I have a friend I met through my crazy cancer journey, her name is Bekah and truly - she is an amazing person. Bekah and I have never met in person, yet i do consider her a friend. We support each other on several on line chat sites and through facebook and for this and her friendship i am thankful. Bekah is a beautiful writer and also keeps a blog which I absolutely love to read. I`d love for my blog readers to check hers out too.
I am supposed to get scan results today ( so the last week has been very difficult on me)...Bekah wrote on this topic too and honestly I could not have explained the feelings around scan time any better...check out her post from August 13 - ``Inside the mind``. www.truebeautyneverhurries.blogspot.com
I have alot to update the blog with, but honestly just have not had the spirit or energy to write. I promise I will update on the cancer front, with O`Neil adventures and pics of the fam as soon as I can:)
In the meantime, I can not express enough how thankful I am and grateful I am for the support on all levels I have received from SO many xoxo
Tuesday, September 06, 2011
Wednesday, June 15, 2011
On the Cancer Front
I was accepted into the (SGN-35 http://www.seagen.com/clinical_trials_sgn35.shtml) study in Rochester NY almost 9 weeks ago. We are thrilled. We travel to Rochester every 21 days to receive the treatment. The drive is just under 5 hours and quite pleasant.
The study I take part in is at the Cancer center located at the (Strong Hospital in Rochester http://www.urmc.rochester.edu/cancer-center/) and is a very beautiful facility. I love it because when I go there it doesn`t feel like I am in a hospital and doesn`t have that ``hospital smell``...The staff are so friendly and efficient and `customer service`oriented...I guess when they have to answer to YOU the paying customer they care more??? Anyway - that (comparisons of Canadian health care and US health care) is a discussion for another time...they both have their pros and cons.
My next treatment is on Tuesday. I suspect in the next month or two I will have another Pet Scan to compare to the base scan to ensure the drug is having a positive effect. I am confident that it is!
Most know that this treatment out of Rochester is at an out of pocket cost of an approximately $2400.00 per trip which is every 3 weeks (This number based on all itemized bills received now for treatment no. 1). This is more than we originally projected...It feels overwhelming at times that my life is at such a cost.
That said, we have so much to be grateful and thankful for. We are surrounded my amazing support on all levels (moral and emmotional support, prayers, positive thinking, monetary support etc)...This coming from our family, friends, friends of friends and even strangers!
In order to help us accept monetary support in a proper way my parents have opened medical trust fund which helps us pay for Medical costs and treatment associated costs which are not covered by any tpe of provincial coverage or private insurrance coverage.
The Medical trust is at the TD Canada Trust and if you are interested in Donating directly to the trust you can do so at your local branch (and can email my parents or myself for the account details). Cheques can also be made out to Mellen Light with a note in the Re: line that says Stacy`s Medical Treatment Fund and mailed to her Ottawa address (also please email one of us if you need the address).
Additionally a PayPal account has been set up for those who prefer to donate in this manner. The funds from the Paypal account are regularly transfered to the trust account.
Because I have access to email address when you donate through Paypal, I have been able to acknowledge and thank each individual personally, however those who donate at the bank I only see the amount and branch number and not who it came from so please accept my sincere thank you here (or email me if you want me to know you donated).
I`d like to say thank you SO much to my very close and longtime friend Wanda Capstick who set up the Support For Stacy blog Site (with donation button)! The link to this site can be found here: http://www.supportforstacy.blogspot.com/ Here she tells my Story with Hodgkin`s Disease beautifully and clearly has touched the hearts of many. I`d also like to thank her for putting together the Support for Stacy Facebook Page that can be found here: http://www.facebook.com/?sk=fe&ap=1#!/home.php?sk=group_161579263906502&ap=1
The access to social media has been amazing and key in helping us with the costs of the lastest treatment. The ability to spread the word this way has allowed many to donate, support us emmotionally and event set up a number of fundraising events for the Support Stacy Cause! Thank you again Wanda...You too are an amazing woman your friendship means the world to me and your support through this journey is appreciated.
Another one of my very close and longtime friends Andrea Taylor is organizing a huge garage sale event in Barrie Ontario on June 18th and all proceeds are going to the Support stacy Cause. She has had alot of help from her immediate family, her wonderful Sister in Law Jenny and several of her friends there with the collection and storage of items, spreading the word and hosting the actual event! Event details can be found here: http://www.facebook.com/?sk=fe&ap=1#!/event.php?eid=163811540347797 In addition to the Garage sale event, Andrea, Brad, Luke and Zack have been collecting pledges for the Support Stacy Cause and should they reach their goal, they will all four be shaving their heads at the end of the garage sale!!! Andrea is a very brave woman, but we already know how beautiful she looks bald as she shaved her head back in 1999 when i lost my hair then durring treatment! Go Andrea! Andrea had posted this garage sale event on the Snap Barrie page and was contacted yesterday by a Barrie Tv station who will be promoting the garage sale and the Support Stacy cause live on thursday- Exciting! Andrea is also hosting another event in which a portion of the proceeds will go to the Support Stacy Cause. She is hosting an Epicure and Jewllery Party and the event details can be found here: http://www.facebook.com/?sk=fe&ap=1#!/event.php?eid=193555767362171Thank you for all of this Andrea (and family and friends)!
Also on June 18 is a BBQ and Horseshoe Tournament being organized and hosted by 3 more of my very close girlfriends, The Duvall Sisters, Shawnette, Krista and Shannon! These 3 girls are truly amazing - they are so thoughtful, always sincere and honestly always throw great theme parties!!! Please check out and support this event by going...details can be found here: http://www.facebook.com/?sk=fe&ap=1#!/event.php?eid=157437890988516 This event promises to be an awesome time - Please attend if you can! Thank you so so so much Shawnette, Krista and Shannon xo
Here in Ottawa our friend Lisa Shail is generously donating her May and June Cheques earned from her home business. She is so amazing to do this and this action testifies to her beautiful and generous personality. You can visit her Arbonne website here: http://beautifulglow.myarbonne.ca/ Please look and order!!! Lisa is very confident in her products and I am sure you will be too if you give it a try! Thank you so much Lisa!
My beautiful sister Theresa in Wyoming state consults for Avon and will be donating a portion of the proceeds to the Support Stacy Fund! Casper Wyoming peeps - Now is the time to get in those Avon Orders!!! Thank you T for all of your support, I love you xo
I also want to thank my close and longest friend (28 years and counting) friend Kim Walsh who organized a bake sale at her daughters dance recital in order to raise funds for the Support Stacy cause! You are always so creative and thoughtful and I thank you so much!
A huge thank you need to go out to Melanie , Jane, Angie and Angela (friens and co-workers at the downtown lawfirm that I worked at). They organized a very successful bake sale and 50/50 draw and the funds raised are going directly to the Support Stacy fund. I of coarse also thank everyone at GLH who helped these fine ladies and came out to support the event. I am so touched!
Longtime friend and extremely talented Ottawa area photographer Brad Bouzane donated his time and services to our family which enabled us to enjoy a very fun family photo shoot last week. He got some amazing shots and captured all of our personalities beautifully - especially my children. These photo memories are amazing and we are so thankful that you offered to do this for us! Please check out this brilliant photographer at http://www.bouzane.ca/ Thank you again Brad!
We`d also like to say thank you to Eliane who is the Special Events Coordinator Public Affairs and Publishing for the Museum of Civilization and War museum here in the national capital...She heard our story and sent our family of four free passes to each of the museums. Thank you!
I can honestly say that we are so blessed for the support on all levels from family, friends and strangers alike. Thank you to everyone who has touched our lives in one way or another! I know i have been put on a number of your nightly prayers and several church prayer lists - thank you...Also we still get the odd cards in the mail and meals in our freezer which is also wonderful!
Now honestly, I know that i have probably forgotten someone in my list of Thank you`s...Please know that we are appreciative and that if I did forget to mention something specific it is just an oversite and i appologize - please email me if I did forget :)
I will continue to make updates on the cancer front when I can and will continue to post new pics of the family as often as time permits - my 2 little ones keep me very busy!
Love the O`Neil`S xoxoxo
The study I take part in is at the Cancer center located at the (Strong Hospital in Rochester http://www.urmc.rochester.edu/cancer-center/) and is a very beautiful facility. I love it because when I go there it doesn`t feel like I am in a hospital and doesn`t have that ``hospital smell``...The staff are so friendly and efficient and `customer service`oriented...I guess when they have to answer to YOU the paying customer they care more??? Anyway - that (comparisons of Canadian health care and US health care) is a discussion for another time...they both have their pros and cons.
My next treatment is on Tuesday. I suspect in the next month or two I will have another Pet Scan to compare to the base scan to ensure the drug is having a positive effect. I am confident that it is!
Most know that this treatment out of Rochester is at an out of pocket cost of an approximately $2400.00 per trip which is every 3 weeks (This number based on all itemized bills received now for treatment no. 1). This is more than we originally projected...It feels overwhelming at times that my life is at such a cost.
That said, we have so much to be grateful and thankful for. We are surrounded my amazing support on all levels (moral and emmotional support, prayers, positive thinking, monetary support etc)...This coming from our family, friends, friends of friends and even strangers!
In order to help us accept monetary support in a proper way my parents have opened medical trust fund which helps us pay for Medical costs and treatment associated costs which are not covered by any tpe of provincial coverage or private insurrance coverage.
The Medical trust is at the TD Canada Trust and if you are interested in Donating directly to the trust you can do so at your local branch (and can email my parents or myself for the account details). Cheques can also be made out to Mellen Light with a note in the Re: line that says Stacy`s Medical Treatment Fund and mailed to her Ottawa address (also please email one of us if you need the address).
Additionally a PayPal account has been set up for those who prefer to donate in this manner. The funds from the Paypal account are regularly transfered to the trust account.
Because I have access to email address when you donate through Paypal, I have been able to acknowledge and thank each individual personally, however those who donate at the bank I only see the amount and branch number and not who it came from so please accept my sincere thank you here (or email me if you want me to know you donated).
I`d like to say thank you SO much to my very close and longtime friend Wanda Capstick who set up the Support For Stacy blog Site (with donation button)! The link to this site can be found here: http://www.supportforstacy.blogspot.com/ Here she tells my Story with Hodgkin`s Disease beautifully and clearly has touched the hearts of many. I`d also like to thank her for putting together the Support for Stacy Facebook Page that can be found here: http://www.facebook.com/?sk=fe&ap=1#!/home.php?sk=group_161579263906502&ap=1
The access to social media has been amazing and key in helping us with the costs of the lastest treatment. The ability to spread the word this way has allowed many to donate, support us emmotionally and event set up a number of fundraising events for the Support Stacy Cause! Thank you again Wanda...You too are an amazing woman your friendship means the world to me and your support through this journey is appreciated.
Another one of my very close and longtime friends Andrea Taylor is organizing a huge garage sale event in Barrie Ontario on June 18th and all proceeds are going to the Support stacy Cause. She has had alot of help from her immediate family, her wonderful Sister in Law Jenny and several of her friends there with the collection and storage of items, spreading the word and hosting the actual event! Event details can be found here: http://www.facebook.com/?sk=fe&ap=1#!/event.php?eid=163811540347797 In addition to the Garage sale event, Andrea, Brad, Luke and Zack have been collecting pledges for the Support Stacy Cause and should they reach their goal, they will all four be shaving their heads at the end of the garage sale!!! Andrea is a very brave woman, but we already know how beautiful she looks bald as she shaved her head back in 1999 when i lost my hair then durring treatment! Go Andrea! Andrea had posted this garage sale event on the Snap Barrie page and was contacted yesterday by a Barrie Tv station who will be promoting the garage sale and the Support Stacy cause live on thursday- Exciting! Andrea is also hosting another event in which a portion of the proceeds will go to the Support Stacy Cause. She is hosting an Epicure and Jewllery Party and the event details can be found here: http://www.facebook.com/?sk=fe&ap=1#!/event.php?eid=193555767362171Thank you for all of this Andrea (and family and friends)!
Also on June 18 is a BBQ and Horseshoe Tournament being organized and hosted by 3 more of my very close girlfriends, The Duvall Sisters, Shawnette, Krista and Shannon! These 3 girls are truly amazing - they are so thoughtful, always sincere and honestly always throw great theme parties!!! Please check out and support this event by going...details can be found here: http://www.facebook.com/?sk=fe&ap=1#!/event.php?eid=157437890988516 This event promises to be an awesome time - Please attend if you can! Thank you so so so much Shawnette, Krista and Shannon xo
Here in Ottawa our friend Lisa Shail is generously donating her May and June Cheques earned from her home business. She is so amazing to do this and this action testifies to her beautiful and generous personality. You can visit her Arbonne website here: http://beautifulglow.myarbonne.ca/ Please look and order!!! Lisa is very confident in her products and I am sure you will be too if you give it a try! Thank you so much Lisa!
My beautiful sister Theresa in Wyoming state consults for Avon and will be donating a portion of the proceeds to the Support Stacy Fund! Casper Wyoming peeps - Now is the time to get in those Avon Orders!!! Thank you T for all of your support, I love you xo
I also want to thank my close and longest friend (28 years and counting) friend Kim Walsh who organized a bake sale at her daughters dance recital in order to raise funds for the Support Stacy cause! You are always so creative and thoughtful and I thank you so much!
A huge thank you need to go out to Melanie , Jane, Angie and Angela (friens and co-workers at the downtown lawfirm that I worked at). They organized a very successful bake sale and 50/50 draw and the funds raised are going directly to the Support Stacy fund. I of coarse also thank everyone at GLH who helped these fine ladies and came out to support the event. I am so touched!
Longtime friend and extremely talented Ottawa area photographer Brad Bouzane donated his time and services to our family which enabled us to enjoy a very fun family photo shoot last week. He got some amazing shots and captured all of our personalities beautifully - especially my children. These photo memories are amazing and we are so thankful that you offered to do this for us! Please check out this brilliant photographer at http://www.bouzane.ca/ Thank you again Brad!
We`d also like to say thank you to Eliane who is the Special Events Coordinator Public Affairs and Publishing for the Museum of Civilization and War museum here in the national capital...She heard our story and sent our family of four free passes to each of the museums. Thank you!
I can honestly say that we are so blessed for the support on all levels from family, friends and strangers alike. Thank you to everyone who has touched our lives in one way or another! I know i have been put on a number of your nightly prayers and several church prayer lists - thank you...Also we still get the odd cards in the mail and meals in our freezer which is also wonderful!
Now honestly, I know that i have probably forgotten someone in my list of Thank you`s...Please know that we are appreciative and that if I did forget to mention something specific it is just an oversite and i appologize - please email me if I did forget :)
I will continue to make updates on the cancer front when I can and will continue to post new pics of the family as often as time permits - my 2 little ones keep me very busy!
Love the O`Neil`S xoxoxo
Thursday, June 09, 2011
Sunday, May 29, 2011
One of our trips to Perth (Maple fest)
Once we had children, especially, we started several annual ``traditions``...Going to Maple fest in Perth is one of them. Highlights include spending time with the Devlin`s, pancake breakfast,music, shopping, more food, kids activities, small petting zoo etc. It is always fun, the girls love it and so do we. I didn`t post pics of the activities this year but just a few quick shots of our little fam aside the big ben statue...Already looking forward to next year!
The mommy and Daddy...
Baby Alexia...
...big girl Olivia
The mommy and Daddy...
Baby Alexia...
...big girl Olivia
Tuesday, May 03, 2011
On the cancer front...
I do realize it has been sometime since I posted an update on the cancer front. Looking back I haven`t written anything since September and December of last year. Mainly I was waiting for my first official post treatment scan so that i could forget all the difficulties in my recovery and have a brilliant update for you all declaring that the SCT worked and that I was in remission.
Sadly, that is not the post I will be making today. At the end of March I suddenly had a pain (and lump in the nodes under my left arm)...it literally came out of nowhere and to be honest i didn`t think too much of it because nodes associated with Hodgkin's disease are not typically painful. Regardless I mentioned it to my doctors and was sent for an ultrasound and biopsy of the enlarged nodes.
A week later I received the result which had come back positive for lymphoma. Disappointing and upsetting to say the least. I figured that was a call i would get one day, but i figured it would be a number of years down the road...not 6 months post transplant and 3 months post radiation. Anyway, the biopsy did confirm lymphoma and subsequent scan showed stable disease in some areas, disease progression in other areas and some new disease as well.
This has been an incredibly overwhelming time for me. This disease is not something that is going away. Over the last 16 years since my initial diagnosis i have been through standard first and second lines of treatment...and then last year a 3rd line of treatment which was a second auto SCT (still a very risky proceedure). Now i am just trying to find ways (treatments) that are not super-toxic and that can manage the disease for as long as possible.
The option I have chosen next unfortunately takes me out of the country every 3 weeks (for up to a year) and will be a huge finacial burden on our family. This is a trial drug which is currently waiting FDA approval in the US. The drug cost for now is covered under a compassion care program, but the hospital adminstration fees are through the roof and not covered by any provencial or private insurance plans...as well travel, lodging and gas...FUN. It`s called SGN-35 (from seatle genetics). The closest facility offering this trial program is in Rochester NY. I am currently waiting to be contacted by them for a consultation, hopefully to be accepted into the program without delay and begin the treatments asap. Hopefully I am able to get in several infusions before the drug is FDA approved because at that time unless the drug company brings the drug on the trial phase to Canada, I won`t have access to it anymore. Apparently it is showing very promissing results, and so I keep ``hope``.
In a nutshell, that`s about where we`re at on my cancer front. I put off this update long enough. I will try to update these sort of details more frequently in combonation with the photos i try to post regularly.
-Stacy :)
Sadly, that is not the post I will be making today. At the end of March I suddenly had a pain (and lump in the nodes under my left arm)...it literally came out of nowhere and to be honest i didn`t think too much of it because nodes associated with Hodgkin's disease are not typically painful. Regardless I mentioned it to my doctors and was sent for an ultrasound and biopsy of the enlarged nodes.
A week later I received the result which had come back positive for lymphoma. Disappointing and upsetting to say the least. I figured that was a call i would get one day, but i figured it would be a number of years down the road...not 6 months post transplant and 3 months post radiation. Anyway, the biopsy did confirm lymphoma and subsequent scan showed stable disease in some areas, disease progression in other areas and some new disease as well.
This has been an incredibly overwhelming time for me. This disease is not something that is going away. Over the last 16 years since my initial diagnosis i have been through standard first and second lines of treatment...and then last year a 3rd line of treatment which was a second auto SCT (still a very risky proceedure). Now i am just trying to find ways (treatments) that are not super-toxic and that can manage the disease for as long as possible.
The option I have chosen next unfortunately takes me out of the country every 3 weeks (for up to a year) and will be a huge finacial burden on our family. This is a trial drug which is currently waiting FDA approval in the US. The drug cost for now is covered under a compassion care program, but the hospital adminstration fees are through the roof and not covered by any provencial or private insurance plans...as well travel, lodging and gas...FUN. It`s called SGN-35 (from seatle genetics). The closest facility offering this trial program is in Rochester NY. I am currently waiting to be contacted by them for a consultation, hopefully to be accepted into the program without delay and begin the treatments asap. Hopefully I am able to get in several infusions before the drug is FDA approved because at that time unless the drug company brings the drug on the trial phase to Canada, I won`t have access to it anymore. Apparently it is showing very promissing results, and so I keep ``hope``.
In a nutshell, that`s about where we`re at on my cancer front. I put off this update long enough. I will try to update these sort of details more frequently in combonation with the photos i try to post regularly.
-Stacy :)
Monday, May 02, 2011
The O`Neil`s - Easter Weekend
A perfect action shot of the girls:
Pretty Olivia!
Pretty Alexia!
Family Pic!!!
Pretty Olivia!
Pretty Alexia!
Family Pic!!!
The Mr. and Mrs....
...hubby took me away on an overnight!!! A fun train ride, cool hotel, a lovely supper and a glorious sleep in! Happy birthday to ME!
Thursday, April 21, 2011
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