MRI Scan Time!

Hello everyone,

Home life seems to be getting busier every week and it is becoming harder to spend time on the computer to post on the blog.  I know some are eagerly awaiting news of whats happening with Supatra so tonight I hope to quench your thirst a little! 

Supatra continues to do very well and has been active everyday either spending some time in school for short periods, playing Wii games with her best friend Isabel or going out with the family.  We have kept Supatra on her small steroid dose as we do not want to upset her body by withdrawing the drug while we are still increasing her medication.  Hopefully once she has been at her target dose for a week or two we will try taking her off as she is already starting to put the weight she lost back on even at this very small dose.  She is now at 190ml for AS10 and 14ml for AS1-2 and she should be at her target dose within another week to 10 days.  We are purposely not rushing it as do not want a repeat of November.  Sometime in the next week or two Supatra will also go for another MRI scan and we are very anxious about this and hope we will have good news like that of Laura from Kent whose MRI a few months ago showed an initial 36% reduction and then more recently a 56% reduction while on the treatment.  Laura is an adult lady and has a different tumour then Supatra but it just goes to show that this treatment does indeed work for some patients (you can read more about Luara here: http://www.hopeforlaurafund.co.uk/
Additionally, through her blog I was linked up with another mother who had an 8 yr old boy with a brain tumour in 1998 that took the treatment and the tumour is now considered inactive/dead and he is now graduating from college and is 24 yrs old.  Unfortunately though, because his much smaller inactive tumour would still show up on his scans he remained on the ANP treatment for approx 7 years.  I hate to think that Supatra would have to do this treatment for that long and it does worry me. BUT these are all good news stories considering the severity of these brain tumours.

I still do not have firm details on our local fundraisers coming up but as soon as I get them I will post.  The next big event will be the Thai evening in Abbotts Ripton, Huntingdonshire (on the events page) and looks to be a sell out.  Next week I will be registering a team of at least ten cyclists who will take part in the London Nightrider 2012 Charity Cycle Tour on 8-9 Jun 12 (http://www.nightrider.org.uk/) which should be a great experience and an event that I will also participate in.  I have set-up a Molesworth Nightrider Team Just Giving page at http://www.justgiving.com/molesworthnightriderteam if you would like to donate.  Please pass on the info to your friends and family.  I am also putting the final details together for our Cambridge, London and Return Cycle Tour on or about 12-13 May 2012 and will likely also set-up a just giving page for this.  The aim will be to get 10-20 participants involved in this event with each pers raising funds through sponsorships.  Additionally, we have developed a formatted sponsor form and Supatra Fairy Fund poster that will be added to this site soon for people to download for their fundraising activities.  We are also looking to purchase Supatra Fairy Fund t-shirts that fundraisers could use.  Does anyone know of a t-shirt printer willing to work at a discount and know of any companies willing to sponsor the t-shirt purchase by having their company name or logo on the back?? If you do, please contact us on using the contact page. Then we have our very good friend Natalie running the Cambridge half marathon on 11 Mar 12 for Supatra and recently numerous others have joined in including several teachers from Supatra's school.  Very impressed ladies and wish you a speedy finish and a nice refreshing beer at the end!

The Last big event that I will mention is a local talent show being put together by a friend of a friend who heard about Supatra's story.  The event is at The Talk, Norwich, Norfolk on 30 Mar 12 and has a lot of support behind it with outstanding music, entertainment, door prizes and raffles.  For more info go to http://www.facebook.com/#!/destinyduo and/or our events page.  This event is supporting two charities, Cots for Tots and Supatra's Fairy Fund through the Joseph Foote Fundraising Trust and is a steal at only 10 pounds for advance tickets and 12 pounds at the door.

So, it looks to be a busy busy period on the fundraising front all around.

All the best to everyone!
Jorg