Saturday, 24 September 2011

23 Sep 11

Its been a frustrating week with the kids as they continue to act up when at home.  Its been a difficult struggle to get Supatra back on to her anti-cancer diet and to have her take her pills.  On top of this we had to start her back on a low steroid dose three times a day and as of today she must also take some potassium supplements as her potassium count was low.  Supatra continues to feel tired and has muscle weakness but on occasion can get quite perky.  We bought her a camel pack a few days ago to try out for carrying her pump and IV bags.  She now has a larger wheelie backpack and the camel pack and she can choose which she would like to use.  At first she resisted the camel pack as the pump and IV bags can be pretty heavy but she is starting to carry it on her back or sling it over her shoulder from time to time instead of us carrying it for her.  I think slowly she will get used to it and start to be more independent again.  We are thinking of designing something similar to the camel pack but made specifically for this device and treatment and then send it to Thailand to get manufactured.  It will be much better then the little black shoulder bag you get with the pump which is not at all helpful for children on this treatment.

Tonight we get to prepare tomorrows IV bags on our own as we will not have enough time between the last dose in the morning and the next dose with the new bags.  This is because as her dose continues to increase every day it takes longer to infuse the antineoplastons.  Right now it is taking 1:34 to infuse one dose and we are only at the halfway point.  By Monday they will start to increase the flow rate so that there is some time between doses.  As an example; tomorrow morning her last dose for the 24 hr period will be starting at 06:25 and end at 07:59 and we have to be at the clinic by 09:15 therefore not leaving us enough time to prepare the next set of antineoplaston bags.  Preparing the bags can take 40-60 mins.  It will be really important for us to calculate our 24 hr period start time and end time so that we are not switching antineoplaston bags in the middle of the night.  The bags come from the factory with some air in them and in order to prepare them for use we have to remove this air and any air bubbles that might be there.  The first step is to insert the tube end needle into the bag opening, then insert a portion of the tube into the pump and make sure the other end is in the factory bag that the antineoplaston bag came in so that when you prime the IV bag it drips into this throw-away bag.  Then hold the IV antineoplaston bag it upside down and tap the bottom where the bag opening is to get all the air bubbles out of the bag neck to float to top, then flip it over so the air moves back towards the bag neck where you just attached the tube to and start the pump.  The pump sucks out the air and you have to keep tapping it with your fingers, hand, or an object so that as many air bubbles as possible are removed.  then the pump gets turned off and you start the process again until all remaining air bubbles are gone.  There's obviously a little more to this but I am too tired to try and explain each little detail.  Needless to say it can be a lengthy process if you have a lot of bubbles in the bag and are having a hard time getting them to move through the bag neck and out the tube. 

We are not sure what we will be doing this weekend but we will have to visit the clinic on each day and then we will likely stay in the area for now while Supatra gets used to the treatment.  My sister and mother will be visiting us from 5-9 Oct so we may go to the Houston Space Center during this time.  I have also been informed that a friend of mine from years ago, Brigadier General Williams has raised $1400.00 for us and I would like to say a public thank you to him and all those that helped him raise this amount and to those that contributed.  In the near future I will try to provide an update on how our fundraising efforts are going and the total raised to date.  However, it has been pretty low key to date as we are waiting to return to the UK before making a concerted effort in putting together some fund raising events.  But we also have some friends in the UK who are now already planning some events and I believe Supatra's school will also do some things on our behalf.  Thank you to everyone!  In general, we have now raised enough for about one months treatment cost.

This week we were also told that family from the UK is also now here and we hope to meet them this coming week to discuss doctor support and get to know them.  I believe they have a young daughter who also has a DIPG tumour.  As well, yesterday we met a French couple from Dubai whose 6 yr old daughter was also diagnosed with a DIPG this May and although we did not get to meet their daughter we hope to do so this coming week.  They may end up staying in the same place as us and that would be good as then Supatra could have someone to play with and relate to.  Our new friends from Hawaii, Alex, Momoko and their daughter Olivia were at the clinic for the last time today as they have now finished their training and will be returning home to Hawaii this Sunday.  We wish them all the best and hope the antineoplaston treatment works for Olivia and that she becomes healthy and strong again.

2 comments:

  1. Love you and look forward to being there in a about 10 days. Hugs and kisses

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  2. Sorry, not Unknow, but your Sister. :)

    ReplyDelete