at 15 months). My little one is well now and I know exactly what you mean about life changes and the benefits that these things bring. We have an appointment in the hospital on Friday with the growth specialist as he now needs growth hormone and I have never thought about taking in cards for the kids to colour (I have always taken them in completed). Thanks for the idea. I will work on it tomorrow.
Thinking of you here in Melbourne, Australia. Natalie

Kristy said...

Nancy, thanks so much for sharing your amazing story! Your family will be in my prayers. I saw the blog that you designed for Jodi Collins and it is adorable! Do you design blogs for other people? I thought if you did, I would love to talk to you about designing one for me. Thanks so much for sharing your cards!

Karen Motz said...

Your card's AMAZING Nancy! And I see nothing wrong with your copic colouring...that monkey is adorable. Seriously, I don't think you could have made these Beary Special sets any cuter...I really had a hard time putting them down and moving on to other things. Thank you my friend!

Denise (peanutbee) said...

This stamp set is amazing, and thank you for sharing your story. I love your monkey card...AND how you have the stuffed monkey peeking in from the background. Those simple white notecards are ADORABLE!!...I love cards with a lot of white space, and those will be GREAT for the kiddos.

Regan said...

that is an amazing story and wow- you are awesome!!! I'm happy about the donations, my friends little girls spent quite a bit of time in sick kids..its a great place

Karen Giron said...

OH, Nancy, thank you so much for sharing Henri's incredible story. You have amazing and brave children! I love the idea of having the kids color their cards - such a nice thing to do when stuck in a bed. Your heart is so generous, and I'm so happy to take part in this incredible program! Your card is SUPER cute!!

Taylor VanBruggen said...

Thank you for sharing Henri's story. It is so touching to hear what he went though and how wonderful that your daughter could be there for her brother in such a tangible way. I am so happy we are able to support Sick Kids with the wonderful images you designed! They are darling!

Donna Baker said...

what a fabulous set so dear to your heart - I am proud to be a part of it. Thank you for sharing the pictures of your kids, they are all special, and how wonderful & brave of Morgan to help Henri! I'm so glad the hospital has helped y'all. I adore your card!!!

Jami said...

Nancy thanks so much for sharing your story and sharing your heart through this stamp set! I know it's going to be a big hit and what a wonderful way to be able to give back!

Laura (scrapnextras) said...

Beautiful card and a heartwrenching story. So sorry you and Henri had to endure such an ordeal. How blessed that Morgana was a perfect match. Your set is adorable, truly a pleasure to work with and all the more so knowing the story behind it. God Bless.

Lynn said...

Nancy,
The stamp sets are adoreable and I can't wait to be able to purchase them. I am a Registered Respiratory Therapist and I work at Wake Forest Unverisity Medical Center in Winston Salem, North Carolina. I work in the Benner's Children hospital also. I love my job and it is amazing all that our Child Life team do to keep the children feeling as normal as possible being in the hospital. It is an amazing place as all children's hospitals must be. I know that they celebrate every holiday with a party and lots of charities come on a monthly basis going from room to room dropping off gifts. I wish your son the best and hope the your daughter does well with the donating of bone marrow and that Henri makes a speedy recovery!
I will keep your family on my prayer list!
Lynn Spencer

Beth Norman said...

Your children are very brave. Thank you for sharing your photos and story with us. You and your family will be in my prayers. Your stamps are darling and I can't wait to buy me some.

Blessings,

Beth

Laurie Schmidlin said...

Nancy, I cannot even tell you how touched I am from reading about Henri's journey! Wow! You and your family will be in my prayers!

The stamps you have designed are SO, SO wonderful! Thank you so much for sharing your talent, your heart, and your story with us!!

Hugs,
Laurie

michib2006 said...

Nancy,
Thank you for sharing your story. I'm so glad everything worked out for Henri. Both my sons were born with congenital heart defects and being so close to Sick Kids (we're in Guelph) was a godsend. It is an amzazing place, especially when you are going through a stressful time. I can't wait to purchase the new stamps and may also purchase some to give as gifts, as a way to give back to Sick Kids for all they've done for my family.

Miss Boo (a.k.a. jen70) said...

Darling children and cards! I love how you left them uncolored for the kids to color them.

Debbie Nelson said...

I love your stamp set and the story about your brave little boy and girl. I am a Respiratory Therapist at Arkansas Children's Hospital. I had a wonderful daughter that passed away from complications of Cystic Fibrosis three years ago. I know how much time is spent in the hospital when you have a chronic illness. The members of our craft group have started what we call "The Jennifer Project" in hopes of keeping Jennifer's memory alive. Each month we put together craft goodie bags...with puzzles, card kits, magic wand kits, scrapbook kits and other things we can think of to keep the children occupied. This month we are doing a bug theme and will send a little pot of potting soil to plant a small plant and watch it grow. Our kids are given our kits through our wonderful child life program. It really makes me happy to go into their rooms and seeing them enjoying doing our crafts. I wish you and your family well.

hkarpen said...

Nancy, I just finished reading about your journey with Henri on your blog and I very much appreciate the thought and care you have given to journaling your experience for the benefit of your families and others. I am a Neonatologist at Texas Children's Hospital in Houston, TX (hence my Splitcoast name-Stamperdoc) and paper crafting is my outlet from the gravity of my "day" job. Sick Kids is a fabulous institution and your experiences help support the work going on at many of the freestanding children's hospitals in the US & Canada. We live, learn and grow through the experiences and relationships we have with our patients.Kids are not just little adults and they need specialized care in special places. Best wishes for Henri's continued recovery and good health!