Tuesday, 15 November 2011

14 Nov 11


Thank you to everyone for all your well wishes and it looks like it is paying off.  We were finally released from the hospital at around 5pm after having been told that we could be discharged in the morning.  But it was OK as we were not necessarily in a hurry to get out and it was important to meet a number of various support people to discuss how we would look after Supatra.

Overall today was much better and considering she did OK on Sunday we were expecting her to be better and more awake.  Supatra woke up around 9am and stayed awake until about 2pm before dozing off for a short afternoon nap.  She was then awake from about 3.30pm to 8.30pm tonight.  While still in the hospital she tried taking some soft foods by mouth and drank allot of milk, all good signs.  She also made several trips to the loo and walked the hospital C2 ward corridors with a little assistance.  She was given one of those four post U shaped walking frames but instead of using it properly she carried it and walked on her own!  Unfortunately, Supatra still can not talk, chew properly and she still seems to be in a haze, sometimes seems bewildered and not quite there.  Her brain functions have definitely been affected but we are hopeful that this will be relatively short term.  She can understand us and uses hand signs that we taught her and we are now also using pictures and words on a card to communicate.  She understands but most times she is very slow to react to what we are saying.  Today we saw a steady stream of doctors and support carers starting with a new doctor from the oncology team whom we had not yet met and he gave us the good news that they had scheduled Supatra for an MRI scan at 11am this morning.  That was a welcome relief as we had wanted one for her to determine, if possible, how bad Supatra's situation was.  We also need this scan for the Burzynski clinic so that they can also assess whether or not she can continue the antineoplaston treatment.  Then we were taught how to use the feed pump, saw the Occupational Health specialist, Physiotherapist, Speech therapist, Dietitian etc, etc.  In the end I had to make two trips to the car with all the extra stuff and supplies they gave us.  Its amazing how much goes into supporting a cancer patient and believe me its needed and very welcome.  The NHS does a very good job in this respect.

Before we were discharged we got some more good news from one of the other doctors that their initial look at the MRI scan indicates NO NOTICABLE CHANGES since her last MRI scan of 24 Oct 11 - YAHOO!  What a relief that bit of news was, although still only preliminary.  This to us means that Supatra's situation on Friday was likely a result of the antineoplastons affects on the tumour or a portion of it that resulted in some sort of inflammation in a sensitive part of the brain (my analysis). i.e. there are parts of the tumour that only need to grow or move a tiny fraction in order to affect certain brain functions.  The worry now is whether Supatra's new symptoms of no speech, slower thinking and affects on her eye-sight (we still think her vision is somewhat affected) is short term, long term or permanent.  But we are also now hopeful that the Burzynski doctors will give us the green light to re-start her treatment albeit at a lower dosage.  Again, the problem here is the time it will take to make that decision as they want to see the MRI scan themselves and that can take some time as I have to get it from the NHS through a disclosure release application and then courier it to Houston.  This may end up taking 1-2 weeks and we do not want to wait that long to re-start her treatment as that might be enough time for the cancer cells to recover and start re-growing.  Once re-growth happens it is very hard to stop it and usually the prognosis is much worse.  Please pray that this does not happen and for a quick decision!!

Of course we had our wonderful friends helping us out again with Jason's babysitting, people bringing over home cooked meals and others taking care of our house and helping us with cooking and cleaning.  Thanks to everyone.  We also received a hockey sock (don't ask me how much a hockey sock holds) full of messages praying for Supatra's well being.  Supatra's friend Oli from Class 5 brought over a get well booklet with messages from each of the children in that class.  Supatra is in Class 6 so this card makes it that much more special.

This will be a busy week for us as various nurses and specialists come to visit us at home to review our home care set-up and provide valuable assistance and advice.  We plan on relaxing as much as possible with Supatra and trying to get her to learn to speak again and start eating on her own.  She will have our full attention and need 24/7 care, at least for now.  I am hopeful that if we can get her back on the antineoplaston that she can still have a fighting chance to beat this tumour into submission.  Ever hopeful and always praying...

Best wishes to all,


1 comment:

  1. Aloha Supatra and family.

    Please know that we are and will be praying for you guys from Maui.

    Lots of love from Bianco family