13 Oct 11

Well, we're still here in Houston waiting for a UK doctor to step up and help us.  Its been over three weeks since we first approached our local surgery and they are still dithering and can not even give us a clue as to when they might make a decision.  We have also sent out about 8-10 emails to various other private clinics, hospitals, and doctors to try and find someone without luck so far.   Is there anyone out there willing to help a six year old girl stay alive or are you all just worried about yourselves and the NHS cover your ass stance?  I just can not believe the medical profession these days.  In America they try to wring you dry of your life savings before doing anything for you and in the UK no one is willing to try a treatment or in this case just support the patient with regular run of the mill medical support just because its not a mainstream clinical trial.  Listen doctors!  You are not offering my daughter anything else but death.  There are no other clinical trials available for her so get off your high horses and help us out a little.  We are willing to sign waivers of responsibility, we are willing to pay for everything.  What more do you want?

Can anyone help in the UK?

We are getting so fed up with this BS that we are now ready to fly the family to Thailand.  Punny's brother has already lined up a doctor, a place to stay, a nanny, and of course Punny's relatives and family are ready to assist. 

End of rant

Supatra continues to do well and has not been sick for several days.  We are now considering reducing her low steroid dose to once a day to see how she reacts.  We are starting to get used to the routine of doing a change bag in the evenings and then prep the next days bags in the morning after her last dose.  It was too much to prepare all three bags at once so we had to break it up this way.  Of course, every Monday, Wednesday and Fridays we also have to draw blood from her catheter and deliver it to a local lab for analysis.  We are getting tired as well, not only from the sleepless nights when sleeping with Supatra - we take turns, but also from being in this very small apartment with none of the children's friends around.  Today we went to the Houston Space Center to get out of the house and had an interesting tour.  Unfortunately we got there a bit late in the day and did not have time for much else other then the tram tour.  Supatra is also eager to return to the UK to go back to school and to enjoy Halloween with her friends.  Its so hard on the kids and they are starting to complain that they want to go home.  Its hard to keep my spirits up knowing that I will likely have to send my wife and kids to Thailand and not see them for long periods of time.  What happens if the worst happens with Supatra and all I get is a few weeks with her before she leaves us?  I would be heart broken not having spent more time with her.  We also have to think of Supatra because whether Houston or Thailand she will still not be with her friends and on top of that have to live in a country she has only briefly visited a few times before.  This really is a no win situation and we must therefore find a doctor, someone, that is willing to sign this FDA form.  I have been told it could also be a Homeopath doctor or a Pharmacist, it doesn't really matter as long as there are doctor credentials attached to the name.  Why, because the local surgery and Addenbrookes doctors are still obligated to look after Supatra and hence we would still be able to get her examined and have her blood analyzed privately. 

On the fundraising side of things we are receiving periodic contributions and I feel so grateful when I see those that I know contributing to help Supatra and us out.  We really have some wonderful friends, co-worker's and acquaintances.  Supatra's school will be holding a bake sale, I think on the 14th October and we may be getting our story told in a UK magazine soon.  We have some close friends that have taken on the responsibility of directing and organizing our fund raisers for us - thank you so much Natalie and Michelle.  I am getting more confident that we will be able to raise enough money to keep Supatra on this treatment as the days go on.  So many people to thank....

Warm wishes to all...even doctors:),

Jorg