Sunday, 21 August 2011

12-19 August 2011

Well this has been a frustrating week or so in trying to make a decision on whether to go to the Burzynski clinic or not.  Last week it was a go and then a few days later we were not sure again as I read some questionable reports on Burzynski's treatment and I was still finding it difficult to find others posting about their expereince with the clinic and Antineoplastons.  I felt that if it was working so successfully then there would be alot more people touting its success. Then I found a couple of additional blogs on two kids that underwent the treatment; one lasting 13 months on the treatment before she sadly passed away and the other started at the age of three had his tumour shrink to a pea size blip on the scans.  He is now six but still on the treatment because the doctors do not know if the remaining element of his tumour is active or dead cells.  But even the mother of the child that passed away thought the treatment had merit and that it extended her daughters life.  In fact, she thinks her daughters tumour came back because she did not consistantly administer the antineoplastons in the latter part of the treatment which then allowed the tumour to regrow.  There was also a positive report on toxicity of antineoplastons by the Japanese that then swung our decision in favour of trying the Burzynski treatment. Me and Punny again felt that the doctors were not giving us anything else to hold out hope for and knew that what Supatra was experiencing now is referred to as the honeymoon period.  A period in which the tumour is in relatively stable condition probably due to the radiotherapy, diet and herbal medication we are giving her.  We are now very busy getting ready to depart on our transatlantic voyage on 29 Aug 11, finding a cheap flight to Houston and a place to live. 

The other thing that happened this weekis that we had our consult with one of the UK's leading doctors on DIPGs in London and he told us that in his opinion there was no more of a risk flying then there is not to with regard to the adverse affects on Supatra's tumour.  Surprise surprise!  So now that we can not cancel our cruise booking we have to continue with that part of the plan but are now looking at flying from New York to Houston, hopefully saving us some money in the process.  I don't know why Supatra's doctor thinks otherwise about DIPGs and flying.  I also read in the blogs that other parents of DIPG kids flew them to the Houston clinic as well and that one of them near the end of her daughters life flew her Disneyland with no adverse affects.  So if their kids can do it and the leading DIPG doctor in the UK says its OK then we are willing to take a chance.

The big worry for me now is whether or not the Burzynski clinic will be able to book Supatra's catheter insertion or whether we will have to wait until we get there and do it in person.  If the latter, it could delay her treatment for weeks.  Not only that but I only have a certain amount of vacation time that I can use as I am trying to keep some for later if and when I have to fly back to Houston to help Punny with the treatments.  The plan is to go togther as a family, get the treatment started, get trained in the administering of  the treatment and then Jason and I will return to the UK by air in late October to go back to work while Punny stays behind with Supatra and continues the treatment.  Then I would fly back in December to spend Christmas together and so on.  Of course we are still trying to make arrangements in the UK so that Supatra can return here to be with her friends and family while still on the antineoplaston treatment.  However, unless we can get a doctor to monitor the treatment we may not be able to do this and that would mean Punny and Supatra staying in the US indefinitely or until such time as the treatment is concluded.  Either way this is a big undertaking and we have alot to figure out and of course do once we arrive in Houston.  I am hopeful that the trip will go smoothly but worried about the first few weeks and months of treatment as that can be the worst for Supatra and the family.

I would also like to say thanks to all those at my work that are working hard on my family's behalf to get us the support we need.  I am lucky to have the the supervisors and friends I have at work and thank them for their fund raising efforts they have done and will do in the future on our behalf.   As well we have lots of friends within our community and they have been a great help with babysitting needs and fund raising as well. 

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