Unfortunately this past week has not been a rather good one for Supatra which has culminated with her being admitted to the hospital on Friday 11 Nov in the evening. Everything was still OK up until Thursday even though she was getting pretty tired and eating less and less. We attributed her eating to the fact that we had taken Supatra off her steroids since 4th November and a little of her lethargy to the same thing as that is what can happen when coming off steroids while being dependent on them. On Thursday Supatra ate very little and when I came home on Friday after Remembrance Day ceremonies and found out from Punny that she had not really eaten and was sleeping most of the day we discussed and agreed that we needed to give her an emergency injection of Decadron steroids as we had been taught at the Burzynski clinic. However, because she could still be woken up (just not for lengthy periods and it took a long time to do so) we also determined that we should try a half dose of 0.5ml first. We did this and then communicated with the clinic and they agreed with our decision but also recommended giving her another 0.5ml if she did not improve after an hour or so. At approx. 1630 we did this and at first it seemed like it might be working. We took her to the kitchen to eat as she clearly indicated she was hungry (although not really talking). She took the food in herself but quickly realized through Supatra's sounds that she could not chew or swallow her food nor was she able to talk to us in a coherent way. We were really concerned at this point because these are associated tumour growth symptoms and called the hospital to tell them we were bringing her in. At this point we were not thinking about tumour growth but that she might have swelling in the brain from the antineoplastons breaking down her tumour. They asked us to wait another 60 mins so that they could move patients around and free up a bed and room. On the way to the hospital she was in distress, crying but not being able to tell us what was going on. I had to stop driving a couple of times to calm Supatra and make sure it was not turning into a major emergency. Me and Punny were so scared and not being able to communicate with Supatra made it worse. After calming her and asking her to respond to our questions with hand signals she indicated that she was either dizzy or had a pain in the front of her head. Of course this made me drive even faster to the hospital.
Once we arrived and told the doctor what was going on they put her on an IV drip and gave her a big dose of steroids to start hopefully reduce any swelling in her brain that might be going on. However, approx 30 mins after arriving Supatra started acting strange and went into a fit/seizure (according to what the doctor thinks) as she had this very frightened look on her face and could recognize us no longer. She would look right through us, pull us near and hug us and then push us away as if our faces were frightening to her almost like she was seeing something very horrifying to her. I was trying to remain calm but inside I was in a panic as I thought the worst was happening. Both me and Punny were very frightened for Supatra and started to cry while telling Supatra that we loved her very much and each hugging her. We just could not believe that this was happening after she was doing so well on the treatment in Houston and showing a reduction in her tumour only a few weeks before. After what seemed like 30-60 mins Supatra started to calm down and appeared to be a little more responsive to our voices and questions. She indicated that she could see us and we used hand signals to communicate. Man, was she frightened and in turn I was so scared the way she looked at us and that she might never be able to see again. For periods of time she would not respond to us with her eyes and would look away but on occasion would nod her head in answer to a question. The doctor gave her more drugs and then took us away to talk to us in private. I hate when they do that as both me and Punny know what that means...more very bad news. The doctor told us of her thoughts that either the tumour or parts of it had started to regrow and was putting pressure on sensitive brain function areas or that she may even have had a small bleed. Either way it was not good and it would mean having Supatra with us for a limited time. However, although the doctor was familiar with our case and the fact that Supatra was on the experimental antineoplaston treatment she never once asked about it, its affects nor about what its impact might be with regard to assessing what was now happening to her. So me and Punny started talking afterwards and we both thought that another scenario could be that the antineoplastons were having such an effect on the tumour that it could have caused the main tumour to break apart (causing fast swelling/pressure) or have affected one of the smaller 'fingers' of the tumour with the same result. We just can not believe that these symptoms that Supatra was all of a sudden having is tumour regrowth. We are now trying to arrange an MRI scan for her in the coming days to hopefully understand more about what is happening to her although these scans are by no means definitive in answering all the questions or in understanding what is happening in her brain.
When we first arrived in the hospital on Friday evening we also asked that a feeding tube be installed because she was no longer eating and now could not eat. They agreed but said they would start this on Saturday. I explained that Suaptra was very weak and that some of this weakness is no doubt due to her not having enough food over the last 5-6 days. On Saturday, although asking several times when they would put in the feeding tube it kept getting pushed back because they were short staffed and her feeding tube was not inserted until about 1.45pm and then they did not start the feed until about 4pm! All this time Supatra is starving for food and clearly very weak. I did not fuss about it too much as the nurses were very apologetic and its not their fault the ward is short staffed but inside I was pretty upset that it took so long. Of course taking in food through a tube is also new to Supatra and she had a very empty stomach so they wanted to start her feeding off slowly at only 10ml/hour which is quite a small amount of sustenance. At this time on Saturday I was alone with Supatra as Punny went home to do some work contacting people, arranging continuous babysitting coverage for Jason and bringing some more supplies to the hospital. At one point in the afternoon Supatra was distressed again and she crawled onto my lap as I was sitting next to the bed and she wanted to hug me or be hugged. I held her for a good 20-30 mins rocking her back and forth while we both cried. I told her that I loved her and was not a better father to her, that mom and Jason loved her and that granny loved her. I just wanted to make sure that she knew everyone loved her and asked her repeatedly to keep fighting her tumour; to stay with us, to not leave us. I think she understood some of this as she reacted by hugging me harder and crying more pronounced. I don't think I have ever kissed her so much before. I spent the rest of the day with her reading her stories, talking to her about when she was little and just cuddling with her in the bed as she slept. I still can't believe this is happening; its like January 2011 all over again.
Me and Punny have now discussed about the possibility of moving up celebrating Christmas and maybe even her birthday. We are also thinking of bringing granny back over to the UK to help keep Supatra company and of course also be with her should this be a fast moving situation.
I just spoke with Punny on the phone and Supatra seems to be a little more awake and has actually been awake for about an hour watching TV, responding to Punny, although not quite talking yet. She is also finally taking some water by mouth and tried to eat a little something as well. Later this afternoon we will be trained on her feed tube maintenance and pump use and then on Monday morning if all is well (or as well as can be) we will be taking her home. After I write this I will be re-arranging the living room and it will now be her bedroom so that we can be closer to her during the day. It will also free up a bedroom upstairs in case more relatives come. I think Punny's sister will also be coming at some point. We are also of the opinion that once Supatra starts feeling a little better that we want her to go back on the antineoplaston treatment. The affect on her quality of life will be minimal but it may still have a big impact on how long she is with us or maybe even a reversal in fortune, you just never know. We will have to wait and see what Dr. Burzynski says as we are also recommending that Supatra's target dose be lowered considering it is based on weight and she has lost quite a bit since Houston.
Thank you to all our friends who have helped out looking after Jason. I will try and update this blog again in a couple of days. Please bear with me as I try to figure out how to re-organize this blog with these new pages you can add. It seems you can add new pages but the set-up is the same for each and therefore I can not change the way data is entered in some. Anyways, no time for that now.
Keep up the prayers as Supatra needs them, thanks.
Jorg, Punny, Supatra & Jason