Saturday, 29 October 2011

No place like home!

Well, its been a busy week again for us.  Since the last update on Sunday 23rd October we have been preparing for our flight home which was on Wednesday 26 October.  On Monday, 24 October Supatra had her MRI done and like the previous ones she was a real pro not moving an inch and actually sleeping through the entire 45 min procedure.  The technician was very impressed and said her images came out crystal clear because she did not move at all.  The rest of the day we continued packing for our return trip all the time wondering how we would fit everything into our bags.  Its amazing how much extra stuff you can accumulate in just two months; mind you we did have to buy numerous toys for the kids to keep them happy.  Tuesday was tied up with seeing the Burzynski doctors to discuss a few issues and find out the MRI results.  Happy, happy, happy news, Supatra's tumour has shrunk a little.  It was not a dramatic shrinkage and they could not yet give us a percentage as the radiologist had not finalized the report but shrinkage nevertheless.  Compared to the last MRI measurements, I figure at least 10% reduction in size.  We got to sit with the radiologist and see the images and discuss the results as well.  As of today I still have not received the final scan report and sent them a reminder that we are waiting for it.  We are very happy considering over the last few days we were getting worried about Supatra as she seemed out of it, tired, lethargic, and just not herself.  We found out at the meeting that it was her sodium level that was high and likely the cause.  The doctors told us to take her off treatment, which we were about to do anyways for the trip and await the next blood results before they would determine whether or not she could go back on the treatment.  We also picked up our initial supplies of medical equipment and antineoplastons to take with us on the flight home.

We are feeling so relieved knowing that the treatment is working for Supatra.  At around the same time we also heard news about a boy named Joseph whom we met at the clinic and who started treatment after Supatra.  Joseph is from Louisiana, five years old and has Glioblastoma multiforme (GBM) brain tumour.  His parents decided not to go with the regular medical treatments as they did not like the side affects and were not given much hope by the doctors.  Therefore they took him straight to the Burzynski clinic for antineoplaston treatment.  Well, only about 3-4 weeks into the treatment after they had gone home they noticed that Joseph's symptoms were going away and wanted to know what was happening to him so they took him for an MRI earlier then required and to their great surprise and joy were told the tumour had shrunk by 95%!  After only a few weeks of treatment on antineoplastons. WOW! We are so happy for them and wish them all the best.

Wednesday's travel home went very well; better then expected, thanks to Lorna Pyke who helped us out by smoothing the waters with British Airways (BA).  Lorna talked to the ground crew at Houston and Heathrow airports and the flight aircrew which proved to be very beneficial.  The Houston ground crew were very helpful and did not fuss about our excess luggage nor weight.  They also upgraded us from economy to the next level and let us use the BA club lounge which really made a big difference to the way we usually travel.  When we arrived on board the crew knew who we were and were ever so helpful to us and so kind to Supatra.  When we were settled in the crew had two available seats in club class (the individual reclining seats) and let Supatra and Punny sit there while me and Jason stayed in what I think is called executive class.  It was a very good flight and we are ever so grateful to the Houston ground crew and flight crew for their kindness and service.  Last, a big thank you to Lorna for helping us out and making it a hassel free trip home.

We arrived home around noon Thursday and pretty much just did some unpacking and slept as we were all tired (Jason did not sleep much on the flight and kept us busy).  Since being home we have done allot of sleeping and just getting re-acquainted with our house and big kitchen which we missed so much.  Of course our friends were great again and left us some welcome home presents for us and the kids (thanks Mie and Nat). 

On Friday we also had our first appointment with our new doctor and we drew some blood there for him to send off for analysis.  Today, Saturday, we received the results and not surprisingly Supatra's sodium level has come back down, considering she had been off treatment for the last three plus days.  Today we were allowed to resume treatment at half dose for today and we are then to go back to a full dose the next day.  Hopefully we can keep her sodium levels in check or else the doctors may decide to reduce her treatment dose, which is not what we want.

All in all, everything is good; we are home; we are happy with Supatra's progress and we look forward to getting our daily lives back to normal as soon as possible.  Supatra is of course eager to get back to school but we still need to discuss the options with her head teacher as it will be difficult for her in school attached to her pump and IV bags.  Jason is extremely happy and has not stopped playing with all his toy cars that he missed so much.

Best wishes to all,

Jorg & family

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