Apologies for not blogging over the last few days as I truly had meant to do but there is always so much to do and by the time the kids are asleep the only thing I want to do is unwind in front of the TV for an hour before falling asleep myself.
This last Tuesday we awaited with baited breath the results of the Burzynski staff meeting that would determine whether or not we would need to have this FDA form 1572 signed. We did not receive any messages nor emails and so on Wednesday I went to the clinic as I had other business to discuss hoping to get an answer. Surprisingly, the answer was that we would not need to have this form signed by a doctor in the UK although we had secured a private doctor that did sign anyways. Of course the not surprising thing is that no one decided it was important enough to pass this announcement on to those of us who have been stuck in Houston for weeks because of this requirement. Typical poor doctor to patient communication. Thursday 20 Oct, we booked our British Airlines flight from Houston to London for Wednesday 26 Oct and we managed to get a pretty good price at that. All told it will cost us $1902 for the family but the bad news is that BA only allows one checked bag per passenger on an international flight (unless you pay more) whereas most big airlines still allow you two bags each. I have submitted an email to customer relations hoping that they will wave any excess baggage fees as we will have 4-5 bags and several boxes of medical supplies. I hope they do, as we were told by the other two UK couples, the Bainbridge and Petagine's that their fees were waved. The Bainbridge's and Petagine's flew home on Thursday and we wish them all the best and hope that we may one day be able to get together again. I hope all goes well for their daughters Billie and Luna as they continue down their long journey of recovery and better health. Although Billie and Supatra did not know each other that well, Supatra felt sad that Billie was leaving. I think Supatra, like me and Punny, feel like we are always being left behind as families that arrived at the clinic after us leave before us. Supatra misses home so much and I think her spirits will be much better when back in the UK and close to her school friends.
Yesterday we went to an amusement park in Kemah, Texas, just south of Houston on the coast. We left the house a little late so we only managed a few rides and some supper before heading back home. We also took Supatra off her steroids three days ago and since then has been very lethargic, tired and is sleeping a lot. She has had no other side affects for two weeks now and so we believe that this might be to steroid dependency and a side affect of stopping the medication. However, today she is really tired and does not seem herself and after speaking to the on-call doctor decided to put her back on a very small dose to see what will happen. If she does not snap out of it I will increase her dose tomorrow after speaking with the doctor as I think we would need to put her on a larger dosage come Tuesday to prepare her for the flight home. She will not be allowed to take her antineoplastons while flying and the side affects of being taken off of the antineoplastons all of a sudden can be vomiting and headaches. Therefore, in order to reduce these affects we will reduce her antineoplaston dose by half for the Tuesday afternoon and evening dose and then take her off the treatment until we arrive home. Then we have been told to put her back on the treatment starting with a half dose for the first day and then back to her full treatment amount if there are no side effects. I just hope she does not feel poorly on Wednesday as I would hate to see her like that when not in the comfort of our own home. It will be a long travel day and night and I am sure we will all be very tired when we arrive in the UK.
On Monday I have arranged an MRI scan for Supatra, her first since being on the treatment. Please put in an extra prayer in that her tumour is getting destroyed and positively reacting to the treatment. I originally had hoped to get her the appointment in Austin Texas at a clinic that was only going to charge us $1088 compared to the almost $5000 we paid here in Houston; however, they were booked up and so I called another Austin place and they quoted me $1500, still very good compared to the first time. But I decided to search the Houston area again as I could not believe that Houston with all its medical facilities can not have a cheaper MRI price. I lucked out and found one not too far from where we are staying and they will only charge us $750!! I could not believe it and asked several times if there would be any additional hidden costs and they said no. Now why could the Burzynski clinic not come up with this place for caregivers and patients? I just can't believe we were sent to one of the most expensive places in Houston to do and MRI when we could have saved a bundle going to this place....sigh! Anyways, we wanted to do it here if comparable to UK prices so that we would not be rushed into finding and booking an MRI in the UK immediately on our return. This will give us some breathing room and let us settle back in at home, meet the doctors again and determine the best course of action with regard to supporting Supatra's medical needs while on this treatment. One of my key worries now is finding the best method of getting Supatra's blood analyized in a speedy manner as the NHS is too slow unless they can do stat orders and I am not sure how fast a private lab can get the results back. The Burzynski clinic needs the results on the day they are ordered, i.e. Monday, Tuesday, and Fridays so that the Burzynski doctors can determine whether any adjustments need to be made to the treatment protocol. One good aspect is that the time difference will work in our favour.
Tomorrow, if Supatra feels better we will take her to the beach again as she wants to build some more sand castles. This will likely be our last trip out as Monday and Tuesday look to be fairly busy as we do our final travel preps.
It will be good to be home again....