Well, time continues to fly by and it is only on key dates and memory triggering moments that we realize it has been 448 days since we lost our daughter Supatra to this ugly cancer called DIPG. Since 16 July 2013 we have been living in our new city of Kingston Ontario and in our new house. We are finally starting to settle in and finish up redecorating and doing some minor renovations with this house. We are also starting to feel like a family again although our hearts remain broken and Supatra's little brother Jason still feels the pain of being alone. Since returning from England we never felt at home in our temporary rental accommodations in Ottawa and it always felt like we didn't belong or that somehow we were in transition. It was not the people, as we made some good friends there and we remained in touch with those Canadians that we met in England but it was the house that we were occupying. Now that we are settling in to our home in Kingston we feel much better although there is still something that is missing - Supatra. I think she would love our new home and she would be so happy here. We just hope that her spirit has followed us from England to Ottawa and now on to Kingston and that she is not missing us too much. I have yet to really dream of my little girl and I don't know why she does not visit me. Sometimes I think that maybe she is still in England joyfully watching her friends play and grow up.
We have recreated Supatra's room almost the way she left it and light a candle for her nightly. Her room will stay as is until her baby sister is old enough to take it over. Then all of Supatra's toys and other stuff will belong to Surina except for a few cherished things that we will keep safely stored until our children are old enough to appreciate the significance of them.
Surina is growing up fast. At five months old she is now happily screeching, laughing and trying to make various sounds. She smiles at everyone she sees and her eyes sparkle. She is also beginning to teeth and she tries to role over and push herself up on her elbows when she wants to be picked up. We think she looks very much like Supatra, except Supatra had slightly more chubbier cheeks. We also think she will start walking at an early age and skip the crawling part just like her bigger sister did.
Jason has been a little handful but deserves our empathy as he continues to struggle without his big sister. He lost his sister and then the following month lost his friends when we moved back to Canada. He was just starting to get to know a few kids on our street in Ottawa when we were forced to move again. So this has been a very difficult 2 and a half years for him. He has already made a friend with a boy next door and we hope that once he starts junior kindergarten this September he will make more friends. There are two great parks near our house so that is another venue for him to meet other kids.
I continue to follow some DIPG groups but find it more and more difficult to deal with the knowledge that everyday new kids are being diagnosed with DIPG. So many parents going through this terrible journey and reading about their status, especially those whose kids only have weeks to live is hard on me. I wanted to start a charity here in Canada to honor Supatra and help fund research for this particular type of tumour but I have yet to find the energy nor time to do this. I still hope that one day I will have the time to put some energy into this project and help in some small way.
My work at the Ottawa Buddhist temple gardens continues although at a slower pace now that I am in Kingston. I managed to plant 14 pink blossom trees along the side of the driveway on either side of the garden entrance and dig out about 300metres of pathway. It is starting to look really nice and next year the plan is to rework the bridge over the pond and emplace several memorial park benches. I will try to post some pictures next time. Speaking of park benches, our close knit community of friends in Milton, Cambridgeshire England finally received Supatra's memorial bench. The bench has been placed next to the playground she often played at just outside of Cygnets. I am sure she is resting her angel behind on it right now watching the children play. Thank you to our friends in Milton who raised the funds and made it happen. We hope to be able to come for a visit in a few years to see Supatra's memorial tree at her school and sit on her bench.
So, we are home now and hope to live here for at least 4-6 years, if not longer. I will also be retiring from the Canadian Armed Forces in the next 3-4 years and it looks like we may stay in the Kingston area. We have a home, we have two wonderful children, our great friends but there is always something missing, always something quite not right. And what is not quite right is that we are living without our precious little girl Supatra who we love and miss so much.
Supatra's Dad
Jorg
Wednesday, 28 August 2013
Saturday, 6 April 2013
A Little Update
Hello Everyone,
Not sure if anyone is still checking in here from time to time and it has been a rather long time since our last post. A lot has happened since October 2012 but one thing remains constant and that is the hole left in our lives with the passing of Supatra. There is not a day that goes by where I don't think of her or shed a tear for her. It probably does not help that we have here photos and things everywhere to remind us of her but I also can not bring myself to packing her things away as to me it would be like trying to forget she ever existed. I am so sad all the time yet there are times at work I have to forgo my sadness for the sake of those around me and pretend to be OK.
One bright spot in our lives finally arrived on the 12th March 2013 with the arrival of Surina, the little sister that Supatra always wanted. We hope she can see her, knows that she is now here with us, and that Supatra will be her guardian angel. Jason is very excited but I think he is a little disappointed that he can not play with his new sister just yet. He has been superb with Surina and is very gentle with her.
I am still in the process of finishing my French language course and was recently informed that we will have to move again in order for me to take on a new job in Kingston Ontario. It is not what we had hoped for considering we have not even been here for a year, just having come back from England and of course Jason will have to start all over again making new friends and getting used to his new surroundings. However, with luck we will be in Kingston for at least three years and maybe longer.
These last five months have been a first of many usually joyous occasions. Our first Halloween, Christmas, Mine and Punny's birthdays, Valentines, Supatra's birthday, and Easter without Supatra here. In the past we could always count on getting a gift or a hand crafted card from her on these occasions. We were always so appreciative of her thoughtfulness and skill in her crafts and ability to draw. Her cards and gifts would always come with a big hug and a heart melting smile...I miss them so much. She was and is so special to us. We often see pictures of her Friends in England and wonder what Supatra would be like now. How much taller would she be? How beautiful she would look. And then we think about Surina and wonder what it would have been like to have Surina with us while Supatra was still here. We know she would have been such a great big sister to Surina just like she was to Jason. Jason, whom she once said she wanted to marry and have children with. She loves her little brother.
This week has left me reflecting on Supatra and what could have been had she not fallen ill as we approached her birthday. We were so warmed by the knowledge that her school friends had not forgotten her as they held a crazy hat day on the 28th March to raise money for Brain Tumour UK in memory of Supatra. Additionally, her friends, their parents and the staff at Milton CE Primary school remembered her on her birthday by laying some flowers at her memorial tree in the school yard and releasing eight balloons representing the age she would now be. We too performed a little ceremony in Ottawa at a Buddhist Temple and also released eight balloons. Supatra's Oma and Aunt did something in Victoria Canada and an old family friend in Australia also took some time out to remember her. Finally, we also know that the parish in Milton held a special prayer for her on Good Friday - Thank you Sue Nunn. Its so good to know that she has not been forgotten and we are so appreciative of everyone that helped and participated remembering our little princess. Below are some pictures of these events.
I would also like to mention that our friend Natalie Gunner will be running the Brighton Marathon on 14th April 2013 to raise money for the Brain Tumour UK charity. Thank you Nat and best of luck, I know you can do it. If you can, please donate to the cause as Brain Tumour UK is doing good work in trying to find a cure for brain tumours which includes some DIPG research as well. You can donate at the following UK link:
https://mydonate.bt.com/fundraisers/nataliegunner1#.UVmMKBevJV8.facebook
xx Jorg
Love you and always in my thoughts Supatra!
Our Buddhist ceremony on Supatra's birthday
Releasing Balloons for Supatra
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Friends in England remembering Supatra on her birthday at her school. Thank you to everyone that participated.
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Not sure if anyone is still checking in here from time to time and it has been a rather long time since our last post. A lot has happened since October 2012 but one thing remains constant and that is the hole left in our lives with the passing of Supatra. There is not a day that goes by where I don't think of her or shed a tear for her. It probably does not help that we have here photos and things everywhere to remind us of her but I also can not bring myself to packing her things away as to me it would be like trying to forget she ever existed. I am so sad all the time yet there are times at work I have to forgo my sadness for the sake of those around me and pretend to be OK.
One bright spot in our lives finally arrived on the 12th March 2013 with the arrival of Surina, the little sister that Supatra always wanted. We hope she can see her, knows that she is now here with us, and that Supatra will be her guardian angel. Jason is very excited but I think he is a little disappointed that he can not play with his new sister just yet. He has been superb with Surina and is very gentle with her.
I am still in the process of finishing my French language course and was recently informed that we will have to move again in order for me to take on a new job in Kingston Ontario. It is not what we had hoped for considering we have not even been here for a year, just having come back from England and of course Jason will have to start all over again making new friends and getting used to his new surroundings. However, with luck we will be in Kingston for at least three years and maybe longer.
These last five months have been a first of many usually joyous occasions. Our first Halloween, Christmas, Mine and Punny's birthdays, Valentines, Supatra's birthday, and Easter without Supatra here. In the past we could always count on getting a gift or a hand crafted card from her on these occasions. We were always so appreciative of her thoughtfulness and skill in her crafts and ability to draw. Her cards and gifts would always come with a big hug and a heart melting smile...I miss them so much. She was and is so special to us. We often see pictures of her Friends in England and wonder what Supatra would be like now. How much taller would she be? How beautiful she would look. And then we think about Surina and wonder what it would have been like to have Surina with us while Supatra was still here. We know she would have been such a great big sister to Surina just like she was to Jason. Jason, whom she once said she wanted to marry and have children with. She loves her little brother.
This week has left me reflecting on Supatra and what could have been had she not fallen ill as we approached her birthday. We were so warmed by the knowledge that her school friends had not forgotten her as they held a crazy hat day on the 28th March to raise money for Brain Tumour UK in memory of Supatra. Additionally, her friends, their parents and the staff at Milton CE Primary school remembered her on her birthday by laying some flowers at her memorial tree in the school yard and releasing eight balloons representing the age she would now be. We too performed a little ceremony in Ottawa at a Buddhist Temple and also released eight balloons. Supatra's Oma and Aunt did something in Victoria Canada and an old family friend in Australia also took some time out to remember her. Finally, we also know that the parish in Milton held a special prayer for her on Good Friday - Thank you Sue Nunn. Its so good to know that she has not been forgotten and we are so appreciative of everyone that helped and participated remembering our little princess. Below are some pictures of these events.
I would also like to mention that our friend Natalie Gunner will be running the Brighton Marathon on 14th April 2013 to raise money for the Brain Tumour UK charity. Thank you Nat and best of luck, I know you can do it. If you can, please donate to the cause as Brain Tumour UK is doing good work in trying to find a cure for brain tumours which includes some DIPG research as well. You can donate at the following UK link:
https://mydonate.bt.com/fundraisers/nataliegunner1#.UVmMKBevJV8.facebook
xx Jorg
Love you and always in my thoughts Supatra!
Our Buddhist ceremony on Supatra's birthday
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| Surina Supatra's baby sister |
Releasing Balloons for Supatra
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Friends in England remembering Supatra on her birthday at her school. Thank you to everyone that participated.
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| Balloons flying over Milton, UK |
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| Beautiful Misa with her "crazy" hat with Supatra's name on it! |
Friday, 26 October 2012
Supatra will finally get her Sister!
Hello everyone,
We are holding up OK but continue to have our bad days and I personally continue to re-live the last few weeks of Supatra's life constantly and continue to feel guilty that there is a strong possibility that we made a mistake back in early May by trying to wean her off her steroids. However, we were so certain that the steroids were affecting Supatra negatively that we were determined to try and wean her off. I think we lost track of the fact that Supatra was also on her maximum ANP dose at that time and so we should have realised that it was not helping her to be off the dexamethasone. Parts of me still believe that she would have been with us at least for months longer had we not done this. The only saving grace for me is in reviewing her medical logs it was clear she was already showing signs of symptom progression even though the March 2012 MRI showed no significant change. Of course as reiterated on this blog many times a "no significant change" does not equal "no change" and therefore there could have been some small diffuse parts of her tumour progressing and affecting her. Then on her last scan on 31 May 12 it showed a new lesion in the dorsal area of the pons but they did not categorically come out and say that it was cancerous. It helps me to know this but it is still hard for me to comprehend how quickly she declined over the last 4 days of her live.
Back in the summer of 2011 me and Punny discussed the possibility of having another child - another girl to be precise and also talked about this with Supatra. Supatra was very eager to have another sister and asked us about it several times over the course of the last year. It was also around the same time we made a critical decision to take Supatra to the Burzynski clinic to try and save her live or at the very least extend it and so the idea of having another child with this big trip looming and not know if Punny and the kids would be returning to the UK (as we had no doctor at the time willing to help us monitor her ANP treatment in the UK). Once we started Supatra on the ANP treatment we knew that this was going to consume all of our efforts and time and therefore we decided in October 2011 not to have another baby. I would have loved to have given Supatra the opportunity to see and play with a sister but looking after a baby, while Jason was still in diapers and with Supatra being ill was not an option. Supatra had to come first and we needed to give Jason as much attention as we possibly could.
When Supatra passed away Punny and me both agreed soon after that we would want to try for another baby girl although we also knew this would be a long shot and that we might end up with two boys instead. But we knew we needed this in order to help us get over our grief for Supatra and so that is what we did. I am happy to announce that Punny's 24 Oct 12 scan has confirmed that we will be having a baby girl! We are so so happy although in the back of my mind I am cogniscent of my age and worry about the health of the baby. For months I have been talking to my Supatra and asking her to intervene if she could to ensure that we would have a baby girl. Who knows maybe my little angel is listening to me:) The baby's expected birth is to occur around the 26th of March 2013 approximately 3 days before Supatra's birth date - how wonderful and strange is that! I am now hoping that she will be born on Supatra's birthday so that we can celebrate their birthdays together. We still have not picked out a name but we are thinking of including a portion of Supatra's name as the new baby's middle name.
During the last few months of Supatra's life we continued to talk about having another baby girl with Supatra but of course had to tell her that it would not be until after Supatra got better. I can not remember exactly when but in March or April 2012 Supatra made a hanging mobile for her future sister and wrapped it all up for her birthday. We still have this present, kept in a special place, and intend to give it to her sister probably on her 2nd or 3rd birthday - at a time when she is likely to understand to some degree the significance of this gift. We never prompted her to do this - this was something she decided to do on her own. Supatra was always so thoughtful and in some ways I am surprised that she did not make presents for everyone in the family at that time like she did in February 2011 for our next Christmas. She did not know of the seriousness of her condition at that time but out of the blue she started to collect and wrap Christmas presents for everyone, as if she knew she might not be hear in December 2011. I think I mentioned it in a blog post around that time. I think not doing this for Christmas 2012 has likely something to do with her decreasing ability to make crafts, draw, write and so on, but a part of me wishes so much that she would have done this. I miss my little artist extraordinaire!
We now wait with baited breath for the arrival of our new born and although I am being a little selfish, I hope beyond hope that her sister will look and have the same beautiful personality like her big sister Supatra. We are happy about the news but it is still a happiness mixed with sadness as we continue to constantly think about our Supatra. Supatra will always be my first born, my shining light, so proud of her accomplishments and courage that our sadness is always there in the background. Although not a religious man, I think Supatra is looking after us and knows about her soon to be baby sister. Let her be her sisters guiding light and personal angel so that no harm will come to her.
The picture below is of the baby's scan on 24 Oct 12 and we can already see that she has the same type of head structure comparable to Supatra's in her old scans. One can only hope that she will have Supatra's spirit in her.
Bye Jorg
We are holding up OK but continue to have our bad days and I personally continue to re-live the last few weeks of Supatra's life constantly and continue to feel guilty that there is a strong possibility that we made a mistake back in early May by trying to wean her off her steroids. However, we were so certain that the steroids were affecting Supatra negatively that we were determined to try and wean her off. I think we lost track of the fact that Supatra was also on her maximum ANP dose at that time and so we should have realised that it was not helping her to be off the dexamethasone. Parts of me still believe that she would have been with us at least for months longer had we not done this. The only saving grace for me is in reviewing her medical logs it was clear she was already showing signs of symptom progression even though the March 2012 MRI showed no significant change. Of course as reiterated on this blog many times a "no significant change" does not equal "no change" and therefore there could have been some small diffuse parts of her tumour progressing and affecting her. Then on her last scan on 31 May 12 it showed a new lesion in the dorsal area of the pons but they did not categorically come out and say that it was cancerous. It helps me to know this but it is still hard for me to comprehend how quickly she declined over the last 4 days of her live.
Back in the summer of 2011 me and Punny discussed the possibility of having another child - another girl to be precise and also talked about this with Supatra. Supatra was very eager to have another sister and asked us about it several times over the course of the last year. It was also around the same time we made a critical decision to take Supatra to the Burzynski clinic to try and save her live or at the very least extend it and so the idea of having another child with this big trip looming and not know if Punny and the kids would be returning to the UK (as we had no doctor at the time willing to help us monitor her ANP treatment in the UK). Once we started Supatra on the ANP treatment we knew that this was going to consume all of our efforts and time and therefore we decided in October 2011 not to have another baby. I would have loved to have given Supatra the opportunity to see and play with a sister but looking after a baby, while Jason was still in diapers and with Supatra being ill was not an option. Supatra had to come first and we needed to give Jason as much attention as we possibly could.
When Supatra passed away Punny and me both agreed soon after that we would want to try for another baby girl although we also knew this would be a long shot and that we might end up with two boys instead. But we knew we needed this in order to help us get over our grief for Supatra and so that is what we did. I am happy to announce that Punny's 24 Oct 12 scan has confirmed that we will be having a baby girl! We are so so happy although in the back of my mind I am cogniscent of my age and worry about the health of the baby. For months I have been talking to my Supatra and asking her to intervene if she could to ensure that we would have a baby girl. Who knows maybe my little angel is listening to me:) The baby's expected birth is to occur around the 26th of March 2013 approximately 3 days before Supatra's birth date - how wonderful and strange is that! I am now hoping that she will be born on Supatra's birthday so that we can celebrate their birthdays together. We still have not picked out a name but we are thinking of including a portion of Supatra's name as the new baby's middle name.
During the last few months of Supatra's life we continued to talk about having another baby girl with Supatra but of course had to tell her that it would not be until after Supatra got better. I can not remember exactly when but in March or April 2012 Supatra made a hanging mobile for her future sister and wrapped it all up for her birthday. We still have this present, kept in a special place, and intend to give it to her sister probably on her 2nd or 3rd birthday - at a time when she is likely to understand to some degree the significance of this gift. We never prompted her to do this - this was something she decided to do on her own. Supatra was always so thoughtful and in some ways I am surprised that she did not make presents for everyone in the family at that time like she did in February 2011 for our next Christmas. She did not know of the seriousness of her condition at that time but out of the blue she started to collect and wrap Christmas presents for everyone, as if she knew she might not be hear in December 2011. I think I mentioned it in a blog post around that time. I think not doing this for Christmas 2012 has likely something to do with her decreasing ability to make crafts, draw, write and so on, but a part of me wishes so much that she would have done this. I miss my little artist extraordinaire!
We now wait with baited breath for the arrival of our new born and although I am being a little selfish, I hope beyond hope that her sister will look and have the same beautiful personality like her big sister Supatra. We are happy about the news but it is still a happiness mixed with sadness as we continue to constantly think about our Supatra. Supatra will always be my first born, my shining light, so proud of her accomplishments and courage that our sadness is always there in the background. Although not a religious man, I think Supatra is looking after us and knows about her soon to be baby sister. Let her be her sisters guiding light and personal angel so that no harm will come to her.
The picture below is of the baby's scan on 24 Oct 12 and we can already see that she has the same type of head structure comparable to Supatra's in her old scans. One can only hope that she will have Supatra's spirit in her.
Bye Jorg
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| Our new baby girl!!! |
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| Supatra at less then a month old. I love this picture! Miss you sweetie pie! |
Friday, 21 September 2012
Supatra's 100 day anniversary of her passing
13 September marked the 100th day of Supatra's passing and it is a Buddhist tradition to mark this occasion with family's of the deceased attending their local temples. Usually this is a big event that all family members and acquaintances of the family attend at their local Thai Buddhist temple where they make offerings to Buddha, the monks and to the deceased. The Monks then conduct special chanting prayers with everyone as a means of offering merit and helping the deceased in heaven. We would have liked to join our extended family in Thailand for this special occasion but work commitments would not allow this and so we held our own ceremony at a temple in Ottawa with a few dozen members of the Thai Buddhist faithful. We also asked our friends and family members, where ever they were to do the same and so we had friends in England sending prayers to Supatra, in Victoria and Ottawa Canada and our extended family in Thailand all conducting ceremonies and remembering Supatra on the same day. It was very heart warming for us to know that so many people were touched by Supatra in some way and that she is still thought about and remembered. It is very important for me and Punny to know this and to see the wonderful pictures of people remembering Supatra in their own way.
We had my mom and sister releasing a balloon for Supatra and some of Supatra's best friends, Sam, Bella and Gracie releasing balloons in Milton Country Park in England. It is also important to mention Oliver, another close friend of Supatra's who still thinks of her fondly and misses her very much. Attached are some pictures of these moments.
Both me and Punny are still in pain over losing Supatra to this cancer and we struggle to remain composed everyday. Some days we just don't make it and the sorrow just washes over us like a tidal wave. We miss our angel so much.
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I promised to update this blog with the donation link for Natalie's marathon run in Bristol this coming spring and so here it is:
https://mydonate.bt.com/fundraisers/nataliegunner1
Please support Nat in her endeavour as it is for a very good cause; now very much so dear to our hearts - raising money for DIPG research. This is also Nat's first attempt at a marathon and we thank her so much for doing this in Supatra's name.
I continue to mull over some thoughts on how we can keep Supatra's memory alive and would like to create another website in Canada (linked to this one of course) that could be used as the basis for starting a new chapter of Supatra's Fairy Fund in Canada and to facilitate donations in this country. I also do not find this blog site to be very user friendly especially in arranging a better layout then we currently have. To start, I am thinking of creating an annual "Supatra's Fairy Walk" fundraising to be held on or near the anniversary of her passing (5th June) and hold some sort of evening event in her Honor in the late fall of each year. Of course, the idea would be to raise money specifically for DIPG tumour research. Unfortunately, my current employment training will likely keep me from making this a reality this coming year but I do hope to move forward with this charity work with a possible future aim of registering Supatra's Fairy Fund as a charity within Canada. If there is anyone that would like to consider helping me in making these yearly events a reality, please let me know by contacting me through: supatrasfairyfund@hotmail.ca
I would also like to let you know that my UK Just Giving page is still up with donations going directly to the Brain Tumour UK charity and any donations in Supatra's name (which all are when donated through this page) will be marked for DIPG research grants.
Once I have some time in the future I will also update this web page to reflect the change in our focus; however, Supatra's cancer fight and life story will always remain in case it might help other families going through this ordeal.
Thank you to everyone who supported and continue to support us.
Jorg (Supatra's dad)
Miss you sweetie!
We had my mom and sister releasing a balloon for Supatra and some of Supatra's best friends, Sam, Bella and Gracie releasing balloons in Milton Country Park in England. It is also important to mention Oliver, another close friend of Supatra's who still thinks of her fondly and misses her very much. Attached are some pictures of these moments.
Both me and Punny are still in pain over losing Supatra to this cancer and we struggle to remain composed everyday. Some days we just don't make it and the sorrow just washes over us like a tidal wave. We miss our angel so much.
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| Supatra's Grandfather in Thailand |
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| Merit making by making offerings to the Monks |
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| Gifts for the Monks |
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| Pink dress for Supatra and toys |
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| Supatra's Aunt and Uncle |
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| Supatra would have loved these flowers! |
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| Offering food to the Monks |
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| Supatra loved wearing her tieras |
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| Gifts for Supatra |
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| Aunt Christine |
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| Oma, Supatra's favourite person in the world after her mom |
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| At the Ottawa Buddhist temple |
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| Making our offerings to the Monks and Supatra |
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| Supatra's mom preparing for the ceremony |
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| Ottawa Buddhist temple |
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| Michael and Gracie remembering Supatra at her memorial Pink Blossom Tree at her school in Milton, UK |
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| Sam, Bella & Gracie |
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| Sam, Bella & Gracie remembering Supatra with a Balloon release |
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| Hope you caught the balloon Supatra...love you |
I promised to update this blog with the donation link for Natalie's marathon run in Bristol this coming spring and so here it is:
https://mydonate.bt.com/fundraisers/nataliegunner1
Please support Nat in her endeavour as it is for a very good cause; now very much so dear to our hearts - raising money for DIPG research. This is also Nat's first attempt at a marathon and we thank her so much for doing this in Supatra's name.
I continue to mull over some thoughts on how we can keep Supatra's memory alive and would like to create another website in Canada (linked to this one of course) that could be used as the basis for starting a new chapter of Supatra's Fairy Fund in Canada and to facilitate donations in this country. I also do not find this blog site to be very user friendly especially in arranging a better layout then we currently have. To start, I am thinking of creating an annual "Supatra's Fairy Walk" fundraising to be held on or near the anniversary of her passing (5th June) and hold some sort of evening event in her Honor in the late fall of each year. Of course, the idea would be to raise money specifically for DIPG tumour research. Unfortunately, my current employment training will likely keep me from making this a reality this coming year but I do hope to move forward with this charity work with a possible future aim of registering Supatra's Fairy Fund as a charity within Canada. If there is anyone that would like to consider helping me in making these yearly events a reality, please let me know by contacting me through: supatrasfairyfund@hotmail.ca
I would also like to let you know that my UK Just Giving page is still up with donations going directly to the Brain Tumour UK charity and any donations in Supatra's name (which all are when donated through this page) will be marked for DIPG research grants.
Once I have some time in the future I will also update this web page to reflect the change in our focus; however, Supatra's cancer fight and life story will always remain in case it might help other families going through this ordeal.
Thank you to everyone who supported and continue to support us.
Jorg (Supatra's dad)
Miss you sweetie!
Wednesday, 5 September 2012
Only Memories Now
Hello everyone,
For obvious reasons it has been some time since I last posted but felt I should say something now that the third month anniversary of Supatra's passing is upon us. It is hard to believe that she is gone and that it now has been 3 months. The horror of her decline over the last 48 hours of her life still haunt us and we continue to relive those hours almost everyday. It is a loss like no other and I still don't know how I will be able to cope without her chattering, without her funny dancing and without her yelling at Jason to watch her do something silly.
A lot has happened since my last post like moving the family from the UK back to Canada. This in itself was an emotional challenge as I felt that moving so soon after Supatra's death that we were abandoning her. We had our own special ceremonies in the hopes that her spirit would follow us to Canada and her new home which she did not get to see. We arrived in Canada on 16 July and spent about 3 weeks in a hotel until all our belongings arrived. We are now in what I call our temporary home on a Canadian Forces base until such time we can save up some money to purchase a home. We had deliberately chosen to stay on the base because of Supatra's and Punny's need for support that we had already worked to set-up in anticipation of our original move date of 25 Jun 12. That need all but disappeared after Supatra passed but we had to stay with the accommodations we had arranged. In the end I think it is working out for the better as Jason's nursery is only about 100m from our house and Punny still gets to use the support services on the base. We both struggle day by day but Punny has been hit the hardest especially as her all day morning sickness kicked in. That's right for those that may not know, Punny is pregnant and we are hoping for a baby girl! :) We discussed having another child shortly after Supatra was diagnosed but never acted on it. We also discussed it with Supatra because at one point we wanted to have another child in time for Supatra to meet her new sibling and Supatra was always keen to have a sister anyways. But in the end we knew it would be too much to bear, especially for Punny, knowing that things might get much harder. After starting Supatra on her Burzynski treatment we knew that the burden would be way too much and that it would just be one more thing taking our focus away from our priority, which was Supatra. Punny and soon to be baby are doing fine and the expected due date is 26 March 2013!! Only three days out from Supatra's birthdate of 29 March. At one point we thought it would be really special if we were to have a baby girl born on the exact same day but after thinking about it we would rather that did not happen. We feel that if our baby was born on the same day it would never be just about her special day but there would always be a sad cloud hanging over her special day.
The morning sickness that Punny is experiencing is the worst of her three pregnancies and combined with the fresh loss of Supatra, our move to a city where we have no connections to, plus missing all our wonderful community of friends in the UK has really made this a difficult last 6 weeks. Punny is starting to feel somewhat better but is still very tired, depressed and feeling the sickness for the time being. But day by day she is getting stronger and getting around more.
On top of the move and me missing the first 1.5 weeks of my French language course for various reasons I got into an accident with my car after having it on the road for only three weeks and just spending $1,500 on repairs. I was OK but some guy was not paying attention to the red light I was stopped at and hit me from behind. I thought the car would be repaired but the insurance company felt it was a right-off and so for a week instead of studying I was researching for a new vehicle and running around getting paperwork sorted out. In the end we bought a used minivan but we are out about $5,000! :( It has just been one thing after another and I hope that is the last problem we will have to deal with for some time.
I continue to think about a way forward for doing something special for Supatra so that her name and spirit will be remembered. I know our good friends in Milton are still moving forward with plans to create a sitting area near the Milton community centre and a "Supatra's Fairy Walk" at the Milton Country Park. My language studies are taking a priority right now but I am also thinking of creating one or two annual charity events here in Ottawa. Maybe continuing the theme 'Supatra's Big Night Out' evening event and a 'Supatra Fairy Walk' on the anniversary of her passing. The fairy walk would be good to develop into a family event that would see kids dress as fairies and walk for a set distance and have some entertainment at the finish/start line. We also may have an opportunity to create a tranquil garden space in honour of Supatra at the local Buddhist temple which has a large undeveloped property. But these are all long term plans/projects and I will have to see if I can make them work.
Thank you to everyone for your continued support and trying to help us get through our grief. I should also mention that Natalie Gunner is going to run the Brighton Marathon to help raise money for Brain Tumour UK which is supporting us in earmarking all funds raised in Supatra's name towards DIPG research projects. I will try to get a link to Natalie's fundraising page in the coming days.
Here's the link to Nat's fundraising page!
https://mydonate.bt.com/fundraisers/nataliegunner1
All the best
Supatra's Dad
For obvious reasons it has been some time since I last posted but felt I should say something now that the third month anniversary of Supatra's passing is upon us. It is hard to believe that she is gone and that it now has been 3 months. The horror of her decline over the last 48 hours of her life still haunt us and we continue to relive those hours almost everyday. It is a loss like no other and I still don't know how I will be able to cope without her chattering, without her funny dancing and without her yelling at Jason to watch her do something silly.
A lot has happened since my last post like moving the family from the UK back to Canada. This in itself was an emotional challenge as I felt that moving so soon after Supatra's death that we were abandoning her. We had our own special ceremonies in the hopes that her spirit would follow us to Canada and her new home which she did not get to see. We arrived in Canada on 16 July and spent about 3 weeks in a hotel until all our belongings arrived. We are now in what I call our temporary home on a Canadian Forces base until such time we can save up some money to purchase a home. We had deliberately chosen to stay on the base because of Supatra's and Punny's need for support that we had already worked to set-up in anticipation of our original move date of 25 Jun 12. That need all but disappeared after Supatra passed but we had to stay with the accommodations we had arranged. In the end I think it is working out for the better as Jason's nursery is only about 100m from our house and Punny still gets to use the support services on the base. We both struggle day by day but Punny has been hit the hardest especially as her all day morning sickness kicked in. That's right for those that may not know, Punny is pregnant and we are hoping for a baby girl! :) We discussed having another child shortly after Supatra was diagnosed but never acted on it. We also discussed it with Supatra because at one point we wanted to have another child in time for Supatra to meet her new sibling and Supatra was always keen to have a sister anyways. But in the end we knew it would be too much to bear, especially for Punny, knowing that things might get much harder. After starting Supatra on her Burzynski treatment we knew that the burden would be way too much and that it would just be one more thing taking our focus away from our priority, which was Supatra. Punny and soon to be baby are doing fine and the expected due date is 26 March 2013!! Only three days out from Supatra's birthdate of 29 March. At one point we thought it would be really special if we were to have a baby girl born on the exact same day but after thinking about it we would rather that did not happen. We feel that if our baby was born on the same day it would never be just about her special day but there would always be a sad cloud hanging over her special day.
The morning sickness that Punny is experiencing is the worst of her three pregnancies and combined with the fresh loss of Supatra, our move to a city where we have no connections to, plus missing all our wonderful community of friends in the UK has really made this a difficult last 6 weeks. Punny is starting to feel somewhat better but is still very tired, depressed and feeling the sickness for the time being. But day by day she is getting stronger and getting around more.
On top of the move and me missing the first 1.5 weeks of my French language course for various reasons I got into an accident with my car after having it on the road for only three weeks and just spending $1,500 on repairs. I was OK but some guy was not paying attention to the red light I was stopped at and hit me from behind. I thought the car would be repaired but the insurance company felt it was a right-off and so for a week instead of studying I was researching for a new vehicle and running around getting paperwork sorted out. In the end we bought a used minivan but we are out about $5,000! :( It has just been one thing after another and I hope that is the last problem we will have to deal with for some time.
I continue to think about a way forward for doing something special for Supatra so that her name and spirit will be remembered. I know our good friends in Milton are still moving forward with plans to create a sitting area near the Milton community centre and a "Supatra's Fairy Walk" at the Milton Country Park. My language studies are taking a priority right now but I am also thinking of creating one or two annual charity events here in Ottawa. Maybe continuing the theme 'Supatra's Big Night Out' evening event and a 'Supatra Fairy Walk' on the anniversary of her passing. The fairy walk would be good to develop into a family event that would see kids dress as fairies and walk for a set distance and have some entertainment at the finish/start line. We also may have an opportunity to create a tranquil garden space in honour of Supatra at the local Buddhist temple which has a large undeveloped property. But these are all long term plans/projects and I will have to see if I can make them work.
Thank you to everyone for your continued support and trying to help us get through our grief. I should also mention that Natalie Gunner is going to run the Brighton Marathon to help raise money for Brain Tumour UK which is supporting us in earmarking all funds raised in Supatra's name towards DIPG research projects. I will try to get a link to Natalie's fundraising page in the coming days.
Here's the link to Nat's fundraising page!
https://mydonate.bt.com/fundraisers/nataliegunner1
All the best
Supatra's Dad
Sunday, 8 July 2012
The Pain Lingers On
It has now been a little over a month since Supatra passed
away and the pain has not eased for me and Punny. We continue to share long moments of solitude thinking about how
we cared for Supatra, whether or not we could have done something that would
have resulted in her still being with us; why Supatra (or any child for that
matter)? Why our family? Supatra is such a lovely girl and if you were to see
all the pictures of her you would agree that she was near perfect in every way. Beautiful, smart, quick witted, joyful,
always smiling, adventurous, a quick learner and very sociable. One of the only problems that we had had
with Supatra was her fussy eating habits but I am sure she got that from me as
I was extremely fussy with food when I was a child as well. So why her and why such a deadly tumour that
leaves little to no hope?
It is amazing how one can take things for granted as I look
back at her ordeal. It is a thought
that keeps coming back - why did we not spend more time with her? Why did we not do more activities with
her? Why did we not show more empathy
towards what she was enduring? Its
strange how, in the moment, you can get so easily lost with the everyday
chores, needs, and desire to get one more thing done instead of using that time
to spend with someone in your care who you know, in the back of your mind, that
they may pass away soon. I fell into
that trap, that zone, that pitfall and I am now left in this human world suffering
with my guilt and my pain of not knowing whether Supatra understands or
understood that everyday things needed to get done. Can a seven year old who's brain has been scarred and dulled from
radiotherapy and drugs understand this?
Did she understand that special meals and medicines had to be prepared at regular intervals,
that medical logs had to be kept, emails sent everyday to the doctors, and
preparations made for our move; just to name a few? Can she forgive me for not being more attentive to what her needs
might have been? Supatra was a
relatively easy person to care for in that she would say something if she
needed help or something brought to her and if not she went about her daily
routine of playing with Jason or watching some cartoons if we were not engaged
in other activities. But this put us
into a routine mode that we think we should have snapped out of as the last few
weeks drained her of energy and she became more symptomatic of her disease. We should have grasped the severity of it
and changed our daily focus to better accommodate Supatra and spend much more precious
time with her. To talk with her more. We should have
considered reducing the treatment regimen to allow her body a bit of a
recovery. We should not have tried
weaning her off the steroids three weeks earlier. All these things are like little slivers of guilt poking at us,
deepening our heartache. For me it is a
deep remorse for not being a better and more capable father to Supatra -
something that keeps my heart from healing even a little and the pain fresh. I still cry a lot. Sometimes it is in the morning when I walk into her room to look
around and talk to her as if she was there lying in bed. Other times it comes as I try to organize
all our pictures of her on the computer, something we had not done for years. But whenever it does come it rips into me
and I become inconsolable in my grief of not being able to hold and feel her in
my arms; to not hear her jabbering about silly things; or watch her play and
interact with Jason. We just can not
come to terms with losing her, something so permanent, final, forever.
Our pain is only interrupted by our need to 'get things
done' for our impending move back to Canada this coming week. If it were not for this task I think both me
and Punny would be lost to the world only alive just enough to sit and think
about our loss. Both of us now want to
leave as soon as we can, to leave this house that is now too big for our much
smaller family and our hopes to leave some of the memories of Supatra's last
few days behind as well. Not the memory
of Supatra per say but the memory of watching her die over the last few days of
her life and the constant rehashing of events over those days that leaves us
wondering 'what if.' Hoping that a change
in living space will somehow cure or lesson our pain and open our minds to only
the good times and healthy images we have of our daughter.
This past week we took a short 4 day trip to Venice, Italy
to try and get away from our pain and hopefully spend some quality time with
Jason. Punny had always wanted to visit
Venice but we never really had an opportunity and of course when Supatra was
diagnosed the idea quickly disappeared as we focused entirely on finding a
treatment for Supatra. We probably
could have gone before our trip to the Burzynski Clinic but we were also bogged
down with the need to find new accommodations and move home because our then
landlords decided they wanted to sell their house forcing us to move. After starting the Burzynski treatment there
was no way we would be able to go as any flights with Supatra would have meant
taking her off the treatment. At first,
I did not like the idea as it just did not feel right going on a vacation so
soon after Supatra's death. How could
we go and try and enjoy ourselves without Supatra as if to say to her
spirit; 'finally we can do enjoyable things again without worry or
complications?' But in the end
it kind of made sense to go and get away from this empty house and the thoughts
of her death. So, off we went this last
week but unfortunately it did not really help me; I don't know how much it
helped Punny but I do know that no matter what we did or what we saw we
immediately always thought of Supatra and how much she would have enjoyed being
there with us. Supatra loved travelling
and going on adventures and Punny had talked to her about Venice in the past so
we knew she would have been very excited about this trip. Venice also has lots of fantastic souvenir
and art shops that Supatra would have loved brousing through. Buying a Venetian mask maybe? A glass rose? Or some costume jewellry from the many jewellery shops? All would have gotten her extremely excited, made her very happy
and I am sure she would have come home with an additional suit case of goodies
on our return. Supatra would have loved
the Italian ice cream that we had several times each day because of the hot
weather, and she would have lapped it up with delightful glee. And so our little escape from our house was
constantly interrupted with the thought of how Supatra would have loved to have
been there with us and the sadness, guilt, and utter despair remained with us
for the entirety of the trip. I am sure
if you see our pictures from the trip you will see us smiling but they are only
superficial smiles forced for a brief moment in time. Luckily we managed to hide our feelings from Jason and he seemed
to really enjoy the trip but we can also see his frustration poking through now
and again probably from the growing realisation that he no longer has a sister
that he can talk with, play on the DSi with or watch movies on the iPad with -
adults are just not the same!
So now comes the next tough job of packing up Supatra's room
tomorrow in anticipation of the movers coming on Monday to start packing our
belongings. I think many tears will be
shed again as they are everyday, tearing down her room and ever so carefully
packing up her personal belongings. We
intend to box all of the most precious things ourselves as we do not want
strangers touching her stuff. Stuff
like the last clothing she wore, the pillow she used, the blanket she was
wrapped in over the last days, her most precious toys, stuffed animals and her many
written notes, journals, and art work.
A tough day it will be with many more to follow. I feel weak, exhausted and lifeless as my
sadness consumes me from the inside out.
If only we could go back in time and correct our faults and mistakes -
what a perfect world it would be.
Miss you Supatra....
Dad
Thursday, 28 June 2012
Supatra's Memorial Video's
This first video was played at her funeral on 14 June 2012 and is a celebration of her life in pictures:
This second video was put together by Destiny Duo, local Norwich, UK entertainers/singers who gave their generous time to help in our fundraising efforts to help pay for Supatra's cancer treatment. This shorter video is of the fundraising event that they held on 30th March 2012 in Norwich, 1 day after her seventh birthday and 67 days prior to Supatra's passing. Matthew and Vanessa of Destiny Duo continued in their support for us and Supatra and we are ever greatful for that support and their friendship.
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