Hello everyone and a happy Thanksgiving to all our American friends on the continent and here in the UK.
Supatra is back to normal again and has been doing very well since yesterday. Of course she is still off the antineoplaston treatment and also her steroids but we intend to re-start her treatment next week. We would like her to recover a little more before putting her back on the treatment thereby hopefully achieving a more successful result and longer period on the antineoplastons. We continue to be concerned about staying off the treatment too long as this could result in the tumour starting to grow again. Supatra is eating, talking, laughing and playing like she normally does and we are very happy to have her back again. We have also discussed our options with the Burzynski clinic doctors and we have the green light to start her back on the antineoplaston treatment on Tuesday 29 November. In order to be extra cautious we will re-start her treatment as if for the first time at an extremely low dose of 10cc for the AS-10 and 5cc for the AS2-1. Then the AS-10 will be increased each day by 10cc and the AS2-1 by 5cc every three days, until we reach the target doses. We hope Supatra will cope with this approach as she did while in Houston.
Supatra has had an opportunity to visit the Milton hospice a couple of times over the last week and we will continue to take her there on a fairly regular basis so that she can get to know the carers. The hospice is an excellent place, although the reason for being there is not. The carers are exceptional people doing a difficult job but do it with compassion and big smiles - thank you. Supatra is also very eager to go back to school, however, that will only be possible on occasion and only for short periods of time. We are hoping that she will be well enough to participate in this years school Christmas play with all her classmates. I can't wait to see her up there on the stage again. Today we had a visit from my friend and Commanding Officer, Joe Huibsch and his beautiful wife Polly, bring us a Thanksgiving turkey dinner with all the trimmings. The dinner was delicious and I thank them for doing this on their holiday evening. Not withstanding the dinner it was also nice to enjoy a few beers with someone; something I don't get to do very often anymore.
This week was a big week for us on the fundraising front as well, as we finally had some press coverage about Supatra's plight in the Cambridge News newspaper on 23 Nov 11. We hope this will broaden the donor base as I know our friends, co-workers and local community have contributed the most to our cause and me and Punny are very conscious of that. We are hoping that through this story and those to follow we will get more people involved in fundraising on our behalf to help us keep this treatment going for Supatra. The Cambridge News has already indicated that they may want to do a follow-up story closer to Christmas and we will try to forewarn everyone when it is to be published. We will also be mentioned in a leading UK magazine 'Take a Break' in relation to Supatra's friendship with Billie Bainbridge, a five year old girl also suffering from a DIPG brain tumour. Hopefully this will also raise Supatra's profile a bit. We also intend to produce some blank cards using images drawn by Supatra and hope to have these available before Christmas. Last, my most favourite Aunt in the whole world took up a collection for Supatra and raised a huge 418.24 pounds! Love you Erika.
It's amazing how our emotions are swinging from low to high so quickly and so often as we continue down this journey. One minute you think you are about to lose your baby girl and the next she is doing just great. But we are feeling very lucky indeed that Supatra is doing so well again as we look forward to spending the Christmas holidays with her - her favourite time of year. Then it is only a short three months after Christmas and it will be another milestone - her seventh birthday! As Punny said today in the car, 'this is the longest year of my life' and it truly does feel that way. Thanks again to all the positive messages of support and your prayers.
Aloha to Olivia and the Bianco family!
All the best,