Thursday 26 April 2012

26 Apr 12

Hello Everyone,

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.

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.

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!

Thank you to everyone for the continued support, love, and well wishes. 

Best wishes to all,
Jorg

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