Sunday, 28 August 2011

Final Trip Preparations

Its been a week so time for an update.  First, I want to again thank everyone who has donated funds for Supatra's treatment as every little bit helps and will extend our ability to keep her on it.  I especially want to say thank you to all those at work who have helped or tried to help with information on the Houston area, finding a car and a place to stay, etc and those friends of friends who have offered to assist where they can.

Supatra continues to do as well as the previous four weeks off her steriod medication.  She has shown no further signs of a decrease in her mobility and motor skills.  In fact she is really surprising us with her energy over the last week as we have been pretty busy with her visiting and playing with various friends before she goes away.  Our friends Mie and Marcus made a beautiful little book taking photos that had Supatra and their son Oli's picture together and then putting it in a professionally made book with a short story line.  Supatra's best friend Isabell also put together a scrap book with photos of them and a description of each in her own hand writing.  Well done Isabell!  We will take these along on the trip so that Supatra has something to remember you by.  Then there are the countless other parting gifts Supatra has recieved from other friends and her teachers; all very much appreciated by us and Supatra. 

Me and Supatra had a very touching moment a few evenings ago when we were sitting together while she was taking her herbal medications.  I can't remember what triggered it but Supatra told me that 'I don't like being chubby because I don't like the way it makes my face look'  to which I told her that she would always be my little angle no matter how she looked, chubby, skinny, short, tall, whatever; I will always love you.  Supatra then moved closer to me and hugged me and began to cry and of course that made me get all teary eyed as well.  After a few minutes I stroked her hair and told her not to be sad and cry and she stated 'its not a sad cry but a happy cry' and hugged me some more...a very happy and sad moment for me. 

Yesterday evening I was sitting with Supatra and her brother Jason and as she was hugging her brother she said that she was going to miss him when she grows up.  So I asked why and said that Jason will still be around and Supatra says 'ya but he is not going to be around when I have kids!'  I said, no your right but you will still get to see him and you can visit each other.  She said, 'I wish I could marry him', to which I explained that sisters can not marry their brothers...she loves him and is a good big sister always including him in her games and trying to teach him stuff.  I think, like me and Punny, Jason will be lost without her.

This week has been fairly stressful for me trying to sort out all the last minute details of our trip to Houston, Texas.  The big piece that is still missing is our longer term accommodations.  We will initially stay in a smaller one bedroom extend-a-stay type place while we look over some options at same time.  We are hopeful that we will find something suitable fairly quickly.  We are also still trying to determine whether or not it will be possible to bring everyone back home to the UK after two months so that we will not have the additional living expenditures to worry about if we are forced to keep Supatra and her mom in the USA.  I find the search for a supporting doctor in the UK very frustrating.  I don't see where the problem lies even though Supatra's Dr. has explained her and the oncologists teams position. A Dr. just needs to monitor, pass on medical info to the Burzynski clinic and be responsible for ordering blood work and MRI scans and more importantly needs to assert that they are Supatra's Dr so that the FDA and the Burzynski clinic can be sure that an out-patient has medical support in their region.  The UK Dr. keeps saying that they do not know anything about the treatment but at the same time they have not even contacted the clinic to try and determine what information and help would be provided to them and get in more specific terms what the UK Dr.'s responsibility would be.  The UK Drs keep talking about Burzynski pushing off responsibilities and risk onto them yet this is no different then other clinical trials being held with patients in divergent locations.  If only they would pick up the phone or contact via email to get more the specifics it might answer all of their questions instead of trying to get the answers from me.  At least then they can make an informed decision.  Obviously, there are other drs in the USA and in other countries who are willing and have supported parents decisions to try this alternative treatment and I don't hear of any lawsuits or other legal actions taking place - I have searched.  We have even stated that we are willing to sign waivers absolving responsibility should this treatment not work.  I still clearly remember the UK Drs words over the course of several initial meetings after Supatra's diagnosis...'we will do everything and try everything to help your daughter'; well how is palliative care helping when there may be a chance for longer survival on the antineoplastons? Their answer is... we would rather you get some quality of life with the remaining time your daughter has.  Yet, how is this different from chemotherapy for other cancer patients?  Do they withhold chemo because there is no guarantee for a cure so that parents can have quality time with their loved ones before they pass?  No, they jump on the chemo treatment even though with some chemos there are very strong adverse reactions to the patient which then requuires lengthy bed rest or even hospitalization - the vary thing they do not want for Supatra.  So how is this different then antineoplastons which by the way are not toxic and have limited side effects, each of which have been proven reversable in a very short period of time?  Oh I know, because Burzynski has not done a double blind study where he gives a placebo to one group, i.e. letting the patient die, while giving his antineoplastons to the other.  A real good test that one is.  If Supatra had to participate in one of these we would not even know which one she was taking and therefore not only be giving false hope to the parents but also letting the patient die.  No wonder Burzynski does not want to go down that route.  I would also like to say that I am also open to the idea that when patients seek out Burzynski's treatment usually as a last resort the patient is already trying various alternative medicines like being on an anti-cancer diet, taking various herbal medications, etc; just like Supatra is and that the combined anti-cancer supplements and treatments along with antineoplastons is what may actually be doing the trick in extending peoples lives and or curing them. In other words it is the synergy effect of being on multiple anti-cancer treatments that will probably have the biggest affect of stopping the tumour.

Apologies for the rant but needed to get that off my chest, in fact I would have a few more things to say but I do not want to burn my bridges with certain organizations. 

Tonight we will finish our packing and take it easy at home.  I hope we will have a nice relaxing time on the cruise as I know the hardest part is yet to come once Supatra starts her treatment in Houston.  I feel very anxious about this as I know we will have to be very patient with Supatra in explaining what we are going to do to her and that it is all about getting her better for the future.  Wish us luck......

Love and hugs to all

1 comment:

  1. Jorg, Well wishes to all of you during this time. The children and I have Supatra in our thoughts and hearts as she embarks on the treatment. Hang in there all of you and take care. Wayne, Ellen, Conner Upshall