Hello Everyone,
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.
We wish everyone a very Merry Christmas!
Jorg
Saturday, 24 December 2011
Monday, 19 December 2011
18 Dec 11
Hello everyone,
Again I have missed my own imposed scheduling for posting on this blog but today I have some time. One of the reasons for not posting over the last week has been because Supatra is doing really great. She has fully recovered from her November set-backs and seems to be taking the antineoplaston treatment well; however, not without some side affects. We have been hesitant to increase her dosages too fast, i.e. at the normal recommended speed and have requested numerous times of the Burzynski doctors that we stay at a certain dosage level for a few days before then increasing again. In each case they have been very supportive in this process and have agreed with our approach. Since early December Supatra has been complaining of sensitive skin and pain around her buttocks and upper legs and then around 8-9th December she started to get a rash composed of mosquito sized red spots on her arms and legs. We have seen these before and knew these were a side affect of the treatment. In response to this rash we kept the dose level as is for several days and then as an extra precaution we decreased bag 2 by one increment level which then seemed to clear up the rash. We are not sure the cause of the pain she is feeling when she walks but she did have a check-up with her oncologist and she thinks it may be steroid related. The oncologist told us that prolonged steroid use can have a negative affect on bone joints as well as muscle wasting. Supatra has not been on steroids since 24 Nov 11 but she has had so many cycles since diagnosis that it is starting to affect her much more each time she needs to resume the drug. Then later this week she felt much better and the last four days she has felt no pain nor sensitive skin. However, as of today the sensitivity and pian is back albight at a much lower level. Her Haemoglublin (HG) level also bounced back somewhat a couple of days after the drop. It is still a little lower then normal but not that much and we have been told it can take some time to recover HG levels. Otherwise Supatra has been well and very active attending school almost everyday since the last time I posted for 2-3 hours at a time. On 6th and 7th December she also participated in the much awaited school Christmas play called A Little Fir Tree. It was a wonderful play with lots of singing, which we really liked. Supatra got to introduce the play and did so in a superb loud and clear voice and she also participated in the group songs. We also went to the Milton All Saints Church for a an afternoon of arts and crafts making Christmas decorations.
Again I have missed my own imposed scheduling for posting on this blog but today I have some time. One of the reasons for not posting over the last week has been because Supatra is doing really great. She has fully recovered from her November set-backs and seems to be taking the antineoplaston treatment well; however, not without some side affects. We have been hesitant to increase her dosages too fast, i.e. at the normal recommended speed and have requested numerous times of the Burzynski doctors that we stay at a certain dosage level for a few days before then increasing again. In each case they have been very supportive in this process and have agreed with our approach. Since early December Supatra has been complaining of sensitive skin and pain around her buttocks and upper legs and then around 8-9th December she started to get a rash composed of mosquito sized red spots on her arms and legs. We have seen these before and knew these were a side affect of the treatment. In response to this rash we kept the dose level as is for several days and then as an extra precaution we decreased bag 2 by one increment level which then seemed to clear up the rash. We are not sure the cause of the pain she is feeling when she walks but she did have a check-up with her oncologist and she thinks it may be steroid related. The oncologist told us that prolonged steroid use can have a negative affect on bone joints as well as muscle wasting. Supatra has not been on steroids since 24 Nov 11 but she has had so many cycles since diagnosis that it is starting to affect her much more each time she needs to resume the drug. Then later this week she felt much better and the last four days she has felt no pain nor sensitive skin. However, as of today the sensitivity and pian is back albight at a much lower level. Her Haemoglublin (HG) level also bounced back somewhat a couple of days after the drop. It is still a little lower then normal but not that much and we have been told it can take some time to recover HG levels. Otherwise Supatra has been well and very active attending school almost everyday since the last time I posted for 2-3 hours at a time. On 6th and 7th December she also participated in the much awaited school Christmas play called A Little Fir Tree. It was a wonderful play with lots of singing, which we really liked. Supatra got to introduce the play and did so in a superb loud and clear voice and she also participated in the group songs. We also went to the Milton All Saints Church for a an afternoon of arts and crafts making Christmas decorations.
On 14 December, my mother also arrived from Canada for the holiday period and she will be a great help to us as she always is. The kids love Oma (German word for Gandmother) and enjoy the extra attention they get not to mention all the nice little gifts she brings them. We are looking forward to this Christmas, being that much more special with Supatra around and we look forward to her 7th birthday in March. Most Christmas shopping has been completed but I will need to make a few more trips as some toys were out of stock. This year we are only buying gifts for the kids, mainly Supatra and Jason's big gift will be a Thomas train set that we bought for Supatra several years back but that she rarely played with. We will stay close to home and I am hoping that Cambridge will be opening a skating rink this year again as Supatra would really love to go skating again and I think it is time Jason got a taste of it as well. I will post again before Christmas so for now, all the best to everyone....HO HO HO!
Jorg
P.S. I never got around to uploading pictures of previous events as I had promised but will endeavour to do so over the Christmas break. Most if not all will be posted under the picture gallery tab. Second, further enhancements will be made to the site in the new year to include a fundraising target and running tally of the total amount raised by all of you.
Thursday, 8 December 2011
8 Dec 11
Hello everyone,
Another busy week is flying by with lots of family activities at home and several outings. We, of course took Supatra to the Santa's Grotto on 3 Dec at the Milton Country Park and had a great time. It was especially nice to see all our friends lots of the fundraising committee members, some of whom I had not even met before, and all of the children, many of whom Supatra knows. On 4th Dec Supatra went to Oli's birthday party which was a movie and then some food. Supatra has also been going to school almost every day for at least a few hours at a time and she is really enjoying this. On 6th Dec we went to my office Christmas party and also had a lovely time with Santa making a surprise visit as well.
Supatra was continuing with the treatment up until Tuesday, 6th Dec when we received her blood results that showed a low Haemoglobin count and we were advised by the clinic to cease treatment until we could get another lab result that would confirm this drop or discount it as a bad blood sample. A low haemoglobin count means that she has become anaemic at least for the short term and which can be a side affect of the antineoplaston treatment. We are worried that this will again cause a lengthy delay in her continued treatment although Wednesday's lab results showed a small rebound in her levels. After these last results the clinic gave us the go ahead to continue with the treatment today. Tomorrow is another blood draw and we will be anxiously waiting to see if her haemoglobin levels are continuing back up to normal levels. Of course if it does not then we might be asked to stop the treatment again. Supatra looks fine and in fact looks better than she has in quite some time. She has also had no other symptoms, her left eye seems to be getting better, and she continues to be quite energetic. We forever have our fingers crossed that she will continue to be fine over the holiday period and be able to continue to take her treatment.
This Saturday we will be saying good-bye to Punny's sister and family friend, which I am sure will be a sad moment for her and the kids. It has been a great visit and I always love to have her sister around as she is quite the comedian - I just wish I could speak Thai so that I would know what she is constantly saying about me :) Then later next week we welcome my mother as she starts her visit with us over the holidays.
Best wishes to all,
Jorg
Another busy week is flying by with lots of family activities at home and several outings. We, of course took Supatra to the Santa's Grotto on 3 Dec at the Milton Country Park and had a great time. It was especially nice to see all our friends lots of the fundraising committee members, some of whom I had not even met before, and all of the children, many of whom Supatra knows. On 4th Dec Supatra went to Oli's birthday party which was a movie and then some food. Supatra has also been going to school almost every day for at least a few hours at a time and she is really enjoying this. On 6th Dec we went to my office Christmas party and also had a lovely time with Santa making a surprise visit as well.
Supatra was continuing with the treatment up until Tuesday, 6th Dec when we received her blood results that showed a low Haemoglobin count and we were advised by the clinic to cease treatment until we could get another lab result that would confirm this drop or discount it as a bad blood sample. A low haemoglobin count means that she has become anaemic at least for the short term and which can be a side affect of the antineoplaston treatment. We are worried that this will again cause a lengthy delay in her continued treatment although Wednesday's lab results showed a small rebound in her levels. After these last results the clinic gave us the go ahead to continue with the treatment today. Tomorrow is another blood draw and we will be anxiously waiting to see if her haemoglobin levels are continuing back up to normal levels. Of course if it does not then we might be asked to stop the treatment again. Supatra looks fine and in fact looks better than she has in quite some time. She has also had no other symptoms, her left eye seems to be getting better, and she continues to be quite energetic. We forever have our fingers crossed that she will continue to be fine over the holiday period and be able to continue to take her treatment.
This Saturday we will be saying good-bye to Punny's sister and family friend, which I am sure will be a sad moment for her and the kids. It has been a great visit and I always love to have her sister around as she is quite the comedian - I just wish I could speak Thai so that I would know what she is constantly saying about me :) Then later next week we welcome my mother as she starts her visit with us over the holidays.
Best wishes to all,
Jorg
Friday, 2 December 2011
Santa's Grotto Sold Out
Sorry folks but the fundraisers have informed me that the Santa's Grotto for tomorrow at Milton Country park is now sold out!
Thank you to everyone who purchased a ticket and see you there.
Jorg
Thank you to everyone who purchased a ticket and see you there.
Jorg
Thursday, 1 December 2011
1 Dec 11
Supatra continues to do very well and has now been back on treatment for three days at a low dose. She is still off her steroids since 22 Nov 11 and it looks like her walking over the last few weeks has improved in that she does not walk with such a wide gait as she did before because of her balance issues. The only thing still bothering her from her last episodes is her left eye in which she has little to no feeling and because of this aggravated the eyeball when she had her fits. But it is slowly getting better and we are using several different eye drops and creams to over come this and she occasionally will wear a patch. We are very happy that she is now well and we have taken her to school for some short spells. Today she got to do her Christmas shopping for her family at school and already has the presents wrapped. I can't wait to see what she got me and I might just have to sneak in her room to shake the box. :) Tomorrow she will attend school again in between her infusion cycles and practise introducing the school Christmas play which she will have to do a few times in front of a large audience next week.
For those following this blog, don't forget to check the Events page as this Saturday, 03 Dec 11 is the Santa's Grotto at the Milton Country Park. If you don't have tickets come anyways as there may be some to be had at the Cafe Diem in the park's Visitor Centre. On Tuesday evening we were also invited to the Cambridge United Football Club game against Bath City (they tied 1:1) to be presented with a check for 494.71 pounds that was raised back on 11 Nov 11 by our friends. Thank you to all the fans that gave that day, the Cambridge United FC for their support and specifically to Stuart Wood for taking care of us and Player Rory McAuley for presenting the check to Supatra.
As well, a big thank you to members of 2 Int Coy in Toronto and their CO, Major Phil Nicholson for raising 1,000.00 pounds on Supatra's behalf. I am especially proud of you guys and gals for doing this and I miss being in Toronto with you. I am sure the LFCA J2 section chipped in as well, so thank you to you. I have also been told by my mother that her company Thrifty Foods has increased/matched the donations made from their hotdog sale a while ago for a total combined donation of $2,000.00. Thank you so much.
All the best wishes to Joseph (USA), Luna (London), Olivia (Maui), Leyel (Dubai), Billie (Exeter) and their wonderful families. Hope you all enjoy the upcoming Christmas season as much as possible.
Jorg
For those following this blog, don't forget to check the Events page as this Saturday, 03 Dec 11 is the Santa's Grotto at the Milton Country Park. If you don't have tickets come anyways as there may be some to be had at the Cafe Diem in the park's Visitor Centre. On Tuesday evening we were also invited to the Cambridge United Football Club game against Bath City (they tied 1:1) to be presented with a check for 494.71 pounds that was raised back on 11 Nov 11 by our friends. Thank you to all the fans that gave that day, the Cambridge United FC for their support and specifically to Stuart Wood for taking care of us and Player Rory McAuley for presenting the check to Supatra.
As well, a big thank you to members of 2 Int Coy in Toronto and their CO, Major Phil Nicholson for raising 1,000.00 pounds on Supatra's behalf. I am especially proud of you guys and gals for doing this and I miss being in Toronto with you. I am sure the LFCA J2 section chipped in as well, so thank you to you. I have also been told by my mother that her company Thrifty Foods has increased/matched the donations made from their hotdog sale a while ago for a total combined donation of $2,000.00. Thank you so much.
All the best wishes to Joseph (USA), Luna (London), Olivia (Maui), Leyel (Dubai), Billie (Exeter) and their wonderful families. Hope you all enjoy the upcoming Christmas season as much as possible.
Jorg
Sunday, 27 November 2011
27 Nov 11
Hello everyone,
This last Thursday's Christmas shopping evening at Supatra's school was a big success and raised 611.14 pounds! Thank you to all the businesses that set up stalls and donated items for the raffles and thank you to all the people that made this happen and those that spent some money. Me and Punny had intended to go but when our friends arrived to drop off a turkey Thanksgiving dinner we forgot all about it - so sorry as we did want to show our faces and let Supatra look around for some Christmas gifts. We will definitely come out for the Santa's Grotto scheduled for 3 December at the Milton Country Park's 'The Wild Place'.
Supatra managed to attend school for 1.30 hours on Friday and she loved every minute of it! We got some lovely feed back from parents who's children excitedly reported to them of Supatra's appearance. We will try to get her to attend school again tomorrow however, she musty go to the dentist first. Supatra's two front teeth have been wobbly for the last 3-4 months and it looks like the new teeth are pushing them up and outwards and the gums are not looking very good. On Saturday she actually lost one of them and I hear the tooth fairy was very generous to her last night...only one more to go! If we finish with the dentist in time then she can at least attend the lunch hour at school with her schoolmates. Then in the afternoon its off to Addenbrookes to get her left eye checked as during her last fits seizures she did irritate it quite a bit. Supatra will also be participating in the school play and she will make the opening announcement in her new beautiful purple dress that Nikki and Ben from Houston, Texas gave to her as a gift. She tried it on this weekend and it looks beautiful on her and fits perfectly...thanks Nikki.
On Saturday evening Punny's sister and Buddhist monk arrived in England for the first time and they looked very cold! Today we set-up a little prayer area in our home and the monk conducted a blessing ceremony for the whole family and a special prayer and blessing session for Supatra. Its too bad they can not speak English and I can not speak Thai as it would be nice to talk to them without Punny having to interpret. They will stay with us for only two weeks and are flying back to Thailand on 10 December. At around the same time I hope that my mom will arrive and stay with us through the holidays. So a busy household but all good for us.
Supatra is still doing very well. She managed school very well, has been reading books to herself (something she has not done for several months) and playing by herself and with Jason. She is definitely back to her normal self, as normal as that can be with the long term tumour symptoms still there. On Tuesday we will start her back on the antineoplaston treatment at a very small dose and take three weeks to reach her target dose on around 18 December. I am keeping my fingers crossed that going back on at this slow pace will result in her body excepting it much better and be in a good state as we approach Christmas day and onwards.
Our spirits are high again and our hope remains.
Best wishes to all,
Jorg
This last Thursday's Christmas shopping evening at Supatra's school was a big success and raised 611.14 pounds! Thank you to all the businesses that set up stalls and donated items for the raffles and thank you to all the people that made this happen and those that spent some money. Me and Punny had intended to go but when our friends arrived to drop off a turkey Thanksgiving dinner we forgot all about it - so sorry as we did want to show our faces and let Supatra look around for some Christmas gifts. We will definitely come out for the Santa's Grotto scheduled for 3 December at the Milton Country Park's 'The Wild Place'.
Supatra managed to attend school for 1.30 hours on Friday and she loved every minute of it! We got some lovely feed back from parents who's children excitedly reported to them of Supatra's appearance. We will try to get her to attend school again tomorrow however, she musty go to the dentist first. Supatra's two front teeth have been wobbly for the last 3-4 months and it looks like the new teeth are pushing them up and outwards and the gums are not looking very good. On Saturday she actually lost one of them and I hear the tooth fairy was very generous to her last night...only one more to go! If we finish with the dentist in time then she can at least attend the lunch hour at school with her schoolmates. Then in the afternoon its off to Addenbrookes to get her left eye checked as during her last fits seizures she did irritate it quite a bit. Supatra will also be participating in the school play and she will make the opening announcement in her new beautiful purple dress that Nikki and Ben from Houston, Texas gave to her as a gift. She tried it on this weekend and it looks beautiful on her and fits perfectly...thanks Nikki.
On Saturday evening Punny's sister and Buddhist monk arrived in England for the first time and they looked very cold! Today we set-up a little prayer area in our home and the monk conducted a blessing ceremony for the whole family and a special prayer and blessing session for Supatra. Its too bad they can not speak English and I can not speak Thai as it would be nice to talk to them without Punny having to interpret. They will stay with us for only two weeks and are flying back to Thailand on 10 December. At around the same time I hope that my mom will arrive and stay with us through the holidays. So a busy household but all good for us.
Supatra is still doing very well. She managed school very well, has been reading books to herself (something she has not done for several months) and playing by herself and with Jason. She is definitely back to her normal self, as normal as that can be with the long term tumour symptoms still there. On Tuesday we will start her back on the antineoplaston treatment at a very small dose and take three weeks to reach her target dose on around 18 December. I am keeping my fingers crossed that going back on at this slow pace will result in her body excepting it much better and be in a good state as we approach Christmas day and onwards.
Our spirits are high again and our hope remains.
Best wishes to all,
Jorg
Thursday, 24 November 2011
24 Nov 11
Hello everyone and a happy Thanksgiving to all our American friends on the continent and here in the UK.
Supatra is back to normal again and has been doing very well since yesterday. Of course she is still off the antineoplaston treatment and also her steroids but we intend to re-start her treatment next week. We would like her to recover a little more before putting her back on the treatment thereby hopefully achieving a more successful result and longer period on the antineoplastons. We continue to be concerned about staying off the treatment too long as this could result in the tumour starting to grow again. Supatra is eating, talking, laughing and playing like she normally does and we are very happy to have her back again. We have also discussed our options with the Burzynski clinic doctors and we have the green light to start her back on the antineoplaston treatment on Tuesday 29 November. In order to be extra cautious we will re-start her treatment as if for the first time at an extremely low dose of 10cc for the AS-10 and 5cc for the AS2-1. Then the AS-10 will be increased each day by 10cc and the AS2-1 by 5cc every three days, until we reach the target doses. We hope Supatra will cope with this approach as she did while in Houston.
Supatra has had an opportunity to visit the Milton hospice a couple of times over the last week and we will continue to take her there on a fairly regular basis so that she can get to know the carers. The hospice is an excellent place, although the reason for being there is not. The carers are exceptional people doing a difficult job but do it with compassion and big smiles - thank you. Supatra is also very eager to go back to school, however, that will only be possible on occasion and only for short periods of time. We are hoping that she will be well enough to participate in this years school Christmas play with all her classmates. I can't wait to see her up there on the stage again. Today we had a visit from my friend and Commanding Officer, Joe Huibsch and his beautiful wife Polly, bring us a Thanksgiving turkey dinner with all the trimmings. The dinner was delicious and I thank them for doing this on their holiday evening. Not withstanding the dinner it was also nice to enjoy a few beers with someone; something I don't get to do very often anymore.
This week was a big week for us on the fundraising front as well, as we finally had some press coverage about Supatra's plight in the Cambridge News newspaper on 23 Nov 11. We hope this will broaden the donor base as I know our friends, co-workers and local community have contributed the most to our cause and me and Punny are very conscious of that. We are hoping that through this story and those to follow we will get more people involved in fundraising on our behalf to help us keep this treatment going for Supatra. The Cambridge News has already indicated that they may want to do a follow-up story closer to Christmas and we will try to forewarn everyone when it is to be published. We will also be mentioned in a leading UK magazine 'Take a Break' in relation to Supatra's friendship with Billie Bainbridge, a five year old girl also suffering from a DIPG brain tumour. Hopefully this will also raise Supatra's profile a bit. We also intend to produce some blank cards using images drawn by Supatra and hope to have these available before Christmas. Last, my most favourite Aunt in the whole world took up a collection for Supatra and raised a huge 418.24 pounds! Love you Erika.
It's amazing how our emotions are swinging from low to high so quickly and so often as we continue down this journey. One minute you think you are about to lose your baby girl and the next she is doing just great. But we are feeling very lucky indeed that Supatra is doing so well again as we look forward to spending the Christmas holidays with her - her favourite time of year. Then it is only a short three months after Christmas and it will be another milestone - her seventh birthday! As Punny said today in the car, 'this is the longest year of my life' and it truly does feel that way. Thanks again to all the positive messages of support and your prayers.
Aloha to Olivia and the Bianco family!
All the best,
Jorg
Supatra is back to normal again and has been doing very well since yesterday. Of course she is still off the antineoplaston treatment and also her steroids but we intend to re-start her treatment next week. We would like her to recover a little more before putting her back on the treatment thereby hopefully achieving a more successful result and longer period on the antineoplastons. We continue to be concerned about staying off the treatment too long as this could result in the tumour starting to grow again. Supatra is eating, talking, laughing and playing like she normally does and we are very happy to have her back again. We have also discussed our options with the Burzynski clinic doctors and we have the green light to start her back on the antineoplaston treatment on Tuesday 29 November. In order to be extra cautious we will re-start her treatment as if for the first time at an extremely low dose of 10cc for the AS-10 and 5cc for the AS2-1. Then the AS-10 will be increased each day by 10cc and the AS2-1 by 5cc every three days, until we reach the target doses. We hope Supatra will cope with this approach as she did while in Houston.
Supatra has had an opportunity to visit the Milton hospice a couple of times over the last week and we will continue to take her there on a fairly regular basis so that she can get to know the carers. The hospice is an excellent place, although the reason for being there is not. The carers are exceptional people doing a difficult job but do it with compassion and big smiles - thank you. Supatra is also very eager to go back to school, however, that will only be possible on occasion and only for short periods of time. We are hoping that she will be well enough to participate in this years school Christmas play with all her classmates. I can't wait to see her up there on the stage again. Today we had a visit from my friend and Commanding Officer, Joe Huibsch and his beautiful wife Polly, bring us a Thanksgiving turkey dinner with all the trimmings. The dinner was delicious and I thank them for doing this on their holiday evening. Not withstanding the dinner it was also nice to enjoy a few beers with someone; something I don't get to do very often anymore.
This week was a big week for us on the fundraising front as well, as we finally had some press coverage about Supatra's plight in the Cambridge News newspaper on 23 Nov 11. We hope this will broaden the donor base as I know our friends, co-workers and local community have contributed the most to our cause and me and Punny are very conscious of that. We are hoping that through this story and those to follow we will get more people involved in fundraising on our behalf to help us keep this treatment going for Supatra. The Cambridge News has already indicated that they may want to do a follow-up story closer to Christmas and we will try to forewarn everyone when it is to be published. We will also be mentioned in a leading UK magazine 'Take a Break' in relation to Supatra's friendship with Billie Bainbridge, a five year old girl also suffering from a DIPG brain tumour. Hopefully this will also raise Supatra's profile a bit. We also intend to produce some blank cards using images drawn by Supatra and hope to have these available before Christmas. Last, my most favourite Aunt in the whole world took up a collection for Supatra and raised a huge 418.24 pounds! Love you Erika.
It's amazing how our emotions are swinging from low to high so quickly and so often as we continue down this journey. One minute you think you are about to lose your baby girl and the next she is doing just great. But we are feeling very lucky indeed that Supatra is doing so well again as we look forward to spending the Christmas holidays with her - her favourite time of year. Then it is only a short three months after Christmas and it will be another milestone - her seventh birthday! As Punny said today in the car, 'this is the longest year of my life' and it truly does feel that way. Thanks again to all the positive messages of support and your prayers.
Aloha to Olivia and the Bianco family!
All the best,
Jorg
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