Tuesday, 22 November 2011

22 Nov 11

Hello all.  Since Sunday, 20 Nov 11, Supatra has started to slowly recover from her latest seizure/fit/set-back and as of today has started to communicate with us more and is much more cognizant of her surroundings.  Her left eye is still not better and the neurologist that we saw today at the hospital seems to think that her arm movements are related to the eye issue.  The neurologist did not think an EEG test would be helpful at this point and suggested that we just monitor and let her recover on her own.  He also would like us to video any future fits so that he can see her at her worst and make a more informed diagnosis of what may be occurring.  Supatra still does not have her complete thought process back to full strength but she is doing much better then yesterday.  We also did a little test on her with her steroid dosage as she was to transition to a lower dose from Sunday to Monday.  We gave her last dose Sunday evening and then instead of giving her a dose in the morning like we would normally do we waited to see how she would be during the day.  She was doing pretty good for most of the day until we gave her her steroid dose in the middle of the afternoon and within about 1.5 hrs she seemed to regress to her previous symptoms and was less cognizant of her surroundings and much less responsive.  We decided that it might be best to take her off her steroids as we are concerned about the side effects the longer she takes them especially with the high doses she received at the hospital two weeks ago.  We feel that together with the high dose of antineoplastons she was on that this double effect of reacting to the high antineoplaston dose combined with the high steroid doses given to her the first time she went to the hospital on 11 Nov 11 might have just been too much for her.  Today she had no steroids at all and she was really good compared to yesterday although she did get pretty tired near the late afternoon/early evening.  However, tiredness is also an expected side affect when stopping steroids so we are at this point not too worried about that.

Over the next few days we will be discussing Supatra's options with regard to the antineoplaston treatment and when it would be a good idea to proceed with it again - although we would like to start at a minimum dose and work our way slowly back up to a revised, lower target dose.  This way we can observe her reactions and if any occur can ensure that Supatra is taken off quickly and at a lower dosage point thereby hopefully mitigating any serious set-backs again.  But all this still needs to be discussed with the Burzynski doctors and sorted out.

We plan on doing lots of activities with Supatra over the coming week as that seems to lift her out of her 'brain fog' and gets her laughing and talking.  Last week, on Friday morning when she was back in her poor state she also pulled out her feeding tube, either by involuntary movement or design, and has been without since.  Not a big deal though as she was starting to eat by mouth on her own early last week anyways.  She is now back to the same chewing and eating capability that she had before these fits and therefore we will not be putting the feeding tube in again unless it is needed down the road.  In a way it is too bad because we were enjoying the fact that we did not have to struggle to get her to eat her cottage cheese and flax seed oil meals and drink her vegetable juice as we would just pump that through her feeding tube.  Now we are back to the same daily struggle of getting her to eat and drink these anti-oxidant and anti-cancer rich foods -oh well!

We are so happy though that Supatra is with us again and able to recognize and talk to us, what a feeling of relief.  We are also very thankful to everyone that sent out prayers and wished Supatra and us well, it all helps. 

This is turning out to be another busy week of doctor appointments, hospice visits and this weekend Punny's sister and another friend of the family arrives from Thailand.  Of course Punny is looking forward to having her sister finally come and visit.  Punny will also have another Thai friend from Cambridge come and stay and cook for our guests as well.  So there will be four Thai ladies and my daughter on one side and me and Jason on the other....hmmm.  I think I will have a rough few weeks :) Not least of which is that her sister and friend do not speak English so everyone will be speaking Thai and I will always be wondering what nasty..ahem..wonderful things Punny will be saying about me.  Oh well, I will try doing what I normally do in Thailand; just smile and nod my head alot.

Some very generous friends also helped us do a make-over for Supatra's room and delivered the stuff today and set it all up for us.  We have been wanting to do this for some time but we were waiting to be posted back to Canada; however, with two one year extensions we can no longer wait.  We are now just waiting for her bed to arrive and then we will take some pictures and post them.  Thank you to everyone that contributed to this wonderful gift and Supatra had a big smile on her face this evening - even Jason loved the new furniture and proceeded to proclaim it all in his name (the desk makes a great platform for his many new shiny cars that Louise bought him).  This was a really well timed morale boost for all of us so thanks again to everyone that helped make this happen and especially to Louise and Jeff Hague for all their help tonight.

Please take the time to click on the other pages of the blog.  I hope everyone likes the new set-up and there will be some more changes soon - so bear with us.  I especially hope you will take the time to visit the News and Forthcoming Events pages and help spread the word on upcoming fundraisers to your friends and family and by all means join in.  We have gotten some terrific donations from my unit members at the IFC and again I thank each and everyone of you for it.

Best wishes to all,


1 comment:

  1. I just became aware of your daughter's situation. My son also had diffuse intrinsic pontine glioma. I just wanted to mention that stopping steroids without weaning carefully (under medical supervision) can result in life-threatening complications. It may be that you already know this. Our son ended up on a ventilator in the pediatric intensive care unit when he suddenly stopped receiving steroids as a result of nausea and vomiting.

    I hope the best for your beautiful daughter!

    With hope,

    Always Andrew's Mom