Thursday, 12 January 2012

12 Jan 12

Hello Everyone,

Apologies for not posting more regularly lately but I have been rather tired in the evenings and not too much has been happening with Supatra.  Supatra continues to do very well, especially since last post.  She has been in an upbeat and jovial mood the whole time and very active.  We took her to London on 7-8 Jan to go skating each day and spend time at the Museum of Natural History.  We had a great time.  This was a weekend with just me, Punny and Supatra while Jason stayed behind with his grandmother.  We have been slowly increasing her antineoplaston dosage and she is now at 180ml AS10 and 12ml AS1-2.  For those that may not remember, her target dose is 200ml AS10 and 18ml for AS1-2.  However, the day before yesterday Supatra was a little more tired then she had been and not as perky mentally.  We were not sure if it was the treatment or all the activities she was involved in over the past week.  Yesterday though, she was even more tired and there were a few other subtle changes symptoms that had us concerned and so we decided to give her a 2.5ml dose of oral dexamethasone and we did the same again today.  Today Supatra is back to herself again although still slightly more tired then usual.  We again gave her a 2.5ml oral steroid dose and for the next few days will give her 1.25ml to start the weaning off process - unless of course symptoms reappear.  We will also keep her at her current ANP dosage level for the next few days and monitor her closely.  If all seems well then we will start to increase her doses again.  The rash that she developed before Christmas is not as intense any more and we are hoping that issue will be behind her.  Supatra has been looking really well and shedding some of her steroid induced access weight for the last few weeks so we are not happy that we had to put her back on steroids.  I think this has been one of her longest periods without steroids having taken them last on 23 Nov 11.  She looks so much better when you see her now and compare her to her pictures from August.  Even Supatra realises it when she looks at herself in the mirror.  She is also still eagerly awaiting the day she can have her smile back as well.  She has been such a lovely girl these past weeks, joking, talking up a storm, being cheeky, and making beautiful cards and arts and crafts for me and mommy.  When we see her like this - almost completely normal, it makes it very hard on us when she has symptoms reappear and it snaps us back to the reality of her situation.

We also hosted the fundraising committee meeting at our place yesterday evening and there will be some excellent events coming up shortly, which I will post and update the blog on when things become a little bit more solidified.  One event that I would personally run and organise is a Cambridge to London and back bike tour.  The idea would be to have a minimum of two riders and up to a maximum of about 20 cyclists participating.  Participants would canvas their own sponsors and we would look to advertise this on radio and print.  The plan would also be to ride as a group (not a race) and stop in a few choice locations to collect donations along the way.  I would like to conduct this sometime in May and will try to get the initial advert out by end January to solicit for participants.  If someone wishes to join in then please contact me direct (if you know me) or make contact using the contact form on this blog.  Of course we also have the much anticipated Thai dinner evening on 4 Feb 12 at the Abbott's Ripton community hall that will include Thai dancing and a kick boxing demonstration.  Again, just contact the fundraising team through the blog contact form and we can get some tickets to those that want them - but there are only 120 tickets so hurry!

Last, we still have some of Supatra's blank cards available for sale and now also rubber wrist bands with the colours gold for paediatric cancer and grey for brain tumours in a swirl design (blends in good with military uniforms so great for the soldiers out there!!  If you want some or would like to sell some for us then again, please use the contact form on this blog.  Also, if you would like to help out with a fundraising event then please contact us so that we can help get the word out.

1 comment:

  1. So sweet-lovi g the ice skating,sooooo cool. Wish i could do that.amazing ballerina dancing supatra you could be so famous 1 day. Beautiful and extremely brave little girl she must be going through so much. You just need to keep fighting. Please give another up date soon i love to hesr about supatras progress :-) :-) :-)