Set Back

Hello all,

I know its been awhile since the last post but allot has happened and we have been really busy dealing with the situation.  Since last update, Supatra continued to improve in her symptoms and so we (us and the Burzynski doctors) decided that we should re-start the antineoplaston (ANP) treatment on Thursday 17 Nov 11 on a low dose.  The Burzynski clinic concurred with this plan and so we did just that.  However, on Thursday early evening Supatra again had an episode like the week before; out of it, reaching out for us and wanting to hug, crying and making repetitive upper limb movements.  We immediately took her off the ANP treatment and gave her her second scheduled steroid dose for the day.  This did not improve the situation but we thought that coming off the treatment - if that is what was causing the reaction - would reverse the symptoms as before.  However, over the course of Friday and Saturday Supatra did not get better but instead declined a little further not able to communicate properly although still talk and say words and she was very active/ agitated and would not sleep the first night and only a little on the Friday night.  Of course we were very tired and asked the Addenbrookes doctors about the possibility of getting some medication for her that would help her sleep but when we described the symptoms they were not sure and wanted to see her.  This was Saturday afternoon and so we drove her to the hospital and the doctor checked her out.  He felt that it was not related to the tumour but instead more cognitive focused and therefore more to do with her frontal lobe of the brain.  He had us check in to stay at Addenbrookes until he could determine the cause.

Unfortunately, they have not been able to establish a cause for Supatra's symptoms and the doctor is trying to schedule her for an EKG of sorts on Monday 21 Nov to determine how her brain is electrically functioning.  His hypotheses is that she might be in some sort of epileptic seizure and that if she is they might try giving her some drugs for that.  But this is only conjecture at this point and they will have to do some more tests first.  We decided to go home tonight (Sunday) because there is no point just laying around the hospital room and of course we are feeling very sorry for Jason whom we continue to just drop off at friends on short notice...poor guy.  Supatra needs our 24/7 attention now and it is becoming a real burden on us to keep up and I don't know how we will manage when I have to return to work.  We are really depressed about Supatra's condition and are very worried that this may be permanent brain damage.  If it is it will mean that Supatra will likely not know us anymore as she now has trouble recognizing us and identifying with us.  I wish I could reverse that decision to put her back on the treatment on Thursday....

It is heart breaking seeing Supatra in this condition and we keep trying to talk to her to let her know that it is us, her parents and that we love her.  We have to constantly watch her as she tries to stick things in her mouth and rubs her left eye which is also irritated and bothering her.  Her repetitive actions are continuous unless she is pre-occupied with an activity like walking or sleeping.  She can not draw, count, nor do her ABCs.  I don't know what to do anymore. 

Supatra will remain off the ANP treatment until the doctors can figure out what is happening and this has repercussions as well.  The longer she is off the ANP the greater the chance the tumour will start regrowing...either way it seems we are losing her. 

I don't know when I will get around to updating the blog again, its hard enough trying to describe the symptoms and write how we feel.  What a crappy week!

Jorg