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