Its been a few days since my last post but we really have not been doing anything exciting and Supatra's treatment continues on schedule and she should reach her target dose by Monday 3rd October. Supatra is handling the treatment very well although the constant peeing is driving us and her nuts. It is making it very difficult to plan a day out with the kids. Today we were going to go to Galveston to spend some time on the beach and explore the area but after waking up late (we did not have to go to the clinic today) and with Supatra's IV bag change scheduled for around 4pm it is not worth it. Now the plan is to go downtown after lunch with another mother and daughter, Leyel, from the Burzynski clinic. Supatra and Leyel are of the same age and have the same tumour. They are starting to become friends which is great.
Every morning after her last (sixth) dose each 24 hrs we disconnect her from her pump and IV bags. This allows Supatra some freedom for 1-2 hours prior to our clinic appointment each morning at which she then gets reconnected. Supatra is very happy when she gets disconnected from the pump in the mornings and she dances around singing 'I'm free, I'm free'. We could disconnect her after each infusion and then reconnect prior to the next infusion cycle but it is not encouraged as this can increase the risk of infection through tube and catheter contamination. Over the next week, I think the mornings will become a little more relaxed as they start to allow us to change IV bags, dressings, and draw blood from home rather then having a fixed appointment at the clinic each morning. This will further prepare us for our journey home to the UK because once there we will be required to do everything anyways.
Yesterday I also had the opportunity to meet two other couples from the UK who now have their daughters undergoing antineoplaston treatment. It was good to finally meet them and exchange some information about doctor support in the UK, fundraising and other experiences that they have had. We still have not heard from our local doctor and will wait until Monday before making some calls. If there still is no answer I will start to engage some other contacts I have been given. Time is running out for me as I will have to return to the UK no later then end of October and of course we also still have to book return flights as we came on a one way ticket not knowing when we would return. The next concern will be to find a good return airline ticket price but one that will also wave fees for excess baggage as we will be traveling with at least two weeks supply of Antineoplastons. One bag is 1 ltr and the other is 250mls and she requires two of the 1 ltr bags and one of the 250ml bags each day. Therefore a two week supply will be very heavy plus all our own baggage that we came with. Does anyone have any connections with an airline that might be willing to help us out??
Again, I would like to acknowledge some folks that are raising funds on our behalf. My sister Christine, her work colleagues and business contacts and friends of the family, the Kaufmann's in Toronto. Thanks for the support.