Not much to say...

Hi Everyone,

Not much to say. Ian and I had an OK day. We spent the day cleaning our living room furniture since Griffin decided to use it as a toilet while we were in Jamaica. We are assuming that he is missing the baby and upset that we were not home to care for him for 2 weeks (although he was left in very caring hands). He's never done anything like this before so we don't know what else it could be. Hopefully it will come clean, it's leather so its pretty resilient and the guy at the pet store suggested a special cleaner which we used in excess. If it comes clean, great, if not, we'll toss it an sit on the floor. Grif was so great with Grace. In her final days, he would let her lay her head on him and he would just purr. She would kiss him right on the lips, squeezing his little face so tight so that she would not miss her target, and he was never once cross with her. He is a wonderful cat and is bringing a lot of comfort to us during these hard days. I spent some time rereading some previous blogs. As difficult as the last year has been, I'd relive it a million times just to squeeze my baby one more time. My mind is racing tonight with the last words Grace spoke to me: "Mama sing Hush" (Grace's request for me to sing her Hush Little Baby). Her last words to Ian were "NO DADA!" which is so indicative of there relationship. We miss her with every stitch of our beings. It's so weird, I went the whole day without crying once yet in the last two hours I've cried nonstop. I guess this process is going to be pretty unpredictable.

Thank you to everyone who has donated to the Grace Compagnon Stanley Tribute Fund. For those of you who are not aware, this is a research fund that we set up through the Hospital for Sick Children (in Toronto) to financial support pediatric brain tumour studies. You will receive a tax receipt when you make a donation to this fund. If you would like to choose this as one of the charities that you support, please contact the the Hospital for Sick Children (in Toronto) and give them the name of this fund when making your donation.

Mama misses you baby.

Les

We are home & Eulogy

Hi Everyone,

Ian and I have returned from Jamaica. Jumped on a plane Saturday morning after Grace's service on Friday. Tried our best to recoup a bit. I'm not sure how successful we were. First week we slept a ton, second week insomnia set in. Ian started working out (sometimes twice a day) to exhaust his body enough to find sleep, I medicated my self. Ian's probably picked the healthier option, but who's concerned about health? A positive from losing a child... you no long fear death. I look forward to being reunited with my sweet angel. Obviously I have to work on healthier thoughts... I'll put it on my list for tomorrow.

Ian did such a wonderful job with his eulogy. For those of you who were unable to attend Grace's service I thought I'd attach it here. How my hubby finds his strength is a mystery. But thank god for Ian... I'm not sure how I'd do this without him. Here are his words:



2 years, 7 months, 1 day and 6 hours. A blink in time. Then like The Cat In The Hat, you were gone in a flash. Still Mama & Dada love you and hug you and kiss you every day. You touched the heart and soul of every single person you met. In your special way you taught us how to grasp the beauty of each day.

For 16 months you so bravely battled the cancer monster with a feisty spirit, that beautiful smile and a pair of ebony eyes. Your only weapons were pink blankie, Cat and Stickers, stickers and more stickers. We love you Lady.

Grace met Wailana and took much comfort in all that they had in common.

Wailana the Waterbug woke up each day,
To be with her friends, to go out and play.
She dove and she swam with a smile on her face,
What fun she would have in this wonderful place.

Swimming about, she would bubble with glee
Oh, how she loved all the sights she would see
Wherever she swam, a rainbow would follow -
Past reeds, over rocks and through logs that were hollow.

A parade! A parade with Wailana up front,
Riding a snail as the tadpoles did stunts.
With a jump and a splash, frogs quickly rushed in
They loved the parade and watched on with a grin.

What a joy to be seen, all the cheers and the smiles,
Waterbugs followed the parade on for miles.
All through the Winter,Spring, Summer and Fall
Wailana's parade would bring laughter to all!

Along with her friends, she would practice each day
Perfecting her dance for the water ballet.
With a leap and a spin, she heard cheers from the crowd
Her parents just gleamed and they felt very proud.

Then, one rainy day, she awoke felling blue,
How her stomach had ached and all her joints too.
Family and friends came from far and wide
To gather around her and be by her side.

The elders would whisper and bow down their heads.
They knew what would happen and started to dread.
Wailana was calm and didn't feel fear.
She wasn't afraid because love was so near.

Stories were shared from long, long ago,
About others who changed and then had to go.
After leaving the pond, they would head for the sky,
While all understood, they could not explain why.

Unable to play, she would rest everyday
Her friends gathered near her and started to pray
"Wailana, please join us and lead the parade."
But Wailana now knew that her time would soon fade.

Surrounded by loved ones, it soon was the day
To say her good-byes and be on her way.
Wailana was sad but she knew in her heart
The time had now come for her new life to start.

Later that night by the light of the moon
She prepared for the change that would take place soon.
When all of a sudden, wings magically grew,
Reflecting the moon beams that shone brightly through.

A rainbow of colors danced in the light,
She never had seen such a glorious sight!
Then turning around, she let out a giggle
While making her dragon fly tail start to wiggle!

She flapped her new wings, testing them out,
Then found herself quickly floating about.
Flying higher and higher, she looked down below,
At her lily pad home and called out "Hello."

Feeling much better, she soon learned to soar,
Over rainbows, through forests she soon would explore.
Her sadness was gone, she no longer felt blue,
She soon again found all the joy she once knew.

Now a beautiful dragonfly high up above,
Wailana would watch over those that she loved.
What fun she now had, through clouds she would fly,
Leading parades with her friends in the sky.

(Wailana the Waterbug - Story by Greg Barrett & Jane Hopkins)

Ian and I read this story to Grace constantly in her final weeks/days/hours with us here on earth. At first we did not think it was necessary to explain "things" to her because of her young age but we quickly came to learn that she was wise beyond her years and yearned to understand what was happening to her body. One of her final verbal requests was to hear this story read to her.


Mama misses you baby.
L~

In Memory of Grace

Grace Compagnon Stanley, 2 ½ years old, earned her angel wings on September 6th, 2006 after courageously fighting cancer for over half her life. Grace is the cherished daughter of Ian Stanley and Lesley Compagnon, only grandchild of Hal and Dianna Compagnon as well as June Heaven and Max Stanley. She will be missed by her uncles, Chris and Wayne, as well as her pet cat Griffin and Nana’s pets Willie and Simba. Grace touched the lives of many in her short time with us and although she will be missed physically, her spirit will live in our hearts and the lessons she taught us will guide us until we are joined with her again. Grace’s life will be celebrated at St. Ignatius Loyola Catholic Church, 2300 Burnhamthorpe Road West, in Mississauga on Friday September 8th at 10:30am. The service will be followed by a reception at The Glenerin Inn, located at 1695 The Collegeway, in Mississauga. Thank you to Dr. E. Bouffet, Dr. U. Bartels, Dr. J. Rutka and the army of medical professionals who supported them in their crusade to get Grace well. We were blessed with the guidance of your brilliant minds, compassionate hearts and unwavering determination to fight this unforgiving disease. Lesley, Ian and family would like to thank their friends with special thanks to Dr. C. Newman for the support extended so generously over the last year. In lieu of flowers, donations can be made to the Grace Compagnon Stanley Tribute Fund by contacting The Hospital for Sick Children in Toronto or by envelopes that will be available at her reception. This fund has been set up to financially sponsor pediatric brain tumour research at the HSC. If unable to attend the service/reception for Grace please feel free to sign the ‘Book of Condolence’ for the family at Baygardens.ca or you may e-mail the family at baygardens@cogeco.net.

In celebration of Grace's life...

Grace's body died at 10:20am this morning. Her life will be celebrated at St. Ignatius Loyola Catholic Church, 2300 Burnhamthorpe Road West, in Mississauga on Friday September 8th at 10:30am. The service will be followed by a reception at The Glenerin Inn, located at 1695 The Collegeway, also in Mississauga. In lieu of flowers, donations can be made to the Grace Compagnon Stanley Tribute Fund by contacting The Hospital for Sick Children in Toronto or by envelopes that will be available at her reception. This fund has been set up to financially sponsor pediatric brain tumour research at the HSC.

Hard night that stabilized

Hi Everyone,

I was going to title this note "Hard night that got better" but then it occurred to me that the word "better" was so far from appropriate. Right now I guess "better" for us is stable, meaning no active crisis taking place in this moment. Grace was in a coma (I have to still get used to this word... I'm finding that I'm saying "sleeping" instead, and she is far from sleeping) for the balance of the afternoon and early evening yesterday. Ian and I were feeling comfortable telling my parents to leave and get some rest, June (Ian's mom) was here for the night and we just wanted to lye and talk to Grace. It's so odd, now when I write her name, I almost feel it appropriate to put it in quotations like "Grace". Is that terrible?? I don't know... maybe this is too honest but she is so far from the Grace we have enjoyed over the last 2 1/2 years yet still so cherished ... it's truly so hard to comprehend so even more difficult to explain. Ian and I began the routine we do every 3-4 hours: rolling her limp body from one side to the other to avoid bed sores, wiping the inside and outside of her mouth and putting Vaseline on her lips, saline soaking her eyes to remove the residue that makes her lids stick together, applying drops to her eyes, moisturizing her nostrils with saline soaked Q tips (the oxygen makes them dry), wiping her face and neck as well as creaming what feels dry. Did you notice I did not include a diaper change? Grace is no longer urinating or having bowel movements. When we rolled her from her left to right side her breathing became distressed and she began wheezing for air. Ian and I placed her back to her left side but the fluid in her lungs had been disturbed and this return to her previous position was not fixing it. Ian began suctioning her without success. We turned her oxygen on high and called for Junes assistance (she's a retired nurse). I began to panic, maybe our decision to keep Grace home was a mistake, maybe we should be in hospital. I know that to make this decision we had done our research. We spoke to other parents who's children had died and they had recommended being at home for as long as we could handle... to the end if possible. We had visited a hoists to see if this would be more comfortable for Grace. We had discussed in detail with the palliative care team whether Grace's care would be at all compromised by not being in a medical facility and we were insured that it would not be compromised and that her quality of time would definitely be enhanced by being at home. But in this moment of her gasping for air, I questioned what I had strongly felt was a sound decision. After placing a panicked call to my parents asking them to return, June, Ian and I began frantically suctioning, repositioning and administering morphine hourly until Grace began breathing comfortably again at 12:45am. Over two hours of distress. Truly uncomprehendable. Ian and June stayed up for the night, rolling Grace, administering morphine every 4 hours and monitoring her breathing. My parents stayed and I tried to find rest lying beside my baby instinctively jumping up every few hours to check on her condition. I don't know if many of you have read the book "Tuesday with Morrie" but if you have not I would highly recommend it. It tells the story of the last year or so of a man's life who is dying from a degenerative disease as documented through interviews that took place every Tuesday. There are a few lines in this book that will stick with you forever. One being "you must learn how to dye before you can truly live". I think this is why cancer survivors usually say cancer was one of the best things that ever happened to them. It teaches them how to live, truly putting in perspective what is important. I know we all say it, like I remember saying it when I had Grace... "now I know what is truly important", but now through Graces suffering I truly live it. Maybe this is just me, maybe others are able to reach this epiphany without enduring such tragedy, all I'm saying is that Grace has saved me. Saved me from self absorption, over indulgence, truly has made me acknowledge the difference between "needs" and "wants". Our needs are truly such a miniscule amount of what we posses. I'm not saying I'm moving to a third world country to live in a hut. I'm just saying that I remember being convinced that Ian and I "needed" a 4 bedroom home to expand our family from 3 to 4. I remember thinking if we could afford it 5 bedrooms this would be even more ideal, one for each of our planned 2 children, our room, an office and a spare room. Now thinking about this is mind boggling to me. I just didn't have a clue. I thank my sweet baby for saving me, teaching me how to truly live, laugh and love. She remains in a comfortable coma. May she continue to find peace.

Les

P.S. I keep hearing that so many people now follow this blog. Initially Alex created it for me so I would not have to individually contact the dozen or so close family and friends on Grace's condition. Truly just as a time saver. I am complimented that so many of you faithfully read this blog out of sincere concern for Grace and our family. Your prayers have given us strength throughout this horrific process. However, sometimes I question whether the honesty I write with is beyond that which I should share with the many who now follow. Hopefully not. Should it bother me that so many know that I can't sleep without being medicated? Maybe. Or would it be more concerning if I could sleep without being medicated while living this nightmare? Probably. I'm just gonna keep writing. L~

Deteriorating

So... where are we?? Grace continued to be in and out of consciousness the balance of Saturday and Sunday morning. Sunday mid day when we sponge bathed her it was so obvious that her body is dying. Her skin is so dry even though we cream her multiple times a day (lack of hydration), her neck is stiff and overextended so we are unable to lye her on her back (even to change a diaper), her mouth secretes yellow "goo" since her saliva glands are no longer operating properly. We do "mouth care" multiple time a day (wiping her lips, teeth and inside her cheeks with a warm cloth, Vaseline on lips) as advised by our doc, but yesterday was the first time we witnessed this buildup. My mom has lived this before since she cared for her own mother when she was dying of cancer. My mom has been an inspiration through out this process. Like yesterday with the mouth secretions, when I saw them I was stunned, panicked and shocked at the deterioration to the point of not being able to continue wiping. My mom calmly explained to me what she thought it was (which was later confirmed by the doctor) and took the cloth from me, rinsed it and continued to wipe. I sat there watching trying to digest once again that my baby was dying while admiring my mothers strength to continue. I know she loves Grace as though she birthed her herself (actually on a couple of occasions I've had to remind her that that is not the case) so it's not at all that she is more distanced from her and as a result better able to manage. I think having lived this before she is aware that at this stage one of the best ways we can show our love is through immaculate care for our loved one, pushing our squeamish feelings aside. I hope that one day I am able to guild some one else with the same level of strength that my mother currently guides me.

In the afternoon Grace's breathing became a little unstable (long periods of apnea) so we hooked her up to her oxygen for the first time. She didn't like the nasal prongs and a couple of times mustered up the strength to pull it off. After pulling it off she would then stick one finger up her nose and leave it there making it impossible to get the prongs back on. She's one smart cookie. Finally, she fell into a good sleep, we were able to dislodge the finger and replace the oxygen prongs.

Last night Grace stopped breathing somewhere between 10pm and 11pm. My parents had left for the night, Ians mom was watching T.V. downstairs and Ian and I were in our room with Grace lying between us trying to determine whether her sleep apnea (pauses between each breath, was up to 25 seconds) was getting worse and whether we should adjust her oxygen flow or call the doctor. When suddenly Grace's eyes bulged open, she begin wheezing and then stopped... she was lifeless. Ian yelled to his mother to call my parents, Ian called the doc while running to get her morphine. I cradled Grace hysterically begging for her to breath. Minutes later she begin sporadically taking breaths, the doctor arrived and administered morphine while examining her. She continued to do poorly so the doctor stayed for a few hours to monitor her and administered a medication to help clear the secretions in her mouth. Grace briefly struggled to breath for a second time while the doctor was here so she administered more morphine. I never knew that morphine is not only a pain med but is also used for sporadic breathing. Around 1am Grace stabilized, the doctor left but all family stayed. I ended up falling asleep for an hour with her in my arms (I had taken too many meds to try to stay calm) and Ian was up the entire night. The doc returned early this morning and ordered in suction equipment to complement the oxygen equipment we now are reliant on. The nurse just left from showing Ian how to use it.... I no longer participate in these training sessions. I have accepted that at this point in the game, I am far to emotionally unstable to be reliable during a medical crisis involving Grace. I am in such fear of Grace not dying in my arms. It seems as though when ever we hit one of these crisis moments the only thing I can do is cradle her, rock her and reiterate my love for her. As a result Ian was trained. So far today she has been unresponsive (in coma) but seems to be breathing much better. Ian is now resting (having been up for over 24hrs). We are busy rotating her position every 4 hours, administering mouth care, keeping her eyes moisturize with saline, applying lots of cream as well as playing her music and reading stories. I would love to hear her little voice again... Especially her classic "No Mama!" The doc will be back tonight. Thank you for your prayers.
L~

In and Out

Hi Everyone,

Grace has been in and out of consciousness since the doctor left. Once she said "Dada put on Strawberry" (her request for Ian to put on Strawberry Shortcake's Get Well Adventure). Another time she said "downstairs" and once we were downstairs she said "Mama read Green Ham" (her request for me to read Green Eggs and Ham). About a 1/2 hour ago she said "Mama Hush" (her request for me to sing Hush Little Baby). Ian and I are thankful for these moments for when the doctor first told us this morning that she was not sure if we would hear her voice again, our minds scrambled to try to remember her last words to us last night. She seems comfortable.... this is most important. We are devastated but managing... right now she's pretty nonresponsive again. The doctor is now coming by twice daily. We will she her again tonight around 8pm.

Please pray for Grace's comfort.
Lesley

Coma

Hi Everyone,

Doc just left. Grace is in coma. Doc says some kids come in and out. Believes she can still hear us.

L~

Empty

Hi Everyone,

Hard day... just feeling completely spent and empty. Grace seems stable but is interacting very little. Ian and I feel like she is trying her best to ease us into what will soon be our new reality. We are now used to not seeing her walk, play or eat. Now it seems that she is getting us used to the idea of not hearing her voice. I don't know if there is an "easier way" to experience the loss of a child but we believe she is allocating our "loss" a little bit each day in an attempt to make it easier to digest. I don't know... if it were to all happen at once maybe you'd be in such shock that you'd be numb and that would make it "easier".... there's probably just no "easier" when living this. I wish I had a cute storey to share but we really were just busy all day trying to bring comfort to our baby... reading, singing, talking to her about how proud we are of her and how much we love her. Is it odd that the storey book she likes best right now is about a waterbug that gets sick and has to "go" and become a dragonfly who is free of illness? Never thought I'd be reading this to my 2 year old. Then again there's so much about life today that I could say "I never thought" about.

Sorry for crying the blues. I'm off to hug my baby. I'll have lots of time to cry when I no longer have a baby to hug.

L~