Charlotte Lynn Fecteau October 14/94 - January 5/05

Welcome to Charlotte Fecteau's web page. It has been provided to keep people updated with Charlotte's progress as she goes through a Bone Marrow Transplant at the Hospital for Sick Children in Toronto, Ontario Canada.

Charlotte began her journey into transplant as a beautiful, bright 8 year old in Grade 3 at Birchmount School in Moncton, NB. She was diagnosed at age 5 with a blood disorder called Fanconi Anemia which causes bone marrow failure. Charlotte's first bone marrow transplant in April 2003 was not successful. She had her second second transplant on August 20th, 2003 in Toronto. The second transplant was successful in that she engrafted with her donor cells but it never worked well enough to consider it a true success. Two months after her second transplant Charlotte suffered neurological damage from undetermined causes - infection?, radiation?, chemo? or combination of all together. We will never know. This injury left her unable to walk, talk and cognitively impaired ... she had to relearn everything. She relearned how to walk but her sweet voice was never to be heard again.

Journal

Saturday, October 14, 2006 8:46 PM CDT

Happy Birthday Sweet Charlotte!

Our little girl would have been 12 years old today. And in grade 7 at Birchmount School. It’s still so hard to believe that she was with us for 10 years and has been gone for almost 2. I see how all her friends have grown into beautiful young ladies and wonder what she would have looked like. I see her friends at school old enough now to be peer helpers and in the leadership corps. She would have been great at that. We will forever be wondering what would have been.

I think she would have been excited about how we celebrated her birthday week … and it did seem to go on all week.

We had the 2nd annual “Give the Gift of Life for Charlotte’s Birthday” blood donor clinic on Tuesday, October 10th. It was a beautiful day and we had a great turnout again with about 90 donors … I’ve attached some pictures of it on this website. Next year I’d like to strive for 130 donors - 10 donors for every year since she was born! My employer, Medavie Blue Cross, supports this event and most of the donors again this year were from Blue Cross. We had balloons, birthday cake, gift bags and prizes. The New Brunswick co-ordinator for the Canadian Blood Service’s Unrelated Bone Marrow Registry was on hand to inform donors of that valuable program and to encourage them to join. I believe on that day there were about 6 people who actually had their blood drawn for joining the registry and many more who are considering it. I also had a display set up with some details and pictures of Charlotte’s difficult journey and of the story of co-worker, Amanda Bernard Logue, who gave her bone marrow to save the life of Josee Beaulieu of Montreal.

As we did last year, we donated some books to Sylvie’s school class in memory of and in celebration of Charlotte’s birthday. Sylvie was excited about helping me pick out a variety of English and French books that she thought her class would enjoy. Sylvie brought them to the class on Friday and she said they were all very excited to receive the new books.

And today, the BIG day, I gave Sylvie a birthday day present in celebration of Charlotte’s birthday - an angel and a devotional book for little girls for her to read. The angel gift has become a tradition now, I guess, since I did the same last year and she asked me a couple of weeks ago if I was going to get her another angel on Charlotte’s birthday for her ‘angel collection’. I also wrote a little poem (I’m not much of a poet but I try to do a couple of verses anyway):

It's Charlotte's 12th birthday
And I'm sure she would say,
"Mom, Give an Angel to Sylvie
To celebrate me!"

Even though we can't see her
She'll always be here
And love her, we will always do
The way we do you.

And, finally, a visit to the cemetery at 1 p.m. - the time she was born. It was pouring cats and dogs but it didn’t matter. I sang Happy Birthday to her and brought flowers and a balloon (although technically, balloons are not allowed at the cemetery). This past summer we put a memorial bench just in front of her grave under a big tree. Even though it was raining hard it all looked so pretty (I’m putting a picture of it as well since it is so pretty … her special resting place).

I was over at my parent’s place last week for Thanksgiving and Sylvie was helping me get the gift bags ready for the blood donor clinic. My 4 year-old great nephew Carter was there and he asked what we were doing. When I told him, he said “are you going to give it to Charlotte when she wakes up?” Such a very nice thought.

It’s been a busy month getting ready for the blood donor clinic and also the 50th Anniversary celebration we had for my parents on PEI. I found that day quite difficult. It was the first time that all the grandchildren were together in quite a few years - all except Charlotte, that is. And that hurt. Nothing seems complete without her - family get togethers, family portraits, family celebrations of any kind.

I’ve found this year a difficult year. I know I should be focusing on the good years we had with Charlotte but I can’t help feeling such pain and guilt for the pain and suffering she went through the last couple of years of her life - especially after her brain injury - and wasn’t able to communicate it to us. It just makes my heart ache so much.

We are so lucky to have Sylvie and she is such a good girl. She helps to bring the focus back to the present and to try and enjoy life again.

I’m hoping to update this website a little more frequently than once a year. Please stay in touch! And thanks for checking in!

I love this poem by E.E. Cummings and will leave again for all to read -

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Pictures ==> http://picasaweb.google.com/bccfect/CharlotteCaringbridge

Read Journal History

Hospital Information:

Patient Room:

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Links:

E-mail Author: huleo@nbnet.nb.ca

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