The weekend was relatively uneventful for us as we continue to report to the Burzynski clinic every morning in order to do IV bag changes, set the pump for the next days infusion and do the occasional blood and urin lab work. On Saturday when we were finished with the clinic we returned to the apartment to rest up as Supatra is getting tired fairly easily lately and prepare some lunch. Then in the afternoon we went to a local mall to provide the kids some room to run and play in the malls play zone. We tend to do this every now and again as it is too hot to take them out to the outside play grounds. In the evening Supatra and Jason got to watch some family movies on TV (Finding Nemo and Home Alone II). Sunday was a nice quiet day at home and spent time in the garden with the kids. It felt good not having to go anywhere and to just lay around the house and garden.
Supatra continues to take the antineoplaston treatment well other than her tiredness. Friday we were told to increase the steriod dose frequency to three times a day but at only 1.25ml which is a pretty small dose. Her usual cycles in the past consisted of 7.5ml twice a day. However, today we discussed Supatra's symptoms or lack there of other then her tiredness, usually around the time of her antineoplaston dosages, and the doctor has agreed that we can reduce the steriods to twice a day for the next few days. If symptoms remain the same or are reduced then we can continue to reduce the dosage to only once a day, again for a few days before then stopping altogether. If at any time we see symptoms returning then we can increase the dosage again and even increase the ml as long as we call the clinic first to confirm the need. Me and Punny do not think that Supatra needs the steriods at this point but of course we have to slowly wean her off of them. Supatra is now on a 140ml antineoplaston dose on the AS10 bag and at her maximum 18ml on the second AS2-1 bag. Her target dose will be 200ml on bag one and 18ml on bag two which is much more concentrated. Therefore by this time next week Supatra should have reached her target dosage and then it will be re-assessed to see if she stays at that dose or it is increased slightly or decreased. These dosages are infused into her catheter 6 times a day every four hours. At the current dose and 100ml/hour intake rate it takes approx. 1.5 hrs to infuse which then leaves 2.5 hours on a slow drip that helps keep the lines open. We are also now preparing the IV bags for the next days dosage at home in the evenings. This means we have to wait for one of the infusion cycles to end which will leave us with 2.5 hrs to prepare the next days bags.
In order to do this we disconnect her tubes from her catheter and flush the catheter line with 5cc's saline. We attach a covered serynge needle on the end of the IV tube connector to keep it sterle and place it in a ziplock bag for extra safekeeping. Then we disconnect the current IV bags from the pump and place the bags and tubing off to the side. Next we take the new IV bags and new tubing out of their sterle packaging and tape one of the opened packages to the edge of the table where we will drain the excess antineoplastons fluid as we prime the bags and tubes. There are two tube lines, one for each IV bag and another Y junction tube set. You attach the Y junction tube set to the ends of the IV bag tubing; the other end of this Y junction set is attached later to Supatra's catheter tip. The Y junction tip is then dangled into the packaging we tapped to the edge of the table and as you prime the IV bags the excess antineoplaston fluid is deposited into the this bag, which is later thrown out. Then take each IV bag, one at a time into our hands and take off the top cap on the bag neck and insert the tube needle end into the bag neck opening and twist into the neck until it is well seated. Repeat for bag two and then connect the tubes to either side of the pump (tubes are appropriately marked for where they fit into the pump). Now thatb the tubes are connected to the IV bags and pump you can start to get the air out of the bags. I will not go into detail here as it is a very tedious process and all told preparing these bags can take up to an hour. Once the bags and tube lines are primed with fluids and there are no air bubbles present we disconnect the tubes from the pump and set the bags aside until they are needed the next day. Then you have to reconnect the current antineoplaston bags to the pump, flush Supatra's catheter line with 5cc of saline and then reconnect the tube to her for the next infusion cycle. By this Thursday we will also need to do a IV bag change on bag one half way through the day as we will exceed the 1000ml bag capacity during the course of a 24 hour cycle. It has to be during the third or forth dose (late afternoon or early evening) because if you wait until the first bag is almost empty you would be forced to do the change in the middle of the night/early morning. When you change a bag you also have to prime the air out just like when you prepare the new bags for a new day and therefore this can take some time so you do not want to be doing this at 3 or 4 am in the morning.
A couple of days ago we bought Jason a small 'rescue' garage to help keep him occupied in the apartment and it seems to be working. The only problem now is that Supatra and Jason will sometimes fight over the rights to play with it. So today I bought another different garage set hoping that there will be enough toys for all. Can't wait to see Jason's face light up when he comes home from the babysitter in the next hour.
I would also like to take this opportunity to say a big thank you to Punny's brother Mann in Thailand who has done so much for us in that country. Mann was the one that took Supatra's original diagnosis and scans around to various hospitals in Thailand for second opinions and found the retired oncologist that has developed a herbal extraction that has helped keep Supatra's tumour from regrowing. Additionally, Mann has recently taken an early retirement option at his job and wants to donate all of his retirement pay 200,000 thai Baht ($6,000.00) to help with the cost of Supatra's treatment. What a guy; and not forgeting all the help he has been over the years when we visit with the family in Thailand on our vacations. Thanks Mann and many thanks for all you have done for us and Supatra - your a fantastic uncle.