Friday, 27 January 2012

27 Jan 12

Hello everyone,

Supatra is doing fine and near her target dose.  It was Punny's birthday this last Thursday and Supatra ended up being more excited about it then her mommy.  The little rascal couldn't keep a secret and spilled all the beans on what I was planning for Punny!  This week we got to borrow a Wii game from friends who are on vacation skiing and Supatra loves playing on it, especially the dancing game and bowling.  I guess we will have to get her one for her birthday on 29 March.  We are still not sure what we would like to do for her birthday this year and of course we still need to plan something for her little brother Jason who will turn 3 on February 10th.  The next big date for us is on 1st Feb as that is when Supatra goes for her next MRI scan and we get to find out whether the treatment is continuing to work on her tumour.  I am now following about 6 different blogs on UK patients undergoing the Burzynski treatment, two of them adults and they are all doing very well. We are very lucky that Supatra has made it this far and we pray that she continues to do well.  I think the longer she stays stable the greater the chance of success in beating this cancer.  Today was an eventful day as she attended school for almost the full day for the first time since last year.  She was rather tired afterwards but thoroughly enjoyed being there with her friends who she misses terribly.  She is such a lovely daughter.  When I was away from my home office she wrote a bunch of messages of love with pictures on post-it notes and stuck them all around my computer :)   I love her so much!  I think I will take her shopping tomorrow to buy some toys for her brothers birthday - she just loves to buy presents for others.  Thanks to everyone at the IFC who keep giving to support Supatra's treatment costs, you guys and gals are amazing!

Until next post,

Best wishes to all,


Friday, 20 January 2012

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:
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 ( 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 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!/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!

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.