tag:blogger.com,1999:blog-64366648125976943542023-11-16T11:11:33.809+00:00Supatra's Fairy FundJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-6436664812597694354.post-64870571726411406322013-08-28T02:47:00.002+01:002013-08-28T02:47:39.737+01:00A New Life StartsWell, 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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Supatra's Dad<br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com2tag:blogger.com,1999:blog-6436664812597694354.post-68538491742022673452013-04-06T02:13:00.003+01:002013-04-06T02:13:58.399+01:00A Little UpdateHello Everyone,<br />
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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. <br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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:<br />
<a href="https://mydonate.bt.com/fundraisers/nataliegunner1#.UVmMKBevJV8.facebook">https://mydonate.bt.com/fundraisers/nataliegunner1#.UVmMKBevJV8.facebook</a><br />
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xx Jorg<br />
Love you and always in my thoughts Supatra!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRxEaXKMFnIWOSrDt6gu8EIbP3adRgCWKzVRakjwrkgpR9yftFpabihnVV-W2vEoTLN_AvYi4ZAtpBBwaXGxWdeqWf830I7AdTc2AvrnykJRYIyjpJe9u8oIF4b099cAHZZwfgirj_jmg/s1600/Supatra+BD+29+Mar+13+014.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRxEaXKMFnIWOSrDt6gu8EIbP3adRgCWKzVRakjwrkgpR9yftFpabihnVV-W2vEoTLN_AvYi4ZAtpBBwaXGxWdeqWf830I7AdTc2AvrnykJRYIyjpJe9u8oIF4b099cAHZZwfgirj_jmg/s200/Supatra+BD+29+Mar+13+014.JPG" width="200" /></a>Our Buddhist ceremony on Supatra's birthday</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ugHgpcL2b61dTj0Zo_mVL6-Yp92lUSFHAs9EkvK3GkKLYoNPMK9W12FnKukqDmQX0O_q7abOOV1xUF-anq_UJAbLKLyLYJJ-TjUCkbMNirDOKPNqSiymUQa_wWoAfJ2M2ldviVfsaxU/s1600/Supatra+BD+29+Mar+13+018.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ugHgpcL2b61dTj0Zo_mVL6-Yp92lUSFHAs9EkvK3GkKLYoNPMK9W12FnKukqDmQX0O_q7abOOV1xUF-anq_UJAbLKLyLYJJ-TjUCkbMNirDOKPNqSiymUQa_wWoAfJ2M2ldviVfsaxU/s200/Supatra+BD+29+Mar+13+018.JPG" width="200" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoNKqEabXVY-aE-pjxWBtLeCJyvI3xljyvodmYbKr2PDDiZvVxWJq9KH9xJYCy1AEeZfhsgifK5FOqRrwiBp_J7oQRGbicX9bnObQzL5UrW31SAtIWqPcpfN4I_c3IJN0cSsTFWk4A5lo/s1600/Supatra+BD+29+Mar+13+010.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoNKqEabXVY-aE-pjxWBtLeCJyvI3xljyvodmYbKr2PDDiZvVxWJq9KH9xJYCy1AEeZfhsgifK5FOqRrwiBp_J7oQRGbicX9bnObQzL5UrW31SAtIWqPcpfN4I_c3IJN0cSsTFWk4A5lo/s200/Supatra+BD+29+Mar+13+010.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Surina Supatra's baby sister</td></tr>
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Releasing Balloons for Supatra<br />
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Friends in England remembering Supatra on her birthday at her school. Thank you to everyone that participated.<br />
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<tr><td class="tr-caption" style="text-align: center;">Balloons flying over Milton, UK</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Beautiful Misa with her "crazy" hat with Supatra's name on it!</td></tr>
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Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com2tag:blogger.com,1999:blog-6436664812597694354.post-4318395259621032102012-10-26T15:56:00.000+01:002012-10-26T15:56:17.233+01:00Supatra will finally get her Sister!Hello everyone,<br />
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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.<br />
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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.<br />
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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.<br />
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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! <br />
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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. <br />
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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.<br />
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Bye Jorg<br />
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<tr><td class="tr-caption" style="text-align: center;">Our new baby girl!!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZAchdoj4ACRQvefFrsYi2thJ72WwC5Vu6JGNwQNRslfBLoNPwe_GiOqBgtDl3PgRm93V8GtxGlhOP3X2KaZoODXPAyz7zGbYlA2bq-vddxOANcHIc0OyLB9lgd0RbVjCelYfqvD-Ly_4/s1600/Supatra+007+19+Apr+05.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZAchdoj4ACRQvefFrsYi2thJ72WwC5Vu6JGNwQNRslfBLoNPwe_GiOqBgtDl3PgRm93V8GtxGlhOP3X2KaZoODXPAyz7zGbYlA2bq-vddxOANcHIc0OyLB9lgd0RbVjCelYfqvD-Ly_4/s320/Supatra+007+19+Apr+05.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Supatra at less then a month old. I love this picture! Miss you sweetie pie!</td></tr>
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Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1tag:blogger.com,1999:blog-6436664812597694354.post-7438455153871669932012-09-21T03:27:00.000+01:002012-09-21T03:27:29.973+01:00Supatra's 100 day anniversary of her passing13 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.<br />
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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. <br />
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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. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmTwESzxdXKkrYxM0M4LCirXPT5_JdRNjb_1jDfnayEtr1RPwZ8n-8ychtpK_F5KnoR1jLJQVm_5RdCsvrEKtXpdlVhTS1ySGlokFgliAbW8tZfeRJ3XoDfXSHppwXDwOx-Dp3Q1oiprw/s1600/320343_438551422863151_601008807_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmTwESzxdXKkrYxM0M4LCirXPT5_JdRNjb_1jDfnayEtr1RPwZ8n-8ychtpK_F5KnoR1jLJQVm_5RdCsvrEKtXpdlVhTS1ySGlokFgliAbW8tZfeRJ3XoDfXSHppwXDwOx-Dp3Q1oiprw/s200/320343_438551422863151_601008807_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Supatra's Grandfather in Thailand</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidnZO73hYfl64JXNbzg8j_gnWkXozrbtcy4JvCZuRL79f4jm82diXtOAoh5KdtCqsZlSmRJL89ks_2I3v4sHDgggfW30aEccuRLGJQOgXdX1YSP4V5qIQDjZUMseycMVm8r0WCBW0vZRk/s1600/293042_438552252863068_2038932011_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidnZO73hYfl64JXNbzg8j_gnWkXozrbtcy4JvCZuRL79f4jm82diXtOAoh5KdtCqsZlSmRJL89ks_2I3v4sHDgggfW30aEccuRLGJQOgXdX1YSP4V5qIQDjZUMseycMVm8r0WCBW0vZRk/s200/293042_438552252863068_2038932011_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Merit making by making offerings to the Monks</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3hSdGdNPHmhqS82TcNLHShHoPsGpKKz12Gk1pO2e6RjSz4U1Nf0AZpN57QSVPj61Mlj0cC1Up2lMCnC297NBaZf_rfyUckGrPs9ka7j0_4hoToXEVc-DB3rRBkxqViQBdd2wAkMBAhL0/s1600/550543_438547466196880_1357966022_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3hSdGdNPHmhqS82TcNLHShHoPsGpKKz12Gk1pO2e6RjSz4U1Nf0AZpN57QSVPj61Mlj0cC1Up2lMCnC297NBaZf_rfyUckGrPs9ka7j0_4hoToXEVc-DB3rRBkxqViQBdd2wAkMBAhL0/s200/550543_438547466196880_1357966022_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gifts for the Monks</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Y-GCu51r8GNng19sqWmQFRyrXds0Oy6evMuuIwbTHjaYyeELAcFCu0WsyLTbE4SO3az-CtwtUDrcez2ZeNC4rLtcNuNr7F0IBkOvui25ymz1Jn_dzB0L50VYGxJ2onOe1KGogkyaNS8/s1600/546405_438550722863221_1978456395_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Y-GCu51r8GNng19sqWmQFRyrXds0Oy6evMuuIwbTHjaYyeELAcFCu0WsyLTbE4SO3az-CtwtUDrcez2ZeNC4rLtcNuNr7F0IBkOvui25ymz1Jn_dzB0L50VYGxJ2onOe1KGogkyaNS8/s200/546405_438550722863221_1978456395_n.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pink dress for Supatra and toys</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3-Q6lyZzXqxXoP6dObetseoqRxKvsgQ6P_FQb93J_s9cwlgALzlhATCljaFWj5Jwr2ajU1gHnXFcNc9vg9uPuq0kce1R1JtbxhMKQAQLDU64W2WOj8S2LL86Ifakzk-My2pwHxeEDpi4/s1600/60696_438552396196387_602447485_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3-Q6lyZzXqxXoP6dObetseoqRxKvsgQ6P_FQb93J_s9cwlgALzlhATCljaFWj5Jwr2ajU1gHnXFcNc9vg9uPuq0kce1R1JtbxhMKQAQLDU64W2WOj8S2LL86Ifakzk-My2pwHxeEDpi4/s200/60696_438552396196387_602447485_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Supatra's Aunt and Uncle</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLXKs2ClNihKxnDACn1dGjEuYkH6yJOTVdfaUj0LTuC2YB8eJQNgP0y_lljCXKF5rhIcbqUSb0THT50_xemGb_3q66EVwgrAmsVUeJM4bX-f3D1BS-7o8eZ5LirxDq3EHhMoUGFiA2zOA/s1600/541139_438550632863230_1746051037_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLXKs2ClNihKxnDACn1dGjEuYkH6yJOTVdfaUj0LTuC2YB8eJQNgP0y_lljCXKF5rhIcbqUSb0THT50_xemGb_3q66EVwgrAmsVUeJM4bX-f3D1BS-7o8eZ5LirxDq3EHhMoUGFiA2zOA/s200/541139_438550632863230_1746051037_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Supatra would have loved these flowers!</td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjm25hFi-U1qgwyWIfEqhroFcjk0ZFhg4J3kjeRgR7hWVcL0bUMNGs4O4P3JI5PDt1NI8MQU9VUUfb9a5fhQUmy1FXNbtP-ZunPZWqe2TmRbgWBIaWTJR1zyVr_UB5yNk4L6mTV8GSso/s1600/408648_438552772863016_984542520_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjm25hFi-U1qgwyWIfEqhroFcjk0ZFhg4J3kjeRgR7hWVcL0bUMNGs4O4P3JI5PDt1NI8MQU9VUUfb9a5fhQUmy1FXNbtP-ZunPZWqe2TmRbgWBIaWTJR1zyVr_UB5yNk4L6mTV8GSso/s200/408648_438552772863016_984542520_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Offering food to the Monks</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEmvCF9Fxm7u5QyiSyV6zLYd4Ol9AVphXErWlVd6R5rg0HJCh5h9RABvL2SErCztgh7sUqKADO6HXfzGy1rFta7AnRGo1Q6FnSIxxPe9bMfKWZQjLoy7t5THHheMSmFaVCwcyORvblB58/s1600/578631_438550869529873_1316589593_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEmvCF9Fxm7u5QyiSyV6zLYd4Ol9AVphXErWlVd6R5rg0HJCh5h9RABvL2SErCztgh7sUqKADO6HXfzGy1rFta7AnRGo1Q6FnSIxxPe9bMfKWZQjLoy7t5THHheMSmFaVCwcyORvblB58/s200/578631_438550869529873_1316589593_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Supatra loved wearing her tieras</td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyTGLlNPjXEhPk37I1tzRBCIKnGPPurA7j3o2jmPRO7NKSv1v6i6lRVNIKqXm5PYr0cdcWs7B3XEEYshNYoMPRGAjLVvLseDeIzkvYF2oJLJCjunEZ-0UoxfRFTuDsGRMupEQSR94cjoY/s1600/230548_438550762863217_664969048_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyTGLlNPjXEhPk37I1tzRBCIKnGPPurA7j3o2jmPRO7NKSv1v6i6lRVNIKqXm5PYr0cdcWs7B3XEEYshNYoMPRGAjLVvLseDeIzkvYF2oJLJCjunEZ-0UoxfRFTuDsGRMupEQSR94cjoY/s200/230548_438550762863217_664969048_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gifts for Supatra</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEift_QB_04XEdy9HLYA4JK9BRC2lHjIIrjLDwaNkQLDFd4nEztCfnGVHxD9dAFh3YfFWPI5RSlubEFGhzgXXP7pGwRNAjRx9l424nJI2R8A3UofgLh7Le1o704iAg-DVmUcGot4qtACAGg/s1600/Christine+releasing+balloon+for+Supatra.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEift_QB_04XEdy9HLYA4JK9BRC2lHjIIrjLDwaNkQLDFd4nEztCfnGVHxD9dAFh3YfFWPI5RSlubEFGhzgXXP7pGwRNAjRx9l424nJI2R8A3UofgLh7Le1o704iAg-DVmUcGot4qtACAGg/s200/Christine+releasing+balloon+for+Supatra.jpg" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Christine</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB-9v74Gf_4UXgDingKTWEfjOEgRbuISAj9qqNTF8vz-bMNA7Q6p6Jzbg88l-H78TiYABBStbo9cpYvkMUuWBGPvUsa02jV0vRgJn0_VcciUek-tV7kvk6Ccno0qf-xDaP1yq-OS9UCbU/s1600/Oma+releasing+balloon+for+Supatra+(2).jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB-9v74Gf_4UXgDingKTWEfjOEgRbuISAj9qqNTF8vz-bMNA7Q6p6Jzbg88l-H78TiYABBStbo9cpYvkMUuWBGPvUsa02jV0vRgJn0_VcciUek-tV7kvk6Ccno0qf-xDaP1yq-OS9UCbU/s200/Oma+releasing+balloon+for+Supatra+(2).jpg" title="Supatra's Oma" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oma, Supatra's favourite person in the world after her mom</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMtZCDvB8fe_prdulRB-JNjvIHUhUCg-HdLwn-DVmckgpCz13RDb-aIX840ozf0cKijFwMTolluWFlbomvo7VXGORwHMSavAvrCXFFnrLcO88rG3oA6CahMKeNkos-Jv-4xHv4qGllPw4/s1600/Supatra's+100+Day+ceremony+16+Sep+12+(46).jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMtZCDvB8fe_prdulRB-JNjvIHUhUCg-HdLwn-DVmckgpCz13RDb-aIX840ozf0cKijFwMTolluWFlbomvo7VXGORwHMSavAvrCXFFnrLcO88rG3oA6CahMKeNkos-Jv-4xHv4qGllPw4/s200/Supatra's+100+Day+ceremony+16+Sep+12+(46).jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the Ottawa Buddhist temple</td></tr>
</tbody></table>
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<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHtOySn_f2wUUY_5qxKlxg5kBY5hi7Aj_jGJNCWB0RIyPWwZNhdvNcyK9riZhwlJHtLQHCQJdu8nij5goFiiZ06Jny61MaHESj2kZlsRzrinvvtLaRLdE3BiPWlMgyz9ahg90X5uqOs0A/s1600/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(1).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHtOySn_f2wUUY_5qxKlxg5kBY5hi7Aj_jGJNCWB0RIyPWwZNhdvNcyK9riZhwlJHtLQHCQJdu8nij5goFiiZ06Jny61MaHESj2kZlsRzrinvvtLaRLdE3BiPWlMgyz9ahg90X5uqOs0A/s200/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(1).JPG" width="200" /></a><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTdo626w6rnF0kGM5WOCuiq9F1TO7hylEuWjrx8CgKJnkPnlfwqiWBM9CWe6nsEkPZHufTzsE78UQIFjxpBXHy7F9zaDN8BioZKnNcomEifaf3GcKDBNbRCw_U0CwWgRH3RAFBAbi75jg/s1600/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(15).JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTdo626w6rnF0kGM5WOCuiq9F1TO7hylEuWjrx8CgKJnkPnlfwqiWBM9CWe6nsEkPZHufTzsE78UQIFjxpBXHy7F9zaDN8BioZKnNcomEifaf3GcKDBNbRCw_U0CwWgRH3RAFBAbi75jg/s200/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(15).JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Making our offerings to the Monks and Supatra</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgxc-mzubXpSYsfrsn8AjP58UBCizHT2ed0S6ychheQLAuU_F3twKYna16N4dvEjnepnpvYr5MfvrM7X0s42_fGsbzlLqwqNrIEVk7S2uRJcjNAZDlRZYotLk30G1g9aGZ6RGa4sh4D0Y/s1600/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(12).JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgxc-mzubXpSYsfrsn8AjP58UBCizHT2ed0S6ychheQLAuU_F3twKYna16N4dvEjnepnpvYr5MfvrM7X0s42_fGsbzlLqwqNrIEVk7S2uRJcjNAZDlRZYotLk30G1g9aGZ6RGa4sh4D0Y/s200/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(12).JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Supatra's mom preparing for the ceremony</td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCOEwgbhAZ6pXL8YlHdnlRkrJQ4vwCWjX1IU7NNlLyZZNDcrnk6nrIkQVDuqIlKD5NdAAzSIxsiJZoQ5eKj0nCmqID1E6lq5R_F91_Zy5ivaMA2JIozdcObfqzqUtdgs81v2zuNrgBZMM/s1600/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(18).JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCOEwgbhAZ6pXL8YlHdnlRkrJQ4vwCWjX1IU7NNlLyZZNDcrnk6nrIkQVDuqIlKD5NdAAzSIxsiJZoQ5eKj0nCmqID1E6lq5R_F91_Zy5ivaMA2JIozdcObfqzqUtdgs81v2zuNrgBZMM/s200/Supatra's+100+day+ceremony+Ottawa+Temple+16+Sep+12+(18).JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ottawa Buddhist temple</td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOl8pOhd8XUOWqiA_yDxB9rlrj9iqj_uy_73nXoNTobJRITV1DFLyoT2O0b_Ph6-cytQDkXX_xP1s_rInlxM-nDGGtxdtpTfkc3rebWlNgOAvvtXx_3uV9JgOc_xBxVyytNgsu3j-5d1E/s1600/250320_263806607072954_1704846796_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOl8pOhd8XUOWqiA_yDxB9rlrj9iqj_uy_73nXoNTobJRITV1DFLyoT2O0b_Ph6-cytQDkXX_xP1s_rInlxM-nDGGtxdtpTfkc3rebWlNgOAvvtXx_3uV9JgOc_xBxVyytNgsu3j-5d1E/s200/250320_263806607072954_1704846796_n.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Michael and Gracie remembering<br />
Supatra at her memorial Pink Blossom<br />
Tree at her school in Milton, UK<br />
</td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc7M9COYBgeP-VzPL5jAx86ohz5e8PBhN4tpE1YZXaajO5DhSocn6qC-YzLWG3NOhGDAU8cBdjDcsYAlwF9aWX51L4YC3-BPgOH2Spm91SZYnkpGYqGisMPWwmL5ysjMLXWvmS2JUthkY/s1600/Remembering+Supatra.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc7M9COYBgeP-VzPL5jAx86ohz5e8PBhN4tpE1YZXaajO5DhSocn6qC-YzLWG3NOhGDAU8cBdjDcsYAlwF9aWX51L4YC3-BPgOH2Spm91SZYnkpGYqGisMPWwmL5ysjMLXWvmS2JUthkY/s200/Remembering+Supatra.jpg" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sam, Bella & Gracie</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhOzf6krzcDLkJZoQXCskYj27UCsxS3oNOlGpnQPIuzk7VMcj65f0U3GuLtslKlhk5FrkNf_4x-IpoUECw0kcMV4_tJY_h5JMQ73ra9ScKxpBUe2Q9W3vpjNtCrDc32RZbXZucCSkcUDs/s1600/Sam+Bella+&+Gracie+releasing+balloon+for+Supatra.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhOzf6krzcDLkJZoQXCskYj27UCsxS3oNOlGpnQPIuzk7VMcj65f0U3GuLtslKlhk5FrkNf_4x-IpoUECw0kcMV4_tJY_h5JMQ73ra9ScKxpBUe2Q9W3vpjNtCrDc32RZbXZucCSkcUDs/s200/Sam+Bella+&+Gracie+releasing+balloon+for+Supatra.jpg" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sam, Bella & Gracie remembering Supatra with a <br />
Balloon release</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg93rCwUw9x8zGXihmIkYksDZI1dsAT7K09anMhC2rqTSiB0km43ja0UW26NfcA9GaIsTUkl1Hhv4seQdQd4-cE5yatzXINokVEWCkL9e7wmqcFj9mxgiF74YZuRG6a2dQrNskfAITY4Ig/s1600/Remembering+Supatra+(2).jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg93rCwUw9x8zGXihmIkYksDZI1dsAT7K09anMhC2rqTSiB0km43ja0UW26NfcA9GaIsTUkl1Hhv4seQdQd4-cE5yatzXINokVEWCkL9e7wmqcFj9mxgiF74YZuRG6a2dQrNskfAITY4Ig/s200/Remembering+Supatra+(2).jpg" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hope you caught the balloon<br />
Supatra...love you</td></tr>
</tbody></table>
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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:<br />
<br />
<a href="https://mydonate.bt.com/fundraisers/nataliegunner1" rel="nofollow nofollow" target="_blank">https://mydonate.bt.com/fundraisers/nataliegunner1</a><br />
<br />
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. <br />
<br />
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: <a href="mailto:supatrasfairyfund@hotmail.ca">supatrasfairyfund@hotmail.ca</a><br />
<br />
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.<br />
<br />
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. <br />
<br />
Thank you to everyone who supported and continue to support us.<br />
<br />
Jorg (Supatra's dad)<br />
<br />
Miss you sweetie!Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-64499615228013114022012-09-05T00:39:00.001+01:002012-09-21T03:28:30.175+01:00Only Memories NowHello everyone,<br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Here's the link to Nat's fundraising page!<br />
<a href="https://mydonate.bt.com/fundraisers/nataliegunner1" rel="nofollow nofollow" target="_blank">https://mydonate.bt.com/fundraisers/nataliegunner1</a><br />
<br />
All the best<br />
Supatra's Dad<br />
<br />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-67403386417583250562012-07-08T03:31:00.001+01:002012-07-08T03:31:47.109+01:00The Pain Lingers OnIt has now been a little over a month since Supatra passed
away and the pain has not eased for me and Punny.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Beautiful, smart, quick witted, joyful,
always smiling, adventurous, a quick learner and very sociable.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>So why her and why such a deadly tumour that
leaves little to no hope? <br />
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
It is amazing how one can take things for granted as I look
back at her ordeal.<span style="mso-spacerun: yes;"> </span>It is a thought
that keeps coming back - why did we not spend more time with her?<span style="mso-spacerun: yes;"> </span>Why did we not do more activities with
her?<span style="mso-spacerun: yes;"> </span>Why did we not show more empathy
towards what she was enduring?<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Can a seven year old who's brain has been scarred and dulled from
radiotherapy and drugs understand this?<span style="mso-spacerun: yes;">
</span>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?<span style="mso-spacerun: yes;"> </span>Can she forgive me for not being more attentive to what her needs
might have been?<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> To talk with her more. </span>We should have
considered reducing the treatment regimen to allow her body a bit of a
recovery.<span style="mso-spacerun: yes;"> </span>We should not have tried
weaning her off the steroids three weeks earlier.<span style="mso-spacerun: yes;"> </span>All these things are like little slivers of guilt poking at us,
deepening our heartache.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I still cry a lot.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Other times it comes as I try to organize
all our pictures of her on the computer, something we had not done for years.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>We just can not
come to terms with losing her, something so permanent, final, forever.<span style="mso-spacerun: yes;"> </span></div>
<o:p></o:p><br />
<br />
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Our pain is only interrupted by our need to 'get things
done' for our impending move back to Canada this coming week.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.'<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
<br />
<br />
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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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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?'<span style="mso-spacerun: yes;"> </span>But in the end
it kind of made sense to go and get away from this empty house and the thoughts
of her death.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Venice also has lots of fantastic souvenir
and art shops that Supatra would have loved brousing through.<span style="mso-spacerun: yes;"> Buying a</span> Venetian mask maybe?<span style="mso-spacerun: yes;"> </span>A glass rose?<span style="mso-spacerun: yes;"> </span>Or some costume jewellry from the many jewellery shops?<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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!</div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>We
intend to box all of the most precious things ourselves as we do not want
strangers touching her stuff.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>A tough day it will be with many more to follow.<span style="mso-spacerun: yes;"> </span>I feel weak, exhausted and lifeless as my
sadness consumes me from the inside out.<span style="mso-spacerun: yes;">
</span>If only we could go back in time and correct our faults and mistakes -
what a perfect world it would be.</div>
<o:p></o:p><br />
<br />
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Miss you Supatra....</div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Dad</div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
<br /></div>Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1tag:blogger.com,1999:blog-6436664812597694354.post-85687059276680710892012-06-28T08:18:00.001+01:002012-06-28T08:19:50.399+01:00Supatra's Memorial Video's<div class="separator" style="clear: both; text-align: center;">
This first video was played at her funeral on 14 June 2012 and is a celebration of her life in pictures:</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/61lWrV2Wgfo?feature=player_embedded' frameborder='0'></iframe></div>
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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.</div>
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<br /></div>Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-14921673809776919582012-06-18T08:13:00.002+01:002012-06-18T08:13:38.229+01:00Supatra's Last DaysI think it is well known by now that sadly Supatra passed
away on 5 Jun 12 at home and surrounded by her family.<span style="mso-spacerun: yes;"> </span>We are still in shock and can not believe
that Supatra is gone after seemingly being still alright only a few days
previous to her death.<span style="mso-spacerun: yes;"> </span>We are finding
it difficult to carry on and the day of her passing the house, our lives, and
our hearts already seemed so empty.<span style="mso-spacerun: yes;">
</span>Tomorrow it will be two weeks since her passing and we don't know what
to do with ourselves but I thought that today I would try to write this diary
entry while memories of the last few weeks of Supatra's life are still fresh in
my mind.<span style="mso-spacerun: yes;"> </span>I want to do this as I think
it is important for other parents who are currently caring for a loved one with
DIPG to know how things progressed, what we could or should have done better,
and importantly to recognize the signs of death; although it should be noted
that everyone passes on in their own way and it will never be exactly the
same.<span style="mso-spacerun: yes;"> </span>This will be and is very hard for
me to write.<br />
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
On 12 May 12, me and Punny decided that it was time we try
to take Supatra off steroids again as she seemed to be getting weaker and
weaker and suspected it was the steroids wrecking her muscles.<span style="mso-spacerun: yes;"> </span>We knew from her last MRI scan that the
tumour was still stable and so we thought that it must be her long term steroid
use that was affecting her adversely.<span style="mso-spacerun: yes;">
</span>We felt that should she get worse (i.e. weaker) off the steroids like
she did in June/July 2011, we could always put her back on and fix the withdrawal
problems.<span style="mso-spacerun: yes;"> </span>This is what happened last
summer and every other time we tried to wean her off.<span style="mso-spacerun: yes;"> </span>After only about 2.5-3 weeks off the steroids Supatra became so
weak that she could no longer pick herself up off the floor and we put her back
on steroids in early July 2011.<span style="mso-spacerun: yes;"> </span>It was
a large pulse dose regimen followed by a slow weaning off process which was
again accomplished by late July 2011.<span style="mso-spacerun: yes;">
</span>After this Supatra was steroid free until she needed to go back on in
late September 2011 after starting her experimental antineoplaston treatment,
and even then it was at a very small 1.25ml dose per day.<span style="mso-spacerun: yes;"> </span>Why am I telling you this? Because we were
using this experience to guide us in our decision making process this last
month.<span style="mso-spacerun: yes;"> </span>We knew the steroids were
negatively affecting Supatra's body and so we felt that we should try to
improve her physical condition by weaning her off the drug, again knowing that
we could always put her back on with a relatively high pulse dose to fix any
complications.<span style="mso-spacerun: yes;"> </span>We also knew that there
was always a possibility that the drug could stop working on her but it always
succeeded before over the last year and a half. </div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
At first Supatra seemed OK, but she was still having bouts
of sleepiness and still getting weaker but it was not at an alarming pace nor
stage where it was overly concerning us.<span style="mso-spacerun: yes;">
</span>By 18 May 12, Supatra complained a few times of pain in her knee and was
not communicating as well.<span style="mso-spacerun: yes;"> </span>The pains
were not new as she has experienced these throughout her illness on various
occasions and would usually only last a few minutes at a time.<span style="mso-spacerun: yes;"> </span>The slower speech though was worrying us and
combined with her weakness, (although telling ourselves it was because of the
steroids) we starting thinking that it may also be tumour progression.<span style="mso-spacerun: yes;"> </span>Since Supatra started on the antineoplaston
treatment I have been keeping a medical log of general observations and other
details about dosages and so on but during this first week off steroids I had
only made one entry because in general there was not much to report; however,
thinking back, I think it was just that changes and events were so minor that I
did not feel it necessary to record them.<span style="mso-spacerun: yes;">
</span>I wish I had of been more attentive and diligent as it would have helped
us now in trying to determine what happened and if we did anything wrong or
missed something.<span style="mso-spacerun: yes;"> </span></div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Between 22-24 May 12 we traveled to the Norwich coast and
spent a wonderful three days at a friends cottage.<span style="mso-spacerun: yes;"> </span>Supatra was still becoming a little more tired and for the last
week I was starting to have to lift her into the car and carry her up and down
the stairs at home.<span style="mso-spacerun: yes;"> </span>What I should also
mention is that over the course of about 3-4 weeks Supatra also started to
become more nauseous while on the antineoplaston infusions and especially if we
tried to feed her while she was being infused.<span style="mso-spacerun: yes;">
</span>At around the same time as taking her off steroids Punny started to try
and feed her in between the infusions but even then in the latter weeks she
would vomit on occasion when not on her dose.<span style="mso-spacerun: yes;">
</span>At no point during these nauseous moments did she complain of any other
symptoms and each time it was shortly after either eating or drinking a lot of
water and therefore felt it was a result of one of those two things.<span style="mso-spacerun: yes;"> </span>The problem was that we had fixed times when
we could administer all her other medications and supplements and by early May
it was becoming more and more difficult to stay on schedule and give her all
the medications and supplements she needed.<span style="mso-spacerun: yes;">
</span>By the time we returned from our Norwich trip it was beginning to be
very difficult to administer all the pills and liquid supplements.<span style="mso-spacerun: yes;"> </span>Each one of these medications needed to be
taken either before, during or after food and the majority had to be taken
several times a day.<span style="mso-spacerun: yes;"> </span>Each time Supatra
vomited it would set this schedule in disarray as we would then have to wait
for her stomach to settle before feeding her small amounts of food, followed by
all her pills and syringes filled with supplements.<span style="mso-spacerun: yes;"> </span>She was still a fighter up until the day before she died and
could still take two pills at a time and shoot the syringes into her mouth on
her own with little help.<span style="mso-spacerun: yes;"> </span>However, by
the 24th May we knew that something was not right and we started discussing our
options with regard to asking my employers to delay our move back to
Canada.<span style="mso-spacerun: yes;"> </span>At this time we were still of
the mind that it was the high dose of antineoplaston that was causing her
tiredness and a combination of being a long term steroid user and now the
withdrawal of the steroids causing her ever growing weakness.<span style="mso-spacerun: yes;"> </span>Other symptoms of note over the two weeks or
so from the 24th May was that her left eye lid stopped blinking as much as
before and becoming a little worse then it was when she was first diagnosed in
January 2011.<span style="mso-spacerun: yes;"> </span>Her left eye was also not
tracking as well with her right. Yet, on the 24th May, although mostly in her
push-chair, she did get up and about while we were at the Bewilderment Park and
even tried the balance beam and hanging between two ropes.<span style="mso-spacerun: yes;"> </span>But the next day she seemed really exhausted
and could not walk more then a few assisted steps and I was required to carry
her to and from the bathroom.<span style="mso-spacerun: yes;"> </span>I also
noticed that she had less ability to hold her upper body up when sitting on the
toilet.<span style="mso-spacerun: yes;"> </span>The Houston clinic also
suggested running some additional blood tests as Supatra's haemoglobin (HG) was
starting to drop over the last week.<span style="mso-spacerun: yes;">
</span>This drop in HG was experienced before and therefore we were not worried
about this at this point as her HG had been bouncing up and down for months now.</div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
By 27 May, I noted that Supatra continued to get more and
more tired and was vomiting almost on a daily basis although she still had some
seemingly good days of no nausea.<span style="mso-spacerun: yes;"> </span>On
Monday 28 May 12, one week before she passed away, Supatra woke up more perky
then usual, got out of bed on her own and started doing a dancing jig trying to
make me and Jason laugh...always trying to make us laugh, that was my
Supatra.<span style="mso-spacerun: yes;"> </span>But a few hours later she was
tired again.<span style="mso-spacerun: yes;"> </span>By 29 May, Supatra was
sleeping for most parts of the day and needed assistance with everything but
she was still able to sit up or lean up on one elbow to take in fluids and her
medications.<span style="mso-spacerun: yes;"> </span>At this point we were so
close to her scheduled MRI scan that we decided to wait to see what the scan
showed before deciding about whether or not to put her back on steroids.<span style="mso-spacerun: yes;"> </span>We had now made the decision to request an
extension to stay in the UK thinking that we could not have Supatra pass away
while we were living in a hotel, but I needed to wait until my supervisor was
back from a trip before submitting a formal request.<span style="mso-spacerun: yes;"> </span>Something told Punny and me that Supatra was getting worse and
although we still had great hope, we also felt that she may not be with us much
longer although thinking in months not days.<span style="mso-spacerun: yes;">
</span>On 30th May, we had a regular scheduled oncologist appointment followed
by her MRI scan.<span style="mso-spacerun: yes;"> </span>The 30th of May did
not look to be a good day for Supatra as she was overly tired and slept through
the appointment barely having enough energy to open her eyes nor speak for the
doctor.<span style="mso-spacerun: yes;"> </span>We discussed with the doctor
about putting Supatra back on a pulse dose of steroids and she agreed and it
was decided to put her back on at 2 x 5ml/day for a few days then followed by a
controlled weaning down period.<span style="mso-spacerun: yes;"> </span>After
all her medical appointments that day we took her to her school to at least see
a part of the afternoon Queen's Jubilee celebrations.<span style="mso-spacerun: yes;"> </span>Normally, when at school and around her many friends she would
demand to get out of the pushchair and be amongst them but that day she did not
although she was awake.<span style="mso-spacerun: yes;"> </span>That evening we
got the bad news that the scan had shown a possible secondary cancerous lesion
in the dorsal area of the Pons but that her main Pons tumour looked the same as
previously.<span style="mso-spacerun: yes;"> </span>We felt so devastated again
but were still hopeful that maybe the Houston clinic's interpretation would be
different.<span style="mso-spacerun: yes;"> </span>In the back of my mind
though I felt this would likely mean the worst.<span style="mso-spacerun: yes;"> </span>Supatra seemed to perk up in the evening and in the middle of the
night was awake and talkative something that was a fairly regular occurrence in
the past and knowing she just went back on the steroids knew it was the drug
that was giving her this mid-night boost.<span style="mso-spacerun: yes;">
</span>On Thursday 31st May though, Supatra's symptoms did not change and she
continued to be tired and very weak.<span style="mso-spacerun: yes;"> </span>I
also noticed that her speech was even slower taking 10-20 seconds to sometimes
react to our questions and then mostly answering in one syllable words,
whispering no and yes to our questions.<span style="mso-spacerun: yes;">
</span>At this point we had to help her everywhere and we have this little
potty chair that sits next to her bed and over these last few days downstairs
when she is on the sofa so that she does not have to move far to go and
wee.<span style="mso-spacerun: yes;"> </span>But at this point she even needed
help with this and on occasions could only stand by making her legs stiff.<span style="mso-spacerun: yes;"> </span>Her ability to sit on the potty or loo on
her own was now pretty much gone as she could noticeably no longer support her
upper body.<span style="mso-spacerun: yes;"> </span>We thought that it must be
the new lesion in the Pons that was maybe pushing on her cerebellum and
affecting her ability to move.</div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Its a really strange situation to be in as me and Punny were
going off previous experiences with her symptoms.<span style="mso-spacerun: yes;"> </span>Looking back it was clear that Supatra was deteriorating but at
any given moment during these last few days with her we were still of the belief
that she would keep fighting and that she would level-out so to speak.<span style="mso-spacerun: yes;"> </span>At no time did I feel she was about to leave
us in a matter of days.<span style="mso-spacerun: yes;"> </span>She still had
her perky moments and we still had conversations although more difficult now,
she still took her medications when she was not nauseous - we just did not see
it coming and we are consumed with guilt that we did not make more of the last
few moments we had with her.<span style="mso-spacerun: yes;"> </span>How could
we have missed all these symptoms?<span style="mso-spacerun: yes;"> </span>Why
did we not reduce or completely take Supatra off the antineoplaston treatment
to give her body a break?<span style="mso-spacerun: yes;"> </span></div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Friday, 2nd June was a terrible day in that we had left her
on the sofa as we usually did and while we were busy cleaning up and preparing
the next meal Supatra tried to get up and go to the washroom on her own but
fell to the floor after only a few steps.<span style="mso-spacerun: yes;">
</span>I heard some muffled cry and so walked out to the living room to find
her sprawled out on the floor and trying to cry but not really making much of a
sound.<span style="mso-spacerun: yes;"> </span>I immediately picked her up
after making sure she did not seriously hurt herself and calmed her down asking
what happened.<span style="mso-spacerun: yes;"> </span>Supatra stated that her
back and legs gave out and that she now had a sore lower back.<span style="mso-spacerun: yes;"> </span>I made her comfortable and stayed with her
for some time and warned Punny that we now had to be with her constantly and if
that was not possible to check on her every 5-10 mins.<span style="mso-spacerun: yes;"> </span>I felt so bad for Supatra and guilty not
knowing how long she may have been lying there.<span style="mso-spacerun: yes;"> </span>Later that night we had a social engagement with the kids and
that evening Supatra had what seemed like another seizure in her brain as she
told us she was seeing things and her sight was jerky with people around her
moving in a funny way.<span style="mso-spacerun: yes;"> </span>It took us
several hours to calm her down to the point where she seemed OK again but she
did pee without giving any indication she was about to.<span style="mso-spacerun: yes;"> </span>This is something she also did twice on the
31st May although we thought nothing of it - we just thought it was because
Supatra could not communicate quickly enough with us.<span style="mso-spacerun: yes;"> </span>In hindsight, this was another serious indication that her body
was starting to let go - incontinence.<span style="mso-spacerun: yes;"> </span></div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Although knowing she was more poorly, up to this point we
still had our blinders on to the fact that she may be in the beginning stages
of death.<span style="mso-spacerun: yes;"> </span>The following Sunday, 3rd
June Supatra had some more bad moments in the morning.<span style="mso-spacerun: yes;"> </span>First, she did manage to move off the bed
and support herself to throw up into her potty but made a bit of a mess.<span style="mso-spacerun: yes;"> </span>Punny was downstairs preparing breakfast and
her medications while I was still snoozing with Jason.<span style="mso-spacerun: yes;"> </span>Something just told me to check on Supatra
and that is when I noticed the vomit and mess.<span style="mso-spacerun: yes;">
</span>I called Punny to help me clean up while making sure Supatra was back in
bed in a comfortable position and that she was not still feeling sick.<span style="mso-spacerun: yes;"> </span>She indicated that she was OK now and we let
her rest.<span style="mso-spacerun: yes;"> </span>I came back to her room about
5-10 mins later and Supatra was lying on the floor having defecated on herself.<span style="mso-spacerun: yes;"> </span>Another moment of shear panic and guilt that
she was left alone even for a few minutes and left in such a state.<span style="mso-spacerun: yes;"> </span>We cleaned her up, cleaned up the room and
made her comfortable on the bed again.<span style="mso-spacerun: yes;">
</span>This time we stayed with her and tried to tell her that everything would
be OK and that we loved her.<span style="mso-spacerun: yes;"> </span>I thought
it was just her missing the toilet and not being able to hold herself up but
again in hindsight it was another clear indication that she could no longer
control her bowel movements.<span style="mso-spacerun: yes;"> </span>Supatra
was still in remarkably good spirits and did not complain of her lack of
ability to move nor of anything else.<span style="mso-spacerun: yes;">
</span>Then after having some food and her medications she just vomited again
all over the bed and herself without warning.<span style="mso-spacerun: yes;">
</span>Again, we thought it might have been because of the water and food
consumption like so many times before and it certainly did not look like
projectile vomiting, which is an indicator of pressure on the brain.<span style="mso-spacerun: yes;"> </span>However, in hindsight this was a last clear
warning that something was not right and our last real opportunity to do something
that could have possibly extended her life that much longer - how long?<span style="mso-spacerun: yes;"> </span>We do not know but maybe another week or
two??<span style="mso-spacerun: yes;"> </span>We should have known, we should
have taken her off the antineoplastons, we should have increased her
steroids....why we did not see it is beyond us and we are killing ourselves
trying to come to terms with this guilt that somehow we let our little girl
down.</div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
For the rest of that Sunday we made Supatra comfortable
downstairs on the living room sofa where she spent a lot of time so that she
could be around Jason and watch her favourite cartoon shows.<span style="mso-spacerun: yes;"> </span>I stayed by her most of the day trying to
communicate with her asking if she was alright and trying to have her take her
medications which she did manage to do.<span style="mso-spacerun: yes;">
</span>She managed to swallow the pills and take her oral syringes of potassium,
iron, and steroids.<span style="mso-spacerun: yes;"> </span>Later I also fed
her and she was still able to chew albeit slowly and swallow.<span style="mso-spacerun: yes;"> </span>She did not talk to me but was attentive and
gave me yes and no answers to my questions although at times she seemed spaced
out.<span style="mso-spacerun: yes;"> </span>Later in the afternoon when I
thought she had layed around much too long I asked if she wanted to go out in
the garden and see the flowers that were blooming.<span style="mso-spacerun: yes;"> </span>She said yes and so I got her dressed into some warm clothes and
carried her in my arms around the garden pointing out all the flowers.<span style="mso-spacerun: yes;"> </span>She felt lifeless in my arms and only
managed a few yes's when I would ask if she could see the flowers I was
pointing at.<span style="mso-spacerun: yes;"> </span>Our beautiful moment together
was cut short when it started to rain and she indicated she wanted to go back
inside.<span style="mso-spacerun: yes;"> </span>I wish I could live those
moments over again.</div>
<o:p></o:p><br />
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
As I think back to this last weekend and the following
Monday of Supatra's life it all seems a blur to me.<span style="mso-spacerun: yes;"> </span>We should have seen the seriousness of her condition but did not
although we were very worried we just felt she would fight through this rough
time.<span style="mso-spacerun: yes;"> </span>It was Punny's turn to sleep with
Supatra on Sunday/Monday night and she tells me that Supatra woke up as usual
in the middle of the night and although most of her words were unintelligible
she did clearly say 'mommy, I love you' as if knowing this was her last chance
to say something.<span style="mso-spacerun: yes;"> </span>The next morning,
Punny tells me she was seemingly OK.<span style="mso-spacerun: yes;"> </span>I
had to go in to work to start the process of requesting a delay in my posting
and went to see Supatra before I left the house to see if she was OK and to say
good-bye.<span style="mso-spacerun: yes;"> </span>Although awake and looking at
me she did not respond to my good-bye.<span style="mso-spacerun: yes;">
</span>I told her I would be home early to be with her.<span style="mso-spacerun: yes;"> </span>It was the last communication I had with
Supatra where I was sure she understood and heard me.<span style="mso-spacerun: yes;"> </span>Another huge burden of guilt as I should have known things were
not good with Supatra and should have stayed home with her, to provide Punny
that extra support, to be by Supatra's side.<span style="mso-spacerun: yes;">
</span>That Monday, 4th June was a rough day for Punny and Supatra.<span style="mso-spacerun: yes;"> </span>Supatra had another bout of nausea and
although managing some food and medicine she vomited and had a bowel release at
the same time at about 11am.<span style="mso-spacerun: yes;"> </span>Punny was of
course very busy trying to clean Supatra up and the mess left behind.<span style="mso-spacerun: yes;"> </span>Luckily she had called a friend to come over
and she was already there to help.<span style="mso-spacerun: yes;">
</span>Punny also managed to get another 5ml steroid dose into Supatra which
she kept down and so when she went to sleep shortly after this incident, Punny
thought nothing of it and thought she would just sleep for an hour or so like
she has been doing so for so many weeks now.<span style="mso-spacerun: yes;">
</span>But Supatra was not to wake up again and seemed in a half comatose state
with her eyes half closed and staring forward, breathing slightly more
laboured, not moving nor speaking.<span style="mso-spacerun: yes;"> </span>I
had no idea what was happening as I was at work but after speaking with our
friend on the phone and her telling me that Supatra was just sleeping all the
time and not communicating I felt something was not right and came home shortly
thereafter.<span style="mso-spacerun: yes;"> </span>When I saw Supatra, I knew
she was not in a good way and took her off the antineoplaston treatment.<span style="mso-spacerun: yes;"> </span>Punny assured me that she had some fluids
and a full 5ml steroid dose around 12-1230 after being sick and so felt that
there was no need for a Decadron injection at this point.<span style="mso-spacerun: yes;"> </span>After about an hour of being with Supatra
and watching her breathing I knew she was in serious trouble and ready to pass
away but was indecisive on whether we should give her a Decadron injection or
not.<span style="mso-spacerun: yes;"> </span>This needs some explaining as some
may say why didn't you just do it?<span style="mso-spacerun: yes;">
</span>Well, the last time we gave her an injection on the advice of her
American doctors she had a bad reaction and we think was a significant factor
in causing her brain seizures that she had in November 2011.<span style="mso-spacerun: yes;"> </span>After these seizures she was off the
antineoplaston treatment for some time and we had to restart her treatment from
square one.<span style="mso-spacerun: yes;"> </span>After this lengthy period
of getting her back up near her target dose over a two month period her scan on
1 Feb 12 showed a small increase in tumour size.<span style="mso-spacerun: yes;"> </span>So, when I discussed whether we should give her an injection at
this point we also did not want her to go into a seizure and in this case make
her much more uncomfortable.<span style="mso-spacerun: yes;"> </span>We decided
that we would wait for another hour or so as we felt could give this injection
at anytime and instead called in the True Colours Team nurses to assess
Supatra's condition while sending off a message to the Houston clinic for their
advice.<span style="mso-spacerun: yes;"> </span>When the nurse arrived about an
hour later (now around 1630-1700) she thought it was Supatra's last moments and
told us that she could go at anytime.<span style="mso-spacerun: yes;">
</span>We discussed the advantages of giving her a steroid injection but she
thought this might cause Supatra more discomfort and that it would not help her
anymore.<span style="mso-spacerun: yes;"> </span>Shortly thereafter I received
word the US doctors and they suggested giving Supatra a 4ml injection of
Decadron at around 1800hrs.<span style="mso-spacerun: yes;"> </span>We just did
not know what to do and were indecisive on the treatment.<span style="mso-spacerun: yes;"> </span>In my mind Supatra was already on her way as
she had now been in this comatose state for about six hours, had released all
her bowel movements and was only managing to swallow once in a while as if by
reflex. On one hand it might be what Supatra needs to release her from this
comatose state that she was now in or it could put her into a seizure and cause
her other problems, maybe even speeding up the dying process.<span style="mso-spacerun: yes;"> </span>In the end, we decided against the Decadron
injection as the nurse felt that the 5ml steroid dose given earlier would have
improved her condition if it was to work but it did not and therefore giving
her an injection now would not do anything to help her at this point.<span style="mso-spacerun: yes;"> </span>We were fraught with despair as to what was
happening with Supatra and we comforted her as much as possible during these
last hours, telling her we loved her, kissing her, caressing her and helping
her move into different positions that would help her keep her airway as clear
as possible.<span style="mso-spacerun: yes;"> </span>By around 1900-2000hrs her
breathing was a little more laboured and mucus was starting to build in the
back of her throat that made it her breathing sound a lot worse.<span style="mso-spacerun: yes;"> </span>Late in the evening she also developed a
fever and we managed to have her swallow a few tea spoons of water and some
Ibuprofen for her fever but these were only swallowing reflexes and I believe
she was already gone.<span style="mso-spacerun: yes;"> </span>I hope beyond
hope that she was still able to feel us and hear us as we continued to hug, lay
wih her, and talk to her.<span style="mso-spacerun: yes;"> </span>I got to
spend the last night with her and in the morning at around 0700 seeing that her
fever was back, at one point her eyes flickered up and down, and that her
breathing was now much more laboured, got Punny to see her one last time.<span style="mso-spacerun: yes;"> </span>At 0827, Supatra took her last breath and
died in my arms at 0829. </div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
<br /></div>
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
My grief....our grief is insurmountable and we still think
about the last few days over and over trying to determine, to think whether we
did something wrong or could have been more perceptive as to what was happening
with Supatra over these last two weeks of her life.<span style="mso-spacerun: yes;"> </span>Both me and Punny feel so guilty for not spending more time with
Supatra during her last few days, for not taking her off the antineoplaston
treatment a few days earlier, for not giving her the steroid injection on the
Monday afternoon.<span style="mso-spacerun: yes;"> </span>In our hearts we know
she could have survived longer - maybe not too much longer but longer for sure
had we done any of these things.<span style="mso-spacerun: yes;"> </span>I
don't know if we can get over our grief and move on, I don't know if we deserve
to.<span style="mso-spacerun: yes;"> </span>Because of our inattentiveness our
Supatra is now gone when in hindsight she might still be with us today holding
on.<span style="mso-spacerun: yes;"> </span>Are we being unfair to
ourselves?<span style="mso-spacerun: yes;"> </span>Everyone says so but the
words are just not helping knowing that our Supatra is gone forever never to be
replaced, having our hearts broken forever, having made Supatra suffer for so
long, having gone to work the last day she was with us, not having taken some
extra moments with her while she was still able to understand so that I could
make sure that she knew how much I loved her..........my Supatra, my first
born, my only daughter.....gone forever</div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Love you Supatra, take care, watch over us</div>
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
<br /></div>
<div class="MsoNormal" style="margin: 0cm 0cm 0pt;">
Love Daddy, Mommy and Jason</div>Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com4tag:blogger.com,1999:blog-6436664812597694354.post-5409745427550850272012-05-16T00:24:00.000+01:002012-05-16T00:24:11.486+01:0015 May 12<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Hello Everyone,</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Again, it has been some time in between posts but there are reasons for that.<span style="mso-spacerun: yes;"> </span>First, Supatra’s condition nor<span style="mso-spacerun: yes;"> </span>treatment plan is changing much and therefore there is less to update you with.<span style="mso-spacerun: yes;"> </span>Second, it is becoming more difficult to find the time to write and keep everyone updated on all the activities we are doing.<span style="mso-spacerun: yes;"> </span>We are keeping busy and I could post more regularly with shorter updates as to our activities but finding the time is difficult.<span style="mso-spacerun: yes;"> </span>Today I would like to provide a short update on Supatra followed by some important news that not everyone may be aware of.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Since my last update Supatra has remained generally the same health and symptom wise.<span style="mso-spacerun: yes;"> </span>Supatra reached her ANP target dose several weeks ago and since then she has become more lethargic and tired which is a known side effect of the ANP treatment.<span style="mso-spacerun: yes;"> </span>It is the same symptom she developed about a week after reaching her target dose back in Houston in October.<span style="mso-spacerun: yes;"> </span>The good news is that she still has her energetic moments and when engaged in activity that she finds interesting and exciting she can still get herself involved and physically active.<span style="mso-spacerun: yes;"> </span>Of course her tiredness really kicks in when she is on her infusions and then gets better during her off times.<span style="mso-spacerun: yes;"> </span>Punny continues to take her to school a couple times a week for a few hours each time and we try to either bring her to visit her friends or have them come to our house.<span style="mso-spacerun: yes;"> </span>A few weeks ago we had a week long break in Devonshire at the Buckfast Abbey which was provided to us by the Torbay Holiday Helpers Network (THHN).<span style="mso-spacerun: yes;"> </span>It was a wonderful time and Supatra and Jason got to spend a few days on the beach although one of those days it was rather cold for Supatra.<span style="mso-spacerun: yes;"> </span>We also enjoyed the scenery, caves, and Pennyville Farm.<span style="mso-spacerun: yes;"> </span>Supatra managed to ride a pony albeit with a little help and drive her first (electric) car around a track by herself.<span style="mso-spacerun: yes;"> </span>Jason also rode an electric quad bike by himself and had fun crashing into things.<span style="mso-spacerun: yes;"> </span>We would like to thank everyone at the THHN and especially Mr. Luke Tillen who made it all happen.<span style="mso-spacerun: yes;"> </span>All our needs were provided for by local businesses including our accommodations, food, and fees for some of the local attractions.<span style="mso-spacerun: yes;"> </span>On the way to Buckfast Abbey we also took the opportunity to meet our friends the Bainbridges’ and have an opportunity for Supatra to see Billie again as the last time they met was in Houston in October 2011.<span style="mso-spacerun: yes;"> </span>We also stopped in to see Richard and Chantal, parents of little Amelia who was recently diagnosed with a DIPG tumour and is also undergoing ANP treatment.<span style="mso-spacerun: yes;"> </span>We thank them both for their hospitality and wish Amelia and Billie all the best in their battle to beat this disease.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The big news for everyone is that we will be moving back to our home country – Canada in late June of this year.<span style="mso-spacerun: yes;"> </span>My employment in the UK was always intended to be temporary and we were lucky enough to get extended for another year when my replacement was not able to come and then get extended again this last year due to more unfortunate circumstances.<span style="mso-spacerun: yes;"> </span>We have really enjoyed our time in the UK, for me both at my work and for us as a family because of all the great friends we have made.<span style="mso-spacerun: yes;"> </span>Unfortunately, our journey will take us to a new city where we have no friends and I only have a few work acquaintances, so it will be a very difficult move especially for Punny and Supatra.<span style="mso-spacerun: yes;"> </span>I think Jason will be fine as long as he has his toy cars and Thomas the train set, all will be good.<span style="mso-spacerun: yes;"> </span>But Supatra will miss her school and her many friends terribly and we will have to work hard at getting her settled into her new surroundings and into a new school.<span style="mso-spacerun: yes;"> </span>Punny, will also be hard hit as she has so many friends here in the Cambridge area that it will be very hard to match this network of support in Ottawa.<span style="mso-spacerun: yes;"> </span>The weeks are flying by fast and it will soon be time for us to hold our farewell party, try to fit in another short vacation in the UK and try a few more fundraisers.<span style="mso-spacerun: yes;"> </span>We will be holding a group car boot sale scheduled for the last weekend in May, I believe on Saturday 26 May at the Oakington village site.<span style="mso-spacerun: yes;"> </span>We will have lots to sell including some of our UK electric equipment and gadgets that we cannot take with us – so please come out and by some quality used stuff.<span style="mso-spacerun: yes;"> </span>I will also still be participating in the London Nightrider cycling event on 9-10<sup>th</sup> June with 11 others to raise money for Supatra.<span style="mso-spacerun: yes;"> </span>You can donate at our team justgiving link found here: <span style="mso-spacerun: yes;"> </span></span><a href="http://www.justgiving.com/molesworthnightriderteam"><span style="font-family: Calibri;">http://www.justgiving.com/molesworthnightriderteam</span></a><span style="font-family: Calibri;"> <span style="mso-spacerun: yes;"> </span>This event will see upwards of 3000 cyclists riding 100km through London’s streets throughout the night of 9-10 June.<span style="mso-spacerun: yes;"> </span>A big event and I hope we will raise some significant money for Supatra’s treatment all of which will be deposited with the Joseph Foote Fundraising Trust (JFFT) which has recently merged with Brain Cancer UK.<span style="mso-spacerun: yes;"> </span>What Supatra does not use for her treatment will stay with the charity for research use in the UK.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">It will be difficult for us to continue the momentum of our fundraising efforts, at least initially and so I hope that all of you in the UK will continue to spread the word and encourage others to raise funds on our behalf for Supatra’s treatment.<span style="mso-spacerun: yes;"> </span>Once in Canada we will have to make some changes to the Paypal donation button but will keep the Virginmoneygiving link as funds raised in the UK will still get deposited into the JFFT account and earmarked for Supatra’s treatment costs.<span style="mso-spacerun: yes;"> </span>Over the longer term I hope to find another charity, trust or foundation in Canada that will support us as the JFFT has done over the last year.<span style="mso-spacerun: yes;"> </span>This is a great thing that they have done for us and a few other families, in order to help us raise funds more easily and under circumstances where the donor can be assured the money is spent on precisely what it is meant to be spent on.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">I<span style="mso-spacerun: yes;"> </span>have also had a ‘Treatment’ page added to this blog where I will outline in detail all the treatments Supatra has undergone, the treatments she is currently on, and the dates when she started them.<span style="mso-spacerun: yes;"> </span>I hope this will make it easier for those parents of newly diagnosed children with brain tumours to find out what we have done and what we are doing to try and save our daughter.<span style="mso-spacerun: yes;"> </span>This page should be populated by 23<sup>rd</sup> May or earlier.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Best wishes to all,</span></div>
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<span style="font-family: Calibri;">Jorg</span></div>Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1tag:blogger.com,1999:blog-6436664812597694354.post-13216015512507248002012-04-26T21:44:00.000+01:002012-04-26T21:44:27.463+01:0026 Apr 12Hello Everyone,<br />
<br />
Well, two weeks have gone by since my last post but really there is not much to say nor report....which is a very good thing! Supatra is doing as well as can be expected and continues her good fight against this ghastly disease. She is still a little unstable and walks with a slightly wider gait then several months ago; she is also a little weaker muscle wise but not more so then I last mentioned it; and her speech is slow as well. However, other than these issues and her ever present left facial palsy she continues to do very well and its even more remarkable considering we were told that it would be wise to mark her birthday and Christmas early back in 2011 after her diagnosis. She continues to be in good spirits, laughs and makes jokes and just simply carries on day to day. I sometimes sit back and think about all she has been through and the small number of times she has complained or talked about how difficult things are and it just amazes me. In fact, I have probably complained more to Punny and Punny to me about how difficult things are in our day to day lives then Supatra has about her condition and all the stuff we have put her through. It just amazes me and sometimes shames me to think that this little girl is being more at ease about the whole thing then me or even Punny. Of course part of this is the added burden of us knowing the diagnosis and prognosis whereas Supatra only knows that she has a cancerous tumour without knowing the whole truth. She knows its bad though as we have had to have some heart to heart chats in the past about what is happening and why she needs to take all these different medications and have the constant infusions but she certainly does not know everything. I just pray, pray, pray that her body will start to fight this tumour on its own with the added aid of the drugs we are giving her. She has always had a seemingly weak immune system and we are hoping that with time and age her full immune system will kick in. In the mean time 'stable disease' is what we hope for at the minimum.<br />
<br />
Earlier this week we also took an additional extensive blood and urine sample for a comprehensive testing to see if there may be other underlying issues in her body that might be hindering her immune system or hindering the healing process. We should know the results within about three weeks and hope that it will tell us something - at least something we can fix or mend should there be something else wrong with her. We also increased her antineoplaston dose to full target dose of 200ml for the AS-10 and 18ml for the AS1-2. She seems to be taking this very well so far.<br />
<br />
Don't forget we are still fundraising to help pay for this treatment and please take a moment to check our 'Forthcoming Events' page for upcoming fundraisers. There are some interesting ones on the horizon like Matthew May's tandem skydiving challenge at the end of June. Matthew is hoping to get at least 30 people to jump for Supatra and I believe he has about 16 people so far! You can also get more info direct from Matthew by looking him up on Facebook. Then on 28th June there is 'Supatra's Big Night Out' at Antsy Hall in Cambridge. Still plenty of tickets but they are going fast!<br />
<br />
Thank you to everyone for the continued support, love, and well wishes. <br />
<br />
Best wishes to all,<br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-74533527355929630592012-04-11T20:53:00.002+01:002012-04-11T20:53:39.207+01:0011 Apr 21Hello everyone,<br />
<br />
It has been too long since we last posted but I have had little inclination to do so as I seem to get busier and busier. Good news is that there is no change in Supatra although she has her occasional bad days in between the majority good days. I know I have not posted in awhile but I want to keep this post relatively short compared to my usual long winded ones :) <br />
<br />
It seems like just yesterday Supatra had her 7th birthday.... oh wait it was just yesterday! I swear she had a birthday for about a week starting with her party on the 24th, followed by her actual birth date on the 29th, then another celebration at the fabulously organised Destiny Charity Show in Norwich, and then some further late birthday gifts, wishes and treats throughout the next week. Supatra really enjoyed herself and although we have not got around to sending thank you notes for the gifts - thank you to everyone who gave her one; she enjoys them all! This last Monday we also spent the day at Legoland with our close friends Dave, Natalie, Isabelle, Sam, Sophie, William, and Lilly. Supatra had a great time on the rides and loves the roller coaster, water ride and pirate ship. It rained all day but that did not stop us from having a great day out although we were all knackered after that. We were especially surprised with Supatra who managed to walk on her own for most of the day. Very surprising as she is very tired and weak most days from her treatment and the affects of the steroids she must take. We received the Burzynski clinic's report on her last MRI scan and basically has the same assessment as that from the NHS, that the tumour enhancement size has not changed and that it is too difficult to measure because of its reduced enhancement from the previous scan. She still has all her symptoms although some of these can be from the treatment and steroid use while the left facial palsy is definitely tumour related and has not gone away. To me this means that although the tumour does not seem to be growing it is also not receding enough to have a positive affect on her facial palsy. We continue to press on, hope for the best and wish her smile back. Supatra continues to give it her best fight.<br />
<br />
I would like to say a special thank you to Matthew and Vanessa May for their continued support and some great fundraising initiatives on behalf of Supatra. If anyone is interested in Skydiving please look them up on Facebook under Destiny Duo and let them know. Matt is trying to get 30 people to skydive and raise 300 pounds or more each for Supatra. Then there is Supatra's Great Night Out party at Cambridge's Antsy Hall scheduled for the 28 Jun 12. This will be a big event so get your tickets now before they are all gone!<br />
<br />
Thanks to everyone for following Supatra's story and for your many well wishes and continued donations.<br />
<br />
Best wishes to all,<br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-70010472678366834762012-03-28T22:58:00.000+01:002012-03-28T22:58:58.116+01:00NHS MRI Report has Arrived!Hello Everyone,<br />
<br />
Today we received the NHS's report on Supatra's latest MRI scan and it is good news! There has been no significant change since the last scan on 1 Feb 12, no new lesions and less enhancement of the main tumour body again as compared to the 1 Feb 12 scan. So, no mention of shrinkage but overall a very welcome report considering we were thinking that the tumour might have started growing again. The Burzynski clinic is still awaiting the arrival of the scan CD for their own interpretation which I hope we will get next week. I still have not got a written report from the clinic for the last MRI scan and have asked them to do their own reports using the scan CDs I am sending them as interpretations of MRI scans can vary greatly from doctor to doctor. So it is important that the same doctor provides his/her analysis on each of the scans so there is a uniform assessment process; or at least as uniform as it can be. I still have not got around to figuring out how to paste the PDF copies into this blog but for the time being I have created images of them and then pasted the last two reports below.<br />
<br />
We are very happy with the status quo and the fact that the tumour seems to be getting less active as the decreasing enhancement indicates. For those who may not know how this works I will try to explain. During an MRI scan the patients body part is scanned first using no drugs to enhance the afflicted area. Then they pause the test to inject a contrast drug into the patient that will enhance blood vessels. Tumours rely and create a lot of blood vessels within the tumour mass to help continue to feed the tumour growth (rapid cell division). Therefore if the contrast shows a lot of enhancement on the imagery then it means the tumour has many active blood vessels indicating an active tumour. If the enhancements are less so or decrease then it can only mean less activity = less growth or no growth of the tumour mass. However, what the MRIs do not do is necessarily pick up all parts of the tumour as is usually the case with DIPGs because DIPGs are DIFFUSE tumours that wrap themselves around the nerves that make up the glioma and also tend to grow little fingers or tentacles from the main mass. It is these 'fingers' that can be very difficult to pick up with the MRI and so we think these are definitely still there as Supatra's left face continues to be affected by the cancer. We hope that if Supatra's tumour can remain stable for the next 4-6 months or more that it just might start to breakdown from the lack of an ability to grow further or that Supatra's other supplementation will have a chance to beef up her immune system enough that it will start eating away at the tumour cells themselves. You just never know! Let's hope, let's pray, keep our fingers and toes crossed that this will be the case for Supatra and please keep fundraising so that she can maintain this treatment. Thank you all!<br />
<br />
Jorg<br />
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<br />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1tag:blogger.com,1999:blog-6436664812597694354.post-19381315604212476792012-03-25T20:12:00.002+01:002012-03-26T23:50:22.512+01:00Emotional Roller CoasterHello everyone,<br />
<br />
The last week or so has been an emotional roller coaster ride for me and Punny as we watched Supatra getting more poorly almost on a daily basis. Over the last while Supatra has been getting noticeably weaker in her limbs and then her tiredness increased as well to the point where she was dozing off at least 4-5 times a day even when engaged in an activity. One minute she would be alert and the next she would be asleep and/or nodding off. Then at about this time last week we noticed her speech dramatically slowing and she was having ever more difficulty chewing and swallowing. I must note for those of you reading this blog for the first time that Supatra has left facial palsy which basically means that the left side of her face is paralysed and not functioning normally and that she has had this tumour symptom since last January/February. The palsy has affected her ability to chew food properly but she was still able to do so and get by. However, like last November when she had her seizures the chewing slowly became more problematic this week and she would also need to sip some water in order to help with her swallowing. We were so worried and distraught knowing that all these progressive symptoms can be related to the tumour and its possible growth. For the last 8-9 months we have been living a near normal life without thinking about Supatra's condition too much because her condition has been so stable. Only in November and this past week have our worst thoughts come back to haunt us again as she became worse. I just hate those thoughts as any normal person would thinking about their little one not being there anymore. I hate this tumour, I hate the uncertainty, and most of all I hate that this is happening to someone so young...to lots of children so young. Why make these poor Innocent children suffer like this? Why can't it just be an old persons disease? F#$k!!<br />
<br />
While all this was happening we were also starting to wean Supatra down on her Dexamethasone steroid dose in preparation for a large blood diagnostic test that we were planning for this next week. The test requires Supatra to be taken off of Dexamethasone for a few days before hand as well as stopping all non-essential supplements and also stopping the ANP treatment for at least 1-2 doses. We had not reached the point of stopping the supplements and we were already thinking that that might allow the tumour to re-start its growth as well so we were going to keep giving some of the more important supplements and herbal extracts. We also realised this week that her symptom progression was very similar to that which she had in November just before her siezures and it was also during a time we were trying to wean Supatra off her Dexamethasone steroids and so we decided on Thursday to increase her dose back up and give her a slightly larger pulse dose of 2.5ml/day; up from the 1.25ml dose she has been on for the last few months. We gave this initial 2.5ml dose in the early evening of 21 Mar 12 and by the next day she was again more perky, alert and talkative. Since then she has improved again and although I have my fears of what might be happening with her tumour it has given us some hope again that her reactions over the last few weeks might, just might be due to her body getting used to her 1.25ml dex dose and the fact that we then were trying to wean her off the dex completely. We are ever hopeful and of course hugely anxious about getting her MRI Scan report which we hope to have sometime this Monday. We are now approaching 14 months since Supatra's diagnosis and at least 17 months since we first noticed something wrong with her. This is a crucial time for us and of course for our little girl who continues to grow up, albeit with a less then ideal childhood considering her difficulties with her cancer. She should be out doing everything a healthy 6, soon to be 7 year old is doing; riding a bike, running around in a park, going swimming, etc. <br />
<br />
This Saturday we also celebrated Supatra's birthday early by holding a little party at Funky Fun House in Cambridge with 12 of her close friends. For those not in the know, Funky Fun House is an indoor play area for kids that has a big jungle gym type set-up for 2-12 year old. This is Supatra's third time holding her birthday celebrations there and although we were trying to convince her to do something different she would not budge from her choice. Of course its her wish and her birthday so we just did what she wanted and surprisingly it was much better then the last time and I think all the kids had fun. The kids were able to play in the gym for an hour before a kids disco, some dancing games and then some lunch, cake and ice cream. Supatra amazed Punny and I, considering how poorly she was a few days ago by going up and down the jungle gym about ten times with only minor assistance here and there. Then she danced up a storm which you can see in the attached video and was alert and talkative the whole time. She really gave her all to make this an enjoyable birthday party for herself. A real inspiration knowing what she must be feeling like. Supatra's actual birth date is on the 29th March and we will give her another present on the day and allow her to have a little more cake as well (she's on a strict no sugar diet although we let her have a treat once in a while especially on special days like this). The video is a little dark at first but they do turn on the lights after about 1.5mins so take a look at Supatra's interesting dance moves! :)<br />
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All the best <br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-70050955964345974522012-03-12T17:04:00.001+00:002012-03-12T17:04:37.514+00:0012 Mar 12Hello everyone,<br />
<br />
Supatra continues to do well although still more tired than she was a little over a month ago. A few days after my last post I decided that we should try to edge Supatra's treatment closer to her target and increased the AS-10 by 2ml to 192ml. She was doing really well at 190ml and her rash had gone away for a number of days so thought that it would be OK BUT after increasing it her rash came back again..arrgh! The rash lasted almost all last week but started to recede by Friday and as of yesterday it was almost all gone. The crappy thing is that the rash spots as they dissappear leave these ugly dark spots that look like bruises and they can take a couple of weeks to fad away. Her arms and legs right now look terrible. I feel so bad that she has to go through all this and it hurts me knowing that she wants so much to be out playing like regular kids and to be at school full time. Punny still gets her to the school for 3-4 hours once or twice a week but it is not the same. I also think that she and her best friend are starting to drift apart as they see less and less of each other. We also continue to fear for her mental capability as her memory continues to be affected and she becomes more and more dependent on as for almost everything. Its almost as if her brain is in reverse mode. Sometimes she is sharp as a whip but more times than not she does not remember things she would otherwise easily have done. Having to provide 24/7 care to Supatra is also starting to wear me and Punny down as one of us needs to be with her at all times and sleep with her. The constant getting up and changing Supatra, cleaning the bed, emptying the portatoilet next to her bed really gnaws at your energy and both me and Punny are starting to feel it. Even so I am trying to get back into the gym in the mornings but it is hard to work up the energy. <br />
<br />
We now have a date for Supatra's next MRI scan which is slated for the 22 March. Please put in an extra prayer for her on that day. I really hope to see some tumour shrinkage but part of me thinks that it will be the same as before as her blood analysis does not indicate any tumour breakdown. We can only hope and pray, I guess. At least Supatra is managing to stay at her dose level and who knows, maybe it will take an extra few months at this level to start slowly wearing down the tumour. We continue with the other alternative medicines as well. Additionally, we read an online book called "How to Live a Long and Healthy Life...The facts you need to safeguard the health of your family" By Kevin Wright and can be downloaded for free at <a href="http://www.bobbyshealthyshop.co.uk/">www.BobbysHealthyShop.co.uk</a>. It basically covers a whole bunch of things such as the water we drink, especially bottled water, chemicals in processed food, dairy products and such. Some of this stuff we already knew and or had heard about before but we lost sight of and the information in this book has re-focused our energy on trying to mitigate modern life's impact on Supatra's cancer. We not longer store her leftover food in plastic storage devices, no longer let her drink from plastic bottled water, we are trying to cut out as much processed food as possible - very hard to do - and in some cases where we can not make something fresh or find an alternative fresh source we try to choose the least harmful product out there. We are replacing all sugars with honey and other natural non-refined sweeteners and absolutely under no circumstances are we giving her any food that contains artificial sweeteners. Punny has been busy trying out our new bread maker and we are trying to cook fresh meals everyday. Of course shifting once habits to a healthier old style of eating is very difficult when one is so used to modern conveniences like fast food, easily prepared processed food and using the microwave to heat things up. We hope this new invigorated approach to a healthier way of living and eating will also have a positive affect in Supatra's cancer fight. If you can I would read this manual as there are some interesting facts and the author does source and provide links to all his research - an interesting read which can be consumed in one evening!<br />
<br />
Last, a big thank you to all the friends who ran in the Cambridge half marathon this last Sunday. It was beautiful weather for it and we came out to cheer them on as well. Everyone did a superb job and I think most of them came in at around the 2 hour mark! So, well done and thank you for enduring the pain on behalf of Supatra!!<br />
<br />
A reminder as well that the committee will be hosting an Auction night at the Lion and Lamb Pub in Milton (see events page) and there will be some fabulous items to be auctioned off including celebrity items and sports memorabilia! So please come out to this wonderful little village pub - that by the way has some delicious pub food and great social atmosphere - and support the fundriasing efforts.<br />
<br />
Till next time,<br />
<br />
Best wishes to all,<br />
<br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-60196884328800790302012-03-02T19:49:00.002+00:002012-03-02T19:49:24.883+00:0002 Mar 12Hello Everyone,<br />
<br />
You are all probably wondering whats happening with us and Supatra, eh? Well, me and Punny have been feeling rather tired lately and of course there is always something to do with two little kids in the house - even under normal circumstances. Supatra's condition is in a steady state at the moment with her dose now very near to the target but we have consciously decided to keep her at her current dose for the next few weeks as she has become more tired over the last 3-4 weeks since reaching this high dose level. As a reminder her target dose is supposed to be 200ml for the AS-10 and 18ml for the AS1-2 per infusion every four hours and she is at 190ml and 18ml respectively, so very close. However, when we took her to her current level about a week ago she again developed a rash which our UK doctor says is <span class="title">Erythema nodosum (you can google it) and could be caused by various things and so we decided that we would keep her at this dose for some time to see if she will adjust to it. Other than this she has been doing really well and went to school a couple of days this week. Supatra's grandma also sent her a Wii game console which she always loved playing at her best friend's house and has been pining for for months. This keeps her dancing and moving around and she seems to be more attentive and energetic when there is something that is motivating her. Over the last 3-4 weeks she has developed a short term memory problem which could be associated with some reported cases of "brain fog" while on antineoplastons or her brain functions are starting to be affected by the radiotherapy she has had. I certainly hope it is the former and that this will pass over time while on the treatment or correct itself once off treatment as the affects of the radiotherapy scares me. I would hate to think that we are undertaking all this effort only to have Supatra become permanently mentally handicapped in the coming years. Of course the doctors never told us of the long term affects of radiotherapy because in their minds there are no long term DIPG survivors. But what if this treatment and all the other alternative treatments we are giving her really work and she survives 3, 4, or 5 years? What is going to happen to her brain, her hearing and will she develop other cancer growths because of the radiotherapy? We just don't know and when I recently asked about the long term affects of the oncologist, she just side stepped the issue and did not answer the question. Obviously they do not want to tell us and have us worry about it because to them Supatra will pass away and it would be for-not to tell us of the problems she may face later in life - which to them will not come!</span><br />
<br />
<span class="title">Of course not posting on the site also means I have not got around to creating a spot where I can put past and future MRI scans and applicable reports for you to see but hopefully will get around to this in the near future. Her next scan will be scheduled sometime in the latter part of March and we hope beyond hope that her tumour will show some shrinkage. </span><br />
<br />
<span class="title">On the fundraising front, I would also like to say thank you again to all the folks at my office on RAF Molesworth who continue to give so generously to Supatra's Fairy Fund. For those interested there are also numerous friends and acquaintances who will be running the half marathon in Cambridge on 11 March and you can go here <a href="http://uk.virginmoneygiving.com/nataliegunner">http://uk.virginmoneygiving.com/nataliegunner</a> or <a href="http://www.justgiving.com/Helen-Hurworth">http://www.justgiving.com/Helen-Hurworth</a> for the teachers from Supatra's school who are also taking part. Then on the 15th March in the village of Milton at the Lion & Lamb pub there will be an auction night with many superb celebrity items to auction off. Please see the Forthcoming Events page for more info. On 24th March, l<span><span style="font-family: inherit;">ocal comedian Emily-Jayne Allen is organising an open-mike comedy night at the Portland Arms in Cambridge starting at 8pm; and last but not least Matthew May of Norwich's Destiny Due group is organising a big charity show in Norwich at The Talk on the 30th of March. This show will be huge with Heart FM DJs hosting the night and dozens of local acts participating. It is a family night out so bring the kids and we will be attending this one as well. This charity show will be raising money not only for Supatra's Fairy Fund but also for Cots for Tots, a very worthwhile and deserving charity. A big heart-felt thank you to all the organisers of this months many events! Unfortunately, we can not take Supatra and Jason to all these great events nor can we the parents always attend as we try to maintain a strict routine with Supatra's food and medication but we appreciate every one of you for your hard work and support.</span></span></span><br />
<br />
<span class="title"><span>There are additional planned events and I ask that you keep your eye on the 'Forthcoming Events' page even if you do not see a new blog post as some on the fundraising committee have access to this blog and will from time to time make improvements and add new events.</span></span><br />
<br />
<span class="title"><span>Good night all,</span></span><br />
<span class="title"><span>Jorg</span></span><br />
<span class="title"> </span><br />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-90434956693588826712012-02-24T00:07:00.002+00:002012-02-24T00:07:50.353+00:0023 Feb 12Hello Everyone,<br />
<br />
Apologies for not blogging for a while. I've been physically exhausted and mentally drained this week. I meant to write something in the blog but I often passed out in Supatra's bed right after reading her a bed time story. <br />
<br />
Thank you to everyone for your get well wishes, thoughts and prayers for my dad. There is a bit of good news regarding my dad's condition though. The tumour in his bladder wasn't cancer afterall and it can be easily treated however, the doctor has found a tumour in one of his kidneys. It is a relatively new tumour and they think they can surgically remove it. Despite the diagnostic, my dad doesn't want to go through the operation and hopes that the tumour will somehow magically go away on its own like all other illnesses that he has had in the past. My dad is a very strong minded and very stubborn individual, so if he's made up his mind on something it is nearly impossible to persuade him otherwise. I understand that he doesn't want anyone in the family to worry about him. He asked me not to go back to visit him, he doesn't want me to leave Supatra behind. He told me that my priority are my children and he is too old for me to worry about him. However, it is never that easy and I still don't know whether I will need to go should he undertake this surgery. At 85 years old anything can happen.<br />
<br />
Over the last week we also got several other pieces of bad news and I would like to convey my condolences to Leyel's mom and dad. We were heart broken to learn of Leyel's passing last month. Then just today, we learned that Olivia is having a turn for the worse. Olivia is six years old and her cancer seems to have returned and we ask that our friends hold an extra prayer for her. Be strong Alex, Momoko, Olivia and all of the Bianco family, we are thinking about you and praying with you.<br />
<br />
On a more cheerier note; Supatra had a good time at school on Wednesday. She loves to go to school for delicious school dinners and her show and tell. This week she showed and told about her neck lace and bracelet that she proudly made on her own. The school has been fantastic. Everyone in school, including head teacher, Supatra's teachers both last year and current year are very supportive since day one. People at school are so understanding with regard to Suptra's condition especially her friends in class 5 and class 6 who are lovely and very supportive. Supatra has teaching assistants helping her in the class and taking her where she needes to go. There are normally two teaching assistants one helping her in the morning and one does in the after noons. Thank you very much everyone for helping Supatra at school and make sure she is well and happy. I can't thank you enough for what you have done for us. Supatra is more tired than usual these last few weeks but that is due to the treatment as we are now at very close to target dose. We continue to inch up the dose over a prolonged period in order to ensure that she does not have another siezure or other problem that would result in having to take her off treatment.<br />
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I also want to say hi to Billie and Luna, hope you are both doing well.<br />
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Best wishes<br />
<br />
PunnyJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-61075398691285384172012-02-14T23:59:00.000+00:002012-02-15T00:13:03.039+00:00Happy Valentine's Day<br />
Happy Valentines day to all of you, hope you all have a wonderful day with your loved one. I am always thankful to God who gave me such true and loving people in my life. Thank you to all of you for your thoughts, kindness and love for us espeically to Supatra. Love is a miracle and with your love Supatra will be fine. <br />
<br />
Supatra is continuing to do well today. We kept her on the same dose over the last few days to see how she gets on and will likely increase her dose again tomorrow. Yesterday was a very busy day for Supatra, we went to the Hospice for music therapy and went to the park with her best friend for tobogganing. Indeed it was a fun day for her but also a very tiring day. So, we decided to take it easy today, stay in and watch a movie at home. Supatra is such a sweet little girl she never forgets to make us cards on special days such as today. She woke up this morning and gave me a big hug and kisses and told me how much she loved me. She also made a card for Jason and her daddy. We bought her a bounch of red roses because she loves flowers and loves to have them in her bed room. <br />
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I apologise for not updating the blog about Jason's birthday eariler. I meant to do it the day before yesterday but I was too devastated when I heard about my dad. Unfortunately, my dad was told that he has bladder cancer and that they found a few tumours in his bladder which need to be removed as soon as possible. My dad is 85 yeard old and very weak, having to go through an operation would take a toll on his health. I would love to visit him in Thailand but I can't leave my daughter who is also in her own cancer fight. So now I have two people dear to me that I must worry about. I'm waiting for further information from my brother as to when the operation will be and at which hospital. Jorg and I are discussing how we might make it possible for me to go and visit my dad and it might be that Jorg takes some time off work and stays home with Supatra while I travel with Jason to Thailand - but we just don't know yet.<br />
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Jason had the most amazing birthday. We took him to Funky Fun House with his best friends, Misa and Ellie. Supatra and one of her best friends, Oliver also came along. He also had the most amazing birthday cake made by our good friend, Angelina and Kathryn from the prayer group. The cake was a large Thomas the Tank engine toy with three troublesome trucks behind made of cake and icing and filled with mini chocolate bar candies. You should have seen his face light up when he saw that cake and of course all that chocolate!! We also gave him two new Thomas the tank engines (Henry and James) for his train set and he has not stopped playing with them nor let them out of his sight. He has also been singing the "accidents happen" song since Christmas and likes to crash the trains. He is so amazing and so different from his big sister Supatra. He has also become very adaptable because of our focus on Supatra at times which means he sometimes feels left out but we try our best not to let this happen.<br />
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Best wishes,<br />
<br />
Punny<br />
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<br />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-72202516375680331662012-02-13T15:31:00.002+00:002012-02-13T15:31:55.385+00:00New youtube video of Supatra<iframe width="640" height="360" src="http://www.youtube.com/embed/AP5WPM_YzGs" frameborder="0" allowfullscreen></iframe>David Dunnhttp://www.blogger.com/profile/10017940799027272585noreply@blogger.com2tag:blogger.com,1999:blog-6436664812597694354.post-16203848004074736242012-02-11T22:42:00.002+00:002012-02-11T22:42:49.521+00:0011 Feb 12Hello Everyone,<br />
<br />
Home life seems to be getting busier and busier and I am finding it harder to post on a regular basis and to find a convenient time to do so. Supatra is doing pretty good although she has had a few bad days where her energy level was just not like previous ones. However, for the most part we have been able to continue increasing her doses and she is very near her target dose. Since I last posted we have had several oncologist appointments, her monthly physical exam with her private doctor that is required by the ANP protocol and an MRI scan. Her MRI scan was a very mixed blessing and did not live up to our hope that the tumour would continue shrinking. However, it was not that bad considering we had to take Supatra off antineoplaston treatment several times in November and then after the last time we intentionally increased her dosages at a very slow pace as we were worried of another relapse that would result in her coming off treatment again. Supatra has been on treatment without interruption (except for a few dosages here and there) since 24 November 2011. Had we increased her dosages as we had been taught in Houston she would have reached her target dose by the 18th December; however, we chose to go slower because of the problems she was having in November and we have yet to reach the target dose although we have been near the top for several weeks. <br />
<br />
Why am I telling you all this? Because we strongly think that the small (0.2cm) increase in one dimension of her tumour could very well be related to the fact that she was off ANP completely for several periods in November and because she was at a lower dosage for a significant period of time over the two month period from her last MRI on 14 Nov 11. On the positive side the report stated that there was less 'enhancement' of the tumour which indicates a possible decrease in tumour blood activity (a contrast drug is used to enhance the blood veins in the brain and considering tumours develop their own blood vessels to feed their growth they then "light" up in the images from the MRI). This can indicate a less active tumour - good news! The following is a copy of the written report given to us:<br />
<br />
<em>'MRI Head: T1, T2, FLAIR and DWI of the brain with post contrast medium images.</em><br />
<em>There has been minimal increase in size in the left pontine mass when compared to 14/11/11 (2.5 x 2 cm now compared with 2.3 x 2 cm before). Enhancement following gadolinium has decreased slightly. Increased intensity on T2 weighted imaging in the basal ganglia and thalami has not changed (probably a treatment effect). No new Lesions'.</em><br />
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At the clinic we were also told that the treatment can go several ways depending on the patient and other factors (like treatment interruptions). A patient can show tumour reduction right away (i.e. after the first scan, like Supatra) followed by slight tumour growth and then further reductions. Or no response after initial MRI (i.e. first 6-8 weeks of treatment) followed by small tumour reductions thereafter. Or, continuous responses to the treatment and the scans will show progressive tumour reductions over the course of the treatment. There's probably other combinations of this but those are the three they mentioned to us. We are also following approx. 12 other patients on this treatment through their own blogs, diaries, and websites, and several of them have shown a similar pattern to what we hope will be Supatra's path and that is initial indications of tumour reductions, followed by some tumour activity or no reductions, and then followed by further reductions. Therefore we are still hopeful that Supatra's tumour will breakdown while near or at her target dose over a period of significant time (weeks if not months). Her next MRI scan will be a very nerve racking time for us and is scheduled for sometime at the end of March 2012; so please keep up your prayers and hope for the best! We are also still waiting to hear from the Burzynski clinic to see what their radiologist says about the scans - whether he concurs with the NHS report or if they differ on their interpretations. The NHS report was rather short and sweet so I am keen to see if the clinic can add some more clarity for us.<br />
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I have also noticed that some of those other patients that I am following are posting their MRI reports and I think this is a good idea, as not everyone will believe positive results and will want proof. Therefore, in the near future I will create a section on here where I will post copies of all Supatra's MRI reports and images (if possible) since starting the treatment.<br />
<br />
Supatra continues to attend school on occasion and Punny tries to take her at least 2-3 times per week but this last week she was only able to go once. On 3 Feb 12, we found out that Punny's car needed a new head gasket and timing belt and it took almost a week to complete the work. Then on the weekend (4 Feb) I spun out in my old used car and damaged it to the point where it was not worthwhile to fix and had to buy another old used car in a hurry (no one or thing injured in the accident other then my pride and the car's front end!!). So it was an expensive past week for us and rather boring for the family as they had no means of getting around while I was at work. We have two cars on the road again so next week will hopefully be better for Punny and Supatra; although, now I have to worry about whether or not my new old used car will be as reliable as the wrecked one - fingers crossed.<br />
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This Friday was also Jason's third birthday and although he does not quite know what the fuss is about he had a good time on Friday and today we spent the day at Funky Fun House with a few of his friends. I think Punny would like to post more on this including pictures tomorrow so I will leave it at that.<br />
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Please don't forget to visit our "news" and "Upcoming Events" pages to read the latest on what has happened and is about to happen on the fundraising front.<br />
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Best wishes,<br />
Jorg<br />
<br />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1tag:blogger.com,1999:blog-6436664812597694354.post-78377114736510737552012-02-04T11:04:00.000+00:002012-02-04T11:04:57.787+00:00Supatra's Mom Post!Hi everyone,<br />
<br />
I'm Punny, Supatra's mom. I have always let my husband Jorg do the blog updates but after my birthday I felt I wanted to say something as well. I do apologize as I meant to post this shortly after my birthday but I can just never seem to find the time. First of all, I would like to thank you all for your continued support, thoughts, prayers and help. My birthday on 26 January was the one year mark since Supatra was diagnosed with a DIPG tumour. I remember everything so clearly like it happened yesterday. I remember being in the hospital waiting anxiously for the results of Supatra's MRI scan. I remember being told the bad news and felt so numb like being hit by lightening. We were being told that our five year old has no chance with the only available treatment being radiation therapy for five weeks. I couldn't believe what I was hearing, then to be told that it is a very rare type of brain tumour, I just could not understand why it was happening to Supatra, to our family. It was a big shock for me and Jorg. We both didn't know what to do except that we wanted to be left alone and so the doctors left the room and we just hugged each other and cried. I never saw Jorg cry so bad like that before.<br />
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Jorg stayed with Supatra in the hospital that night and let me go home so I could cancel my birthday party arrangement and start asking friends for help with babysitting. I left Jason with a friend that night, mentally I didn't think I could look after him and decided he was better off staying with my friend. I remember I felt so hopeless, worthless, and upset at myself that I couldn't do anything to help my daughter. It was such a horrid feeling, I hate myself, my birthday, and if I didn't exist this tragedy would never happen. I told myself that night that I wouldn't celebrate my birthday ever again. That feeling stayed with me for a long time. Each morning I struggled to wake up but as soon as I heard Supatra's little soft voice beside me it woke me up and that would keep me going each day. We took it day by day and just kept hoping that tomorrow she would still be with us.<br />
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I can't bear the thought of losing my little girl, how can I explain it to Jason when Supatra is gone, what would I tell him. Our Hearts will be empty forever.<br />
<br />
To be honest, I hate going to the doctor appointments at the paediatric day unit because each time we are there it just reminds us of the fact there is no treatment in the world that will cure her or extend her life. I'm just a typical mom who keeps lying to myself and puts on a brave face, in fact, I'm so scared and vulnerable. Meeting the doctors stopped me from lying to myself or perhaps stopped me from hoping for a miracle and thats why I hated going because it brings me back to reality. Jorg and I searched the world for a cure or something that would prolong her life but every time we would bring something interesting to the doctors they would tell us it is no good and that there is nothing we could do except make her as comfortable and as happy as possible.<br />
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I'm not pro doctor Burzynski but he is the only hope we have. A life with no hope isn't a life. And we're doing everything we can to save Supatra's life. I understand why his treatment is controversial to the mainstream doctors but every cancer treatment has its own controversies. Chemotherapy and radiotherapy are known for bad long term side effects, so why aren't the mainstream doctors being more open minded and try to understand the ANP treatment and learn from it? All I'm trying to say with this post is that I'm happy that we did take the chance by taking Supatra to America and have this treatment. We are so gratful to have Supatra with us today. All other things don't matter to us anymore, she is the love and joy of our life and we would do anything to cure her and have her with us for a very long time. With the doctors so sure of the prognosis and speed of tumour growth we never expected to have Supatra past last summer and to come this far today with each day waking up with Supatra at my side is a blessing and its worth every penny spent.<br />
<br />
You might wonder why I never post any messages in the blog before. I just couldn't do it, I was so emotional to express my feelings and I didn't want people to know how weak I was. I kept telling myself that I must be strong, for the family because they need me but as soon as I start writing I would cry a river before finishing the first sentences so I decided to let Jorg take care of the blog and I'm better off being a full time nurse and full time mom.<br />
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I feel much better now knowing that there are an army of friends behind me and that I am not alone. How I will ever be able to thank all of you I do not know, you guys are angles. Thank you to all our friends, families, donors, blog followers, school teachers, nurses, prayer groups, fundraising teams, and doctors for your continued support, prayers and to those that bring us the occasional food so that I do not have to cook! <br />
<br />
Love and hugs from me to you.Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com4tag:blogger.com,1999:blog-6436664812597694354.post-11943781635764467202012-01-27T21:32:00.000+00:002012-01-27T21:32:07.559+00:0027 Jan 12Hello everyone,<br />
<br />
Supatra is doing fine and near her target dose. It was Punny's birthday this last Thursday and Supatra ended up being more excited about it then her mommy. The little rascal couldn't keep a secret and spilled all the beans on what I was planning for Punny! This week we got to borrow a Wii game from friends who are on vacation skiing and Supatra loves playing on it, especially the dancing game and bowling. I guess we will have to get her one for her birthday on 29 March. We are still not sure what we would like to do for her birthday this year and of course we still need to plan something for her little brother Jason who will turn 3 on February 10th. The next big date for us is on 1st Feb as that is when Supatra goes for her next MRI scan and we get to find out whether the treatment is continuing to work on her tumour. I am now following about 6 different blogs on UK patients undergoing the Burzynski treatment, two of them adults and they are all doing very well. We are very lucky that Supatra has made it this far and we pray that she continues to do well. I think the longer she stays stable the greater the chance of success in beating this cancer. Today was an eventful day as she attended school for almost the full day for the first time since last year. She was rather tired afterwards but thoroughly enjoyed being there with her friends who she misses terribly. She is such a lovely daughter. When I was away from my home office she wrote a bunch of messages of love with pictures on post-it notes and stuck them all around my computer :) I love her so much! I think I will take her shopping tomorrow to buy some toys for her brothers birthday - she just loves to buy presents for others. Thanks to everyone at the IFC who keep giving to support Supatra's treatment costs, you guys and gals are amazing! <br />
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Until next post,<br />
<br />
Best wishes to all,<br />
<br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com3tag:blogger.com,1999:blog-6436664812597694354.post-64441897388297082442012-01-20T22:05:00.000+00:002012-01-20T22:35:54.273+00:00MRI Scan Time!Hello everyone,<br />
<br />
Home life seems to be getting busier every week and it is becoming harder to spend time on the computer to post on the blog. I know some are eagerly awaiting news of whats happening with Supatra so tonight I hope to quench your thirst a little! <br />
<br />
Supatra continues to do very well and has been active everyday either spending some time in school for short periods, playing Wii games with her best friend Isabel or going out with the family. We have kept Supatra on her small steroid dose as we do not want to upset her body by withdrawing the drug while we are still increasing her medication. Hopefully once she has been at her target dose for a week or two we will try taking her off as she is already starting to put the weight she lost back on even at this very small dose. She is now at 190ml for AS10 and 14ml for AS1-2 and she should be at her target dose within another week to 10 days. We are purposely not rushing it as do not want a repeat of November. Sometime in the next week or two Supatra will also go for another MRI scan and we are very anxious about this and hope we will have good news like that of Laura from Kent whose MRI a few months ago showed an initial 36% reduction and then more recently a 56% reduction while on the treatment. Laura is an adult lady and has a different tumour then Supatra but it just goes to show that this treatment does indeed work for some patients (you can read more about Luara here: <a href="http://www.hopeforlaurafund.co.uk/">http://www.hopeforlaurafund.co.uk/</a><br />
Additionally, through her blog I was linked up with another mother who had an 8 yr old boy with a brain tumour in 1998 that took the treatment and the tumour is now considered inactive/dead and he is now graduating from college and is 24 yrs old. Unfortunately though, because his much smaller inactive tumour would still show up on his scans he remained on the ANP treatment for approx 7 years. I hate to think that Supatra would have to do this treatment for that long and it does worry me. BUT these are all good news stories considering the severity of these brain tumours.<br />
<br />
I still do not have firm details on our local fundraisers coming up but as soon as I get them I will post. The next big event will be the Thai evening in Abbotts Ripton, Huntingdonshire (on the events page) and looks to be a sell out. Next week I will be registering a team of at least ten cyclists who will take part in the London Nightrider 2012 Charity Cycle Tour on 8-9 Jun 12 (<a href="http://www.nightrider.org.uk/">http://www.nightrider.org.uk/</a>) which should be a great experience and an event that I will also participate in. I have set-up a Molesworth Nightrider Team Just Giving page at <a href="http://www.justgiving.com/molesworthnightriderteam">http://www.justgiving.com/molesworthnightriderteam</a> if you would like to donate. Please pass on the info to your friends and family. I am also putting the final details together for our Cambridge, London and Return Cycle Tour on or about 12-13 May 2012 and will likely also set-up a just giving page for this. The aim will be to get 10-20 participants involved in this event with each pers raising funds through sponsorships. Additionally, we have developed a formatted sponsor form and Supatra Fairy Fund poster that will be added to this site soon for people to download for their fundraising activities. We are also looking to purchase Supatra Fairy Fund t-shirts that fundraisers could use. Does anyone know of a t-shirt printer willing to work at a discount and know of any companies willing to sponsor the t-shirt purchase by having their company name or logo on the back?? If you do, please contact us on using the contact page. Then we have our very good friend Natalie running the Cambridge half marathon on 11 Mar 12 for Supatra and recently numerous others have joined in including several teachers from Supatra's school. Very impressed ladies and wish you a speedy finish and a nice refreshing beer at the end!<br />
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The Last big event that I will mention is a local talent show being put together by a friend of a friend who heard about Supatra's story. The event is at The Talk, Norwich, Norfolk on 30 Mar 12 and has a lot of support behind it with outstanding music, entertainment, door prizes and raffles. For more info go to <a href="http://www.facebook.com/#!/destinyduo">http://www.facebook.com/#!/destinyduo</a> and/or our events page. This event is supporting two charities, Cots for Tots and Supatra's Fairy Fund through the Joseph Foote Fundraising Trust and is a steal at only 10 pounds for advance tickets and 12 pounds at the door.<br />
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So, it looks to be a busy busy period on the fundraising front all around.<br />
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All the best to everyone!<br />
JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-45984122829425359562012-01-12T21:14:00.000+00:002012-01-12T21:14:06.272+00:0012 Jan 12Hello Everyone,<br />
<br />
Apologies for not posting more regularly lately but I have been rather tired in the evenings and not too much has been happening with Supatra. Supatra continues to do very well, especially since last post. She has been in an upbeat and jovial mood the whole time and very active. We took her to London on 7-8 Jan to go skating each day and spend time at the Museum of Natural History. We had a great time. This was a weekend with just me, Punny and Supatra while Jason stayed behind with his grandmother. We have been slowly increasing her antineoplaston dosage and she is now at 180ml AS10 and 12ml AS1-2. For those that may not remember, her target dose is 200ml AS10 and 18ml for AS1-2. However, the day before yesterday Supatra was a little more tired then she had been and not as perky mentally. We were not sure if it was the treatment or all the activities she was involved in over the past week. Yesterday though, she was even more tired and there were a few other subtle changes symptoms that had us concerned and so we decided to give her a 2.5ml dose of oral dexamethasone and we did the same again today. Today Supatra is back to herself again although still slightly more tired then usual. We again gave her a 2.5ml oral steroid dose and for the next few days will give her 1.25ml to start the weaning off process - unless of course symptoms reappear. We will also keep her at her current ANP dosage level for the next few days and monitor her closely. If all seems well then we will start to increase her doses again. The rash that she developed before Christmas is not as intense any more and we are hoping that issue will be behind her. Supatra has been looking really well and shedding some of her steroid induced access weight for the last few weeks so we are not happy that we had to put her back on steroids. I think this has been one of her longest periods without steroids having taken them last on 23 Nov 11. She looks so much better when you see her now and compare her to her pictures from August. Even Supatra realises it when she looks at herself in the mirror. She is also still eagerly awaiting the day she can have her smile back as well. She has been such a lovely girl these past weeks, joking, talking up a storm, being cheeky, and making beautiful cards and arts and crafts for me and mommy. When we see her like this - almost completely normal, it makes it very hard on us when she has symptoms reappear and it snaps us back to the reality of her situation.<br />
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We also hosted the fundraising committee meeting at our place yesterday evening and there will be some excellent events coming up shortly, which I will post and update the blog on when things become a little bit more solidified. One event that I would personally run and organise is a Cambridge to London and back bike tour. The idea would be to have a minimum of two riders and up to a maximum of about 20 cyclists participating. Participants would canvas their own sponsors and we would look to advertise this on radio and print. The plan would also be to ride as a group (not a race) and stop in a few choice locations to collect donations along the way. I would like to conduct this sometime in May and will try to get the initial advert out by end January to solicit for participants. If someone wishes to join in then please contact me direct (if you know me) or make contact using the contact form on this blog. Of course we also have the much anticipated Thai dinner evening on 4 Feb 12 at the Abbott's Ripton community hall that will include Thai dancing and a kick boxing demonstration. Again, just contact the fundraising team through the blog contact form and we can get some tickets to those that want them - but there are only 120 tickets so hurry!<br />
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Last, we still have some of Supatra's blank cards available for sale and now also rubber wrist bands with the colours gold for paediatric cancer and grey for brain tumours in a swirl design (blends in good with military uniforms so great for the soldiers out there!! If you want some or would like to sell some for us then again, please use the contact form on this blog. Also, if you would like to help out with a fundraising event then please contact us so that we can help get the word out.<br />
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<br />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1tag:blogger.com,1999:blog-6436664812597694354.post-50298777445206583712011-12-30T23:49:00.000+00:002011-12-30T23:49:43.933+00:0030 Dec 11Happy New Year everyone!<br />
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We continue to enjoy our relaxing holiday time at home with periodic day trips out. Supatra is doing very well and is already sad that Christmas has come and gone. However, today she started talking about Valentine's Day and she has already started to make some valentine cards! Always way ahead of us and I am sure she will start wrapping Christmas presents early in the new year as she did this last year. She was very happy to receive numerous gifts from Santa that were on her Santa's wish list and is enjoying playing with her sleeping time Annabelle baby and lite sprites. Jason received his sister's old Thomas the train set that Supatra has not played with for years and he has not stopped playing with it other then to play with his new cars. Cars and trains, that's all he has on his brain! On 28 Dec 11, I took Supatra to London with grandma and we went to the Museum of Nature and then skating which was set-up on the museum grounds. Unfortunately, our camera ran out of batteries after a few not so great pics and had to resort to using the iPhone which also did not take great pics. However, below are a few of them anyways.<br />
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I was really surprised at how well Supatra skated considering it has been a year since her last time and of course her balance issues this year. Although not quite skating on her own this first time she did really well with her barely holding on to my fingers as we went around the rink. I definitely want to take her again but probably somewhere closer like Peterborough maybe. Supatra has also been busy writing a story book, sewing, and doing general arts and craft stuff.<br />
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We want to take this opportunity to say Happy New Year to everyone and thank you for all the support over this arduous last year. We are ever hopeful that this treatment will continue to keep our angel around for many more enjoyable moments and we are so looking forward to throwing her a big birthday party this year.<br />
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Please keep spreading the word about Supatra's need for help in order for her to continue this cancer treatment. <br />
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All the best to you and your families in the new year.<br />
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Jorg<br />
<img height="96" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6fy03yyf7qV44Bcyu8T_fEUdueAEJUtRKVr3azR1zYc9cktp7tpmLQTSyltlc7gWD8yszmLoPjOaIX23wnETJRN50d6M6yHK0AacX8KHidjcNy3RkWpAFc7R62fPSbwvj3_pCdqiGVgE/s200/Supatra+skating+London+28+Dec+11+%25286%2529.JPG" style="filter: alpha(opacity=30); left: 241px; mozopacity: 0.3; opacity: 0.3; position: absolute; top: 544px; visibility: hidden;" width="72" />Jorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com0tag:blogger.com,1999:blog-6436664812597694354.post-11801648814489510312011-12-24T12:00:00.002+00:002011-12-24T12:00:51.309+00:0024 Dec 11Hello Everyone,<br />
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Just to let you know Supatra is doing fine and she is getting really excited about Christmas. Today she put her gifts under the tree, which she wrapped back in March-April already. She really does like to do things early! Tonight we will enjoy a nice dinner at a friends house and tomorrow some other friends are bringing dinner to our house so we are being looked after very well indeed by the great friends that we have.<br />
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We wish everyone a very Merry Christmas!<br />
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JorgJorg Adlerhttp://www.blogger.com/profile/14113470996716463640noreply@blogger.com1