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.