Little Grace

Happy 7th Birthday

2011-02-05T15:13:00.001-05:00

Happy 7th Birthday my sweet angel Grace. Mama's heart aches missing you today and everyday.

4 years today.

2010-09-06T15:00:00.005-04:00

It's hard to believe 4 years have past since Grace's death. I don't believe that "time heals all wounds", but I do know that time removes you from that place of unbearable grief that I don't believe one could survive forever. Time also however removes things that you cherish, like Grace's scent on the clothing that I have packed away and still visit for a hug now and again. I often wonder what it must be like to live with out the weight of Grace's death impacting every moment of my existence. But then I remind my self that without it, I also most likely would not cherish every simple moment to the extent that I do or brush off most "crisis'". Really, with health, I'm thinking all is manageable. So today as I mourn Grace's death, I am reminded of my blessings to have had her, loved her and now live differently as a result of the lessons she taught me.

Mama misses you baby.

Les

This year's Walk for Grace

2010-07-15T21:06:00.002-04:00

Hi Friends,

It's with a heavy heart that I've come to the decision not to run this years Walk for Grace in memory of the 4th anniversary of Grace's death. I'm just finding two large fundraisers a year too much to handle with two small babies under foot and very limited resources with regards to care for them. May ended up being an insanely hectic month with the 3rd Annual Golf for Grace as well as Naomi's first birthday. The insanity trickled over in to June with attempting to wrap up all required paperwork from the golf tourney, a business trip for Ian that extended it self into a Disney trip for Eli and Naomi which was then followed by a trip to Denver for me for a girlfriends wedding. I find my self mid July just wanting to spend the balance of my leave from work (I return mid December) just soaking up the wonderfulness of Eli and Naomi with out distraction. I'm heart broken that I can't "do it all", but "doing it all" I know will come at Eli and Naomi's expense. So instead of this years Walk, Eli and I will be cutting our hair on the 4th anniversary weekend of Grace's death and donating it to make wigs for children and women with cancer. It costs $1000 to produce each wig, so if you'd like to donate financially in memory of Grace please visit www.locksoflove.org for details. Again, this has been a very difficult decision, fundraising for Sick Kids is one of the few ways I feel I can still parent Grace, so I'm hopeful when I run the Walk in 2011 it will not have fallen off every one's radar. Thanks to each of you for your love and support of me and my family while we continue to navigate life without Grace physically with us. To date over $150,000 has been raised for brain tumour research in her memory. Further donations can be made to her fund by cheque made out to "Grace Compagnon Stanley Tribute Fund" and mailed to Sick Kids Foundation (525 University Ave., 14th Floor, T.O., M5G 2L3).

Mama misses you baby.

$14,758!!

2010-05-28T14:46:00.001-04:00

Thanks to the incredible support of my wonderful friends, The 3rd Annual Golf for Grace raised $14,758 for pediatric brain tumour research in Grace's memory.

Mama misses you baby.
Les

3rd Annual Golf for Grace

2010-03-13T21:03:00.002-05:00

Hi Friends,

The 3rd Annual Golf for Grace will be held on Saturday May 15 at Springfield Golf and Country Club in Guelph. Please see the fundraising page of Grace's website for further information and for down loadable registration forms. As many of you are aware, from my previous post, last years earnings proved particularly important having funded a study on Grace's specific tumour with promising findings to help drive better treatments and hopefully cure. Please join us this year if you can. It's a fun day for golfers and non golfers. I have my fingers crossed for good weather and look forward to seeing everyone.

Mama misses you baby.
Les

Happy 6th Birthay Baby Girl...

2010-02-05T09:45:00.003-05:00

Today would have been Grace's 6th Birthday. After having only shared 2 birthdays with her while she was alive, and now this is the fourth without her alive, you would think that this day without her would feel more like the "norm", yet it doesn't. My heart aches missing Grace everyday, but today my grief is overwhelming. I'm so grateful for Eli, Naomi and Ian who carry me through days such as these. Thank you to my family and friends who continue to remember Grace and live differently as a result of being touched by her life.

Last month I received a letter from one of Grace's oncologist. This oncologist we only met with once. It was towards the end of Grace's treatment, post bone marrow transplant and shortly after her second brain surgery. For those of you who followed Grace's Blog, you may remember that she always had a "spot" on her brain post the resection of her first tumour. This spot remained stagnate for months through rounds of aggressive chemo. Therefore the decision was made to proceed with Grace's bone marrow transplant without doing exploratory surgery on this spot, which was in conflict with Grace's treatment protocol that suggested all suspicious "spots" be investigated prior to bone marrow transplant. This decision was made because the physician's caring for Grace felt so strongly that it was not malignant (suggesting it was not missed at the time of her original resection) but simply scar tissue as a result of the surgery. Ian and I agreed, hoping to minimize Grace's side effects post treatment and not expose her brain to a second major operation. We proceeded with the bone marrow transplant. Then post bone marrow transplant something changed that led Grace's physician's to now want to resect this spot and biopsy it. It was explained to us that this would be the only way that they would be able to determine what was the next step in Grace's care. This really caught Ian and me off guard. We didn't think there was a "next" step. We thought Grace's care was complete since we were under the impression that she was cancer free and at the end of her treatment protocol. We agreed to the second brain surgery and then biopsy of this spot. What were our options really? During the days following this surgery we received daily updates from the lab with regards to whether or not the biopsy was positive (malignant - cancer) or negative (benign - not cancer). For 6 days we received reports that the biopsy was benign! Day 7 we would receive the final report. The oncologist who wrote us this letter we met for the first (and only time) on day 6 of these biopsy reviews and she communicated to us that the biopsy continued to prove benign and she expected nothing to change in the next 24 hours when the final review was presented to us. Ian and I celebrated, under the impression that Grace was definitely cancer free and at the end of her protocol and we were simply days away from returning home (after living at Sick Kids for 8 months) with a "well" baby girl to love and enjoy. We spent the evening talking about all the simple pleasures we so looked forward upon our return to home, most notably all going to bed and waking up under the same roof, together as a family. Well... on day 7 the final biopsy was presented to us and malignancy was found in the final 24 hours of testing. Although we were hopeful at the time, the threat to Grace's life could not be ignored. Ian and I were devastated. We knew Grace's post bone marrow transplant body could not endure the level of chemo needed to attack this kind of malignancy. Her physicians were hopeful, reassuring us that her scans were now completely clear, so the entire "spot" was resected in the second surgery, and they would send her home on some low dose oral chemo for additional reassurance. I felt that I had failed Grace, in that our decisions with her medical team were poor and if we had pushed for exploratory surgery on this spot prior to bone marrow transplant (as per her treatment protocol), she would be more likely to win then fail this battle that she had so bravely endured for the last 8 months. If we would have been aware that this spot was malignant prior to bone marrow transplant, we could have added additional rounds of high dose chemo to fight the malignancy, chemo that her post bone marrow transplant body could not endure. Grace DESERVED for better decisions to be made for her by the adults in her life, directing her care. The "what ifs" are never ending...

Here is the letter from Grace's oncologist:

Dear Ian and Lesley,

I hope this letter finds you and your son in good health and in a joyous mood for the holiday season. Although it's been a while since we last met, my recollection of the events around your daughter Grace's diagnosis and clinical course is still and will remain vivid in my memory. Our last interaction was when I delivered a falsely optimistic view of the preliminary studies on Grace's second surgery. Unfortunately, with quick change of service staff in our busy team practice, I was unable to personally follow up on the unfortunate delivery of that falsely-placed optimism. I apologize for not having taken earlier opportunities to confront/apologize for this unfortunate series of events. Certainly as a parent and a physician, it is an omission I have regretfully re-called many times.

I am now writing, with some trepidation, to share good news regarding breakthroughs in studies of the aggressive brain tumor that Grace suffered from. As you heard from us during her treatment, that she has an uncommon tumour, for which we have limited understanding and therefore even less insight into best treatments. Even though you were probably not aware, Grace's tumour was analyzed as part of a genetic study on aggressive childhood tumours in my laboratory at the Labatts Brain Tumour Research Centre. Our goal was to determined the genetic features of these aggressive "embroyonal brain tumours" diagnosed in Grace and several other children in our hospital. Unfortunately due to the unusual and rare occurrence of these tumours, we worked over a period of 4 years to collect tumours from 12 centres worldwide including centres in Asia, Europe and North America to try and put together the molecular picture of these tumours. As a result of this effort, we have now identified a specific molecular marker for these tumours variously called, ependymoblastoma and other PNET variants. Our study, which I have attached, is an important sageway into developing specific diagnostic marker for this disease and critical for ultimately developing more sophisticated and specific therapeutics.

We are hopeful that our research, which represents one of the first breakthroughs in the study of these aggressive tumours will translate into more powerful methods for diagnosis and a better chance at cure. Clearly, in addition to have a lasting impact on all who were involved in her care, your daughters, Grace's legacy continues in this most important contribution to advances in this unfortunate disease.

Again, my sincere apologies for wishfully sharing false optimism, there was no intent to cause you more pain than you had to endure. Thank you again for your passionate support of Brain Child and all the research advances at the Labatts Brain Tumour Research Centre.

Many wishes and much joy, good health and prosperity in the New Year.

Merry Christmas.

Sincerely,
Annie Huang

So are these incredible people or what? Yes, the higher your highs, the lower your lows, so when Ian and I were told of the malignant biopsy after expecting it to be benign, maybe our fall was a bit harder then it may have been if eased into it. But without this false optimism, we would have never enjoyed that sleepless night of sharing what simply luxuries we most looked forward to upon our return home as a family. Believe me, I have dissected every moment of Grace's care, every decision made, requested and review her scans and reports since her death from all parties who participated in her care and on MANY occasions better decisions could have been made for Grace now given the information that we have today. However, at the time, I believe that all parties involved were making the best decisions they could have with the information we had at the time. I believe we all wanted Grace to live, to win, to enjoy the world that a little girl should free of disease, I.V.'s, surgery's, chemo... the list of the negative she endured in her short life is never ending. But it just is, what it is. And sometimes I hate simplifying such a monumental chain of events with that statement, but what else can be said really? We must love what is, be grateful for what we are given, and choose not to live as if we are owed. Grace was an absolute gift. I am forever indebted that it was through her suffering from which I grew. I am committed to Sick Kids, their physician's, their research, their goals... every child deserves to be healthy.

Happy 6th Birthday Baby Grace.

Mama misses you baby.
Les

$15,039.77!

2009-09-21T14:52:00.002-04:00

Hi Everyone,

Just a quick note while Eli and Naomi nap... The 5th Annual Walk for Grace raised $15,039.77 for pediatric brain tumour research at The Hospital for Sick Children in Toronto. A huge thank-you to all of our wonderful family and friends who made this day a huge success. The weather was beautiful (finally) and we enjoyed so very much seeing everyone, walking in the park, a BBQ lunch and of course the sweets from the bake table. Please continue to pray for Tobin. Today marks the beginning of his 3rd week of radiation.

Mama misses you baby.
L~

Could it be sun?

2009-09-12T21:16:00.002-04:00

We are just 11 short hours away from the start of The 5th Annual Walk for Grace and the weatherman is still calling for sun... could it be? As those of you who attend Grace's fundraisers regularly can contest, good weather has been scarce at our events. Due to Bronte Provincial Park double booking Breckon Picnic Shelter in error, we will be set up just east of the shelter, close to the 1km trail and barns. Looking forward to seeing everyone tomorrow. All pledge and sponsorship earnings are going to pediatric brain tumour research at Sick Kids. All bake and raffle table earnings are going to the Haas family to help with additional expenses while their son is undergoing treatment for his 2nd relapse with a malignant brain tumour.

Mama misses you baby.
Lesley

3 years today...

2009-09-06T09:19:00.001-04:00

Mama misses you baby.
L~

It's been a while...

2009-07-01T11:48:00.003-04:00

Hi Everyone,

I've been so neglectful of this blog. I doubt many even read it any more, but a lot has happened in the last 3 1/2 months so I'm hopeful an update is still warranted.

THE 2ND ANNUAL GOLF FOR GRACE was a huge success raising just under $17,000 for pediatric brain tumour research at the Hospital for Sick Children in Toronto. Unfortunately the weather was poor and the course was too wet to use power carts, but 12o golfers still participated on foot and another 25 attended the dinner only for a total of 145 participants.

TOBIN HAAS was again our special guest running the putting contest and sharing the story of his battle with brain cancer since 2002. Unfortunately, after almost 3 years of good heath, Tobin's cancer has returned and this new growth was discovered last week. He is currently under going further testing to determine the best route of treatment. If you would like to follow Tobin's story please do so at www.caringbridge.org/visit/tobinhaas. Please pray for Tobin, he needs a miracle with this being his second relapse. Please understand that this is why it is so important to raise money for pediatric brain tumour research. We must find better treatments, cures even, to help children like Tobin win his fight against this unforgiving disease.

NAOMI GRACE STANLEY was born just 2 short weeks after the golf tournament on May 17th at 12noon. Weighing 8lbs, 1 1/2 oz and 20 1/2 inches long, she was the tiniest of our three babies. We are thrilled to have our arms so full with both Eli and Naomi. We continue to miss Grace everyday and were glad to have the opportunity for her baby sister to carry her name.

THE 5TH ANNUAL WALK FOR GRACE will take place on Sunday Sept. 13th at Bronte Provincial Park in Burlingtion. We are so hopeful for good weather, this really seems to be our largest challenge with regards to the success of our fundraisers. We have once again secured Breckon Picnic Shelter (parking area F). The agenda will be as follows:
8:20am: 31km registration & pledge drop off, Breckon Picnic Shelter
8:30am: 31km walk begins
11:30am - 1:30pm: 1km & 5km registration & pledge drop off, Breckon Picnic Shelter
11:30am - 3:15pm: Crafty Corner kids activities
11:30am – 4pm: BBQ and bake table
12:45pm: Welcoming Ceremony
1pm: 1km walk begins
1:30 pm: 5km walk begins
3:30pm: Conclusion
More information and down loadable pledge forms will be available on the fundraisers page of Grace's website (www.gracestanley.org) shortly. The $15 per vehicle park entrance fee will be waived at park gate with the presentation of a pledge sheet.

GRACE'S FUND, as of last month, has joined the six figure club having achieved over $100,000 raised for pediatric brain tumour research. Grace now has a larger plaque in the "Hall of Honor" at Sick Kids where she spent the majority of her short life. I continue to miss her every single day so very much.

HOW YOU CAN HELP? Please, most importantly, pray for a miracle for Tobin. He is a very special little boy and deserves to beat this disease. Also, please come out to our walk on Sept. 13th. Research for pediatric brain tumour research is under funded and this must be changed. And finally, now that I have 2 little ones under 2 years of age, I'm finding it difficult to allocate as much time to fundraising as I'd like to. I will most likely not be able to solicit for corporate sponsors on the same level as I have in the past, so please, if you work for a company who could be a corporate sponsor for the walk please contact me at lcompagnon@cogeco.ca and I can send you more information. Several levels of sponsorship are available from $3100 to $200.

Mama misses you baby.
Lesley

2nd Annual Golf for Grace

2009-03-08T19:16:00.003-04:00

Dear Friends,

I’d like to begin with thanking all of you who supported the 1st Annual Golf for Grace Tournament that was held on May 24, 2008 at Springfield Golf and Country Club in Guelph. With over 120 participants, the tournament was a huge success raising over $18,000 for pediatric brain tumour research at The Hospital for Sick Children in Toronto. Since the inception of Grace’s fund in December 2005, TOGETHER we have raised $95,701.92 for The Hospital for Sick Children in Grace’s honor. It is impossible for Ian and me to express our gratitude sufficiently. Thank-you for continuing to keep Grace’s memory alive, injecting further purpose in her short life, and supporting our family as we continue to manage life without Grace physically with us.

The $95,000 + that we TOGETHER have raised has supported studies such as Dr. Eric Bouffet’s “Improving communication during the palliative care of children with brain tumours” and Dr. Dirks’ “Investigation of a novel tumor suppressor gene in human brain tumours” as well as many others. Take a moment to think about the impact of this work. Think about the child who is currently living with a brain tumour and is struggling to beat this unforgiving disease. Think about the parent of the child living with a brain tumour and the hope that Dr. Dirks’ research may dictate better treatment options for their baby so that they will not have experience a life without their child. As a parent who has cared for a dying child, the importance of Dr. Eric Buffet’s work to improve communication with children dying of brain tumors is invaluable. Children dying of brain tumors are usually cogitatively aware well past the time that they are able to verbally communicate. Dr. Buffet is committed to finding ways to communicate with, and as a result bring comfort to, dying children during this gap between their ability to verbally speak and death. Without YOUR support, this work could not be done. Please allow yourself to acknowledge the importance and invaluable impact of YOUR contribution to this research.

The 2nd Annual Golf for Grace will be held on Saturday May 2nd at Springfield Golf and Country Club. The day will run similar to last year, as a Shotgun, Texas Scramble, so that golfers and non-golfers can enjoy the day together equally. We will again enjoy great golf, amazing prizes (including a “Hole In One” car sponsored by Autopark KIA Burlington), good food but most importantly time with friends and family while remembering Grace and how this little lady has inspired each of us to live our lives a little differently.

There are 4 ways that you can support The 2nd Annual Golf for Grace. Please choose one or more!

1. PARTICIPATE! Register to golf. Simply fill out the attached registration form. If you have friends or family who are also participating that you would like to have in your foursome, please include their names on your registration sheet and we will ensure that you enjoy the day together. Please return the registration form and payment in the form of cash, cheque or credit card to Lesley as soon as possible. We also have a limited number of “dinner only” spots. Please register for these early! Partial tax receipts will be issued for the golf/dinner and dinner only options.

2. SPONSORSHIP:
a. SPONSOR A TEE OR GREEN. Your name or company name will appear on that tee or green recognizing your support. A tax receipt for your entire sponsorship amount ($150) will be issued.
b. SPONSOR A HOLE. If you would like to run a contest, simply sponsor the hole, provide a prize and we will organize the rest. Your name or company name will appear on that tee AND green recognizing your support. Autopark KIA Burlington has donated a car for a “Hole In One” contest on hole #9. A tax receipt for your entire sponsorship amount ($250) will be issued.

3. DONATE A PRIZE FOR RAFFLE OR SILENT AUCTION. Nothing is too big or too small. Help us make this year’s prize table even more impressive then last years. Simply contact Lesley and she will arrange to pick-up all gift donations at your convenience.

4. FINANCIALLY DONATE. Cash, credit card or cheque donations (made payable to “The Grace Compagnon Stanley Tribute Fund”) are welcomed in any denomination. Tax receipts for any denomination of $20 or more will be issued.

PLEASE NOTE: CREDIT CARDS AND CHEQUES WILL NOT BE PROCESSED UNTIL THE DAY OF THE TOURNEY. PLEASE FEEL FREE TO POST DATE THESE PAYMENTS.

Our 2008 Tourney was truly an outstanding day! We appreciate that this economy makes supporting charities more difficult but please remember that this slower economy has not slowed the demands placed on The Hospital for Sick Children. We have kept all costs the same as 2008 and are hopeful that you continue to choose Grace’s Fund as your charity of choice in 2009. Let’s make ’09 the year we surpass $100,000 and push well into the six figure club!
Again, my most sincere thanks for supporting my daughters research fund. The patients of The Hospital for Sick Children Brain Tumour Program are with out doubt genuinely grateful.

With warm regards,
Lesley
lcompagnon@cogeco.ca
(905) 635-4617
2126 Baker Dr., Burlington, ON, L7L 0A8

Happy 5th Birthday.

2009-02-05T10:04:00.000-05:00

Happy 5th Birthday Mama's Angel.

Mama misses you baby.
L~

$94,712.92!

2008-11-07T20:31:00.002-05:00

Hi Everyone,

Last night Ian and I attended the "Donor Hall of Honor" reception at Sick Kids. The Donor Hall of Honor is a main hallway in Sick Kids that connects the old building with the new one. Each side of this hallway has plaques with names on them representing individuals, corporations and funds that have financially contributed to Sick Kids at various levels. It takes a minimum of $25,000 to be recognized in this Hall and Grace's fund achieved this honor last year. At last nights reception, we learned that Grace's fund is now at $94,712.92! Her plaque will be moving "up" the wall as a result of this achievement. Ian and I want to make sure that our friends and family who's support of our fundraising efforts in Grace's honor are well aware of our deep and sincere gratitude. Last night was a difficult night. Walking the foyer, visiting the gift shop, passing the cafeteria, seeing other parents and unwell children pace the hallways as a brief reprieve from their hospital rooms, all brought back memories of our time spent at Sick Kids with Grace. I miss those times. They were the most challenging of my life, but some of the most treasured due to being with Grace. I miss her so much it physically hurts. Ian and I thank you so very much for making it possible for us to forever keep a tiny piece of Grace in the place where she fought so hard for her right to live. It's just a tiny plaque, with her name on it, but its so deeply treasured.

Mama misses you baby.
Les

$21,000 raised and counting!

2008-09-08T16:18:00.003-04:00

Due to the phenomenal support of friends and family, $21,000 was raised at the 4th Annual Walk for Grace in support of pediatric brain tumour research at Sick Kids Hospital.

Mama misses you baby.
L~

2 years ago today...

2008-09-06T18:42:00.000-04:00

Mama misses you baby.

Kind words from a stranger...

2008-08-13T21:11:00.002-04:00

Hi Everyone,

Yesterday someone I don't know contacted me to let me know that she and her girlfriends still speak of Grace and live life differently as a result of having followed her storey. It was so nice to receive such a warm note and I responded to her as follows:

Thanks very much for your note. It is not an imposition at all.

Missing Grace is my new normal. There is no thought or action in my daily life that is not touched by the reality that she is no longer physically with me. Although I struggle with my beliefs with regards to how she now exists spiritually, there is not a word spoken, gesture made or action taken without the split second consult as to whether I’m making my angel proud. Grace is still so strongly present in my existence, but as time passes, and her name is mentioned less and those who knew her find a comfortable place to store her memory, I am so very grateful to know that her name is still spoken and her short difficult life continues to influence people other than just me. I’m desperate to “make sense of it all” although I’m pretty sure this is too tall of an order. However, I most defiantly believe Grace was given to me to teach me lessons that I would have other wise not learned. If I had the choice, I would have chosen ignorance, but since that choice was not mine, I will take the lessons and attempt to live a different, more compassionate life.

I miss her so very much and even after almost two years still find it hard to comprehend that she is physically gone forever. I often wonder what she would now be like at almost 5 years old. How long her hair would be, if she would still like Dora, how she would interact with her baby brother. Today, I grasp on to the immense joys that Eli brings into my world and pray constantly for his good health. This is not a journey I could endure again.

Thanks again for your note and more importantly for continuing to speak Grace’s name and choosing to live life by the lessons she taught us in her short life.

I thought I'd share this with everyone because after writing it I felt it summarized as well as I've ever been able to put into words where I'm at right now (and maybe forever). Life is still very difficult and missing Grace has not subsided even a tiny bit. I think many were hopeful (as I was) that Eli's arrival would heal my broken heart if not completely then at least a little bit. But it has not. I think I've figured out why. When you choose to have a second child, your love for the first does not subside to make room to love the second. Your heart seems to grow and its capacity increases allowing your love for the first to remain unchanged as your love for the second instantaneously matches it. Well for me, loosing Grace broke my heart. Having Eli did not heal it. My heart just grew and it's new greater capacity has me missing Grace as I always have yet loving Eli so very much. The two are exclusive of one another as my love for each is. I have not healed, I cope and consciously choose daily to create happiness for I strongly believe everyone is responsible for their own. Eli is so wonderful and as I toured the daycare that I was planning on bringing him to come Oct. when I return to work, I broke down and started to cry. Life is too short, much, much too short. On to plan B...

Mama misses you Baby.
Les

4th Annual Walk for Grace

2008-07-20T10:20:00.002-04:00

Hi Everyone!

The 4th Annual Walk for Grace is scheduled for Sunday Sept. 7th at Bronte Provincial Park, Oakville. The day will run similar to last year with 3 trails available, 31km, 5km and 1km. The 31km trail walk will begin at 8:30am from parking area "F". If you run or bike the 31km trail you can begin this trail later than 8:30am, please chose your start time based on attending closing ceremonies at 3:15pm. The 5km trail walk/run will begin at 1:45pm right after the conclusion of the 1km kids trail walk that begins at 1pm. Deloitte professional services is again sponsoring a Harvey's BBQ this year between 12noon and 4pm. Every participant's $10 registration fee will cover the cost of entering Bronte Provincial Park (usually $13) as well as a Harvey's burger, drink and chips. To get into the park free of charge please so the gate attendent your pledge form. Plege forms can be down loaded from the link on the front page of Grace's website (www.gracestanley.org) We will be running a bake table as well as children's activities (sponsored by Crafty Corner) from 1:15pm on. This years walk is honoring the second anniversary of Grace's death. We are hoping to raise $25,000 for pediatric brain tumour research at The Hospital for Sick Children in Toronto. We have the following sponsorship opportunities still available:
Gold Event Sponsor: $3100 ($100 for every week of Grace's life)
Silver Event Sponsor: $1550 ($50 for every week of Grace's life)
Bronze Event Sponsor: $310 ($10 or every week of Grace's life)
Insurance Sponsor: $300 (covers the cost of liability insurance, a requirement of Bronte Provincial Park, for the day)
Location Sponsor: $200 (covers the cost of our use of Bronte Provincial Park for the day)
Safety Sponsor: $100 (cover the donation to St. John's Ambulance for providing first aid for the day)

I'd like to thank those who have already committed to Sponsorships:
Bayer : Gold
Sheila Lavell & Family : Bronze
BBQ: Deloitte Professional Services
Print : RP Graphics
Children's Activities: Crafty Corner

If you work for or know of a company who would like to sponsor us financially or with a gift donation please contact me at lcompagnon@cogeco.ca. Also please contact me if you are interested in baking for our bake table.

I'm so very appreciative of everyone's support of Grace's Fund. This is important work and less children are suffering the devastating impact of brain tumours as a result of you participation and support of Grace's fundraisers.

Mama misses you baby.
L~

Mama misses you so much...

2008-06-23T22:46:00.002-04:00

I'm missing Grace so much tonight. Thought leaving a quick note would help me "connect" with her in some way...

Mama misses you baby.
L~

First Annual Golf for Grace

2008-06-03T19:43:00.002-04:00

Hi!
I wanted to let everyone know who still follows Grace's Blog that our First Annual Golf for Grace was a huge success. The weather was amazing and over 120 people came out to golf and/or have dinner, remember Grace, and win/bid on incredible items. The most wonderful part of the day was being surrounded by so many wonderful friends who's support I could not survive this journey without! We ended the day raising $15,190 for the Hospital for Sick Children's Brain Tumour Lab in honour of Grace. I've received dozens of Emails from friends who attended saying that they can't wait for next year. It really was an incredible day that was purposeful, fun and I could feel Grace's presence in the warmth of the sun! Our second (and final) fundraiser for 2008 will be our 4th Annual Walk for Grace at Bronte Provincial Park in Oakville. It is scheduled for Sunday Sept. 7 and will be similar to last year in that we will have a 1km kids walk, 5km adult walk/run and 31km walk/run for those who are ambitious. It will be a wonderful family day with arts and crafts for the kids as well as a bake table. I'm going to take a few weeks off (while I plan Eli's baptism) and then I'll begin full steam ahead on the walk end of this month. I look forward to seeing everyone in Sept.

Eli is doing really well. He just turned 7 months old and his newest "thing" is pushing up on his hands and knees and rocking back and forth. Soon he will be crawling! Ian's well and enjoying his new job. George needs a hair cut and Griffin won (we got rid of all our living room furniture).

I hope all is well with everyone!

Mama misses you baby.
Les

Update

2008-04-22T10:36:00.003-04:00

Hi!

Things are going pretty well in the Compagnon Stanley household. Ian is back to work. He landed a great job as Operations Manager for an Oakville hardwood company. It seems to be a step in the right direction on all fronts (more responsibility, closer to home, he likes the industry better etc.) so fingers crossed that it will work out well in the long run. I can't believe that my mat. leave is half over... WOW, how time flies. Eli continues to hit milestones on time and is now a whopping 22lbs at 5 1/2 months old. I started him on cereal a couple of weeks early (I wasn't going to start until he was 6 months old) because I was having a hard time keeping up with his hunger with just nursing him. After 3 mornings of cereal he stopped pooping (5 days ago) and his Ped. advised me yesterday to stop the cereal and give him prunes instead. Well, we are on our second morning of prunes with still "no activity". I know one thing for sure... It's not going to be pretty when things finally get moving! I continue to work on Grace's golf tourney in every free moment. It's heart wrenching and therapeutic at the same time. It helps that friends have been so supportive securing prizes and committing to foursomes. We still have 6 foursomes available to sell out the course so please contact me if you are interested in golfing (lcompagnon@cogeco.ca). The prize table is going to be impressive and it should be a fun, successful day. Ian and I are doing Meagan's Walk on Mother's Day. It is a 5km walk from Ontario Place to the Hospital for Sick Children in support of Paediatric Brain Tumour Research. If you are interested in celebrating Mother's Day in this special way go to www.meaganswalk.com for more info. It will be three years ago this Mother's Day that Grace suffered from her first seizure. I'll never forget how quickly life can be turned upside down.

Mama misses you baby...
L~

Quick Update

2008-03-18T20:51:00.002-04:00

Hi!

It's been a while and just wanted to leave a quick note. We are doing well. Eli is absolutely wonderful. Ian was laid off a couple of weeks ago... very unexpected but far from a tragedy. He's looking for work (in warehouse management) and really enjoying the extra time with Eli. I'm still absolutely loving being home. Eli is happy and bright, I just can't gush enough about him. Grace's absence is unfortunately as painful for me today as it was the day she died. I miss how I know she'd be interacting with her little brother... she'd be "Mama's little helper" without doubt. We enjoyed our first vacation with Eli last week. We went to South Carolina. The sun was hot, the surf was cold and the fried chicken was yummy! Eli had a big week of "firsts" while we were away. He laughed out loud, rolled over as well as swam outside and had his toes in the sand. Well that's it for now. If you'd like to play golf in Grace's tourney (details in last blog) or have a job for my hubby :-), I'd love to hear from you... lcompagnon@cogeco.ca.

Mama misses you baby.
Les

1st Annual Golf for Grace

2008-02-16T15:13:00.003-05:00

Hi Everyone,

Grace's Fund Team has been busy planning our 1st Annual Golf for Grace. We are in the process of uploading registation forms to Grace's website but in the mean time I wanted to inform everyone of the details so that you can start spreading the word and assembling your foresomes. The tournament will be held at Springfield Golf and Country Club in Guelph on Saturday May 24th (this is NOT the long weekend) in the afternoon. It's an easy drive and is located just a few min. north the 401 on Brock Rd. The cost is $500 a foursome (that's $125 each) and includes golf with cart, a BBQ chicken & rib dinner as well as the opportunity to win GREAT prizes. Each player will be issued a tax receipt for $55.00. We are looking for hole sponsorship. To sponsor a hole is $250 and if you would like to run a contest on your hole, just provide the prize and we will do the rest. A tax receipt for $250 will be issued for each hole sponsorship. Our efforts have raised over $55,000 for brain tumour research at The Hospital for Sick Children in Toronto. We are hopful that in 2008 we can exceed $100,000 via this golf tournament and our walk in the fall. This year b.r.a.i.n.child (the organization at the hospital that Grace's Fund belongs to) is funding projects such as "Improving the communication during the palliative care of children with brain tumours" and "Investigation of a novel tumor suppressor gene in human brain tumours" and "Genetic determinants of predisposition to childhood brian tumour initiation and progression" as well as many others. THIS IS IMPORTANT WORK! And we can continue to make a positive impact via our fundraising efforts. Please contact me via Email at lcompagnon@cogeco.ca for a registration form. If you would like to sponsor a hole or would like to solicite a company to sponsor a hole on our behalf, please also Email me. I have a letter that I've written explaining our efforts as well as other applicable info that most companies require.

Thanks in advance for your continued support. We are making a difference!

Mama misses you baby.
Les

Happy Birthday.

2008-02-05T21:29:00.000-05:00

Happy 4th Birthday my sweet angel.

Mama misses you baby.
L~

Grace's 4th Birthday

2008-02-01T19:37:00.000-05:00

Hi Everyone,

Well, Tuesday Grace would have been turning 4. I've begun the downward emotional spiral that I'm assuming may accompany this date forever. I'm overwhelmed with anxiety, crying constantly and just devistated with circumstances. I don't know why I tourture my self constantly trying to guess as to what she would be like at this age if she were still with us on earth. I rarely have an experiance without thinking of how Grace would be fitting into things. Even simple little things like seeing a friend's child's class picture made me contimplate whether she would have sat in the front row or stood in the back row (due to her height) in her kindergarden class photo. Tonight as I mashed potates for dinner, I wondered if she would have liked mashed potatoes. She is just a part of me... everything I do, feel, think. She will always be a part of me. I miss her terribly.

Eli is wonderful... sleeping right now. As soon as you think you have a schedule because he is consistant for 2 or 3 days in a row... things change. I'm not sure how a 7:30pm nap is going to fit into things but he was tired so he's sleeping. At least I think it's a nap... maybe he's down for the night... I don't know. Either way he's wonderful. Big, bright eyed and happy. He's still up 2 or 3 times a night but even when he wakes up at night, he's happy. He's a blessing and I'm not sure where I'd be without him.

We have two fundraisers coming up. A golf tournament on May 24th and our annual walk on Sept. 7. Stay posted for details.

Looks like it was a nap... Eli's up, gotta go.

Mama misses you baby.
L~

2008 so far...

2008-01-20T10:40:00.000-05:00

Hi Everyone,

I hope this note finds everyone well. Where to begin?? Well, most importantly, Derrick Nixon (our friend at Sick Kids who had a donor transplant just before Xmas) is doing well. We continue to pray for him. Eli is doing so very well. I believe I mentioned that he had some G.I. issues at birth and we made a trip to Sick Kids to have them checked out. The doctor there told us that he believed that Eli just had an immature G.I. track and that everything should work it's self out by about 3 months of age. Eli is 11 weeks tomorrow and things in the last week have improved significantly. He is a huge (has already doubled his birth weight) and happy baby. Instead of constantly grunting in pain due to a sore belly, he smiles and giggles and talks gibberish. He's eyes are still blue like his mommies and each family member has claimed a part of him that looks like them (I.e. he has Papa's hands, a birth mark on his leg like Nana etc.). He's sleeping better... usually up twice a night but on three occasions just once. He's such a wonderful joy... I just can't gush enough about him. He loves the company of other babies and has lots of opportunity for this at music, gym and swimming. He enjoys swimming the most. Last week I brought him to his first movie... Charlie Wilson's War... it was O.K. but we are looking more forward to 27 Dresses this week. Last night Ian and I went to the movies and Nana and Papa watched Eli. We saw Juno... I'd highly recommend it. I still struggle with missing Grace daily. I've decided not to anticipate improvement here and just to accept this level of grief as my new normal... my daily reminder to be the best mom to Eli that I possibly can as a result of the lessons Grace taught me. We are moving forward with our two fundraisers this year. A golf tournament in the spring and the walk in the fall. We are hoping to have each of these annually. My Dad and I are ironing out details this week with regards to the golf tournament and will post dates once it can be confirmed with the course (first week of Feb.). The walk date has been secured as Sept. 7 with Bronte Provincial Park. Ian and I enjoy hosting these events because its one of the few ways we feel we can still parent Grace. We appreciate your support. As always, 100% of funds raised goes directly to pediatric brain tumour research at The Hospital for Sick Children in Toronto. Grace's Fund is registered and tax receipts are issued. The golf tournament will be a fun day with good golf, food and we are looking to secure some golf companies to come out and demo some products as well as let our golfers test out anything new. The walk was a wonderful family day for everyone last year and we hope it to be the same this year with hopefully better weather. I joined face book recently and I'm hoping that it will help me promote these events with less physical "leg work" and less costs on printing. George (our dog) is doing well and turning out to be a wonderful pet. He listens and is eager to please unlike Griffin who believes he runs the show (and I'm starting to believe that he does). Griffin was put on an anti-anxiety med (I know it sounds crazy) 3 weeks ago. Our vet is convinced that he was "acting out" (peeing in our living room) as a result of anxiety related to losing Grace... seems as though she may be right since it started the week after she died and he has not peed any where except for his litter pan since being put on the meds. He had an ear hematoma (burst blood vessel in his ear that swelled his ear up to look like a perogie) and needed surgery 3 weeks ago. It went well and he gets his stint off this Thurs. I know Grace is appreciating us taking good care of her kitty. Well I guess that's it. I'll keep you posted on the upcoming fundraisers. If you're on face book, send me a friend request. Enjoy your Sunday.

Mama misses you baby.
Les

Christmas Day

2007-12-29T13:23:00.000-05:00

Hi Everyone,

We'll I continue to blog although I'm not sure if people still read. I only received a couple of storeys of Grace which was disappointing but maybe most who still read never met Grace or maybe few still read... not sure. Either way I enjoyed the storeys that I did receive, thank-you.

Christmas day was more joyful this year than last due to the addition of Eli. He is truly such a blessing in helping me survive. Although at times hard because I occasionally feel like I'm "spent" and he needs more, the joys far out weigh the difficulties and how I often accredit Grace with saving me from materialism and selfishness, Eli saves me from my grief becoming debilitating. Although at less than 2 months he was very much unaware of the significance of the day, Ian and I enjoyed unwrapping his gifts (that we had previously purchased and wrapped), acting surprised and then making a full photo session out of each trial run of each new item.

I hope your holidays were happy and I wish you all good health for 2008.

Our prayers are with our friends the Nixon's as Derrick continues to fight in hospital.

Mama misses you baby.
Les

Cute Storey

2007-12-16T21:11:00.000-05:00

Hi Everyone,

I miss my girl a lot tonight. I find my self constantly thinking of what Grace would be like today if she were still physically with us. I try to develop her personality in my mind to the age that she would be at today and then try to use this to make guesses at how she would be interacting with her new brother or how she would be anticipating Christmas or even if she would have enjoyed the big snow fall that we got today. Would she be bundled up and outside with Dada and George, or content inside with Mama and Eli? With every milestone of Eli's I remember when Grace accomplished that same milestone and then I wonder how she would be reacting to Eli's success today. I continue to miss her so very much and although Eli brings me so much joy the pain of losing Grace fails to subside. I also find that as time passes my fear of forgetting details of Grace is becoming reality. The other day I was speaking about Grace to her Papa... we spoke of Eli sharing her bossy personality when Papa reminded me of the time... just after Grace's second brain surgery... when the neuro surgeon came into our hospital room to examine her. He took his stethoscope and placed it on her head so he could listen to the flow of the fluid surrounding her brain to insure that the surgery had not interrupted this. Grace reached up to where he had placed the stethoscope and removed it from her head with a disgruntle "NO" and then happily placed it on her chest. See Grace had her vitals taken at minimum every 4 hours, 24 hours a day every day she was in hospital. When this was done the nurses would listen to her heart using the stethoscope. When the doctor put it on her head... she was convinced he was doing it wrong and corrected him. We all laughed (including the doctor) and he entertained her by listening to her heart although being a neuro surgeon he was only interested in her brain. If you have a cute storey about Grace I'd love to hear it. Email me at lcompagnon@cogeco.ca.

Mama misses you baby.
L~

YouTube Video

2007-12-04T19:31:00.000-05:00

Hi Everyone,

Below is a link for a YouTube video that Grace is in. All the children in the video have/had brain tumors and the professionals in the video are the scientists, doctors, nurses and social workers who supervised Grace's care. The song in which the slide show is set to was recorded by an artist to raise money for brain tumour research. Grace is wearing a lime green T shirt in her slide.

http://www.youtube.com/watch?v=KUUAFgbasFs

Mama misses you baby.
Les

Grace's Plaque

2007-11-28T16:36:00.000-05:00

Hi Everyone,

Kuku (Ian's mom), Nana, Papa, Ian, Eli and I went to Sick Kids Hospital yesterday afternoon to meet with our fund manager and take pictures of Grace's Plaque being put up in the Donor Hall of Honor. Her plaque is currently in the section recognizing those who have contributed up to $50,000 but it will move in the spring since shortly after the cut for this years calculation and once all of the funds from the walk were submitted, her fund jumped to $55,009.68. WOW! Our fund manager told us that it takes many families 5 to 10 years to reach these levels of fundraising that we accomplished in under 2 years. I told her that we were so fortunate to have a wonderful network of support, friends and family who are aware of how important it is to Ian and I to continue to "parent" Grace in her physical absence via fundraising for the hospital and volunteering via BrianChild. I want to make sure each and everyone of you are aware of how much it means to Ian and I to have your support. It is only through your generous contributions that we have been granted the opportunity for our baby Grace to be forever remembered via her plaque at the hospital where she courageously battled for her life for 11 months. Thank you so very much. We are forever indebted.

Mama misses you baby.
L~

Update

2007-11-15T12:47:00.001-05:00

Hi Everyone,

Just a very quick note to let you all know that we are doing well. Eli, like his big sister, loves to eat but has a sensitive tummy so I'm on a restricted diet to accommodate breast feeding him. It's a bit of a challenge but it helps him sleep better which helps Dada and I sleep better and also helps my extra weight come off a bit quicker. Even with my change in diet his tummy causes him to be restless and he does not settle for more than 90min at a time. I'm sure with time things will settle but for now it's a sleepy yet very grateful Mama and Dada. He's starting to stay awake during the day more now (he never has had a problem staying awake at night :-)) and his little personality is starting to show. He's bossy (again like Grace) never wasting an opportunity to let me know when things aren't exactly the way he likes them but such a snugly little bundle and loves to lay on your chest under a warm blanket for as long as you can stay still. He's truly a blessing and we never loss sight of this even at 3am when he's fed 3 times in the last 45min. Good thing is that he is gaining a ton of weight. From his 4 day old apt. to his 14 day old apt. he gained a pound and a half. The doc was shocked... said he needs to see newborns put on 20grams a day to not be concerned and Eli has put on 52grams a day. He's going to be a big boy I'm sure!

I mentioned in a previous blog that the hospital put up Grace's plaque without notifying us and I was disappointed because I wanted to be there for this milestone. Well we came to discover they did put up the plaque but it was engraved wrong (they put my name on it instead of Grace's) so we contacted them and they have ordered a new corrected plaque. As a result Ian and I will be able to go down on the day that they are going to replace the incorrect plaque with the correct plaque. Seems like everything here worked its self out.

I'm missing Grace as I did prior to Eli's arrival if not more. Eli has brought new joy in to my world but new sorrow in being constantly reminded of what Grace was doing at his age as well as acknowledging her absence during every special moment. I will die with a broken heart for I've come to acknowledge it's repair is too tall of an order for anyone or thing to take on. However, I have promised my self to share the world with Eli, but never to share my broken heart... he deserves more and I will give him more.

Have to run... Eli's calling.

Mama misses you baby.
Les

Welcome Eli!

2007-11-02T16:19:00.000-04:00

Hi Everyone,

Eli Compagnon Stanley arrived on Monday Oct. 29 at 12noon. He weighed 8 pounds, 13 1/2 ounces and is 21 1/4 inches long.

We are home, doing well, wishing Grace was here to share in the joy her little brother has brought to our lives.

Mama misses you baby,
Les

Missing Grace, Anticipating Eli

2007-10-26T10:35:00.000-04:00

It's hard to believe that I've been off work for 3 weeks now. Time has passed very quickly. My "To Do" list is slowly dwindling as Ian and I mark off completed projects however the one item that I marked as most urgent has been completely avoided. Prior to Grace being hospitalized in Oct. 2005, I was diligent at keeping her photo albums up to date. Once in the hospital I continued to take many pictures but never had the opportunity to print them. At this point they have all been downloaded on to my computer, burnt on to disks and re burnt onto backup disks just to be safe, but very few have been printed. I wanted to get her albums updated during this time of being at home prior to Eli's arrival but I just can't bring myself to do it. Just the thought of printing her last photo devastates me, exhausts me, makes me physically ill. How am I going to find the strength to do this? It's impossible for me to get my head around. It's in the same space as changing her room. Grace's room is still "as is" from when she died. We made our spare room Eli's nursery. Things have been added to Grace's room; a coconut shaped pink candle from our trip to Jamaica, a doll purchased from a SickKids fundraising event, a sea shell from our trip to North Carolina as well as all of the fundraising posters and newspaper articles generated as a result of our "Grace Compagnon Stanley Tribute Fund" raising efforts. From everything I've read, those who are "experts" in grief suggest tasks such as these (organizing belongings of the person who has died, changing their bedroom, etc.) should be done sooner as appose to later... but I just can't. I just can't box up her things, paint her room, print off her last picture. This is still her home and I can still smell her when I enter her room. How can I part with this when I have so little of her left? I just can't.

This morning I followed up with SickKids with regards to Grace's name being added to the Donor Hall of Honor due to our fundraising efforts exceeding $25,000. Since late August when my fund manager contacted me to inform Ian and I that Grace had earned her plaque and that the addition of her name would take place during a ceremony in early November, Ian and I have been looking forward to attending and even made back up plans that if we could not attend due to the ceremony's close proximity to Eli's arrival that Nana and Papa would attend in our absence. Well today when I spoke to our fund manager she informed me that they decided not to have a ceremony and the plaques had already been put up. This is so disappointing. Again with having so few opportunities to continue to parent Grace, it's just unfair for this to be taken from us. As well intentioned as so many Sick Kids employees are, until one has lost a child, it's impossible for them to achieve the level of sensitivity bereaved parents are desperate for. But what's done is done. Ian and I will head to SickKids in the next few days to see and take a picture of our angels plaque.

Yesterday I was at my OB. Seems as though I've entered the early stages of having Eli. If I do not have him this weekend, she wants to see me on Monday. She's considering inducing me a day early to ensure that I have him under controlled circumstances. My labor and delivery with Grace was very quick and if Eli is like Grace, she feels induction would be a safer option. Either way, we should be with baby within the week. We are so looking forward to his arrival!I'll be sure to post and let you know when Eli's here.

Mama misses you baby.
L~

Living for Today.

2007-10-10T10:45:00.000-04:00

Hi Everyone,

Since last blogging life has been pretty routine for Ian and I. I have begun my mat. leave with Eli due in 3 short weeks. Ian has wrapped up his final deck job (Ian has a small decking business that he works evenings and weekends during summer months) and I'm very much enjoying having him home more in the last week then he has probably been all summer. For Thanksgiving, Nana and Papa went to Grand Valley to visit with my brother and with Ian finishing up lose ends with regards to his last deck job we did not make any plans. However, as always, the DePaz's insisted we join them and we enjoyed a wonderful turkey dinner with Al, Jen, the kids, many members of Jen's family as well as a high school friend that we hadn't seen in a while, Neil. It was a really nice evening. Thanksgiving Monday during the day was Nikki (Grace's best friend) and her little sister Zenaide's birthday party at Springridge Farm. Two years ago Nikki's birthday was also held here and this was the last event that Ian, Grace and I attended prior to receiving the devastating news that Grace's tumour was malignant and not benign as diagnosed the previous May. I remember that day at Springridge so clearly. Grace was having difficulty walking so her Daddy carried her everywhere. I remember Grace not wanting to ride the pony but enjoying her daddy squeezing his way into the chicken coop with her in his arms so that she could collect an egg like all the other kids. I remember Ian and I sadly acknowledging that this would be our last family outing for a while however looking forward to her upcoming MRI on the Wednesday believing that this was the first step in Grace regaining full control over the movement of her right leg which had been deteriorating due to what the doctor's believed was the benign tumour irritating the part of her brain responsible for gross motor skills of this leg. However, instead of that MRI being the first of many steps in the "routine" removal of a benign tumour, it ended up detecting that Grace's tumour was not benign as original scans had suggested but malignant and now over 10times the size it was in May...our world began to crumble. Grace was immediately admitted to hospital, surgery took place within 36 hours and aggressive chemo began. I do look back at our time with Grace in the hospital very fondly. Even with the countless medical procedures, surgeries and at times unbearable illness that Grace had to endure, the memories of bubble baths, building tents in her hospital bed, riding the elevator, arts and crafts, so many stickers and so many hugs, kisses and laughter dominate my memory. But I do remember looking forward to our time in the hospital ending and getting Grace home in hopes of living a more normal life. Little did I know that I was wishing to begin the end of my time with Grace and not the beginning of normalcy. So once again I was changed by this experience, taught by Grace another lesson. It taught me to never wish for tomorrow if today is OK. As of late, many people are asking me if I'm tired of being pregnant and ready for Eli to be here. As much as I'm looking forward to Eli's arrival, I'm OK with today. Wishing for tomorrow can bring a whole can of worms that may make you look back at yesterday with envy. I think it's easy to fall into this way of always living for tomorrow believing it will be better than today. What if tomorrow brings something unexpected and devastating or even worse... tomorrow just doesn't happen? Mama once again thanks Grace for the lessons she taught as I live for today.

Mama misses you baby.
Les

$25,000 & Counting

2007-09-27T15:37:00.001-04:00

Hi Everyone,

I'd like to once again thank all of you who supported The Third Annual Walk for Grace. Cheques have continued to be received over the last two and a half weeks bringing the total earnings of The Walk to over $25,000 not including on line donations. It's hard to explain to those of you who have not lost a child how much this means to Ian and I. When Grace died, we struggled to find ways to continue to parent her even in her physical absence. Ways to ensure that the impact she would have on the world would reach far beyond the short two and a half years that we were blessed to physically have her here on Earth. Ways to keep people talking about her, remembering her and living differently as a result of the fate she was dealt and the lessons that she was burdened to teach as a result of this fate. By raising money for pediatric brain tumour research Ian and I feel that we are accomplishing some of this. It is so very important to us. Thank you for helping us do so. We have been blessed with friends and family committed to lifting us up when we struggle to stand on our own. Grace's research fund now sits at over $53,000! She will be forever remembered at The Hospital for Sick Children via a plaque baring her name in The Donor Hall of Honor. Again, thank-you.

Mama misses you,
Lesley

Missing Grace...

2007-09-18T10:45:00.000-04:00

Today I miss Grace so very much it's debilitating. 12 months, 12 days since her death, it's not an anniversary or day of significance, so why today?? As I desperately flip through my books on how to "constructively" grieve in hopes alleviating my pain even slightly, I am reminded that many live with devastating loss and each has decisions to make with regards to how to live with it and I am responsible for determining how I will live with mine. I truly feel that I have many responsibilities in this whole process. I'm aware that my pain hurts those who love me so I often (subconsciously even) curb my pain to protect those who will be hurt by it. I don't want to be submersed in bitterness for doing so I feel would be an injustice to Grace for it would draw more attention to her tragic death then it would to her short yet wonderful life. As Eli's arrival quickly approaches and I prepare to bring him home, I struggle to balance my past and future so that he will be raised with as much love and enthusiasm as was Grace. I feel indebted to those who worked feverishly in attempts to save Grace's life and would like to aid their efforts to deliver greater success in the future while desperately trying to inject a level of "purpose" in Grace's death via fundraising and new research discoveries. I heard Terry Fox's mother on T.V. the other night and she said "He had to die so that so many others could live". I guess this desperation to find logic or purpose in the death of a child is shared. So... on a day like today when I am struggling with my reality, heartbroken with my circumstance, jealous of the reality of others, how do I survive? I guess acceptance that I will never again experience a world with unbridled happiness that comes to me effortlessly. I will grieve the loss of Grace with each breath that I take, constantly aware of the void that has been left but at the same time aware that I am responsible for my own happiness, no one else, so now that my new reality does not allow it to flow over me effortlessly, I must seek it out and artificially inject it into my world in hopes that as time passes this happiness will be available to me with less effort. I once read that the only thing we really know about Heaven is the departure, yet simultaneously this departure is the only part of Hell we need to know. It kind of feels like Hell today.

Mama misses you baby.
L~

A Huge Success!

2007-09-12T10:00:00.000-04:00

Hi Everyone,

The Third Annual Walk for Grace was a HUGE success especially given the poor weather. Over 120 walkers participated raising $21, 600 and counting. We are hoping to be over $22,000 by weeks end when we submit this funding to Sick Kids on Grace's behalf. So if you have not yet sent your pledge, please do so via an on-line donation (make sure you make it in memory of Grace Stanley and ask for it to be placed in The Grace Compagnon Stanley Tribute Fund) or mail me a cheque payable to The Grace Compagnon Stanley Tribute Fund to 2126 Baker Drive, Burlington, L7L 0A8. The walking trails were beautiful, the kids loved the Gymboree activities and the Harvey's BBQ was the taste of summer that we needed to be distracted from the poor fall weather outside of the picnic shelter. Ian and I are so grateful to those who helped execute this day but also to all of those who came out in the poor weather to insure it's success. Thank you so very much! It was a very difficult day wishing that it was not our reality to be hosting a memorial walk for our sweet daughter, however we must now "play the cards we've been dealt" and work positively in Grace's honour. Thank you for remembering and honoring our sweet baby girl.

This will be an annual event and we look forward to the sunshine next year.

Take good care.

Mama misses you baby.
Les

We are still on!

2007-09-09T07:03:00.000-04:00

Hi Everyone,

As you are aware, today is the Third Annual Walk for Grace and it's raining!! Just a quick note to let you know we are still on. We have a large sheltered area that we will be able to run everything (children's activities etc.) out of other than the actual Walks so bring your rain gear for when you will be hitting the trails. As many of you may be aware this is also the weekend for the breast cancer walk. If they can walk in the rain for breast cancer, we can for brain cancer! Hoping to still see everyone out!

Mama misses you baby...
Lesley

P.S. If you are unable to walk due to the weather, please still drop off your pledges to the Breckon Picnic Shelter today prior to 2pm.

365 days...

2007-09-06T21:47:00.000-04:00

Hi Everyone,

One year since Grace's death. Unbelievable really. It feels like it's been a life time since I've held Grace yet the ache of my heart is as intense today as the day that she died. This is a wound that time will not heal. Some asked us what our plan was for today. Ian always responded "to survive it". As Ian and I got ready for bed, he hugged me and said "looks like we did it". We did, we survived. Again I am reminded that I have already lived my worse day; Sept. 6, 2006 when I held Grace as she gasped her final breath at 10:20am. No day will ever compare and Ian and I continue to survive in our new reality.

We hope to see you all on Sunday.

Mama misses you baby.
L~

Derrick Nixon

2007-08-30T08:46:00.000-04:00

Hello Friends,

Grace's neighbor on the 8th floor at Sick Kids during bone marrow transplant in March of 2006 was a 17 year old boy named Derrick Nixon. Derrick has Lymphoma and has recently relapsed for the second time. Grace and Derrick both had autologous (using their own stem cells, Grace's from her stored umbilical cord and Derricks from a harvest done from his own marrow early in his treatment protocol) bone marrow transplants. Due to Derrick relapsing post this autologous bone marrow transplant, he now needs another bone marrow transplant, this time using a donors stem cells. His immediate family was tested (mother, father, brother and sister) without success. He is now reliant on finding an unrelated match. If he does not find an unrelated match to facilitate this second transplant, doctors at Sick Kids have estimated that he may only be able to survive his disease for another 6 to 12 months. DERRICK NEEDS YOUR HELP!

Yvonne (Derrick's mom) writes:

Myself, Craig, Taylor and Chelsea are not a match for Derrick's bone marrow transplant. I'm asking for your help please. I'm looking for a suitable donor for Derrick. If you can please go online at www.blood.ca/registry for the unrelated bone marrow donor registry and complete an application. You will receive a phone call within 24 hours with information regarding blood testing and closest location nearest to you.

If you are able, please pass this message on to your family, friends, co-workers and neighbours.

Thanking everyone for their support and kindness during this time.

Love from the Nixon Family

All that is required of each of you is to go on line and fill out a brief application. You will then get a phone call letting you know where you can go to have a simple blood test done. You will then be added to the registry. Each time someone like Derrick is in need of bone marrow an extensive search is done comparing the blood tests on file of those who are members of the registry to the blood work of the patient in need. If you were to be a match for someone in need a simple day surgery would be required of you, no incisions, only needle marks from the extraction of a bone marrow sample that will be used for the patient in need. From those that I experienced during my time at the hospital, the extraction was usually taken from the hip area and the discomfort involved was usually controlled with just Tylenol... it is such a small sacrifice to save a life. PLEASE use the link above in Yvonne's Email to register today. You could save a life!

Mama misses you baby.
Les

P.S. Ian and I are going out of town for a few days spanning the first anniversary of Grace's death. We look forward to seeing you all at The Walk. In my absence my father Hal will be taking care of last minuet Walk details. He can be reached at hal.compagnon@woodwyant.com

Scotia Bank to Match Community Donations!

2007-08-20T09:50:00.000-04:00

Hi Everyone,

Things continue to move forward with regards to The Third Annual Walk for Grace. I've been told that The Burlington Post ran an article on the front page on Sunday Sept. 19th in anticipation of The Walk. I did not receive my paper yet so I have not had the opportunity to read it. I hope it generates awareness with regards to pediatric brain tumours and interest in The Walk so that we hit our goal of 100 - 150 walkers.

A friend of mine works for Scotia Bank and they have a donation matching program. For every dollar donation generated in the community they will match it up to $5000. That means every dollar of pledges that each of you generates actually translates into $2.00. Good luck with securing your pledges and just a reminder that all donations over $20 will be issued a tax receipt and there will be HBC gifts for those of you generating the most pledges.

Ian and I are planning a week away from Aug. 31st to Sept. 7th. This time for us is very conflicted with confirming details for Grace's Walk, anticipating the first anniversary of her death as well as preparing for Eli's arrival. We are hoping this time away helps us slow down (Ian especially) and refocus on simple things that often get lost in the ciaos of life. It's so difficult for us not to dream of how wonderful our worlds would be if only Grace were still with us. Whether she would understand that a baby brother were on his way. Where she would be developmentally... would she be excited to return to nursery school? Would she now be riding the two wheel bike with training wheels that our neighbor had given us in anticipation of her full recovery? Would she want to be in gymnastics or swimming? I'm sure she would have definite ideas on how she would like to spend her time given how her personality was already so strong when she died. Not a minute passes without reflecting on how life would be with Grace still by my side. I miss her terribly.

Yesterday I attended Dawson's forth birthday. This is his second birthday since completing treatment and with every one that passes it is more promising that he will remain well. Dawson and Grace had similar brain tumours and were on the same treatment protocol. It is incredible to see him thrive given what he has endured in his short life. He is an inspiration.

I hope you are all doing well and having good luck raising money and awareness for pediatric brain tumour research via Grace's Walk. We look forward to seeing you Sept. 9th.

Mama misses you baby.
L~

My car was found!

2007-08-11T10:49:00.000-04:00

Hi Everyone,

I hope this note finds you all well. The police "recovered" my car last week and it is what they describe as being in "excellent" shape. That basically means that there was no frame damage... all aesthetic... so my car is at the body shop being fixed and I should have it back at some point late next week. I'm very happy to have it back. It's a great little car, with tons of memories, not to mention it's paid for :-). All of the printing for Grace's Walk was still in the car. They just took some of my work stuff but nothing that isn't easy to replace. We ended up with the best of a bad situation which is always nice.

Ian continues to be busy with work and deck building. I'm busy with work and house stuff taking a stab at no cleaning lady in anticipation of being on a much tighter budget once I'm off work. My mom's going to repair a couple of pieces of Grace's crib linen so we can use it for Eli. I may start working on the nursery soon. All is well with the pregnancy. I packed on 8 pounds last month and when my OB broke into her "it's most likely a lot of water retention" speech I told her not to bother since my weight is so far down on the list of my priorities that I could care less if I put on 18 pounds last month. She told me that there was no need for me to be a "sacrificial lamb" in order to bare this baby. Which is true but really, what ever it takes... I'm game.

I continue to read in order to manage my existence without Grace. I'm reading an autobiography by Elizabeth Edwards (John Edwards' - Vice Presidential Candidate in last U.S. election- wife). She's probably best known for her battle with breast cancer but she is also surviving the death of her oldest son, Wade, who died in a car accident at age 17. After Wade died she and John decided to to have more children when she was 48 and then again at 50. Not to replace Wade but in hopes of injecting some joy back into there world. They still actively parent Wade's memory and her heart still aches 10 years post Wades death, but her younger children have provided some relief by injecting joy back into her daily routine. I guess this is also my hope, some relief in the form of simple joys. There are theories out there with regards to "Replacement Child Syndrome" (effecting children who are born after the death of an older sibling) and the difficulties involved in managing it but when having to choose between managing this or living a life without a child to parent on a daily basis, I'll choose the Replacement Child Syndrome. I do plan for Eli to know Grace well. It actually amazes me that Grace's best friend Nicky still speaks of her although she was just shy of three when Grace died. I was minding Nicky last week and she was sitting on our bed watching a T.V. show while I cleaned my en suite. She got down off the bed and came over when I started cleaning the tub and said "remember when Grace and I took a tub together in that tub?" Of course I did and I'm so grateful that she did as well. Seems likes Grace was here for such a short amount of time that there was such limited opportunity for her to make her mark in hopes of being remembered. I know Ian and I will live with her in our hearts forever, but it helps to know that she lives in the hearts of others as well.

Mama misses you baby.
Lesley

Pledge forms for Grace's Walk

2007-08-04T13:49:00.000-04:00

Hi Everyone,

I hope this note finds you all well. Ian is keeping busy with work and deck building. I'm doing my best to keep the emotions in check for Eli's well being and we have been full speed ahead organizing Grace's Walk. Unfortunately sometime Thurs. night, my car was stolen (out of our driveway) and there have been no traces of it since. I'm definitely bummed that I've lost the car that Ian and I drove Baby Grace home from the hospital in. The back right head rest remained indented from where her baby seat was anchored and I used to like to look back at her spot and think about our drives to Springridge Farms. I was hoping to drive that car for many years to come and I'm hopeful that it will still be found although Ian feels that it may be pretty beat up and it being found may not be a good thing if it is. Unfortunately, we also lost all of the printing for Grace's Walk as well. It was in a box in the back seat of the car since I had just started to put up posters and distribute pledge forms. I'm trying to get everything reprinted ASAP but the posters will be delayed being put up and I'm going to rely more on each of you to print your own pledge form off the web site since I will not have as many available for distribution as originally hoped. You can find the link to print off the pledge form under the fundraising tab of Grace's site (www.gracestanley.org). I'm still very hopeful Grace's walk will still be a big success. Please solicit as many pledges as possible. Every dollar counts!

Mama misses you baby.
L~

Eli Compagnon Stanley

2007-07-22T09:20:00.000-04:00

Hi Everyone,

Ian and I wanted to share with you all that Grace will soon have a baby brother. We are due Oct. 31st and after many months of agonizing testing and counseling we are hopeful that he will be healthy. Although nothing is conclusive because we choose not to do any invasive tests (due to the risk of miscarriage) and because Grace's cancer was so rare it was hard for our medical team to even know what to test us for, we have been told that our risk of having a unwell baby would only be 1 percent higher than average population risk making it 4 to 5 percent. We know that Grace can never be replaced. We are hopeful that our son (we've named him Eli) will bring some relief to our aching hearts by once again injecting the joy of actively parenting into our worlds. I still struggle daily with having lost Grace and hope that her spirit dances free of the burdens of her unwell body.

Mama misses you baby,
Lesley

P.S. Grace's website (www.gracestanley.org) should be uploaded with all walk information (including pledge forms that can be downloaded and printed) by the end of the week. We look forward to your participation in The 3rd Annual Walk for Grace on Sept. 9 honouring the first anniversary of Grace earning her angel wings.

Evan

2007-06-30T11:22:00.000-04:00

Hi Everyone,

Another hard week... On Feb. 28 I blogged soliciting for donations for a fundraiser that was taking place on April 14 to raise money for a little boy named Evan whom Grace was in bone marrow transplant with. His graft was failing and his family was going to have to endure another long stay in hospital while he received another transplant and we were raising money to help off set the costs involved with this second long stay. Quiet unexpectedly Evan died on Tues. morning. He died at home, peacefully. Ian and I are attending his funeral today. Please pray for his family to find the strength to navigate through life without Evan physically by there side. Thank you again to everyone who donated items for this fundraiser as well as for your prayers.

Mama misses you baby.
Lesley

Update: 3rd Annual Walk for Grace & us

2007-06-02T10:11:00.000-04:00

Hi Everyone,

My friend Murray has this saying that I know I'm going to mess up, but as soon as I opened the blog to write I thought of him... so I'm going to use it but I apologize in advance if I get it wrong. My blog has become "like a bus, one doesn't come forever, and then a bunch come at once":-).

I wanted to to let everyone know that the walk is coming along quite nicely. This will truly be a very special event marking the first anniversary of Grace's death. Bronte Creek Provincial Park has accepted our application to hold the walk with-in the park this year. As a result the walk will definitely be on Sunday September 9th (mark your calenders), at Bronte Creek Provincial Park, Breckon Picnic Shelter. The walk will take place rain or shine on this date but lets hope for shine. The 31km walk will begin at 8am but for those of us who are not athletes, the 1km children's walk will be at 1pm and the 5km adult walk (although you can bring your children on this one as well in a stroller or wagon) will be at 1:45pm. The 1km walk should only take about 1/2 hour and the 5km walk should take about 1hr. We are hoping to arrange children's activities with supervision (maybe through Gymboree??) at the picnic shelter for the older kids who are comfortable staying behind as their parents walk. The BBQ will run between 12noon and 4pm. For those who chose to walk, a $10 walk registration fee will get your vehicle into the park with as many occupants as you can fit (usually a $13 charge) as well as BBQ lunch. Lunch tickets will be available for non participants at a nominal fee. We are waiting on a confirmation as to whether or not Harvey's is able to do the BBQ at a reasonable cost to save us from organizing all the food donations, but this is 50/50 at this point so I'll keep you posted. Saint John's ambulance will be on site for any first aid concerns.

We are currently looking for corporate sponsorship in the following areas:

"Name" sponsors: $100 for each of the 31 km's = $3100 donation. The corporation will have there logo on all printed materials, banners and in all media sources. Right now the Brainchild and Sickkids newsletters will be covering the event as well as the Oakville Beaver and Burlington Post.

Health and Safety sponsor: $150 to cover the cost of Saint John's ambulance.

Location sponsor: $200 to cover the cost of Bronte Provincial Park.

Print sponsor: $500 to cover the cost of all printing... would also accept service over fee so if you work for "Staples" and they can do all of our printing (what we estimate to be approx. $500 worth) we would be more then happy to accept this service instead of the donation.

BBQ sponsor: $500 to cover the cost of food.

Insurance sponsor: $300 to cover the cost of insurance.

If your company, community group or family would like to sponsor our walk in any of the above capacities it would be greatly appreciated. Please Email me at lcompagnon@cogeco.ca.

By securing the above sponsorships and running the event on 100% volunteers we will guarantee that 100% of pledge money collected will go directly to pediatric brain tumour research at the Hospital for Sick Children in Toronto. Brain Tumours are the #1 cause of cancerous death for children and young adults under the age of 20.

Tax receipts will be given for any donation over $20.

Please help us network for sponsors!

Mama misses you baby.
L~

P.S. Personally, Ian and I have been OK. Ian is enjoying his woodworking course and I've been finding organizing the walk a positive outlet. Ian and I just finished our enquiry of Grace's medical records last week (more specifically how her original diagnoses was incorrect... May 2005 diagnosed with benign non-life threatening tumour followed by correct diagnoses of malignant tumour in Oct. 2005). This was emotionally very difficult but something we had to take the time to do. In retrospect maybe we shouldn't have done it so close to Mother's Day because I've been finding things more difficult than usual since then and am questioning whether this is the result of these events happening on top of one another. Then again, maybe not... maybe things are just more difficult right now for no logical reason. The inquiry concluded that all test were done correctly (based on more then just documentation but other factors as well) and that Grace's tumour had mutated from benign to malignant. Our medical team has only seen this happen twice in the past but in both of these cases it was believed to be the result of radiation which Grace did not have. So Grace's circumstance remain to be rare and mind boggling for us as well as her medical team. However, we believe we made the best decisions possible with the information that was presented to us... I guess this should be comforting... shouldn't it?? I'm waiting anxiously for my feeling of "comfort".....

Mama misses you baby.
Les

3rd Annual Walk for Grace

2007-05-18T09:53:00.000-04:00

Hi Everyone,

It's been so long since my last blog that I'm not even sure if people still log on. I find my self waiting for a day when my heart isn't so "heavy" to write but days turn into weeks that seems to have turned into over a month and my heart is still so heavy. I decided just to "bite the bullet" and blog this morning. Our vacation was restful. Work is good. Ian is busy as usual. Mother's Day weekend was devastating. Ian had all my blogs "published" into a book for me so we'll always have Grace's storey close. My dad and I have started the "leg work" for the 3rd Annual Walk for Grace. The past two years this event has been very small. First year our friend Brett initiated and did the walk. Last year Brett, Ian, my dad and my self did the walk and in 2007 we are hoping it will expand to a much larger event. It will be held on the weekend marking the first anniversary of Grace's death. It will be on Sunday, Sept. 9. There will be 3 trail options available. The first will be a 31km trail (similar to what has been done the past two years) representing 1km for every month of Grace's life. But then a more realistic 5km trail will be available for adults and a 1km children's trail. We are hoping that both the 5km and 1km trail will be within Bronte Creek Provincial Park. We have submitted an application for the Park to allow us to use their property on this day. With us hoping for it to be a larger event, there is much more paperwork then we've ever experienced in the past. The walk will be followed by a BBQ. We are currently soliciting corporate sponsors to cover the cost of printing (of pledge forms), park costs, insurance as well as food donations (or $ to cover food) for the BBQ. If you have any connections that my be beneficial please contact me at lcompagnon@cogeco.ca. Your help would be much appreciated. Please save the date... Sunday Sept. 9 and start talking to your friends to join the walk, the more the merrier. Again, we are hoping to run this event on 100% donations and volunteer support so this means 100% of every dollar donated will go to brain tumour research at the hospital for Sick Children in honour of the first anniversary of Grace's death. I've heard that many corporations have a matching program for employee's who raise funds for a charity so if you raise $100 your company will in turn donate $100. This may be something to look into. An easy way to double donations!

I hope your all keeping well.

Mama misses you baby.
Les

Fashion Tea

2007-04-11T14:23:00.000-04:00

Hi Everyone,

Just a quick note to let you know that the Fashion Tea that was held by the Optimist Club of Brampton was very successful. The afternoon raised $1,300 and the Club has applied for a matching grant so we may be making a deposit of $2,600 to Grace's Fund in the near future.

Life has been OK but exhausting lately. I've been working and unwell more often then well. Ian's been away with work and then working longer than normal hours when home. We both miss Grace terribly and we are doing our best to manage each day. We have booked a week in the sun later this month and are hoping this will help our spirits a bit.

This Sat. (April 14) is the fundraising dance for Evan Glen (little boy with Sever Combined Immune Deficiency). The fundraiser is taking place at the St. Lawrence Parish Hall, 475 Mary St. N in Hamilton. Hope to see you there!

Mama misses you baby.
L~

We've reached $25,000!

2007-03-11T05:08:00.000-04:00

Hi Everyone,

The Grace Compagnon Stanley Tribute Fund has reached $25,000 and will be receiving a plaque in recognition of this accomplishment. The plaque will have Grace's name on it and will be placed on a wall in the lobby of The Hospital for Sick Children dedicated to recognizing all those who have reached similar fundraising goals. The ceremony will take place in November and we are proud that Grace will be permanently remembered in the building where she so courageously fought her battle against brain cancer. We are committed to continue to raise money for brain cancer research and as we do, Grace's plaque will be moved up the wall to indicate further fundraising success. A good friend who lives in England recently contacted me to let me know he will coming to Toronto to run the Toronto Marathon to raise money for Grace's fund. I will keep you posted on the details of this fundraiser as information comes available. We are always open to supporting any fundraisers in honour of Grace and/or in support of brain tumour research in any way we can. Please, if you have an idea to raise money and would like our support, contact me at lcompagnon@cogeco.ca.

Thank you to those who have contacted me with donations for Evan's (little boy with Severe Combined Immune Deficiency Syndrome) fundraiser. I'm sure it will be a great success. Last weekend Ian and I, my parents and our good friends Jen and Alex attended the 4th annual Magic of Metals Bowling Fundraiser. Last year this event was held in honour of Grace. This year it was held to raise money to purchase a specially equipped van for patients with ALS. It was a very successful evening raising over $13,000 towards the cause.

Today was Ian's Birthday. We had puppy class in the morning. George did very well on the agility course. His favorite part was the tunnel. He's been a wonderful addition to our home although if my hardwood floors could talk, I'm sure they would have a different story. This afternoon/evening we had plans for Ian's birthday that were canceled in lu of naps and ordering in Chinese. Ian was extra sad today missing Grace on his Bday. Last year at this time Grace learned to blow candles out for the first time and used Ian's Bday cake as her test grounds. It was good that only family was eating the cake because as anyone who has seen young kids blow out candles, it is not always as dry as it should be and Grace was no exception. We miss her terribly.

I've been fighting a miserable cold for a bit now and it is not positively effecting my already chronic insomnia but I'll get better with time I'm sure. I hope this note finds you all well.

Again, thank you so much for your support of the Grace Compagnon Stanley Tribute Fund. And although our initial goal of $25,000 has been achieved, our battle against brain cancer is far from over. It is through fundraising and research that the lives of other children with this unforgiving disease will be saved. For those of you who remember, Dawson, a little boy who was on the same treatment protocol as Grace but who had a different type of brain cancer recently had another set of clear tests. Congratulations Dawson!

Mama misses you baby,
Les

MarketPlace and Megan's Gala

2007-02-28T16:50:00.000-05:00

Hi Everyone,

I was waiting for final numbers to report on our success with regards to our MarketPlace fundraiser in honour of Grace's 3rd Birthday. I'm still waiting for 2 vendors to "cash out" but it looks as though we raised about $5000 for pediatric brain tumour research at the Hospital for Sick Kids in Toronto. Not bad for a 3 hour event!! We will have word shortly but I'm confident that we will reach our $25,000 goal by the first anniversary of Grace's death if we have not already done so. We have two other fundraisers currently in the works for Grace's fund that are being put on by friends. The first is called "Spring Fashion Tea". It is an old fashioned Sunday tea with a clothing and jewelry show. It is being hosted by the Optimist Club of Brampton and is being held at the Bramalea Lions Hall on Sunday March 25th between 1 and 4pm. Tickets are $12 per person or 2 for $20. Call 905-332-7798 for tickets. I'd like to thank my friend Denise for promoting the Grace Compagnon Stanley Tribute Fund to the Optimist Club of Brampton and I'm extremely grateful that they have chosen to direct all proceeds from this event to Grace's fund. Please join us this afternoon if you can, my friend Jen and I will both be modeling (should be entertaining). The second is a poker night that is going to be hosted by our friends Dave and Alice. As details become available for this event I will keep you posted. I have currently directed my fundraising energy to helping a family who we lived for months with at Sick Kids. Two year old Evan Glen has Severe Combined Immune Deficiency. We became friends with his family because he and Grace under went bone marrow transplants at the same time. I found out last week that Evan's bone marrow transplant is failing (his host marrow is taking over the donor marrow) and his medical team is expecting to have to readmit him in April for a second bone marrow transplant. This will mean another long stay in Toronto for his family (approx. 8 months) which is very expensive. Evan's aunt is hosting a fundraising dance to help alleviate some of this cost for the family on Saturday April 14 at the St. Lawrence Parish Hall (475 Mary St. N) in Hamilton. I am currently soliciting for and accepting any donations for a silent auction table. Please Email me if you have anything you can contribute at lcompagnon@cogeco.ca. Thanks everyone! Ian and I personally attended a fundraiser last Friday evening for a fund at Sick Kids called Meagan's Walk. May of you have probably heard of this child or event. Meagan's battle with a malignant brain tumour has been chronicled on the Sick Kids telethon that often runs on Sunday mornings. After Meagan's death, Meagan's mom started a research fund that benefits pediatric brain tumour research at the Hospital for Sick Kids in Toronto (same as Grace's fund). Meagan's walk takes place on Mother's Day and is a 5km walk that end's at the the Hospital for Sick Kids with a human hug around the hospital. For more information go to www.meaganswalk.com. This event has grown so large that they have added a gala dinner and auction to their fundraising to kick off the walk. Ian and I attended this dinner and auction last Friday night. We were asked to send in pictures of Grace for the in memory slide show which I did. It was so very difficult to see Grace a part of this presentation but I was so glad we were remembering her. I sent at least a dozen photo's in, and in each she was bursting out of the frame with such energy and life. Her smiles were ear to ear, her shiny bald head would often cause kick back on the flash and she was never with out pink blankie and cat near. She is a true blessing, she was so strong and fearless, able to exhaust every moment that she was granted. At one point Ian leaned over to ask how many pictures of Grace I had submitted since it seemed as though she had monopolized the slide show... My answer was "there could never be too many pictures of Grace". It was an emotionally exhausting evening but it was nice to see all of Grace's doctor's outside of the hospital. We will be participating in Meagan's walk on Mother's Day, let us know if you would like to join us or register directly on Meagan's website (listed above). So busy, busy, busy with fundraising that's for sure but just remember BRAIN TUMOURS ARE THE NUMBER ONE CAUSE OF CANCEROUS DEATH AMONG CHILDREN AND YOUNG ADULTS UNDER THE AGE OF 20. I personally would have guessed leukemia. But it's not it is brain tumours.... so why are we not fighting to save our children like we are fighting to save our grandmothers, mothers, sisters, wives and daughters in our efforts against breast cancer. Why do we not hear about brain cancer like we hear about breast cancer??? If we want to save our children we must.

Mama misses you baby.
L~

P.S. Puppy update: George is huge! He's a wonderful boy and quiet enjoys his new girl friend D'lila (the Depaz's bulldog). He loves the snow and is doing OK at puppy class although Ian feels he's not doing as well as he should be. I'm just happy he's potty trained and hasn't eaten any of my shoes. He turns 5 months old on the 2nd of March... I think daddy's expectations of such a young boy may just be a little high :-)

Grace's 3rd Birthday

2007-02-07T17:56:00.000-05:00

Hi Everyone,

I was hoping to Blog on Grace's 3rd Birthday, Monday Feb. 5th, but I was a disaster and couldn't pull it together enough to do so. Actually, in retrospect, the weekend leading up to her birthday proved to be more challenging than the actual day. I was physically sick with anticipation over how I would survive the day without her physically here from Friday on. I spent the majority of my days in bed, either crying to Ian in devastation or annoyed with him over trivial things that seemed all encompassing in the moment. I swear the 8th wonder of the world should be Ian and his ability to manage my instability. I did not work on Monday and when I woke up in the morning I lye in bed stunned with fear, wondering what I should do... get up, lye there, eat??? I'm not sure what I was fearful of, I just felt like nothing about the day could possibly be OK and I should not tempt fate by presenting any opportunity for things to become worse then they already were. Ian only worked a half day and convinced me we needed to let the day just be a day. He felt it was important to honour Grace (as I also did) but we honoured her existence everyday she was with us on earth, so really her birthday was just more of the same. He bought Grace a dozen pink roses and a Dora birthday cake. We decided it would be best to share the cake with Grace's best buddy's so we invited the Depaz's (Al, Jen, Moo, Jules, Nicky, Zen and their new addition D'lila - bulldog puppy) over. We all enjoyed KD and hot dogs (with ketchup of course) for dinner since this was Grace's favorite meal and had Dora cake for dessert. Al encouraged the kids to sing Happy Birthday loud enough so that Grace would hear them from heaven and although tears were shed, I feel we did the best we could under the circumstances we've been dealt. Yesterday I was still physically exhausted from my 4 days of emotional devastation but today I had a good day at work and things are full speed ahead with regards to Grace's Marketplace Fundraiser. For those of you who would like more information on this fundraiser that takes place this Saturday Feb. 10, please go to http://www.gracestanley.org/. Thank you so much to those of you who called, Emailed, dropped by and sent items to us in memory of Grace's 3rd Birthday... your kind wishes and gestures gave us much needed strength to manage the day. As you could probably imagine, one of the most difficult things about loosing a child is the fear that she will be forgotten and these gestures insured to us that Grace is not. We look forward to seeing you all at Grace's Marketplace Fundraiser in honour of her 3rd Birthday this Saturday. Proceeds are going to Brain Tumour Research at the Hospital for Sick Children in Toronto.

Mama misses you baby.
L~

P.S. Again, I forgot the puppy update. Not only is George fully potty trained but when he needs to go out he's learning how to ring a bell by the back door to let us know. He sits just with a hand signal and has proven to be a very smart boy.

Navigating my way...

2007-01-19T02:47:00.000-05:00

Hi Everyone,

I hope this blogg finds everyone healthy. Well I'm having one of those sleepless nights which I've grown accustom to however this is my first since returning to work so I'm a little anxious about how I'm going to be up at 7am when it's 10min to 3am and I still haven't been able to find sleep. I've been having an "emotionally charged" week. I find since Grace has died I'm more sensitive to all aspects of living, but this week I find my self even more sensitive. If someone extends the smallest gesture of kindness, I'm overwhelmed with gratitude. If someone is the tiniest bit insincere or unsupportive, I'm devastated for days. I search for meaning in simple circumstances of life that I would never invested time analyzing before. Maybe this is because I'm so desperate for answers. Answers as to how to navigate my way through life without Grace by my side, a task that doesn't seem to be getting more manageable with time. Naturally I assumed that with time, pain would subside, wounds would begin to heal... "time heals all wounds" right? It doesn't seem to be proving true for me. I miss Grace more with each day that passes because it's that much longer since I've held her in my arms and heard her call me Mama. I'm desperate to remember all the details of her time with me on earth and challenge my self daily to recall intricacies of her behavior so that I will never forget. With each day that I wake up without Grace by my side, I realize how important it is to surround my self with people who sincerely care about my well being, those who find meaning in trying to help me navigate my way and have the strength to endure. I often say to those who remain close to me that I promise I will not be such an exhausting friend forever and do hope to return the support extended 10 fold eventually. But it's funny because those I hold closest to my heart seem to sincerely fail to even recognize that they are doing anything "extra" and try to convince me that my company "as is" is a gift to them. On Wed. night I missed support group to attend the Executive Meeting for Grace's Nursery School. The mom's at this school arranged to have home made dinner delivered to Ian and I at the hospital 3 nights a week for months. They were the first to hold a fund raiser and then connected us to the Magic of Metals association who held our largest fundraiser to date. All of this even though Grace only attended Nursery School there 8 days before falling ill. I attend this meeting because I have absorbed bingo duty with another mom (Grace's nursery school is a co-operative not for profit and monthly bingos generate income to operate the school). At the meeting Grace's birthday fundraiser (Marketplace - go to www.gracestanley - fundraiser, for more information) was mentioned. Mostly to encourage those attending to tell family and friends about it so that turn out to the event would be good. However, without even suggesting that help was need, the offers of support were overwhelming and I found my self in tears. These are mom's who have 2,3,4 kids at home, many work full time jobs, care for husbands, family pets and all the other tasks that it takes to run a home in 2007, yet they were falling over themselves to bake, volunteer, get donations for raffles etc., etc. Not once was it mentioned how busy they were with just getting through their own day, never a mention as to whether is was feasible to add yet another "to do" to their never ending lists. All that mattered was that Grace was remembered and a successful fundraiser to support pediatric brain tumour research was what was going to do that in this moment. I miss my baby so much, and there was no better place to break down in devastation then surrounded by this group of phenomenal women. My goal for 2007, to help me navigate my way through days without Grace by my side, is to surround my self with phenomenal women and then strive to live to the standards they set with regards to community involement and commitment to not only their own families, but those in need. The last year has taught me that taking care of yourself and your immediate family is not enough. Without the help from others beyond my immediate family Ian and I would not have survived 2006. Everyone is busy, no one has time... but there is time if we make it, to extend a hand to those in need in our community. Here's to hopefully joining the ranks of phenomenal women!

Mama misses you baby.
L~

P.S. I forgot a puppy update. George is well, a wonderful addition to our home. He walks well on a leach, sits most times when asked, comes when called but is still having the odd accident in the house (but never on carpet so I can't complain). We changed his puppy classes to a school in Oakville recommended by friends of ours. Our first class is this Sat. We are hoping that they will guild us in finishing up his potty training. Now when George has an accident in the house, we just clean it up and tell him that he has to "get busy" outside. Ian and I can't seem to bring ourselves to discipline him... we're not convinced this is the only way... guess we'll find out on Sat.

Welcome George!

2007-01-02T08:10:00.000-05:00

Hi Everyone,

Well, seems as though we have made it to the "other side"... of our first holiday season without Grace physically with us. That is truly how it felt, like we had this enormous mountain to climb... not one we wanted to, I had no drive to obtain any level of success or completion, just one we had to because we had NO other option, climb or die. So we just placed one foot in front of the other and attempted to get to the other side with as little emotional devastation as possible. Well, seems as though we are here... although we did end up doing it with a little help from a new family member. Yup... Ian and I got a puppy! We picked him up Dec. 31 in the morning. Even with puppy I was still a basket case on New Years Eve, but he's not a miracle worker, just a puppy. I am well aware that with or without puppy my heart ache for Grace will sustain. George (our puppy) is 3 months old and is already up to our knee. He' going to be a big boy... but I guess if Ian's going to walk a poodle for the next 15 years he should at least be able to walk a big one. He's black right now but will turn silver in the next 9-15 months. He is very content and slept on his blanket for 3 hours when we brought him to a friends house for New Years Eve dinner. Ian taught him how to play fetch yesterday and he is coming along with regards to how to walk on a leash. He love's his crate and often goes in on his own just to hang out. Griffin (our cat) has been reinforcing that he's the king of this castle on occasion but generally they are doing very well together. George starts puppy kindergarten on Thurs. We promised Grace a dog when she was completed treatment but unfortunately she was never well enough for us to be able to fulfill this wish of hers. Well babes, your doggy's name is George and Mama and Dada will give him extra squeezes from you.

Mama misses you baby.
Les

much overdue update

2006-12-18T12:16:00.000-05:00

Hi Everyone,

It's been 3 weeks since my last note and life has been moving at an insane pace. The walk on Dec. 2 went well. The weather was good. Ian and Brett completed the entire 32kms in 6 hours. Papa and I did about 24kms each with the balance of time being spent on coffee runs. I have to say I under estimated how difficult it would be. I've never really thought of walking as being strenuous but I've also never walked such a long distance at once. I wanted to update about the walk on Sun. Dec. 3 when Ian and I got home from church but that afternoon I learned a friend of mine who lives in Denver was in the hospital. I flew to Denver with in hours of hearing the news so "planned life" was put on hold. I'm happy to report that my girlfriend was discharged from hospital on Fri. Dec. 8 and although she has a very long road of recovery ahead of her, she's a fighter and 2007 will be a year of healing for her. I returned to Toronto on Sun. Dec. 10 after she was settled at home. This past week has been very hectic. We had the Bereaved Families of Ontario memorial on Monday evening. We found it very depressing and are going to focus our energy on more "upbeat" (for lack of a better word) ways to remember our little lady. Tues. Dec. 12 was our 8th wedding anniversary. We went to dinner and tried our best to celebrate the fact that our relationship has been able to endure such tragedy (something that I've recently learned many other relationships are unable to do). On Wed. was my first support group with Bereaved Families. It was the night to share your stories. I cried so hard sharing my tragedy with others but then cried just as hard as my heart broke while I attempted to absorb the tragedy that others had also lived. Thurs. and Fri. I forced my self to prepare the house for Xmas. I wrote Xmas cards, decorated the tree and staircase as well as made my best attempt at Xmas baking. Everything is bitter sweet and emotionally exhausting. A moment does not pass without my heart breaking due to the pain of missing Grace. It seems as though it gets harder as more time passes because I miss her more instead of less because that much more time has lapsed since I've last held her. I often feel as though I live impossible circumstances. According to the "world" I'm doing so well yet so few know my true pain and I even find that with out poor intention suggest in action that I am so capable when truly I'm not. So few can relate or have truly sacrificed there own worlds to absorb some of my tragedy so that they can try to understand. Life is just so hard and I'm not sure when It'll ease up. Sat. I hosted a Xmas party here for a friend. I only had to provide the location... everything else was done, but even that ended up being a bit overwhelming. Well, what's done is done... our first party hosted post the death of Grace, hopefully the next will be easier. Ian and I are just trying to manage through this very difficult time and move forward into the new year with as much hope as we can scrap together that happiness will one day dominate the sadness that currently grips our hearts.

Thank you to all of you who donated to the 2nd Annual Walk for Grace. You can continue to donate at www.gracestanly.org. I will let you know how much money that this walk generated for brain tumour research once I receive my report from the Hospital for Sick Children in Jan.

Mama misses you baby.
L~

Luck

2006-11-30T22:50:00.000-05:00

So you pray... for the health of your children, for the heath of your family & friends... to land a promotion, to do well on a exam, to get your weight down... hell, to get a good parking spot at the mall during the Xmas rush. How does God decide who's prayers to answer and who's he will not? Do you really think it works like that?? Before Grace became ill, things were very simple in my world. I lived my life believing that good things came to good people. So I would wake up each morning and just try to be good... work an honest job, keep a functional, loving home, be a good mom, wife, daughter and friend... just generally be nice, non-judgmental of others and as generous as I was able to be. This simple world lead me to believe that this goodness would be returned to me... and if not to me in my life time then to my children. Goodness given would result in goodness returned... simple. So where am I at now?? Well I no longer live in that simple world. I am no long that naive. I'm not even sure if god has the ability to answer prayers or if that's something just made up by humans. See I think as humans we like to be in control of our environment. Maybe when we are unable to control our environment, we then turn to prayer in hopes that what is not in our control than may possibly be in God's and via prayer we can influence his granting of blessings and as a result regain some level of control again. I remember one evening while Grace was close to death, I sat by her side in bed and talked about life with her palliative care doc. I remember Dr. Newman saying that she rarely prayed for specifics, she only prayed for general "goods". I figured this was a function of her roll. How could she pray for one child by name when she cared for so many? I assumed it would only be logical for her to pray for all ill/palliative children... you know, to be "fair". Now the more I think about it the more I question whether or not this was why she chose to pray like this. As I continue to examine my life circumstance, I realize specific prayer kinda makes me angry in a way. It is actually quite selfish and arrogant. Why would one believe that God would answer their prayers over another's? We all know not all prayers are answered so with specific praying we must be hoping that ours are granted at the expense of another's. When ones specific prayers are answered would that then suggest that they were more worthy than someone else who may not have been dealt the same favorable fate. Believe me, when my baby was ill and then dying, I prayed so hard that I nearly wore my knees out. Yet here I am... with the only remains of Grace to kiss good night being to cold lid of her marble urn. So tell me what went wrong?? Nothing! Because life is not as simple as good out, good in... abundant prayer, abundant blessings. There's this mystical factor called luck. Sometimes your lucky and some times your not. Keep this in mind... LUCK. No matter how good of a person you are and how much you pray you can just have shit luck. Then again you could be a miserable sacrilegious person and have amazing luck. Luck has a lot to do with where you find your self from one day to the next. So when you look at all that you've achieved, I think it's important to recognize how hard you have worked to get to where you're at but also recognize that in ways luck has been on your side. And vise versa of course... if your down and out and you feel you've worked so hard without getting to where you want to be, maybe luck just has not been on your side. Maybe the street kid that is annoying you when he attempts to squeegee your window has just had really shitty luck and their circumstance is not as a result of lack of effort. It drives me crazy when someone refuses to give money to street people because they "have two arms and legs" and for some reason this means they are capable of achieving employment so they will not part with their coins when asked. Maybe this person has just had really bad luck. I know I've just had really bad luck. Even with two arms, two legs, a loving healthy husband and a functional uterus, I'm childless... shitty, shitty, luck. Take some time... thnik about it.

Mama misses you baby.
L~

P.S. Here's praying for good luck! :-)

P.S.S. We're walking on Sat. Thanks to all that have donated. You can donated 24/7 at www.gracestanley.org. All proceeds going to Brain Tumour research via the Hospital for Sick Children in Toronto.

Better Week

2006-11-24T12:46:00.000-05:00

Hi Everyone,

Well I didn't get to blogging on Sunday as promised in my Saturday blogg and then next thing you know it's Friday again. Last weekend on Friday evening I went out with friends from work to celebrate one of my colleagues birthday. I viewed it as a good opportunity to see a few work people so that come January (when I return to work full time) my first day back is not completely overwhelming seeing everyone for the first time. The night was fun but come the end of the night, the coat check had lost my jacket. Not a big deal for most, but for me it was huge. It had nothing really to do with the loss of the jacket... I could really care less, I can buy a new jacket, it had to do with the "meaning" behind the loss. You see, these days everything holds greater meaning for me then what most would view it to be...let me explain. Since the coat check had miss placed my jacket, I took this as a message from Grace that it was too soon for me to be out "partying" with friends post her death. I know this sounds crazy to those of you of rational mind, but in my irrational world... this makes complete sense. The next day I woke up feeling terrible, having hardly slept, and isolated myself in bed for the entire day feeling like a bad mommy. When the manager of the club could not find my jacket, he advised me to call the next night after 6pm with the possibility that they find my jacket once all other coat check items were picked up. So come 6pm on Sat. I called the club and believe it or not, they found my jacket. I was so relieved, now believing that this incident was not a message of disapproval from my baby. I went to bed that night, feeling better yet still kinda guilty for having enjoyed my self on the Friday evening... everything is bitter sweet these days.

On Sunday Ian and I volunteered at the Santa Clause Parade in T.O. to raise money for Sick Kids. We sold light up necklaces, DVD's and Hats from 10:30am until the parade passed where we were located (around 1:30pm). Our competitive spirits came out and we "worked" the route raising almost $500. We watched a bit of the parade... got to see Dora (Grace's favorite) but then headed home before it was over since Ian had to put in some hours at the office. We were obviously sad that we were not enjoying the parade with our sweet Grace, but you do the best you can with what you have, and that's what we did.

This week during the days I have spent time with girlfriends and there kids... injecting my self where ever I can so I still feel needed. The decorating of the house is going well but not surprising over budget... good thing I'm back to work in Jan. Tues. evening Ian and I went down to Sick Kids for training to volunteer at the One Of A Kind Show's Sick Kids booth this weekend. We ran into a nurse who asked about Grace not being aware that she had died... it was awkward but we managed. Wed. evening Ian and I attended a seminar put on by Dr. Weber (Healing through the Holidays) which had some good learnings... I guess my most favorite (or 2 most favorites were) 1. Grief is the price we pay for having been given the gift of true love... if you had not had experienced true love you would not experience the grief surrounding its loss 2. Your responsible for your own happiness. This last one compliments a learning from a book I read while Grace was under going treatment titled "You Can't Let Cancer Ruin Your Day". The author of this book (Syd Burell) is a father of a young boy who died as a result of Neuroblastoma (central nervous system cancer). He wrote of his grieving saying something like: life is about choices... you can look at a photo of your child who has died until you well up with tears due to missing them so much it feels physically unbearable, or you can CHOOSE to look at the photo long enough to remember the good times and then look away and count your blessings. So I guess if you combine to two things it would be that you are responsible for your own happiness and it's your choice to live in a way to promote this happiness... regardless of your circumstances. If happiness were a function of something material rather than choice then that would mean every millionaire would be happy and every poor person would not... we all know this is simply not the case. Point being... Ian and I are challenging our selves to be happy this holiday while grieving the loss of our angle... who was a gift of true love.

I hope you all have a happy, healthy weekend.

Mama misses you baby,
Les

P.S. Dawson (Grace's friend from Sick Kids) had a MRI on Tues. It showed that he is free of disease 8 months post treatment. Congratulations Dawson!!

2nd Annual Walk for Grace

2006-11-19T23:19:00.000-05:00

Hi Everyone,

Seems as though I did not post my blog from Nov. 8 (Busy, Busy...) properly so I just posted it again. Hopefully now everyone can view it.

I had an emotional weekend, will blog about it tomorrow when I'm feeling stronger, but for now I just wanted to draw your attention to our upcoming fundraiser for brain tumour research. The 2nd Annual Walk for Grace will be held on Sat. Dec. 2nd. Please visit www.gracestanley.org and go to the fundraiser tab to read all the details. Your support is greatly appreciated.

Again, sorry for the bland blog... just so tired and I like to write when I'm able to view life as "glass half full"... tonight is one of those "glass half empty" nights.

Will be in touch soon.

Mama misses you baby.
L~

Busy, Busy...

2006-11-08T12:10:00.000-05:00

Hi Everyone,

I believe it's only been a week since my last post but I sure have a lot to chirp about! Where to begin...

Last Thurs. Ian, Nana, Papa and I attended mass honoring all those who have died this year (Nov. is the month of All Souls if you're Catholic.) We decided to attend although we knew it would be very difficult. Ian was very sad, but as always, my rock. I began crying when we pulled out of the driveway on our way to church, and continued to cry until the ceremony ended and as the four of us walked to the car I pulled it together enough to jokingly say "well, I think I handled that well!" as I reached for yet another tissue to try to disguise how ugly my cry had become. Nana and Papa also shed tears. I am very aware how difficult this must be for them. Not only have they lost their grandbaby, who they loved as much (if not more??) then their own children, they also must watch there only daughter suffer through the pain of losing her only child. The mass was nice. Grace's name was called out at which time Ian and I lit a candle in her honor and placed it on the alter. I'm glad we went even with all the tears that were shed.

Saturday was Papa's 60th birthday... HAPPY BIRTHDAY PAPA! I know his only wish was to squeeze his grandbaby and possibly play a game of "dragon chasing baby" (a Papa specialty) although he had to settle for a wonderful brunch prepared by Nana and lots of gift certificates for Golf Town from those who love him. Between the new clubs and the "grace of Grace" watching over you from heaven... maybe your game will improve in '07!

My hubby has been so very busy. His hours at the office have been a little longer than normal as well as putting in some hours in the evening on his laptop... I believe he's preparing for inventory. This wouldn't at all be a problem if I also wasn't so demanding with regards to his time. You see... since I'm not working I've been spending my day time hours decorating the house. Seems as though there has not been a day in the last week that he has not had a picture to hang, wall sconces to install, under cabinet lighting to put up or chandelier to hang. See I'm kinda spoiled. Ian is very handy and I just assume he can do everything... which he can but it is also very time consuming (not to mention at times life threatening.... I didn't realize how tricky it is to install a chandelier on a landing that has 12 foot ceilings... sorry babe!)

Finally happy, happy birthday to Zen and Nicky (Grace's best friend). We celebrated their 1st and 3rd birthdays this weekend with a huge swim party (over 100 people). For those of you who don't know my good girlfriend Jen... her motto is "go big or go home!" I guess with 4 kids most can assume that's her motto. There was enough food to feed 200 and I had the pleasure of being Nicky's swim partner. I have to admit, tears were shed on the way home because Grace would have so enjoyed the party, but I'm so thankful to have the Depaz's in my life. I'm not sure how Jen and Al do it, but the kids understand Grace's death so well and live it without the apprehension that as adults we naturally own. Nicky still asks me all the time if Grace is still in "heaBen" (heaven). And when I reply "Yes" she then talks about how Grace must be playing with Quinn (the Depaz family dog that died earlier in the summer) and eating macaroni & cheese, hotdogs and ketchup. I then tell her "she sure is!"

Mama misses you baby.
L~

This week...

2006-11-02T13:29:00.000-05:00

Well I continue to struggle with this cold... just a dry cough right now but enough so that I'm unable to rest peacefully at night... looks like Ian bounced back quicker then me. I hope everyone enjoyed the warm weather on Halloween. I am happy to report that Ian and I got through the evening with some sadness but overall we were happy with how we managed. Ian got held up at work so the first 1/2 dozen "trick or treater's" I managed on my own. My social worker from the hospital called at 5:45pm to see how we were handling the day and I stayed on the phone with him until Ian got home so that definitely helped. The kids were cute although a lot fewer than I had anticipated having bought 160 treats, we maybe had 50 kids. Ian and I were excited to see a little boy dressed up as a giraffe in the same giraffe costume that Grace wore for her first and only well Halloween. We missed her tremendously and were constantly thinking of what our evening would have been if she were with us but at the same time so grateful that we had our found memories to give us strength and get us through the pain of missing her.

Yesterday I had a meeting with a grief councilor (pre interview to being accepted into the support group that starts in Jan.) It was OK... many tears shed but her daughter also died at a young age due to illness so it was an interesting experience speaking to someone who can relate to the heartache. We spoke for over 3 hours.

We have found some volunteer activities through the Sick Kids Foundation. This is separate from Sick Kids hospital and does not require bereaved parents to wait one year post receiving treatment at the hospital to volunteer. This is because when you volunteer with the Foundation, you are not in direct contact with patients and parents. Ian and I will be volunteering with the Sick Kids Foundation in two ways: 1) selling "Starlight" necklaces along the parade route of the Santa Clause Parade to raise money for the Sick Kids Fund; 2) Selling lottery tickets at a booth at the One of A Kind Show to also raise money for the Sick Kids Fund. We look forward to continuing to volunteer with the Sick Kids Foundation as opportunities come available.

So, have you started your Christmas shopping? Have you decided what to get that person who has everything? Well here's an idea... You are able to donate money to Sick Kids honoring the person that you would like to buy a gift for. They will be sent a card so that they are aware you have made this donation in their honor or the card can be sent to you so that you can give it directly to them. When Ian and I sat down and did our Christmas budget, we were able to allocate over $800 to Grace's fund honoring those who have done so much for us over the past several months. We won't have a lot of presents under our Christmas tree, but we are confident that those we chose to honor with these donations will prefer this statement of gratitude. So here's the challenge... are you able to donate money to Sick Kids honoring those who you have no idea what to buy or those who seem to have everything? Any donation over $10 receives a tax receipt. Every $10 is a step towards finding cures for deadly pediatric diseases. Grace's fund is called the Grace Compagnon Stanley Tribute Fund if you would prefer the money to go directly to brain tumour research. Just call (416) 813-7350 or go to www.sickkidsfoundation.com and state which fund you would like the money to go to, the amount and who the donation is honoring (Ie your boss, parents, best friend etc.) They then do everything else. It is an easy, seamless process and a good way to celebrate Christmas!

Mama misses you baby.
L~

Sick again...

2006-10-29T13:20:00.000-05:00

Hi Everyone,

It's odd... for the entire 16 months Grace was ill, I do not recall ever being unwell (well physically at least.) You would think with being in hospital as much as we were that I would have picked something up, but I didn't. I don't know if my body was in "survival" mode and did not slow down even briefly enough to allow illness to set in, or if this was a "gift" facilitating me to be able to care for my baby to the best of my ability. Either way, I was physically well for these 16 months. I am now fighting my 2nd cold of the season having enjoyed only 4 days of being well since my 1st. Seems as though Ian picked this one up at work and I was unwell within 24 hours of him feeling the symptoms. He seems to be a day a head of me and is actually "out and about" today so I'm looking forward to doing the same early in the week. I really don't care about the cold... it's just a cold, but I find being unwell hard for two reasons. One... It makes me realize how unwell a little cold can make you feel. It makes me think about Grace's sever illness and acknowledge the countless days/ weeks/ months she must have felt so extremely unwell yet at the same time knowing no other feeling so possibly just believing this was the way a person always felt. I question whether she was so tolerate of treatment because she didn't know how it felt to feel well. This makes me so very sad...but also very proud of her at the same time. Sad that my baby didn't have the simple luxury of waking up in the morning and experiencing what it felt like to function in a well body. But so very proud that she endured such tragic fate with smiles and ambition, never once suggesting self pity. She taught me so many lessons that I'm so grateful for yet so wish her suffering could have been nonexistent. The other reason feeling unwell is hard is because I'm able to lye in bed and do nothing while sick. Although this may seem like a positive, for me it is heartrenching. When you're actively parenting and you are unwell, you don't have the "luxury" of staying in bed to help your body regain it's health. You have to "suck it up" and carry on with your days responsibilities. Well, last night Ian and I were in bed at 6pm, drinking soup and reading magazines until we dosed off around 10ish. I know to many this may sound luxurious but it's not... it is just lonely. I hate having this "luxury." It makes me miss her so very much. I think this is one of those "be careful what you wish for" things. If you find yourself wishing for some quiet as your children race around "driving you crazy", believe me when I tell you to be careful what you wish for, quiet is very lonely.

Mama misses you baby.
L~

P.S. I'm unable to volunteer at Sick Kids. Since I'm a bereaved parent, there is a waiting period that I must fulfill prior to being involved with the hospital. For now I will just volunteer with Grace's nursery school and focus on fund raising for brain tumour research until my waiting period is complete.

Trip to Sick Kids

2006-10-24T22:15:00.000-04:00

Hi Everyone,

Sorry I have not posted in a week, my internet has been giving me some difficulty. Ian and I have been keeping busy. As many of you are aware, Ian likes to build things and has been busy building shelves/storage closets in our basement and garage (this also helps him with his anxiety.) This weekend he worked with a friend to build a deck. Last week a cold slowed me down a bit but I enjoyed spending time close to home with friends and their kids. I miss parenting Grace so much. I try to find some comfort surrounding myself with my friends children. So last week I was going to blog about our first trip to The Hospital for Sick Children since Grace has died. Ian and I were in Toronto for a Raptors game and we planned to attend mass downtown that Sunday evening at St. Mikes since we had not gone to mass that morning. We got out of the game and had an hour before mass began so we decided to pick up a couple of pizzas and bring dinner to two families we know who are currently admitted to the bone marrow transplant ward at Sick Kids. Two children who received transplants at the same time as Grace have been readmitted to that ward since they are fighting graft vs. host disease (a possible complication of donor bone marrow transplants.) As soon as I entered the hospital my heart started to race. The elevator up to the 8th floor is always the worst. Most parents in the hospital are aware that the 8th floor is the oncology floor. When ever I would get in the elevator and press "8", I always felt that others were counting there blessings that although they were in the hospital, at least they were not on "8". We delivered the pizzas and had a quick visit with the two children we knew... both looked very unwell but are fighters and will hopefully regain their health. I hated being there although I would spend a million more days there if it meant being with my girl. When I left I realized how quickly I have forgotten the hell of hospital life. The constant anxiety associated with not knowing whether tomorrow will bring better or worse health for your child. Your inability to save your baby from the overwhelming pain of disease and endless medical procedures. Days... weeks, months with little sleep, no privacy, surviving purely on the dream that your baby will not be snatched from your arms by death. As soon as I returned home I Emailed my social worker asking to begin volunteering at the hospital in some capacity that may help parents survive these unbearable stays. I have to go through some training but should be able to begin volunteering soon. Please pray for the health of all the unwell children at Sick Kids but also remember the parents who want nothing more than to continue to have the opportunity to hug their children. I'm going to work with the hospital to hopefully come up with a way that we could possibility bring some comfort to these parents over the holidays. Please stay posted for more details.

Mama misses you baby.
L~

P.S. Last week I received 7 more donation cards from the hospital drawing my attention to those of you who have place money in Grace's research fund. Thank-you all again so much for financially supporting brain tumour research at The Hospital for Sick Children. For those of you still interested in donating please visit www.sickkidsfoundation.com . Please designate your gift to The Grace Compagnon Stanley Tribute Fund. Thank you all again so much for keeping Grace's memory alive via brain tumour research.

Sweet Nayos

2006-10-16T01:39:00.000-04:00

Hi Everyone,

Well I logged on a couple of hours ago with the intention of writing to you all about our day which included our first visit to Sick Kids Hospital since Grace's death, as well as attending mass at St. Mike's Cathedral where Amazing Grace just happened to be the recession hymn. But when I logged on I first checked my Email. Tonight I received a note from a fellow caner mom. Her name is Christy. Christy and I met through a mutual friend, Josee (also a cancer mom.) The three of us had the opportunity to go out to dinner twice during the many months that we survived (not lived... survived) at the hospital while our children under went aggressive chemo therapy. These dinners were always planed as a "break" from the hospital but would result in a strategy session of advocates brainstorming to discover possible care options that may have been overlooked by the professionals... hardly the "break" that we each intended and so desperately needed. Tonight I opened Christy's Email to read the following:

Saraphine Nayohan Karly Cheechoo

November 1st, 2002 - October 4, 2006

My heart aches - we miss our Nayos so much.

I am overwhelmed with disbelief that sweet Nayos' body died one month shy of her 4th birthday. What had appeared for the last year to be dormant residual brain tumour suddenly aggressively progressed and metastasized extensively through her spine. 14 days after her family learned of this progression and one day post her first palliative spinal radiation, Nayos left this earth. How does this happen?? I am devastated and infuriated with this chain of events. Although my fate has been very similar to that of Christy's, for some reason, once Grace had died, I drew strength by thinking that my fate yet devastating was sealed, and by me living this tragedy that others would be spared similar devastation. Receiving Christy's Email was a rude awakening that this disease has not only devastated my reality but will continue to devastate the reality of many others. Other mothers will have to endure the heart ache so overwhelming that you becoming physically ill with nausea. How is it possible for such evil to invaded the lives of those who's only wish is to shower their child with love. I am speechless.

May Grace and Nayos' spirits find one another. May they find peace and joy now free of disease and able to frolic in the clouds as toddlers should.

Mama misses you baby.
L~

Hard Afternoon

2006-10-12T21:59:00.000-04:00

Hi Everyone,

So I had some errands to run this afternoon. Some stuff for Grace, some mindless stuff. First I returned Grace's at home medical chart to Comcare (the company that provided Grace's in home nursing). This was kind of weird but didn't seem to upset me much. When I dropped it off, the receptionist was very nice, she didn't ask any questions and I wondered whether or not she knew that I was returning it because my baby died. This thought often crosses my mind. I could be doing something completely unrelated to Grace... like standing in line at the grocery store, and I'll catch someone looking at me, this will make me wonder whether they can tell by my look or the vibe that I'm giving off that my baby has died. Losing a child kind of results in an identity crisis. See if your spouse dies, you become a widow. You acquire a new title to describe to society your new reality. When your baby dies, what do you become? From the reading I've done on the subject, it is suggested that you continue to refer to your self as a parent, even if the child that has died is your only child and you are no longer able to actively parent. But this doesn't really cut it. Strangers in idle conversation have asked me if I have children since Grace has died and I respond "Yes". They smile and ask "boy/ girl, how old etc.?" I then respond "girl, 2 1/2" and try to divert the conversation to their children. It seems unfair to shock them with the "detail" that Grace has died. However this response does not describe to society my new hellish reality. Why is there no "new title" to describe a parent who has lost a child? To help us communicate to others our new reality without having to shock them with "my child has died." I think there is no title because it's not suppose to happen, parents should not have to bury their children.

Anyways, I continue with my errands and go to the Winners at Dorval and the QEW. Next to this Winners is a Shoe Company. As I'm leaving, I see a women crossing the parking lot to enter the Shoe Company when a 3ish year old comes running behind her, only wearing a T shirt, it was quite cold today but I immediately assumed this was the result of this little spit fire insisting on dressing himself. He began screaming "NO MAMA NO!" His tone was similar to that of Grace's when she would plead with me to stop the a nurse from poking her arm for an IV start... He had the same desperation in his voice. Then he continued to say "NO MAMA NO... NO SHOPPING MAMA, PLEASE NO SHOPPING!" His mother then picked him up and carried him kicking and screaming into the Shoe Company. My heart broke and I was devastated for hours. I kept trying to convince my self that he was a well cared for child that was most likely just in a typical 3 year old power struggle with his mom regarding what activities would fill their afternoon. He was not being physically or verbally abused... just being brought shoe shopping... his mom was most likely picking him up winter boots due to our abrupt change in weather. I thought a lot about why this effected me so much... why witnessing this chain of events devastated me and dominated my thoughts for hours. I think it was because his tone was so desperate, pleading not to participate... so similar to how Grace would plead when she recognized that a painful medical procedure was eminent. In that moment I wished that I could rescue that little guy from his devastation... scoop him up and bring him to the park instead of the shoe store. So many times I was unable to rescue Grace because the solution was not as easy as bringing her to the park instead of the shoe store. I had to allow her pleas to go unanswered in hopes these painful medical procedures would save her life. I hope Grace understands this. I hope she knows that I would have answered her pleas and rescued her if I could. If you have the luxury of rescuing your toddler from what in there world is devastating with a trip to the park, ice cream... hell, even a puppy... do it for me. Rescue them if you can because many parents of sick kids can not rescue their children from devastation with these easy solutions.

Finally, I went to the pharmacy to drop off all of Grace's unused prescription meds. Do to the toxicity of many of these meds (chemo etc.) I can not dispose of them myself. Again, when dropping of the meds, I wondered... do they know that I'm returning them because my baby has died? I returned to the car for a good cry because I hated to give anything of hers away... even her chemo. I miss her so desperately... so much of what should have been will no longer be.

Mama misses you baby.
Les

Happy (??) Thanksgiving

2006-10-09T10:32:00.000-04:00

Hi Everyone,

So today is Thanksgiving... the day to give thanks right??? So I'm sitting here wishing I could give thanks for what I gave thanks for last year... Grace. Then it dawned on me... I can and I should. Although Grace is no longer physically with me, she was for 2 years and 7 months. I wish she could have been with us for 100, but 2 years and 7 months is still better than having never been blessed with her at all... right?? Of course... sometimes I question this because the hurt is so bad as a result of her untimely death that I question whether having never loved would be better than having loved and lost. However, to survive this tragedy, I must be thankful for the 2 years and 7 months that Grace was physically with me and I must be thankful for her final gift to me... And that is the person I will become as a result of what she taught me through her life and death. Mama will make you proud baby. Grace continues to guild me everyday...

I'm Still Here

Mother and father, please don't mourn for me
I'm still here, though you don't see
I'm right by your side each night and day
And within your heart I long to stay
My body is gone but I'm always near
I'm everything you feel, see or hear
My spirit is free, but I'll never depart
As long as you keep me alive in your heart
I'll never wander out of your sight
I'm the brightest star on a summer night
I'll never be beyond your reach
I'm the warm moist sand when you're at the beach
I'm the colorful leaf when fall comes around
And the pure white snow that blankets the ground
I'm the beautiful flower of which you're so fond
The clear cool water in a quit pond
I'm the first bright blossom you'll see in the spring
The first warm raindrop that April will bring
I'm the first ray of light when the sun starts to shine
And you'll see that the face in the moon is mine
When you start thinking there's no one to love you
You can talk to me through the Lord above you
I'll whisper my answer through the leaves on the trees
And you'll feel my presence in the soft summer breeze
I'm the hot salty tears that flow when you weep
And the beautiful dreams that come while you sleep
I'm the smile you see on a baby's face
Just look for me, mother and father, I'm everyplace!

~Author Unknown~

Thanks to my friend Natalie for sending me this beautiful poem.

Mama misses you baby.
Les

Happy Birthday Nana!

2006-10-04T23:06:00.000-04:00

Hi Everyone,

Today was Nana's birthday. To be honest... I didn't realize this until this morning. Through Grace's illness, I trained my self to live in the moment and weaned my self off the Aries tendency to plan tomorrow today. It's odd, I always used to watch the weather network, to anticipate the week and choose appropriate activities based on the weather. I have not done this for months. It is now my natural tendency to plan a day only once I've woken up and been blessed with health. Writing that sounds crazy but it has truly become my reality. So back to my point... It was only once I woke up and turned on Breakfast Televison that I noticed the date in the bottom corner of the T.V. I knew with this being the first "event" since Grace died that Nana would have been happy to let it slip by without recognition but Grace would not have wanted this. Instead I headed to the flower shop and Grace (in spirit of course) and I picked out some beautiful pink flowers for Nana. I delivered them and we had a wonderful two hour chat. We spoke a lot about Grace, a few tears were shed but more smiles were shared. Nana misses you very, very much baby. So does Papa. They are taking good care of Willie and Simba for you. Nana dried flowers from each of the special arrangements sent to celebrate your life. She also cares for original Cat and keeps your special pink jammies close to her.

Mama misses you baby.
Les

Ian's first day back to work

2006-10-03T20:39:00.000-04:00

Hi Everyone,

Sorry I have not written for a week. I'm having a hard time figuring out what to write now that I am no longer able to report on Grace's daily activities/condition. Ian and I are doing OK. We still cry everyday for some reason or another. Sunday was hard. We attended our first social event childless. It was a friends daughter's baptism and many of the children there were Grace's age so we missed her very, very much. We got home around dinner time and went to bed immediately to recoup. Today Ian returned to work. He was very anxious waking at 3am and not being able to fall back to sleep. My girlfriend Lesley was here at 8:30am and Jen (with 2 of her 4) joined us at 9:30am. We hung out and chatted... it was really, really nice. I'm so blessed to have such good friends. I know they recognized that with this being Ian's first day back to work that I may have a hard time being home alone, so without even having to ask... they were here to keep me occupied. Ian had a good first day back. He felt very welcomed and is looking forward to moving forward with some projects that have been sitting on the back burner for a while. I have to admit that I was worried about how Grace's death was going to impact our marriage. Since Grace became ill, parenting consumed every waking minute leaving no time to just be husband and wife. Now that it is just the two of us, I have quickly realized that Ian and I are not just Grace's parents, but truly each other's best friend. Even though right now surviving this tragedy seems close to impossible, with my hubby, such good friends and family by my side... It will happen.

I hope all is well with everyone.

Mama misses you baby.
Les

Not much to say...

2006-09-26T22:36:00.000-04:00

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

2006-09-24T00:31:00.000-04:00

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

2006-09-07T14:41:00.000-04:00

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...

2006-09-06T14:51:00.000-04:00

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

2006-09-05T10:31:00.001-04:00

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

2006-09-04T17:12:00.000-04:00

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

2006-09-02T17:52:00.000-04:00

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

2006-09-02T12:56:00.000-04:00

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

2006-09-01T23:19:00.000-04:00

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~

"Well"

2006-08-31T20:48:00.000-04:00

Hi Everyone,

Last night Grace was stable, Ian doing from midnight to 5am and then I took over at 5. Today she seemed a little worse than she was yesterday in the morning/afternoon and then picked up at night asking to be brought downstairs and she sat in my arms for 10-15min which was wonderful. The doc came this evening instead of in the morning due to plans with her daughter, but this evening said that she was surprised with how the week has turned out. She said last week this time when she was advising us to make sure we had "everything" in order prior to the weekend, she would not have guessed (due to Grace's deterioration from mid to late last week) that Grace would still be doing this "well" today. Of course I took this opportunity to ask if we needed another scan to ensure that Grace was still considered palliative and she assured me that it was not reasonable to believe otherwise and she knew I knew that in my heart... true but as mother I had to ask. But, believe me when I say "well", we are still living devastating circumstances, far from enjoying the Grace that so many of you know. She is still in bed 24 hours a day, rarely opens her eyes and when she does she is extremely cross eyed and today she lost muscle control of her neck so now when we do pick her up it is once again like handling a new born. But "well" in our world today means stable breathing, stable heart rate, good bowel sounds and still occasionally interacting with words. So today she is "well". However this afternoon we did have a scare as she slept. Her breathing became unstable and Ian and I shed tears and watched over her praying that we were not living the moment that we have been fearing. Although living like this is exhausting, I will do it for as long as it is granted to me given my baby is free of pain and content. This is why... tonight, as I finished singing her to sleep (or I thought she was asleep) out of the silence I heard "nite, nite, Mama", I then replied "nite, nite, baby" she then replied "nite, nite, Mama" and this continued back and forth until we had each said it 11 times. Again I am filled with strength to handle the next medical crises. Ian also told me that earlier tonight as she lye in bed, she lifted her little left arm, pulled the corner of Pink (her favorite blanket) over her eyes (balance of body still exposed) and then in her sweet voice said "Where's Grace Dada?" Again Ian is filled with strength to handle the next medical crisis. This is hard to admit because in my eyes she's perfect, but I have to confess that she's never been good at "hide and seek".

Bless her sweet heart.
Les

Still Stable

2006-08-30T15:12:00.001-04:00

Hi Everyone,

Sorry I was out of touch yesterday, just trying to maximize my time with the baby. Well I'm happy to report that I did well on "Night Watch" on Tues. night staying awake until 2:30am. When I woke Ian for shift change, Grace woke up and insisted on watching T.T. (what she calls T.V.) downstairs. Ian and I were thrilled, jumped out of bed and headed for the family room. She sat in my arms and watched 1 episode of Dora. She then asked to sleep on the couch. We made a bed for her on the love seat, pushed the couch across the room so that the seats of the love seat and couch were touching and then Ian and I slept beside her on the couch. I woke up at 6am wedged in the crack between the love seat and couch as they slowly slipped apart since going to bed at 4am. Grace was peaceful and we truly enjoyed our couch "camp out". In the morning Grace vomited... seems everything we fed her in the last 48 hours so the doc has really cut back on her feeds, now just 20mls of electrolyte fluid 3 times a day. Its hard to watch her loose so much weight. We can see her little ribs quite well now. I asked the doctor if anything could be done, she said it was part of the process and some mothers find it helpful if someone else changes their child's diaper and sponge baths them so that the mom does not have to witness the deterioration. Mentally maybe this would provide me with stability but at the same time it would rip my heart out not to care for her in her final days so I (with Nana being a huge help of course) will continue to care for Grace. Yesterday she stayed downstairs all day... mostly in her Thomas bed but in the evening my dad and Ian set up a double box spring and mattress in her play area of our family room. This was sad because to fit the bed her little table and stools had to be moved to the basement. I had a little cry to mourn the fact that I will miss seeing her sit at her table to colour... telling everyone joining her at the table what colour crayon they are allowed to use and what picture she would like for them to colour. I'll also never forget last Mother's Day when we were home on a pass from the hospital. Ian insisted I stay in bed while he and the baby make me breakfast. When they called me down, they had breakfast set up at her table and stools in her play room and she was beaming, full of pride that she was "hosting" breakfast. All this being said, I must admit that I slept much better on this new bed set up then I did in the couch crack. Ian stayed up the night so I could have a good sleep (medicated of course) and he and the baby sleep now. Earlier today, we had molds done of Grace's hands and feet. I was nervous that this would upset her but I knew it would be something that I would be happy to have in the future. A girl I used to go to high school with (Kim Scott) came to the house to do it (does this for a side business). Most importantly it was nice to see a friendly face, secondly she was absolutely wonderful with Grace and the entire process was completed without even a fuss and finally it was another reminder to Ian and I that we are going to get through this nightmare, how could we not when we are surrounded by so many wonderful people??

Hope you are all keeping well.
Love,
Les

Stable Day

2006-08-28T21:47:00.000-04:00

Hi Everyone,

Grace had an uneventful night which is excellent. Her breathing was stable, she seemed comfortable and tolerated some feed via G Tube. I once again feel short on "night watch" only able to stay up to just after midnight before waking Ian to take over. He let me sleep until 8am. The doc was here at 9:30am and examined her. She was very stable: good pulse, good breathing, good bowel sounds. The Medigas team then showed up to set up her in home oxygen... may need this later in the game but wanted it here before we needed it. The respiratory therapist is coming in the morning to train Ian and I on how to use it. We then moved Grace into her room and convinced her to have a sponge bath by promising to dress her in her Mickey Mouse PJ's after it was complete. She then feel into a deep sleep in her room for hours under a open window which was nice for her to get some fresh air. Sometimes I'm not sure if she is awake or asleep so I read to her and sing to her just in case she's awake and maybe bored. She also seems to enjoy listening to her Dora music box during these times. Her Physo Therapist came by with some food and a story book for Grace. We cried, hugged and remembered the day she taught Grace how to peddle her tricycle... what a special day. When Grace woke up she pooped... a huge accomplishment when your on as much codeine as she is. That buys us another 3 days before we have to start debating another enema. We then brought her downstairs to her Thomas bed for 1/2 hour of story time before she insisted to go back up to the big bed. While my mom gave her her daily head to toe message and strech (to avoid bed sores) I ran down stair for a quick dinner... my first time down stair in days. Fiona and Gerry dropped of Dora PJ's which Ian used tonight when they were making their plans for tomorrow. He promised she could put them on as soon as she woke up and if she allowed Nana to give her a sponge bath. She then watched Strawberry twice with her eyes open and has just fallen asleep, I think for the night. I'm again on early shift & Ian is sleeping. It's weird... the doc's are a little surprised after such a deterioration from Wed. to Sat. that Grace now seems to have stabilized. She is still in bed 24hrs but we have been given the gift of some time to collect some more special memories. Today when I thought she was sleeping, I left her side to quickly go to the wash room. When I was trying to quietly return to my place beside her in bed, she abruptly opened her eyes and said in a stern voice "Mama, nite nite too!" She's always been bossy and I loved this moment of her scolding me for leaving.

Continue to pray for Grace's comfort and understanding of this process.

Love,
Les

P.S. For those of you who access this website through blogger directly you may not have Grace's Website... It's www.gracestanley.org

Hard Night, Better Day

2006-08-27T21:25:00.000-04:00

Hi Everyone,

Last night was really hard. Grace started have very long episodes of sleep apnea where she would go 10 seconds between breaths. I woke Ian, he called my parents who came over immediately and we all feared that it may be her final moments with us. Grace then stabilized a bit, Ian went on night watch, I medicated myself to calm down and my parents as well as Ian's mom (who has been staying here in the evenings) all found a place to rest. The doc came very early this morning which was nice after such an eventful night and acknowledged that Grace's apnea had worsened and it is just a step in this horrific process. She assured us that she did not feel Grace was in her final moments but most likely her final days. This statement made me break down in tears. Not out of devastation that it may be her final days, but out of joy that she was not in her final moments... odd.

We wanted to spruce up the bed with Grace's favorite blanket of Dora and Boots eating ice cream (Thanks Sheila) so with this promised we were able to lift her out of be for a quick sponge bath and a trip downstairs to lye on her Dora bed in her playroom. All was going well until she vomited all over the Nana and the Dora bed. Seems as though her GI track has slowed down because she hasn't eaten in days but still had a full tummy. The vomiting is a symptom of pressure on the brain. We consulted the doc and introduced a new med to control nausea. We cleaned Grace up and put her in her Thomas bed in her playroom and we had story time for close to an hour. She then insisted on returning upstairs to bed. It was only an hour, but I think the change in scenery was good for her. Then we had storey time upstairs, Grace listened to Strawberry (3, 4, 5 times... I lost count) and we cuddled the rest of the day away. One of the best things that I find about our days of late is when Grace is getting ready to settle for the night, Ian lies in bed next to her and makes plans for the following day. Nothing big, just waking up to Nana and Papa, watching/listening to Strawberry and hugs with Griffin. But for some reason I love listening to this conversation. I guess it helps me believe we will have Grace tomorrow. He's a great dad.

Love,
Les

Today

2006-08-27T01:02:00.000-04:00

Hi Everyone,

Well tonight I'm on early shift. I'm hoping to let Ian sleep until 3am but we'll see if I can stay awake... as you are all aware I'm crappy on "night watch". Grace was once again in bed all day with 4 brief awake times. One this morning (which I already blogged about) then Mo came by for 20min and brought Grace Mickey stickers, a tiera and a magic wand. Mo told Grace that she was her best friend and said she didn't want her to go... as we all fought back our tears, I realized that in these few words Mo had expressed exactly why this is all so devastating. Grace has brought so much love into the worlds of so many in such a short amount of time while spending over half of her life fighting this devastating disease. Why couldn't she have won, and stayed with us after having fought so hard and given so much? We just don't want her to go....
Grace's other two awake times were this evening where she watched Strawberry Shortcake. One of the times she was awake so long that she saw the whole video (30min). Tonight she seemed unsettled when trying to get to sleep. She often lays here and you would not know that she was awake except for her rolling the strings of her favorite pink blanket between her thumb and pointer finger. This is when we sing to her and play her Dora music box. We brought her Mickey and Minnie balloons up from her playroom today. With each day that passes I'm finding it harder to convince myself that she may get out of bed again.

Please pray for Grace's comfort and strength for Mo.

Love,
Les

Better Today

2006-08-26T11:28:00.000-04:00

Hi Everyone,

The doc just left. Grace's respiratory rate has increased a bit... which is good. Her heart does not seem to be working as hard as it was yesterday... also good. It's weird how our definition of "good" changes as days pass. She seems comfortable and watched 15min of her new favorite movie "Strawberry Shortcakes Get Well Adventure" (thanks Carly!). During the intro song of this video she actually said "nap (snap) Dada". It was wonderful to see Ian snapping and dancing while Grace lye in bed attempting to snap her own fingers. This is the longest she has been awake and responsive for a couple of days. The doctor talked today about her still being with us on Monday if she remains as stable as she was this morning. She said if that ends up being the case she feels it would be a good idea to get a hospital bed sent to the house and set it up in the family room so we can move her from upstairs to down for a change in scenery. Ian and I did shifts through the night last night given that when the doctor examined her at 6pm she was not good. We did not want something to happen while we were sleeping. Just like at the hospital... I couldn't contribute 50% only able to do a shift between 2:30am and 5:30am. I find the nights so hard. Thank god for Ian. Grace is now sleeping... we hope she has awake time this afternoon so her friend Mo can come over for some stories. Please keep praying for our babies comfort.

Love,
Les

Another Day In Bed

2006-08-25T18:51:00.000-04:00

Hi Everyone,

Yesterday Grace got up for an hour, today not at all. The doc came by and is going to start coming everyday. She anticipates we have begun the final steps. Grace seems comfortable. Her breathing rate is low.

Pray for our babies comfort during this devistating process.
L~

Sleeping Lots

2006-08-23T17:33:00.000-04:00

Hi Everyone,

Not much to say.... just thought I'd write now while the baby is sleeping. She got up at 10am and was OK but slower than normal until 2:30pm. She then fell asleep in her Daddy's arms. We've been waiting for her to wake but she's sleeping pretty sound. We have to do a supository when she wakes up... I know she's going to be upset with that. Ian and I almost feel like we are living outside of ourselves watching things spin out of control. We know she's dying but every time she sleeps we feel she might not wake up. I just keep telling my self that this has happened to other parents before us and will unfortunately happen to others after us. If they can do it we can too. We just don't know how.

Les

Hard Day that Got Better

2006-08-22T23:04:00.000-04:00

Hi Everyone,

Our day started out poor with Grace first waking at 11am very lethargic and unable to sit up in bed. Her eyes were more crossed than yesterday so this with the lethargy lead Ian and I to fear that Grace had sever pressure on the brain that she was unable to communicate to us. Her HemOnc Doc had decreased her Dex (steroid to decrease swelling/pressure on the brain) to half of what it was since Grace was very antisocial and more irritable than normal during their interactions on Monday (Dex causes irritability and mood swings... aka tantrums for a 2 year old). However Ian and I were in fear that this may have been a mistake for we would rather a moody Grace then one in such pain she is unable to lift her head. We consulted with her palliative care Doc who suggested that she may also be constipated (due to the amount of codeine she is on) and to try a laxative. We did. It didn't to much, so we upped her Dex to what it was and gave her an extra dose of codeine and within an hour she was out of bed (2:30pm by the time everything was said and done). We played for and hour before her palliative care Doc showed up to personally assess the change in events and then Nana and Papa brought Grace to feed the duck and rabbits at the park and go for a long walk while Ian and I discussed details with the doc. We are going to increase Dex to 3mls a day, smaller but scheduled does of codeine every four hours with "breakthrough" doses if need be (hoping this change of codeine admin helps with her constipation), laxative twice a day for two days... if we get no action then we move to a supository, and chemo until chemo seems to be negatively affecting her quality of life. I hope these changes result in more time out of bed than what we experience today. We were quiet caught off guard since she was just dancing to her new favorite song "Promiscuous Girl" by Nellie Furtado and Timberland when they performed for the Teen Choice awards on Sunday night. We've been told it can happen this quick but still hard to get your head around. Got lots of calls and notes of support to day after yesterdays horrific news. Thanks to each of you. It is truly what refills our tanks to take on another day in our less than idea world. Let's hope the new med schedule is a hit.
Tomorrows a new day.
Les

No Trial for Us

2006-08-22T07:21:00.000-04:00

Hi Everyone,

Thank-you for all your prayers over the last little while. I know everyone has been praying extra hard that a phase one trial would end up being our miracle but it seems as though it's not meant to be. Yesterday, the hospital was once again long and physically/mentally exhausting. I wanted to update last night for all of you who were anxious for results but I was just too empty. Grace's CT Scan showed a 25% increase in the size of the tumour. Collectivly (all 5 locations) probably add up to the size of a large grapefruit. Although the doctors felt that its growth has slowed (they were expecting a 50% increase in size due to what they saw in the first 8 weeks and given it has been another 4) it's growth has still proven to be uncontrollable. The doctors were unsure wether the VP16 (oral chemo we have been giving her by G tube) is effective or not. The slowing of growth may just be a characteristic of the tumour or it may be the effectiveness of the VP16. As a result, it was solely our decission whether or not we should do another round. Ian and I have decided to do another round just incase it is the med buying Grace some time. Due to the spread of the disease we are unable to qualify for a phase one trial because you must present with a certain life expectancy prior to entering the trial that Grace would be lacking. Phase one's also have not presented a cure for 25 years since a new drug was introduced for prostate cancer. Since then they have simply extended the life expectancy of participants (often with sever side effects) by days or weeks. Grace has suffered enough. So after having consulted with Toronto, Hamilton, L.A, Memphis and Chicago our dream has officially come to an end. We will keep Grace at home, surrounded by the people and things that she loves until we loose her to this horrific disease. Again, thanks to everyone for your support. It is what makes this nightmare bearable.
Love,
Les

Love,
Les

Cross eyed

2006-08-21T08:22:00.000-04:00

Hi Everyone,

It's Monday, 8am, and after about 6 hours of medicated sleep I find myself sick with anxiety with regards to today's test. I was feeling good about things until yesterday when we noticed that Grace is going cross eyed. What does this mean?? I'm sure nothing good. I doubt it means that the tumour is getting smaller. It was so odd when it happened. I was carrying a load of laundry up from the basement when I heard my mom and Ian discussing that she looked cross eyed. I dropped the load of laundry and with horror dashed over and started abruptly questioning their observation as though they must have been mistaken. After the administration of some pain meds her energy level seemed to return to "normal" but her eye still seemed off. Why was I so shocked? I've been told that she's dying. I'm aware that many children with brain tumours go cross eyed as a result of their disease. Why was I so terribly caught off guard? Once things settled down I went upstairs and tried to digest the events of the past hour. Then I questioned why my phone wasn't ringing off the hook with inquiries about Grace's health? For some reason I felt that everyone should stop what they were doing and acknowledge this devastating change in events. I'm really not sure why I felt like this, she's my baby, no one else's. It just seemed too huge for my sole recognition to be enough. But as the world continued to revolve and people continued with there Sunday afternoon activities, Grace was deteriorating.
L~

CT on Monday

2006-08-18T18:46:00.000-04:00

Hi Everyone,

Sick Kids understood wanting a CT now if we are considering phase one trials. They booked it for Monday at 11am and also informed us that there may be a phase one/two trial here in T.O. that may be of interest to us. So on Monday we are hoping to meet with the Director of Experimental Medicine at Sick Kids as well as have Grace scanned an meet with her Neuro Onc team. I truly hope the VP16 is working for her. Although it is known not to be a cure, it could buy us some time to investigate available trials in more detail. Today we brought Grace to Bronte pool with her friends. She's very moody because of her Dex and had 4 tantrums while we were there. This is hard because her friends don't understand why she is upset. All in all I think it was a good day. At least she got some fresh air. Her Daddy just brought her to the pet store to buy a present for Griffin (our cat). I'm off to put on a load of laundry and damp mop the hardwood.

Everyone have a great weekend.
Love,
Les

Spoke to Chicago

2006-08-17T20:59:00.000-04:00

Hi Everyone,

Just got off the phone with the Scientist from Chicago. There are a few phase one studies that he feels Grace could qualify for. Of course things are not so easy. Grace will have to stay clinically stable without Chemo for 3 weeks prior to being accepted into a trail. These trials are phase one (meaning one step up from mouse medicine) but really what do we have to loose? This doc recommended we get a CT scan ASAP to determine whether the VP16 (chemo Grace is currently on ) is doing anything. If it is he recommends 1 more round of VP16, if it's not we may attempt to keep Grace off of it for 2 more weeks (she's already been off it 1 week as her "rest"week) in order to qualify for a study. We'll be at Sick Kids tomorrow being overbearing, obnoxious parents insisting on an immediate CT scan... we'll see how it goes.

Pray for our baby.
Love,
Les

Chicago?

2006-08-17T13:46:00.000-04:00

Hi Everyone,

After sending the note to Grace's doctor we received an invitation to come into the hospital to speak with them in person. I wasn't really into it because I felt that I was going there to have them tell me in a more politically correct way that Grace is still dying and there was nothing else they could do. Why waste my time?? But I agreed because I truly respect these people who dedicate there whole lives, facing such overwhelming odds, to trying to save the lives of peoples children. I was anxious the whole way there but after popping an Ativan (anti-anxiety med) I was able to sit though another meeting, Ian, myself and a dozen others, explaining why we will most likely be arranging our daughter's funeral sooner as apose to later. Exhausting....... The doctors did agree that Grace is not deteriorating a quickly as they thought and she may have more than the 8 weeks originally granted to us, but for us to be hoping for cure is still unrealistic. As a result we left under the agreement that as long as Grace's blood counts are good on Monday she would be given another round (21 days) of oral VP16 (chemo) and then if she continues to thrive they would at that point scan her because miracles can happen and if we are granted one this is when we would know. Crazy.... sitting around watching you 2 year old thrive while being told she's dying. You'd expect more wouldn't you?? Well we do so we again searched the internet, found a doctor in LA who has successfully treated a 3 year old with ependymoblastoma and contacted him. We heard back from his Fellow (one step down from specialist) today and explained Grace's story. She agreed to forward the info to Dr. Fisher and said there my be a phase one study in Chicago that Grace may qualify for. Again we are filled with hope!

Please continue to pray for our baby.
With Love,
Les

Note to Grace's Doctor

2006-08-15T00:50:00.000-04:00

Hi Everyone,

My sleeping pill is not working tonight. Thought I'd share a note with you that I Emailed to Grace's head doc. Not sure if I have a point or if I should just be doubling up on my meds and accepting fate. Grace was absolutely wonderful today! Here's my note:

Dr. Buffet,

Tonight my mind is racing with the possibility that maybe we have not exhausted all options with regards to Grace’s care. I’m sure naturally all parents of terminally ill children must experience denial of the conclusion that has been dictated to them by poor fate, however as Grace continues to thrive 3 weeks post our discovery of such overwhelming disease, I can’t help but question whether we know for sure that our decision not to continue to fight is sound. In the past Ian and I have trusted and then been disappointed. As you are aware we were told in May 2005 Grace’s tumour was benign and nothing to be overly concerned about and then devastated in October when overwhelming disease was discovered. We were also assured of a benign second biopsy that 6 days later we were then told was malignant. This E mail is not intended to rehash area’s of Grace’s care that could have been more ideal, it is to explain why, based on 1 scan, we are unable to grip the conclusion that’s been guaranteed to us by your team. How do we know that the oral VP16 has not been effective to the point of making surgery once again an option? If surgery becomes an option, how do we know she is unable to handle high dose chemo, at least until radiation could be possible? If this tumour is so rare and so few doctors have experience with it, how do you know this is the time to stop fighting? Please do not only read this Email as a desperate plea from a mom wishing to save her baby, but please read it and truly consider whether every stone has been turned over and we are with out doubt doing the right thing. As Ian and I watched Grace shout “look at me, look at me everybody” as she attempted to stand on her head for the first time tonight, you can imagine why we are unable to believe that she is dying. We are willing to experiment. Please consider further treatment for our daughter.

Respectfully,
Lesley Stanley

Regular day at home

2006-08-14T09:59:00.000-04:00

Hi Everyone,

Well after Dora on Friday and Santa on Saturday, we decided to have a low key day at home on Sunday. My house was a disaster so Nana and Papa came by to entertain Grace while Ian and I started making scenes of the house. It was weird. As Nana and Papa entertained the baby, Ian started to clean the kitchen and I started on the laundry, I kept thinking how nice of a day it was. Just at home doing normal "home" stuff as though Grace were well and we were just a regular family getting ready for a new week. I can't remember when I last felt like that. Nana worked her magic around 3pm and got Grace down for a much needed nap and I insisted Ian nap with her since he's hardly been able to sleep at night. Nana and Papa again were AMAZING rolling up there sleeves and tackling the housework with me. I truly believe my dad has never washed so many dishes in his life and I'm not really sure how he acquired "kitty pan" (litter) duty but he takes good care of Griffin without even being asked at this point even though he claims to hate cats. My mom is my godsend. Getting Grace to eat something other than hotdogs, getting her to brush her teeth, take a bath and some what behave. It just seems that she never runs out of steam, well I know she does but then she just sucks it up and keeps going, she's truly unbelievable. Grace love's her Nana and Papa so much and it's because every interaction they have with her is wrapped in pure, unadulterated love. Even when my mom puts her in the bath when she doesn't want to go, Grace just seems to know that Nana loves me and knows best so I'm not going to fuss. My parents truly amaze me. Thank god for them.

Not sure what were doing this week. We'll keep you posted.

Love,
Les

Busy couple of days.

2006-08-13T11:34:00.000-04:00

Hi Everyone,

On Thurs. I decided that I was not going to send a note in the morning because it seemed as thought the last couple I had sent in the morning were a bit of a waste because everything I suggested that we had planned to do in the day had not happened due to Grace's mood swings. Instead on Thurs I thought I'd start leaving notes in the evening so I could just tell you what had taken place in our day. Unfortunately by the time we get Grace down and finish her two rounds of evening meds (around 11ish), I'm too exhausted to string a sentance together and choose to also try to find some sleep, so we are back to leaving notes in the a.m. Thurs. worked out OK with the photographer coming by the house at 10am to take a couple of pictures of Grace sleeping and then she woke up shortly after that and Andrea (the photographer) continued to snap pictures throughout the morning. The experiance was odd for me. On the Wed night I was having a really hard time, exhausted, empty and despirate just to lay my head down and find peace for a few hours. Ian or course insisted I take a sleeping pill and go up to the spare room to rest... which I did. As a result Ian took care of everything to do with the baby for the entire evening... which is far from easy. 2 sets of meds, constantly preparing very specific meals, sometimes Grace will want veggie soup with only corn and pea's and the letter"O"'s in it... nothing else. And as insaine as this sounds we make it for her. Her Dex causes alot of moodiness and constant hunger.... it's not that her belly is emptying faster it's just that her brain is telling her that her belly is empty. As a result she over eats and cries about "G tube ouching" (the tube that goes directly into her belly from outside ther abdemon). It's kinda a crazy circle of events. But anyways... my point and back to the picture storey. So as a result of Ian taking care of the baby Wed night solo and me being ill, when the photographer showed up to take photos of Grace before rising she was in old peguin jammies, I was in a pair of shorts and and old T shirt of Ian's (no bra, hair in matted mess on top of my head... I guess you could call it a "bun") and there we were having professional photo's taken. I rememeber the first time we went for professional photo's as a family, I even ironed the panty's that went under the dress that Grace wore for the photot's. Oh... how things have changed. Grace was not too keen on the photo shoot thing so we packed up headed to the Depaz's (who had only been home from florida for 7 hours, from 3am to 10am) and continued the shoot there. I think Andrea got some good shoots. We then decided we would bring Grace to the water park that she really enjoyed a couple of weeks ago. We thought that we should stop asking her what she wanted to do (since she was saying 'no' to everything) and just doing. If she enjoyed great, if not we would head home. The water park is in Niagra so we headed out and ended up turning around in Grimsby because Grace said she wanted to go home and see Willie (my mom's dog). On Friday I was nervous about Dora coming because of how moody Grace is but the Depaz kids came over and they all loved it (although Nicky thought her hair was big and scarry and it took her a few minutes to warm up to her). It was really a wonderful afternoon... Thanks so much Gerry, Fiona, friends and Canada's Wonderland who were responsible for making this happen. Now to Xmas yesterday. Many friends and family dropped off gifts... it was truely overwhelmening. Again Grace wanted her friends involved so Friday night the Depaz kids came over and they all hung stockings on our staircase. We don't have a fireplace but Mo explained to all the little ones that that was OK because Santa has a majic key to get into everyone's house who does not have a chimney. We then carried our lite but undecorated Xmas tree up from the basement... which we had plans on decorating but did not due to exhaustion and read Grace a Xmas story before we went to bed. At first Grace and Nicky were nervous when Santa showed up but then warmed up and ended up holaing to the song "Christmas Island" with him... we got a great video. The kids unwrapped gifts for at least an hour then the other "kids" (meaning the husbands/dads) headed out to the driveway to make the movie snow that Grace's godmom Sara had some how got her hands on. Within 1/2 hour the kids were ridding Thomas the Train around a figure 8 track in a winter wonderland. Grace wasn't into the snow and train but for what she didn't get out of it, the neighborhood kids did so again a good decision. Grace and Nicky opted to play in the bubble bath while the other kids played on the train and in the snow. Jen and I went over to get the turkey (cooking at her place) to find it was still frozen in the middle after being in the oven for 5 hours. As a result our Xmas dinner was pizza (leftover from dora lunch) yummy chicken & veggies (chuck droped off for fri. dinner) faihitas (les dropped of for Sat dinner) sheppards pie (lisa made for Sun dinner) mashed potatos, buns and lots of sweets... perfect really. Thank you to everyone for contibuting to our Christmas. We will charish the memories forever. Well I've taken too much time away from my baby... sorry for being out of touch. I'll try to send a quick not every morning.
Love,
Les

Christmas a go... we think.

2006-08-09T13:09:00.000-04:00

Hi Everyone,

Well yesterday we did not get to the pool or to see the fish tank at the Mandarin. She didn't even want to play outside. She was very tired and actually had a 3 hour nap in the middle of the day which she has not done since being out of the hospital. Ian and I had a little cry over this because her palliative care team explained to us that this was a step towards the inevitable. When she woke up from her nap she wanted to play "Happy Meal" which is when she pretends she is working at McDonald's (when in her plastic play house on the front porch) and everyone must pretend to drive up to her window and order a happy meal. She insists that you pay before she gives you your meal (real money) but often when she gives you your change it is more that you gave her in the first place. She then passes you pretend food, says "thank-you" and then closes the shutters of the window. Within seconds she then instructs that its someone else's turn. This continues until Mama, Dada, Papa and Nana have all had a turn. We've explained to her that Griffin and Willie do not like happy meals so she no longer tries to get them to participate. She was then up for going to the "window" for her own happy meal. We all loaded into the van (except for Papa who Grace insists drive his "own car papa") and off we went to Mc D's. About 1/2 way there (3 min drive) she started to fuss to come home. She really finds comfort being at home these days. I imagine there are so many odd things happening with her body that it make her anxious if she is not in familiar surroundings. Once she saw Mc D's she agreed to go through the drive thru for a happy meal but did not eat any of it she just really wanted the Hummer (toy of the week). That lead to a quiet night with Steph and Paul dropping off Xmas gifts and decor for our possible Xmas on Sat as well as giving us big hugs which felt good. We are still hoping for Xmas to be Sat but we'll have to see. Tomorrow we have a professional photographer coming to the park with us to take candid photos and hopefully a family photo. Friday Dora is coming for lunch (thanks Gerry). Again we'll just have to see moment by moment how Grace does and responses to things. In this moment we are feeling strong and starting to get Grace used to the idea of Santa. We've already watched Frosty the Snowman twice today and she has told me that she is a good girl and would deserve presents... She quickly added that Mo, Nicky, Jules and Baby Zen are good too. Ian just came in, she just fell asleep for a nap... again my heart fills with sadness.

Love,
Les

P.S. We are going to try to get her to the hospital just to check her platelets since this is the only thing that they will really respond to if there is a problem.

Every day's a little harder

2006-08-08T13:44:00.000-04:00

Hi Everyone,

Just thought I'd let everyone know that when Grace woke up this morning she crawled up, snuggled in my arms and patted me on the head... like the way she pats our cat, and she said..."ahhh... buv you mama". She's my angle and every day I love her a little more.

Again we will be close to home today. Maybe the pool for a 1/2 an hour if she's up for it. We are also thinking she might like to see the big fish tank at the Mandarin in Brampton. We'll see. Things are no longer day to day but hour to hour for us. Her meds really cause quick shifts in her personality so we'll see.

Grace can't wait to see her friends Mo and Jules on Thurs when they get home from Disney.

Please pray that we are able to control Grace's pain and help her understand what her little body must endure.

Love,
Les

Codeine every 4 hours

2006-08-07T17:40:00.000-04:00

Hi Everyone,

Our weekend has been OK, staying very close to home... play time with Nicky and Paige, playing in the driveway (still no grass) and feeding the ducks at the pond at the end of the street. I finally slept last night which is ironic because it's the first night in the last 7 that I decided not to take a sleeping pill. Grace has been very unsetted (I know it's the Dex but it's still a challenge) and complaining of head and neck pain so we have upped her meds from on demand to scheduled (every 4 hours). I believe we can continue to increase her codeine until it is every 2 hours and then at that point we'd have to change to morphine. Morphine will make her much more tired so we'd like to delay the transition as long as we can. Ian and I have decided general details for Grace's service (still having an issue saying/typing the "F" word). Her palliative care team suggested we do things now while she is still relatively "well". Seems as though organ/tissue donation is out due to how aggressive her cancer is. We will donate her eyes for research. Everything is so unbelievable... I bought a comfy rocking chair today. This was one thing I never splurged on when she was a baby. When we were at the cottage last week, Carly has a great rocker up there and my mom was able to rock Grace asleep every night.... this took some stress out of the "bedtime" routine which we don't seem to have at all. Eventually I believe my mom will stay with us 24/7 to help me with Grace's care. The only thing imaginable that could be worse than our current circumstance would be doing it without the support of my mom, dad and other family and friends that have been so kind. Dinners has begun magically appearing at our door ever evening. This is so wonderful... I brought Grace to the grocery store on Friday and it was terrible. She began complaining of head pain 10min after arrival, I was completely strung out until I got her home and gave her her pain meds. Everything that once seemed simple is so overwhelming for us right now. I've been doing meds for Grace since she's been 15months old but now every med I give her seems to be stepping closer to the inevitable. Thanks so much for you love, support and prayers. I know life has to be easier than this...

Les

Declined by St. Judes

2006-08-05T12:25:00.000-04:00

Hi Everyone,

Grace started doing really well on Wed. so first thing Thurs. morning we consulted St. Judes in the U.S. asking if they would consider continuing her treatment. After reviewing her case the Director of the Brain Tumour Program agreed with how Sick Kids handled her treatment and agreed that nothing further could be done, again we were devastated. We came home Thurs. evening to meet with Grace's palliative Care Team (doc, resident and nurse) here at our home. They explained to us how it would happen and steps we can take to be prepared for the challenges... I will not get into detail because it's just too unbelievable really. We took Grace for a bike ride last night and her daddy brought her to her best buddy's (Nicky) house for some play time. Disney sent Grace a gift and a signed picture from Micky given we had to cancel. Sorry if my messages are getting less frequent and more difficult to deceiver. Things are surreal right now and I'm try to stay in touch without taking anytime away from Grace. This is all so devastating.

Les

Down time in Collingwood

2006-08-02T17:02:00.000-04:00

Hi Everyone,

We are in Collingwood at Mike and Carly's cottage enjoying so downtime. Although Grace is still a night owl her energy level is decreasing and we are just trying our best to enjoy her when she is doing well and take lots of pictures & videos while giving her countless kisses and hugs. Thanks to everyone for there support. We may be home Friday.

Take care,
les

No Disney for us :-(

2006-07-31T18:23:00.000-04:00

Hi Everyone,

Well we did not take the train and stay at the Delta. We decided to go to Great Wolf lodge instead (indoor water park). It was good (Grace loved story time in her jammies in the lobby at 8pm with all the other kids staying at the resort) however the waterpark was too large for Grace to enjoy. The Americana resort is much more her speed. Hopefully we will make it back there. Daddy did however do a great job teaching her how to roll down the hill outside our hotel's sliding door. A couple of times she tumbled head over heals but always recovered and definitely has the grass stained jammies to prove her efforts. Unfortunately, Grace was not doing very well this morning, complaining of head pain as well being very lethargic. We decided to head to Sick Kids for a check up before our trip tomorrow and were now advised that we should not go. Dr. Buffett said Grace may just be having a bad day or she may be deteriorating quicker than anticipated. So instead we came home, left Grace with my parents and Ian and I went to the hospice where we could have Grace spend her final days. After a brief visit we feel strongly that we will keep Grace at home until the end if at all possible. She will be most comfortable here and that is what is most important to us. We are still hoping to have Christmas next week and David (our social worker from the hospital) is trying to set up a private meeting with Dora since Grace's endurance is so unpredictable right now. We may go to Carly's cottage for some quiet time (Nana, Papa included) but other than that we just need to slow things down a bit and see how she responds to the increases in meds that she received today. Please continue to pray that our baby still has some good quality days in front of her and that we are able to manage this possess from home where she is most content. Please also extend your prayer s to the other unwell babies at Sick Kids.

I'll keep in touch,
L~

Keeping busy

2006-07-29T12:46:00.000-04:00

Hi Everyone,
Since receiving our devastating news on Tues. we have been doing our best to fill every moment of Grace's day (and sometimes night since some of the maintenance drugs that she is currently on causes insomnia (& mood swings... what a combo in a 2 year old)) with all the joy and love we can scrap together. Tues and Wed. she has enjoyed dinner, bubble baths and bike rides with her best friends Mo, Jules, Nicky and baby Zen. The hospitality that the Depaz's have extended to us has given us peace in a time of chaos although I'm now afraid that Ian's going to get too used to Jen's good cooking and no longer be as impressed with my as of late efforts in the kitchen. Thurs. morning we headed to Niagara to visit the whales at Marinland and then checked in to the Americanna indoor water park. Grace LOVED the wave pool and triple slide that allowed Mama, Dada and baby to go down together holding hands. We spent about $20 trying to win enough tickets from an arcade game to win Grace a Micky Mouse ring that she spotted in the arcades show case. I'm sure daddy could have own it with $5 but Grace has entered the stage of wanting to do everything herself so Ian and I sat back as she fed coin after coin into the baby Godzilla ball game and pounded the button feverishly in hopes of getting the balls in baby Godzilla's mouth. We then brought her to see the lights on the falls which she wasn't that impressed with since she's never seen a waterfall not illuminated so in her world that is just what they must look like. She told Ian and I that it was a lot of "wawa" (water) and whales must live there for sure. We capped the night off with ice cream and an overpriced in room movie about lions that she watched for 5 min. before dosing off. The next morning after Grace decided to order rice for breakfast, we headed back to the waterpark before having to leave at 12:30 to make our 2:30 apt. at Sick Kids to get clearance for our trip to Disney. Grace enjoyed a lunch of honey dipped timbits and apple juice as Ian and I cringed in the front seat of the car as we hoped that she was not going to barf since she ate them quicker than we could keep track... she didn't! Our visit at the hospital was bitter sweet. After receiving medical clearance to travel with Grace next week for 5 days only we got the ball rolling on booking things. Flights were hard to get so we had to change our travel dates from Mon-Fri to Tues.-Sat. (with hospital clearance of course) and we could not get into the same resort as the Depaz's but got in the one next door. The hospital was able to pay for our 3 day park hopper passes for 3 of the 5 of us so that helped financially. After the good news about being given medical clearance to travel we had my parents take the baby home (no need for her to spend one extra min. in the hospital) and Ian and I stayed behind to meet with the palliative care team. We discussed what organ/tissue from Grace we were able to donate... looks like it may just be her eyes due to the amount of drugs involved in her treatment which have deteriorated the balance of her organs, but Ian and I feel good about donating and will do all we can in this area. When they started discussing guildlines for resuscitation we decided to put that on the back burner until returning from our self created "wish" trip. Last night Grace decided that she wanted to take a bath at 10pm, which lasted until 12 midnight at which point we made popcorn (which she insisted on eating piece by piece with her Dora spoon) and read stories until 1:3am. This is when we find it the hardest. When Grace's meds are giving her boosts of energy when Ian and I are running out of gas. But we make it happen the best we can. She woke up just after 8 and has been ready to "play, play, play" ever since. He daddy has her out for a bike ride right now while I fit in my first shower in a couple days. We are then going to take her for her first train ride (Go train out of Oakville and into Union... if she lasts that long). We may stay at the delta Chelsea tonight and enjoy there pool and children's play area. I'm finding it easier not being at home because when I'm here I'm doing laundry, washing dishes and doing house stuff just because I'm anxious which takes time away from Grace. I found when we were away the last couple of days I could relax more. Thank God for kind words from wonderful friends that give us strength to continue. I know it must be hard for those of you looking to help out to know what to do or what to say. I don't even know what I need done or what I need to hear. This situation is just so impossible on so many different levels. But again thank god for the kind words, thoughts and prayers of those who are special to us... you give us strength.
Gotta fit that shower in.
Les

P.S. upcoming activities: Return from Disney on the 5th. Aug. 10th we have a professional photographer coming to follow us for the day to do a photo documentary of "a day in the life of Grace". On Aug. 12 we are having Christmas for Grace. We are lining the house in lights, putting up a tree, cooking a turkey dinner, and getting Santa to visit. Christmas doesn't have to be in December right?? We will be visiting Dora at wonderland, going to the great wolf lodge water park and having molds done of her hands and feet while painting pottery... I'm just in the processes of booking this now. BIG THANKS TO CAROLINE used connections to arrange(what I hear is the impossible) for Grace....breakfast with Cinderella at Disney. If anyone has heard of another incredible experiences for 2 year olds.... let us know (Email is best).

Take good care.
Love,
Les

Our dream is over

2006-07-25T23:21:00.000-04:00

Hi Everyone,

Today when we went to the hospital for Grace's MRI we were informed that after further examination of Grace's CT Scan from yesterday that her tumour had not only returned but aggressively spread throughout the left lobe of her brain. Since 100% recection is impossible, and radiation will only be successful with aggressive recection and Grace is no long a candidate for high dose chemo, our dream for a cure for Grace's condition has come to an end. The doctors feel that we have aprox. 2 months left with our precious angle. We are devastated, empty and exhausted after haven fought so hard and watched our baby suffer so much only to reach this unbelievable conclusion. We will spend our final weeks with our baby doing what ever her heart desires (which may include Disney next week if the doctors give us clearance on Friday). We are now praying for Grace to enjoy her last days with us on earth, free of pain and to be able to pass with dignity and peace. We love our sweet, sweet, baby Grace with every stitch of our being and can not imagine our world without her sweet voice calling Mama, Dada, Nana, Papa... RU??? or without her less than challenging way of playing "hide and seek" where she hides in the exact same spot everytime and comes running out to tell you where she is as soon as you have finished counting. Our dreams to bring her to her first day of school, teach her how to skip rope and peddle a bike, as well as ever other life experience we all take for granted are over. We are devastated.

Grace relapses

2006-07-24T16:44:00.000-04:00

Hi Everyone,

Ian and I noticed that the mobility of Grace's right arm was decreasing on Saturday so we contacted Sick Kids. Since she had a MRI scheduled for Tues. we were advised to keep her at home until then unless her condition worsened. This mornining (Monday) Grace vomited. I called the hospital and we were advised to come in. After a breif exam Grace was sent down to CT scan where they discovered Graces tumour has grown back. Although just 8 weeks ago Graces seemed clear of disease, today a tumour, again the size of an orange was discover in the same location where it was first discovered. We are devistated, overwhelmed and confused as to why things have gotten so bad so quickly once again. We've been sent home with some new precriptions until tomorrow when we return for her MRI. After her MRI we will meet with the Neuro surgery team to find out wether or not they are able to remove this tumour once again. At this point our only option is surgery followed by radiation. Grace's bone marrow is still too comprimised from her transplant to endure the chemo that was successful in keeping her tumour under control. We are devistated... our baby is happy, playing hide and seek and belly laughing as she pretends to drop things that should not be dropped. She loves to dance and sing and play with her friends Mo, Jules, Nicky and baby Zen. She loves visits from her Nana and Papa and her favorite treat is "ice cream from the window" (drive thru). How can this wonderful, most brillant addition to our world be in such risk to be taken from us??? Please pray that our baby be granted good health. I can't imagine a world with out her. We are desperate for a solution, begging to one of the "lucky ones". Please pray...

With love,
L~