Hello everyone,
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!
Until next post,
Best wishes to all,
Jorg
Friday, 27 January 2012
Friday, 20 January 2012
MRI Scan Time!
Hello everyone,
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!
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: http://www.hopeforlaurafund.co.uk/
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.
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 (http://www.nightrider.org.uk/) 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 http://www.justgiving.com/molesworthnightriderteam 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!
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 http://www.facebook.com/#!/destinyduo 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.
So, it looks to be a busy busy period on the fundraising front all around.
All the best to everyone!
Jorg
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!
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: http://www.hopeforlaurafund.co.uk/
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.
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 (http://www.nightrider.org.uk/) 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 http://www.justgiving.com/molesworthnightriderteam 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!
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 http://www.facebook.com/#!/destinyduo 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.
So, it looks to be a busy busy period on the fundraising front all around.
All the best to everyone!
Jorg
Thursday, 12 January 2012
12 Jan 12
Hello Everyone,
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.
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!
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.
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.
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!
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.
Friday, 30 December 2011
30 Dec 11
Happy New Year everyone!
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.
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.
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.
Please keep spreading the word about Supatra's need for help in order for her to continue this cancer treatment.
All the best to you and your families in the new year.
Jorg
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.
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.
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.
Please keep spreading the word about Supatra's need for help in order for her to continue this cancer treatment.
All the best to you and your families in the new year.
Jorg
Saturday, 24 December 2011
24 Dec 11
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
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
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
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