Friday, 19 August 2011

July 2011

1-9 July 2011

We had an excellent time in Wales this week with lots of activities and places to see.  We want to a place called Glan-y-mor, Wales and stayed in one of these semi-permanent caravans by the coast.  Unfortunately it did not have a sandy beach but we made the best of it using the stones and building sand castles during low tide.  The Christian Lewis Trust also provided us with several day trip tickets such as to a petting zoo, Centre for Alternaive Technologies, and a steam train ride.  It was great to see mountains again (its very flat where we live) and drive through them on the twisting and winding roads.  Thanks Natalie for the use of your Satnav. 

Supatra has been off steriods for over two weeks now the longest since starting her steriod cycles.  She was doing really well until about the second or third day into our trip; then she started becoming much more weaker and unbalanced.  Her weakness in the limbs and instability continued to decline to the point where she was having difficulty standing up from the kneeling position but we consciously decided to keep her off the steriods as long as possible as we knew she was now dependent on them.  At least she was not complaining of headaches and pains!  We decided to try and keep her off the steriods until after the vacation which is what we did and she started back on a steriod cycle on 9 Jul 11.  Supatra and Jason were great through-out the trip.  Supatra, again not bothered by the sometimes cool and rainy weather just wanted to stay out as long as possible each day playing on the beach building a dam across this small stream that empties into the bay.  She is very determined and would try to pick-up all sizes of stones and rocks even though she would have trouble standing on the uneven rocky beach.  Gotta love her determination and strength - never complained about anything and always with a positive attitude.  Love you Supatra!




10-31 July 2011

I know I did not mention it earlier but when Supatra was diagnosed with her DIPG tumour I arranged to stay in the UK for one more year (we were due to move back to Canada this summer) in order to allow Supatra to be with the only friends she had ever known and so that we could be where our support network is.  We also got confirmation from our landlords that we could stay in our rental accommodations for one more year but in May they came back to us and told us that they were selling their home and that we had until 9 Aug 11 to find another place to live!  Great, I wanted stability for the sake of my daughter and now I had to waste valuable time and energy looking for another place to live.  Not happy.  Well we found a place just before our trip to Wales and between our return and the end of the month we strictly focused on staying close to home and preparing for our move. 

Good news is that we managed to wean Supatra off the steriods again in the last week of July and until 31 July she was doing really well.  She finished out the school year on 22 Jul 11 and made some small hand paintings that we framed for all the teachers which they really appreciated.  Supatra also had a class show back in June and she had drawn a beautiful picture of a sunflower.  Well, one of her teachers took it upon herself to have it framed for us and it proudly hangs on our sunroom wall.  Its a great picture and Supatra always was a very good drawer.....I hope to get her to do more of these.  In fact what I would love to do is write some kids books and get her to do all the stickman type of drawings as I think it would be unique and something we could always treasure.

Me and Punny continue to discuss the Burzynski Antineoplaston treatment and we made a decision to try it during our Wales trip.  After we came back I sent all the required info and they determined that Supatra could participate in the treatment outside of a clinical trial as they had recently completed Phase II trials and were trying to prepare for Phase III.  However, as we progressed through July we (mainly me) continued to have doubts about this clinic only because I found it very difficult to find people that had undergone this treatment and post or blog in detail about their experiences with the treatment.  I found this odd considering that according to the clinic hundreds of people have had a 'complete response' to the treatment.  I also read numerous articles by medical practicianers on why Antineoplastons don't/won't work.  It is very frustrating research as one day I would feel really good about the prospects because of something or several things I read and then a day or two later I would have my doubts because of something else I found.  To go or not to go is the question?

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