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

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

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. 

 

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.

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

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

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