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
Thursday, 26 April 2012
Wednesday, 11 April 2012
11 Apr 21
Hello everyone,
It has been too long since we last posted but I have had little inclination to do so as I seem to get busier and busier. Good news is that there is no change in Supatra although she has her occasional bad days in between the majority good days. I know I have not posted in awhile but I want to keep this post relatively short compared to my usual long winded ones :)
It seems like just yesterday Supatra had her 7th birthday.... oh wait it was just yesterday! I swear she had a birthday for about a week starting with her party on the 24th, followed by her actual birth date on the 29th, then another celebration at the fabulously organised Destiny Charity Show in Norwich, and then some further late birthday gifts, wishes and treats throughout the next week. Supatra really enjoyed herself and although we have not got around to sending thank you notes for the gifts - thank you to everyone who gave her one; she enjoys them all! This last Monday we also spent the day at Legoland with our close friends Dave, Natalie, Isabelle, Sam, Sophie, William, and Lilly. Supatra had a great time on the rides and loves the roller coaster, water ride and pirate ship. It rained all day but that did not stop us from having a great day out although we were all knackered after that. We were especially surprised with Supatra who managed to walk on her own for most of the day. Very surprising as she is very tired and weak most days from her treatment and the affects of the steroids she must take. We received the Burzynski clinic's report on her last MRI scan and basically has the same assessment as that from the NHS, that the tumour enhancement size has not changed and that it is too difficult to measure because of its reduced enhancement from the previous scan. She still has all her symptoms although some of these can be from the treatment and steroid use while the left facial palsy is definitely tumour related and has not gone away. To me this means that although the tumour does not seem to be growing it is also not receding enough to have a positive affect on her facial palsy. We continue to press on, hope for the best and wish her smile back. Supatra continues to give it her best fight.
I would like to say a special thank you to Matthew and Vanessa May for their continued support and some great fundraising initiatives on behalf of Supatra. If anyone is interested in Skydiving please look them up on Facebook under Destiny Duo and let them know. Matt is trying to get 30 people to skydive and raise 300 pounds or more each for Supatra. Then there is Supatra's Great Night Out party at Cambridge's Antsy Hall scheduled for the 28 Jun 12. This will be a big event so get your tickets now before they are all gone!
Thanks to everyone for following Supatra's story and for your many well wishes and continued donations.
Best wishes to all,
Jorg
It has been too long since we last posted but I have had little inclination to do so as I seem to get busier and busier. Good news is that there is no change in Supatra although she has her occasional bad days in between the majority good days. I know I have not posted in awhile but I want to keep this post relatively short compared to my usual long winded ones :)
It seems like just yesterday Supatra had her 7th birthday.... oh wait it was just yesterday! I swear she had a birthday for about a week starting with her party on the 24th, followed by her actual birth date on the 29th, then another celebration at the fabulously organised Destiny Charity Show in Norwich, and then some further late birthday gifts, wishes and treats throughout the next week. Supatra really enjoyed herself and although we have not got around to sending thank you notes for the gifts - thank you to everyone who gave her one; she enjoys them all! This last Monday we also spent the day at Legoland with our close friends Dave, Natalie, Isabelle, Sam, Sophie, William, and Lilly. Supatra had a great time on the rides and loves the roller coaster, water ride and pirate ship. It rained all day but that did not stop us from having a great day out although we were all knackered after that. We were especially surprised with Supatra who managed to walk on her own for most of the day. Very surprising as she is very tired and weak most days from her treatment and the affects of the steroids she must take. We received the Burzynski clinic's report on her last MRI scan and basically has the same assessment as that from the NHS, that the tumour enhancement size has not changed and that it is too difficult to measure because of its reduced enhancement from the previous scan. She still has all her symptoms although some of these can be from the treatment and steroid use while the left facial palsy is definitely tumour related and has not gone away. To me this means that although the tumour does not seem to be growing it is also not receding enough to have a positive affect on her facial palsy. We continue to press on, hope for the best and wish her smile back. Supatra continues to give it her best fight.
I would like to say a special thank you to Matthew and Vanessa May for their continued support and some great fundraising initiatives on behalf of Supatra. If anyone is interested in Skydiving please look them up on Facebook under Destiny Duo and let them know. Matt is trying to get 30 people to skydive and raise 300 pounds or more each for Supatra. Then there is Supatra's Great Night Out party at Cambridge's Antsy Hall scheduled for the 28 Jun 12. This will be a big event so get your tickets now before they are all gone!
Thanks to everyone for following Supatra's story and for your many well wishes and continued donations.
Best wishes to all,
Jorg
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