Saturday, 15 October 2011

14 Oct 11

Today I had to go to the clinic and ended up meeting another parent from Texas who's daughter was cured of her cancer a few years ago.  The child had cancer of the gland (which one not sure) which then later matasised (Sp?) to other parts of her body.  This cancer was detected at about six months old and instead of doing the standard treatment regimen of chemo and radiotherapy he choose to try Burzynski's antineoplastons.  She was on the treatment for three years and finished it in 2009.  His daughter is now six years old (I met her as well) and enjoying life.  This guy drops into the clinic every once in a while especially if there are children being treated and he and his daughter big gifts and get well cards for the kids and makes himself available to discuss his experience and provide advice.  I spoke with him for a good 30-40 mins and he gave me some valuable info on where to get a cheaper MRI scan, which Supatra will need at the end of this month.  He was a very nice down to earth guy that spoke candidly about his experience.  I also spoke with the Bainbridges about doctor support and they assured me that their doctor that has already signed the FDA form is a paediatric oncologist working for the NHS.  They also stated that as far they know he went through appropriate NHS channels to get the OK for this.  Therefore there should be no reason why other NHS doctors are turning this down.  The difficulty now is to get him to agree to release his contact details that I could then distribute to our doctors in the hope that this would be enough to convince them to support us.  So far he has not yet responded to the Bainbridges request and they of course do not want to push as this might cause second thoughts for whatever reasons we do not know about.

Supatra was in a down mood today and pining to go home to England to see her friends again.  She also does not want to be here for Halloween and would rather go trick or treating with her school friends, Isabel, Oli, Michael, etc.  At one point she was crying in my arms and then did not want to leave the bed.  We had to find something to help cheer her up so we told her we would go to the mall and let her ride on the carousel and play in the play center.  First though, we took her to the doctor to have her ear and nose checked out as she has been complaining of a blocked nose and right ear.  The doctors had to rinse her ear out to reduce the ear wax, which worked, and her nose was better as she managed to unblock it on her own.  When Supatra first underwent radiotherapy and took steroids she developed a repetitive habit of pulling at her lip on one side of her mouth.  When we finally got her to stop that she developed a habit of picking at her left nose which then developed into a sore that would constantly bleed.  We have now finally, I hope, got her to stop that but a few weeks ago she developed a habit of rubbing the corner of her left eye which also started to become a small sore.  Now we are trying to convince her to twirl her hair instead of these other destructive habits.  Supposedly this is normal for kids in her condition as one of the other UK girls has also developed a nasty habit of rubbing at her left eye and the skin around it is bloody and raw from this as well.

After the doctors we then took both Supatra and Jason to the mall as promised before coming home for supper.  Tomorrow we are going to try to go to Galvaston for the day and walk the beach some.  Hopefully, it will be a good trip and the kids will forget their woes.  Below are some pictures of Supatra and Jason playing in the apartment and with Supatra already in her Halloween costume which she has worn for three days now.

We have also heard that Supatra's school, Milton CE Primary, held a bake sale for us with teachers, parents and Supatra's friends and school mates helping out.  I heard from Chris, Michelle and Natalie that it was a great success.  As you can see from the pics below the food looks great and both me and Supatra would have really liked to try the second prize cake and the flag cake :)  Thanks to all those that participated and made it happen with a special thank you to the head teacher, Mrs. Dorrington for all your support.  Supatra would love to be involved in the next bake sale and wants to cook some cakes herself.  She is really getting interested in cooking lately as she helps prepare her meals here.  Supatra gives a shout out to all her friends and misses you all - please pass that along to your kids.

Warm wishes and have a happy weekend all.




1 comment:

  1. The cake bake was a great success and organised by Karen( Ben's mum). I so hope Supatra can be home by Halloween. Bella has great memories of going to the airbase and getting an unbelievable amount of sweets!