Sunday, 27 November 2011

27 Nov 11

Hello everyone,

This last Thursday's Christmas shopping evening at Supatra's school was a big success and raised 611.14 pounds!  Thank you to all the businesses that set up stalls and donated items for the raffles and thank you to all the people that made this happen and those that spent some money.  Me and Punny had intended to go but when our friends arrived to drop off a turkey Thanksgiving dinner we forgot all about it - so sorry as we did want to show our faces and let Supatra look around for some Christmas gifts.  We will definitely come out for the Santa's Grotto scheduled for 3 December at the Milton Country Park's 'The Wild Place'. 

Supatra managed to attend school for 1.30 hours on Friday and she loved every minute of it!  We got some lovely feed back from parents who's children excitedly reported to them of Supatra's appearance.  We will try to get her to attend school again tomorrow however, she musty go to the dentist first.  Supatra's two front teeth have been wobbly for the last 3-4 months and it looks like the new teeth are pushing them up and outwards and the gums are not looking very good.  On Saturday she actually lost one of them and I hear the tooth fairy was very generous to her last night...only one more to go!  If we finish with the dentist in time then she can at least attend the lunch hour at school with her schoolmates.  Then in the afternoon its off to Addenbrookes to get her left eye checked as during her last fits seizures she did irritate it quite a bit.  Supatra will also be participating in the school play and she will make the opening announcement in her new beautiful purple dress that Nikki and Ben from Houston, Texas gave to her as a gift.  She tried it on this weekend and it looks beautiful on her and fits perfectly...thanks Nikki. 

On Saturday evening Punny's sister and Buddhist monk arrived in England for the first time and they looked very cold!  Today we set-up a little prayer area in our home and the monk conducted a blessing ceremony for the whole family and a special prayer and blessing session for Supatra.  Its too bad they can not speak English and I can not speak Thai as it would be nice to talk to them without Punny having to interpret.  They will stay with us for only two weeks and are flying back to Thailand on 10 December.  At around the same time I hope that my mom will arrive and stay with us through the holidays.  So a busy household but all good for us. 

Supatra is still doing very well.  She managed school very well, has been reading books to herself (something she has not done for several months) and playing by herself and with Jason.  She is definitely back to her normal self, as normal as that can be with the long term tumour symptoms still there.  On Tuesday we will start her back on the antineoplaston treatment at a very small dose and take three weeks to reach her target dose on around 18 December.  I am keeping my fingers crossed that going back on at this slow pace will result in her body excepting it much better and be in a good state as we approach Christmas day and onwards.

Our spirits are high again and our hope remains.

Best wishes to all,


Thursday, 24 November 2011

24 Nov 11

Hello everyone and a happy Thanksgiving to all our American friends on the continent and here in the UK.

Supatra is back to normal again and has been doing very well since yesterday.  Of course she is still off the antineoplaston treatment and also her steroids but we intend to re-start her treatment next week.  We would like her to recover a little more before putting her back on the treatment thereby hopefully achieving a more successful result and longer period on the antineoplastons.  We continue to be concerned about staying off the treatment too long as this could result in the tumour starting to grow again.  Supatra is eating, talking, laughing and playing like she normally does and we are very happy to have her back again.  We have also discussed our options with the Burzynski clinic doctors and we have the green light to start her back on the antineoplaston treatment on Tuesday 29 November.  In order to be extra cautious we will re-start her treatment as if for the first time at an extremely low dose of 10cc for the AS-10 and 5cc for the AS2-1.  Then the AS-10 will be increased each day by 10cc and the AS2-1 by 5cc every three days, until we reach the target doses.  We hope Supatra will cope with this approach as she did while in Houston.

Supatra has had an opportunity to visit the Milton hospice a couple of times over the last week and we will continue to take her there on a fairly regular basis so that she can get to know the carers.  The hospice is an excellent place, although the reason for being there is not.  The carers are exceptional people doing a difficult job but do it with compassion and big smiles - thank you.  Supatra is also very eager to go back to school, however, that will only be possible on occasion and only for short periods of time.  We are hoping that she will be well enough to participate in this years school Christmas play with all her classmates. I can't wait to see her up there on the stage again.  Today we had a visit from my friend and Commanding Officer, Joe Huibsch and his beautiful wife Polly, bring us a Thanksgiving turkey dinner with all the trimmings.  The dinner was delicious and I thank them for doing this on their holiday evening.  Not withstanding the dinner it was also nice to enjoy a few beers with someone; something I don't get to do very often anymore.

This week was a big week for us on the fundraising front as well, as we finally had some press coverage about Supatra's plight in the Cambridge News newspaper on 23 Nov 11.  We hope this will broaden the donor base as I know our friends, co-workers and local community have contributed the most to our cause and me and Punny are very conscious of that.  We are hoping that through this story and those to follow we will get more people involved in fundraising on our behalf to help us keep this treatment going for Supatra.  The Cambridge News has already indicated that they may want to do a follow-up story closer to Christmas and we will try to forewarn everyone when it is to be published.  We will also be mentioned in a leading UK magazine 'Take a Break' in relation to Supatra's friendship with Billie Bainbridge, a five year old girl also suffering from a DIPG brain tumour.  Hopefully this will also raise Supatra's profile a bit.  We also intend to produce some blank cards using images drawn by Supatra and hope to have these available before Christmas.  Last, my most favourite Aunt in the whole world took up a collection for Supatra and raised a huge 418.24 pounds!  Love you Erika.

It's amazing how our emotions are swinging from low to high so quickly and so often as we continue down this journey.  One minute you think you are about to lose your baby girl and the next she is doing just great.  But we are feeling very lucky indeed that Supatra is doing so well again as we look forward to spending the Christmas holidays with her - her favourite time of year.  Then it is only a short three months after Christmas and it will be another milestone - her seventh birthday!  As Punny said today in the car, 'this is the longest year of my life'  and it truly does feel that way.  Thanks again to all the positive messages of support and your prayers.

Aloha to Olivia and the Bianco family!

All the best,


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,


Sunday, 20 November 2011

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!


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,


Sunday, 13 November 2011

13 Nov 11

Hello all,

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.

Best wishes,

Jorg, Punny, Supatra & Jason

Wednesday, 9 November 2011

9 Nov 11

Hello everyone.  Supatra is continuing along with her treatment regimen but is not doing that good due to the treatment.  She is now the same as she was the last week in Houston, very lethargic, non-engaging, and weak.  Over the last few days she has stopped eating and only nibbles from time to time.  It has been a week since we took her off the steroids and I think the lack of appetite is a combination of coming off the steroids and the copious amounts of water she needs to drink with her treatment.  The doctors have not yet suggested lowering the dose although me and Punny think that is what needs to happen.  The last two blood works show her potassium dropping (making her more lethargic and overall sleepy) and her uric acid (indicates tumour breakdown, which can result in increased pressure within the brain) and sodium (which can elevate pressure within her brain) levels increasing.  The high uric acid is good news because it means the tumour is reacting to the treatment although she must now take a drug to help lower it.  The high sodium although not at max is a problem and we will have to watch this closely and ensure we strictly monitor her sodium intake through food.  We will also have to increased her potassium supplement to get that balanced as well which will hopefully result in her being less tired.  We really do not want her to go back on steroids as I think it is causing more problems (loss of body fat and atrophy of the muscles) then it solves over the long haul.  Unfortunately Supatra also caught a cold from her little brother Jason as well. Poor thing!

I have added some additional links of stories from the children we have met while at the Burzynski clinic and who are all still undergoing the antineoplaston treatment like Supatra.  Please look under the links section on the left.  Olivia and her family are from Maui and Olivia is doing much better then when we last saw her - well done Olivia!  Billie and her family are from Exeter and she seems to be doing very well as well.  We wish her and the family all the best.  Luna and family is from the London area and is also having a hard time on the treatment. Last is Joseph and his family who are from Louisiana and I know he is doing very well as he is the boy whose tumour shrunk by 95% after only a month on the treatment.  Wish all you guys and gals the best in your journey down this terrible cancer road.

I also want to wish everyone good luck to those attending tomorrow nights pub quiz night at the Milton White Horse raising money on Supatra's behalf.

Best wishes to all,


Saturday, 5 November 2011

Fundraising Info

It has been a very good week for fund raising by all of our friends and my co-workers at RAF Molesworth.  Several weeks ago (sorry I forgot to get the date and location details) Alex, daughter of Lucrecia from work, ran a half marathon on behalf of Supatra and raised a whopping 626.00 pounds for her!  Awesome job Alex and really heart warming to know that you not knowing Supatra or our family would do this for us.  I heard from your mom that you finished in excellent time and that you are a natural athlete.  She also tells me that you did not even train for the event - I am impressed (because I would have died after the 4 mile mark :)).  Hopefully I can get some photos and will post them here in the future.

Additionally, my fellow Canadian Forces members whom I work with at Molesworth also helped raise funds with their their spouses organizing a bake sale at work this last Friday.  I understand that numerous other spouses from IFC members helped out by providing baked goods and the spread of snacks was outstanding (I did get to eat a few of them!).  In the space of a few hours everything was sold out and a tremendous $1,058.51USD was raised!  Thank you to all those at the IFC that bought some cakes, pastries, cupcakes, and cookies - I hope your not feeling too guilty for eating so much but my family thanks you for your continued support.  I would also like to thank the organizers and servers, Elisa, Sandra, and Louise for their hard work.  If others were involved and not mentioned here, I do apologize and thank you as well.  To be quite honest I wish we could hold these every Friday - not for the money - but because I love eating baked goods so much, hmmmm.  Maybe some of you could cook me a cake sometime...maybe, eh?....please?


Our local fundraising committee made up of Katy, Lucy, Chris and Michelle, Dave and Natalie, Lorraine, Rachel, Sarah, Nicola, Karen, Helen, Mie, and Mrs. Kirby is doing a great job of coming up with fundraising ideas and organizing the events.  Natalie and Michelle are also in need of some more raffle prizes so if you can help with this or anything else regarding their fundraising efforts you can contact them by email at:  Some of the upcoming events are listed below so please have a look and come out to the events. 

Thursday 10 November 2011 - Quiz Night

Location: Milton White Horse Pub, 20-22 High Street, Milton CB4 6AJ
Quiz game starts at 9pm and teams of up to seven players can enter, GBP3.00 fee per person.  There will also be a raffle taking place during the evening.  This will be a fun evening of laughter and copious amounts of beer and spirits!

Friday 11 November 2011 - Cambridge United FC Bucket Collection

Location: Cambridge Abbey Stadium, Newmarket Road, CB5 8LN
Cambridge United vs Wrexham (go Cambridge!)
Several parents and children will be rattling buckets in the stands to collect funds for Supatra.  Please come out and watch some exciting football, have a beer and enjoy the game.

Saturday 12 November 2011 - Colts Football Bucket Collection

Location: Milton football field behind Tesco
6 teams will be playing matches between 10am -1230pm
Several parents and children will be rattling buckets in the stands to collect funds for Supatra.  The Milton FC is an outstanding organization and the Colts are leading in their league.  Come out and watch some exciting football and enjoy the morning.

A big thank you to the Milton FC for allowing us to do this and for donating 500.00 pounds to Supatra.

Thursday 24 November 2011 - Christmas Shopping Evening

Location: Milton CE Primary School, Humphries Way, Milton, CB24 6DL
Open from 7.30pm to 9.30pm.  There will be a wide variety of stalls providing lots of ideas for Christmas gifts.  Refreshments will be on hand, a raffle and mini spa treatments including head massages and reflexology.  This should be a fun evening for adults and kids alike so come along and start shopping for Christmas...come on, we know you want you!

Stalls: Antique bronze, silver & costume jewellery; sweets & chocolate; cards & stationary; hand crafted items; photographs; books; cakes & cooking equipment and much more!

Saturday 3 December 2011 - Santa's Grotto

Location: The Wild Place, Milton Country Park
This is a special children's event filled with activities and a chance to meet with Santa and will take place from 9.30am to 4pm.  Pre-booked sessions are available for if you wish by contacting Lorraine at 01223-700-636.  Alternatively, tickets can be purchased at the Milton Country Park Visitors Centre Cafe Diem.  Groups will meet in the room above the Cafe Diem in the Visitors Centre for small craft activity before being taken in groups of 10 children to meet Father Christmas in the Wild Place.  Here they will sit around the camp fire, meet and have short chats with Father Christmas before receiving a small gift and leaving.

There will also be a sweat stall and hopefully some mulled wine.  The organizers also hope to be able to have some carol singing for some of the time.  Some details of this event are still be worked on and more info will follow in the coming weeks.


Celebrity Auction

Donated goods from celebrities are being gathered ready for an internet/Ebay auction.  If you have something you wish to donate please contact Michelle or Natalie at

Cambridge United Football Stadium Bucket Collection 2012

Date and details still to be arranged.

There are also many proposed fundraising ideas that the committee has in mind for 2012 and which will be advertised when ready.  The committee has come up with some terrific ideas and a great mixture of adult and children's entertainment that I hope will be enjoyable for all.  Thank you again to everyone who is helping out with these events as I know that some require a great deal of your time and energy.  I hope that those reading the blog will also help propagate the information and that we get a large turn-out for them all - lets see if we can get too many people to show up for these!

I also ask that you check back from time to time to see what new events are coming up. 

Many thanks to all.


30 Oct - 4 Nov 11

Everyone is probably wondering if we would ever post again, eh?  Well, its been another busy week since our return and it seems to be even harder to keep the blog up to date now that we have returned to the UK.  We are struggling to find a workable battle rhythm that will allow us to finish preparing the next days antineoplaston bags while also allowing Punny and the kids the ability to wake up at a normal time in the mornings.  With me now back at work it is Punny who must take the brunt of the work load that we shared so well in Houston.  It is hard to put it into words the little extras that seems to chew up our time but certainly Supatra requires much more supervision and care then before the treatment.  Both me and Punny have little to no time to relax anymore and our nights, after feeding and putting the kids to bed are filled with preparing the next days IV bags.

On Monday, Supatra got her wish to go trick or treating with her close friends at RAF Lakenheath and I think she really enjoyed it even though for parts of it she had to trick or treat from the push chair.  Jason certainly didn't mind, as long as people were throwing candies in his pumpkin bucket while sitting in the push chair he was happy.  I think he ate 4-5 chocolate bars before we noticed him doing so and finely had to take his candies away from him.  Now Jason is constantly craving for chocolate!  Supatra was dressed as a beautiful butterfly and enjoyed some of the spooky decorations; some quite elaborate as well. 

As stated before, Supatra needs to have her blood taken every Monday, Wednesday and Friday to monitor her health while on the treatment.  With the blood being shipped to a London lab we do not get the results until the next day and on Tuesday we were told that Supatra's white blood cell (WBC) count was very low.  WBC is what drives your immunity system and having a low WBC count means that Supatra is susceptible to infections.  Supatra's WBC has always been quite low but it has even dropped further than her 'normal' level.  It is a concern and we are watching her closely to make sure no other symptoms occur.  On Wednesday 2 Nov, we also had our first Addenbrookes Hospital oncologist appointment since returning from the USA and they also told us that should Supatra start to feel poorly or run a fever that she would need to be admitted right away and would need to come off her antineoplaston treatment until she recovered from whatever might be afflicting her. Wednesday's blood work showed a slight rebound in the WBC count but there are also other elements within the blood that are down as well.  Today's blood results have not yet arrived and we should see those tomorrow; hopefully things will be getting back to normal soon.  The doctors believe that the low blood counts might be due to her restarting the treatment on a full dose and it is therefore having a dilutive affect on her blood.  If so then she should bounce back and normalize again soon.  So far we have noticed no other symptoms and she says she feels fine.  As well, this week saw her develop a slight rash on her legs and arms which can be associated with antineoplaston treatment.  Additionally, on Wednesday we stopped her low steroid doses as we do not think she needs to keep taking it right now.  Her appetite has already started to drop off and we are hoping that she does not stop eating altogether as that would just add to her woes.

The Wednesday oncologist appointment was rather disappointing as they continued to insist that they could not support any of our medical requests like blood work and MRI scans which are associated with the treatment regiment.  So much for the NHS.  I certainly hope our system in Canada will not treat us the same. 

We also had a meeting with Supatra's head teacher to discuss her coming back to school and she was very supportive although we will have to arrange for the specialist nurse to visit the school again and explain to the kids about Supatra's tubes and medicine pump.  We will also be required to draft up a detailed contingency plan for any eventuality.  We agreed that once these things are ready we would try to have Supatra attend school in the afternoon for an hour or so to see how it goes.  We also suggested that Punny might be able to stay with her while in school to help her get to the bathroom and carry her backpack and therefore be less disruptive to the class.  I think in the end we will have to source a tutor and look at doing some home schooling for her as well.

Tonight we took her to her school to watch the annual 'Burns Night' fireworks, which were great as usual.  Supatra seemed quite perky around her friends, put her backpack on and ran around for a while.  Supatra also got to see Ms. Kirby, her former year one teacher which really please Supatra.  Thanks Ms. Kirby for being such a good friend and excellent teacher to Supatra.  While we are at it, we should also thank Angelina for making copious amounts of excellent and tasty foods for us.  I think it pretty well saved us from cooking all week :)

There has also been lots of news on the fundraising front but I think I will save that for another entry, hopefully this weekend as it is getting past my bedtime.  I will endeavour to post at least twice a week in the future so that these posts are not too long next time.  Have a good night and enjoyable weekend.

Best wishes to Olivia, Luna, Joseph, Leyel and Billie; hope you are all doing well and on the road to full recovery.

Jorg, Punny, Supatra & Jason