Friday, 2 March 2012

02 Mar 12

Hello Everyone,

You are all probably wondering whats happening with us and Supatra, eh?  Well, me and Punny have been feeling rather tired lately and of course there is always something to do with two little kids in the house - even under normal circumstances.  Supatra's condition is in a steady state at the moment with her dose now very near to the target but we have consciously decided to keep her at her current dose for the next few weeks as she has become more tired over the last 3-4 weeks since reaching this high dose level.  As a reminder her target dose is supposed to be 200ml for the AS-10 and 18ml for the AS1-2 per infusion every four hours and she is at 190ml and 18ml respectively, so very close.  However, when we took her to her current level about a week ago she again developed a rash which our UK doctor says is Erythema nodosum (you can google it) and could be caused by various things and so we decided that we would keep her at this dose for some time to see if she will adjust to it.  Other than this she has been doing really well and went to school a couple of days this week.  Supatra's grandma also sent her a Wii game console which she always loved playing at her best friend's house and has been pining for for months.  This keeps her dancing and moving around and she seems to be more attentive and energetic when there is something that is motivating her.  Over the last 3-4 weeks she has developed a short term memory problem which could be associated with some reported cases of "brain fog" while on antineoplastons or her brain functions are starting to be affected by the radiotherapy she has had.  I certainly hope it is the former and that this will pass over time while on the treatment or correct itself once off treatment as the affects of the radiotherapy scares me.  I would hate to think that we are undertaking all this effort only to have Supatra become permanently mentally handicapped in the coming years.  Of course the doctors never told us of the long term affects of radiotherapy because in their minds there are no long term DIPG survivors.  But what if this treatment and all the other alternative treatments we are giving her really work and she survives 3, 4, or 5 years?  What is going to happen to her brain, her hearing and will she develop other cancer growths because of the radiotherapy?  We just don't know and when I recently asked about the long term affects of the oncologist, she just side stepped the issue and did not answer the question. Obviously they do not want to tell us and have us worry about it because to them Supatra will pass away and it would be for-not to tell us of the problems she may face later in life - which to them will not come!

Of course not posting on the site also means I have not got around to creating a spot where I can put past and future MRI scans and applicable reports for you to see but hopefully will get around to this in the near future.  Her next scan will be scheduled sometime in the latter part of March and we hope beyond hope that her tumour will show some shrinkage. 

On the fundraising front, I would also like to say thank you again to all the folks at my office on RAF Molesworth who continue to give so generously to Supatra's Fairy Fund.  For those interested there are also numerous friends and acquaintances who will be running the half marathon in Cambridge on 11 March and you can go here or for the teachers from Supatra's school who are also taking part.  Then on the 15th March in the village of Milton at the Lion & Lamb pub there will be an auction night with many superb celebrity items to auction off.  Please see the Forthcoming Events page for more info.  On 24th March, local comedian Emily-Jayne Allen is organising an open-mike comedy night at the Portland Arms in Cambridge starting at 8pm; and last but not least Matthew May of Norwich's Destiny Due group is organising a big charity show in Norwich at The Talk on the 30th of March.  This show will be huge with Heart FM DJs hosting the night and dozens of local acts participating.  It is a family night out so bring the kids and we will be attending this one as well.  This charity show will be raising money not only for Supatra's Fairy Fund but also for Cots for Tots, a very worthwhile and deserving charity.  A big heart-felt thank you to all the organisers of this months many events!  Unfortunately, we can not take Supatra and Jason to all these great events nor can we the parents always attend as we try to maintain a strict routine with Supatra's food and medication but we appreciate every one of you for your hard work and support.

There are additional planned events and I ask that you keep your eye on the 'Forthcoming Events' page even if you do not see a new blog post as some on the fundraising committee have access to this blog and will from time to time make improvements and add new events.

Good night all,

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