30 Dec 11

Happy New Year everyone!

We continue to enjoy our relaxing holiday time at home with periodic day trips out.  Supatra is doing very well and is already sad that Christmas has come and gone.  However, today she started talking about Valentine's Day and she has already started to make some valentine cards!  Always way ahead of us and I am sure she will start wrapping Christmas presents early in the new year as she did this last year.  She was very happy to receive numerous gifts from Santa that were on her Santa's wish list and is enjoying playing with her sleeping time Annabelle baby and lite sprites.  Jason received his sister's old Thomas the train set that Supatra has not played with for years and he has not stopped playing with it other then to play with his new cars.  Cars and trains, that's all he has on his brain!  On 28 Dec 11, I took Supatra to London with grandma and we went to the Museum of Nature and then skating which was set-up on the museum grounds.  Unfortunately, our camera ran out of batteries after a few not so great pics and had to resort to using the iPhone which also did not take great pics.  However, below are a few of them anyways.

 

 

I was really surprised at how well Supatra skated considering it has been a year since her last time and of course her balance issues this year.  Although not quite skating on her own this first time she did really well with her barely holding on to my fingers as we went around the rink.  I definitely want to take her again but probably somewhere closer like Peterborough maybe.  Supatra has also been busy writing a story book, sewing, and doing general arts and craft stuff.

We want to take this opportunity to say Happy New Year to everyone and thank you for all the support over this arduous last year.  We are ever hopeful that this treatment will continue to keep our angel around for many more enjoyable moments and we are so looking forward to throwing her a big birthday party this year.

Please keep spreading the word about Supatra's need for help in order for her to continue this cancer treatment.

All the best to you and your families in the new year.

Jorg

24 Dec 11

Hello Everyone,

Just to let you know Supatra is doing fine and she is getting really excited about Christmas.  Today she put her gifts under the tree, which she wrapped back in March-April already.  She really does like to do things early!  Tonight we will enjoy a nice dinner at a friends house and tomorrow some other friends are bringing dinner to our house so we are being looked after very well indeed by the great friends that we have.

We wish everyone a very Merry Christmas!

Jorg

18 Dec 11

Hello everyone,

Again I have missed my own imposed scheduling for posting on this blog but today I have some time.  One of the reasons for not posting over the last week has been because Supatra is doing really great.  She has fully recovered from her November set-backs and seems to be taking the antineoplaston treatment well; however, not without some side affects.  We have been hesitant to increase her dosages too fast, i.e. at the normal recommended speed and have requested numerous times of the Burzynski doctors that we stay at a certain dosage level for a few days before then increasing again.  In each case they have been very supportive in this process and have agreed with our approach.  Since early December Supatra has been complaining of sensitive skin and pain around her buttocks and upper legs and then around 8-9th December she started to get a rash composed of mosquito sized red spots on her arms and legs.  We have seen these before and knew these were a side affect of the treatment.  In response to this rash we kept the dose level as is for several days and then as an extra precaution we decreased bag 2 by one increment level which then seemed to clear up the rash.  We are not sure the cause of the pain she is feeling when she walks but she did have a check-up with her oncologist and she thinks it may be steroid related.  The oncologist told us that prolonged steroid use can have a negative affect on bone joints as well as muscle wasting.  Supatra has not been on steroids since 24 Nov 11 but she has had so many cycles since diagnosis that it is starting to affect her much more each time she needs to resume the drug.  Then later this week she felt much better and the last four days she has felt no pain nor sensitive skin.  However, as of today the sensitivity and pian is back albight at a much lower level.  Her Haemoglublin (HG) level also bounced back somewhat a couple of days after the drop.  It is still a little lower then normal but not that much and we have been told it can take some time to recover HG levels.  Otherwise Supatra has been well and very active attending school almost everyday since the last time I posted for 2-3 hours at a time.  On 6th and 7th December she also participated in the much awaited school Christmas play called A Little Fir Tree.  It was a wonderful play with lots of singing, which we really liked.  Supatra got to introduce the play and did so in a superb loud and clear voice and she also participated in the group songs.  We also went to the Milton All Saints Church for a an afternoon of arts and crafts making Christmas decorations. 

 

On 14 December, my mother also arrived from Canada for the holiday period and she will be a great help to us as she always is.  The kids love Oma (German word for Gandmother) and enjoy the extra attention they get not to mention all the nice little gifts she brings them.  We are looking forward to this Christmas, being that much more special with Supatra around and we look forward to her 7th birthday in March.  Most Christmas shopping has been completed but I will need to make a few more trips as some toys were out of stock.  This year we are only buying gifts for the kids, mainly Supatra and Jason's big gift will be a Thomas train set that we bought for Supatra several years back but that she rarely played with.  We will stay close to home and I am hoping that Cambridge will be opening a skating rink this year again as Supatra would really love to go skating again and I think it is time Jason got a taste of it as well.  I will post again before Christmas so for now, all the best to everyone....HO HO HO!

Jorg

P.S. I never got around to uploading pictures of previous events as I had promised but will endeavour to do so over the Christmas break.  Most if not all will be posted under the picture gallery tab.  Second, further enhancements will be made to the site in the new year to include a fundraising target and running tally of the total amount raised by all of you.

8 Dec 11

Hello everyone,

Another busy week is flying by with lots of family activities at home and several outings.  We, of course took Supatra to the Santa's Grotto on 3 Dec at the Milton Country Park and had a great time.  It was especially nice to see all our friends lots of the fundraising committee members, some of whom I had not even met before, and all of the children, many of whom Supatra knows.  On 4th Dec Supatra went to Oli's birthday party which was a movie and then some food.  Supatra has also been going to school almost every day for at least a few hours at a time and she is really enjoying this.  On 6th Dec we went to my office Christmas party and also had a lovely time with Santa making a surprise visit as well. 

Supatra was continuing with the treatment up until Tuesday, 6th Dec when we received her blood results that showed a low Haemoglobin count and we were advised by the clinic to cease treatment until we could get another lab result that would confirm this drop or discount it as a bad blood sample.  A low haemoglobin count means that she has become anaemic at least for the short term and which can be a side affect of the antineoplaston treatment.  We are worried that this will again cause a lengthy delay in her continued treatment although Wednesday's lab results showed a small rebound in her levels.  After these last results the clinic gave us the go ahead to continue with the treatment today.  Tomorrow is another blood draw and we will be anxiously waiting to see if her haemoglobin levels are continuing back up to normal levels.  Of course if it does not then we might be asked to stop the treatment again.  Supatra looks fine and in fact looks better than she has in quite some time.  She has also had no other symptoms, her left eye seems to be getting better, and she continues to be quite energetic.  We forever have our fingers crossed that she will continue to be fine over the holiday period and be able to continue to take her treatment. 

This Saturday we will be saying good-bye to Punny's sister and family friend, which I am sure will be a sad moment for her and the kids.  It has been a great visit and I always love to have her sister around as she is quite the comedian - I just wish I could speak Thai so that I would know what she is constantly saying about me :)  Then later next week we welcome my mother as she starts her visit with us over the holidays.

Best wishes to all,

Jorg

Santa's Grotto Sold Out

Sorry folks but the fundraisers have informed me that the Santa's Grotto for tomorrow at Milton Country park is now sold out!

Thank you to everyone who purchased a ticket and see you there.

Jorg

1 Dec 11

Supatra continues to do very well and has now been back on treatment for three days at a low dose.  She is still off her steroids since 22 Nov 11 and it looks like her walking over the last few weeks has improved in that she does not walk with such a wide gait as she did before because of her balance issues.  The only thing still bothering her from her last episodes is her left eye in which she has little to no feeling and because of this aggravated the eyeball when she had her fits.  But it is slowly getting better and we are using several different eye drops and creams to over come this and she occasionally will wear a patch.  We are very happy that she is now well and we have taken her to school for some short spells.  Today she got to do her Christmas shopping for her family at school and already has the presents wrapped.  I can't wait to see what she got me and I might just have to sneak in her room to shake the box. :)  Tomorrow she will attend school again in between her infusion cycles and practise introducing the school Christmas play which she will have to do a few times in front of a large audience next week.

For those following this blog, don't forget to check the Events page as this Saturday, 03 Dec 11 is the Santa's Grotto at the Milton Country Park.  If you don't have tickets come anyways as there may be some to be had at the Cafe Diem in the park's Visitor Centre.  On Tuesday evening we were also invited to the Cambridge United Football Club game against Bath City (they tied 1:1) to be presented with a check for 494.71 pounds that was raised back on 11 Nov 11 by our friends.  Thank you to all the fans that gave that day, the Cambridge United FC for their support and specifically to Stuart Wood for taking care of us and Player Rory McAuley for presenting the check to Supatra.

As well, a big thank you to members of 2 Int Coy in Toronto and their CO, Major Phil Nicholson for raising 1,000.00 pounds on Supatra's behalf.  I am especially proud of you guys and gals for doing this and I miss being in Toronto with you.  I am sure the LFCA J2 section chipped in as well, so thank you to you.  I have also been told by my mother that her company Thrifty Foods has increased/matched the donations made from their hotdog sale a while ago for a total combined donation of $2,000.00.  Thank you so much. 

All the best wishes to Joseph (USA), Luna (London), Olivia (Maui), Leyel (Dubai), Billie (Exeter) and their wonderful families.  Hope you all enjoy the upcoming Christmas season as much as possible.

Jorg

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,

Jorg

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,

Jorg

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,

Jorg

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

14 Nov 11

Hello,

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,

Jorg

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

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,

Jorg

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?

UPCOMING FUNDRAISERS

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: supatrasfund@gmail.com.  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.

PLANNED FUTURE EVENTS

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 supatrasfund@gmail.com.

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.

Jorg

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

No place like home!

Well, its been a busy week again for us.  Since the last update on Sunday 23rd October we have been preparing for our flight home which was on Wednesday 26 October.  On Monday, 24 October Supatra had her MRI done and like the previous ones she was a real pro not moving an inch and actually sleeping through the entire 45 min procedure.  The technician was very impressed and said her images came out crystal clear because she did not move at all.  The rest of the day we continued packing for our return trip all the time wondering how we would fit everything into our bags.  Its amazing how much extra stuff you can accumulate in just two months; mind you we did have to buy numerous toys for the kids to keep them happy.  Tuesday was tied up with seeing the Burzynski doctors to discuss a few issues and find out the MRI results.  Happy, happy, happy news, Supatra's tumour has shrunk a little.  It was not a dramatic shrinkage and they could not yet give us a percentage as the radiologist had not finalized the report but shrinkage nevertheless.  Compared to the last MRI measurements, I figure at least 10% reduction in size.  We got to sit with the radiologist and see the images and discuss the results as well.  As of today I still have not received the final scan report and sent them a reminder that we are waiting for it.  We are very happy considering over the last few days we were getting worried about Supatra as she seemed out of it, tired, lethargic, and just not herself.  We found out at the meeting that it was her sodium level that was high and likely the cause.  The doctors told us to take her off treatment, which we were about to do anyways for the trip and await the next blood results before they would determine whether or not she could go back on the treatment.  We also picked up our initial supplies of medical equipment and antineoplastons to take with us on the flight home.

We are feeling so relieved knowing that the treatment is working for Supatra.  At around the same time we also heard news about a boy named Joseph whom we met at the clinic and who started treatment after Supatra.  Joseph is from Louisiana, five years old and has Glioblastoma multiforme (GBM) brain tumour.  His parents decided not to go with the regular medical treatments as they did not like the side affects and were not given much hope by the doctors.  Therefore they took him straight to the Burzynski clinic for antineoplaston treatment.  Well, only about 3-4 weeks into the treatment after they had gone home they noticed that Joseph's symptoms were going away and wanted to know what was happening to him so they took him for an MRI earlier then required and to their great surprise and joy were told the tumour had shrunk by 95%!  After only a few weeks of treatment on antineoplastons. WOW! We are so happy for them and wish them all the best.

Wednesday's travel home went very well; better then expected, thanks to Lorna Pyke who helped us out by smoothing the waters with British Airways (BA).  Lorna talked to the ground crew at Houston and Heathrow airports and the flight aircrew which proved to be very beneficial.  The Houston ground crew were very helpful and did not fuss about our excess luggage nor weight.  They also upgraded us from economy to the next level and let us use the BA club lounge which really made a big difference to the way we usually travel.  When we arrived on board the crew knew who we were and were ever so helpful to us and so kind to Supatra.  When we were settled in the crew had two available seats in club class (the individual reclining seats) and let Supatra and Punny sit there while me and Jason stayed in what I think is called executive class.  It was a very good flight and we are ever so grateful to the Houston ground crew and flight crew for their kindness and service.  Last, a big thank you to Lorna for helping us out and making it a hassel free trip home.

We arrived home around noon Thursday and pretty much just did some unpacking and slept as we were all tired (Jason did not sleep much on the flight and kept us busy).  Since being home we have done allot of sleeping and just getting re-acquainted with our house and big kitchen which we missed so much.  Of course our friends were great again and left us some welcome home presents for us and the kids (thanks Mie and Nat). 

On Friday we also had our first appointment with our new doctor and we drew some blood there for him to send off for analysis.  Today, Saturday, we received the results and not surprisingly Supatra's sodium level has come back down, considering she had been off treatment for the last three plus days.  Today we were allowed to resume treatment at half dose for today and we are then to go back to a full dose the next day.  Hopefully we can keep her sodium levels in check or else the doctors may decide to reduce her treatment dose, which is not what we want.

All in all, everything is good; we are home; we are happy with Supatra's progress and we look forward to getting our daily lives back to normal as soon as possible.  Supatra is of course eager to get back to school but we still need to discuss the options with her head teacher as it will be difficult for her in school attached to her pump and IV bags.  Jason is extremely happy and has not stopped playing with all his toy cars that he missed so much.

Best wishes to all,

Jorg & family

Fundraising

A while back I promised to provide an update to our fundraising efforts so far and therefore this post will try to do that.  I would first like to say thank you again to all those that have helped us in the UK and in Canada.  Our UK friends have been exceptional in pulling together and giving freely of their time and money in order to help us with Supatra's treatment.  The support in the UK has not only been from UK citizens but from my co-workers at my unit who happen to be from all over Europe and North America.  In Canada,the fundraising efforts are just getting started by family members and my extended military family.  I am blessed to be part of a great military organization and team - E Tenebris Lux!

To date you have raised approx. $17,500  USD for us!  Wow!  And in only a little over two months.  Great job, great effort by all.  This will provide at least two plus months of treatment for Supatra.  This is a fantastic amount and it really warms our hearts knowing you care about us and my little Supatra.  Thank you so much to everyone.

The other day my mom called to tell me of her co-workers efforts to raise funds on behalf of Supatra and it just made me feel so good knowing that these strangers were willing to put in this effort but also their valuable time to help us.  My mother works at a Victoria British Columbia grocery store in Fairview Plaza called Thrifty's and her store manager, Jim Fuller offered to do a hot dog sale this last Saturday.  Mr. Fuller and other staff members came in on their day off and on a day with non-stop rain to cook and sell hotdogs for the benefit of Supatra.  Their tally for the day was approx. $800!  A very big thank you to these strangers that went the extra mile to help a family in need.

Every little bit helps and these individual contributions and those from fund raising events like the recent bake sale at Supatra's school, which raised over 850 pounds to this more recent hotdog sale are making a big difference.  We have also had some large donations from individuals whom I am not at liberty to mention by name but also deserve a huge thank you and hug from all of us.  However, soon we hope to kick off a bigger campaign to have Supatra's story told in a national UK magazine and in some local newspapers as well and therefore we hope that not only larger donors will come forth but that by spreading the word further a field more individual donations will also appear. 

Additionally, as we plan for future events it will be our intention to advertise them here on this blog and whenever possible provide some pictures as well. 

It is also worth repeating every once in a while that any funds not used should Supatra have to stop her treatment(s) will be further donated and spread amongst several UK cancer charities that have assisted us and also a charity that is directly involved in helping fund brain cancer research.  Further details will be advertised when that time is upon us.

Thank you to our English friends and thank you to our Canadian friends and family.

Best wishes to all,

Jorg

Going Home

Apologies for not blogging over the last few days as I truly had meant to do but there is always so much to do and by the time the kids are asleep the only thing I want to do is unwind in front of the TV for an hour before falling asleep myself. 

This last Tuesday we awaited with baited breath the results of the Burzynski staff meeting that would determine whether or not we would need to have this FDA form 1572 signed.  We did not receive any messages nor emails and so on Wednesday I went to the clinic as I had other business to discuss hoping to get an answer.  Surprisingly, the answer was that we would not need to have this form signed by a doctor in the UK although we had secured a private doctor that did sign anyways.  Of course the not surprising thing is that no one decided it was important enough to pass this announcement on to those of us who have been stuck in Houston for weeks because of this requirement.  Typical poor doctor to patient communication.  Thursday 20 Oct, we booked our British Airlines flight from Houston to London for Wednesday 26 Oct and we managed to get a pretty good price at that.  All told it will cost us $1902 for the family but the bad news is that BA only allows one checked bag per passenger on an international flight (unless you pay more) whereas most big airlines still allow you two bags each.  I have submitted an email to customer relations hoping that they will wave any excess baggage fees as we will have 4-5 bags and several boxes of medical supplies.  I hope they do, as we were told by the other two UK couples, the Bainbridge and Petagine's that their fees were waved.  The Bainbridge's and Petagine's flew home on Thursday and we wish them all the best and hope that we may one day be able to get together again.  I hope all goes well for their daughters Billie and Luna as they continue down their long journey of recovery and better health.  Although Billie and Supatra did not know each other that well, Supatra felt sad that Billie was leaving.  I think Supatra, like me and Punny, feel like we are always being left behind as families that arrived at the clinic after us leave before us.  Supatra misses home so much and I think her spirits will be much better when back in the UK and close to her school friends.

Yesterday we went to an amusement park in Kemah, Texas, just south of Houston on the coast.  We left the house a little late so we only managed a few rides and some supper before heading back home.  We also took Supatra off her steroids three days ago and since then has been very lethargic, tired and is sleeping a lot.  She has had no other side affects for two weeks now and so we believe that this might be to steroid dependency and a side affect of stopping the medication.  However, today she is really tired and does not seem herself and after speaking to the on-call doctor decided to put her back on a very small dose to see what will happen.  If she does not snap out of it I will increase her dose tomorrow after speaking with the doctor as I think we would need to put her on a larger dosage come Tuesday to prepare her for the flight home.  She will not be allowed to take her antineoplastons while flying and the side affects of being taken off of the antineoplastons all of a sudden can be vomiting and headaches.  Therefore, in order to reduce these affects we will reduce her antineoplaston dose by half for the Tuesday afternoon and evening dose and then take her off the treatment until we arrive home.  Then we have been told to put her back on the treatment starting with a half dose for the first day and then back to her full treatment amount if there are no side effects. I just hope she does not feel poorly on Wednesday as I would hate to see her like that when not in the comfort of our own home.  It will be a long travel day and night and I am sure we will all be very tired when we arrive in the UK. 

On Monday I have arranged an MRI scan for Supatra, her first since being on the treatment.  Please put in an extra prayer in that her tumour is getting destroyed and positively reacting to the treatment.  I originally had hoped to get her the appointment in Austin Texas at a clinic that was only going to charge us $1088 compared to the almost $5000 we paid here in Houston; however, they were booked up and so I called another Austin place and they quoted me $1500, still very good compared to the first time.  But I decided to search the Houston area again as I could not believe that Houston with all its medical facilities can not have a cheaper MRI price.  I lucked out and found one not too far from where we are staying and they will only charge us $750!!  I could not believe it and asked several times if there would be any additional hidden costs and they said no.  Now why could the Burzynski clinic not come up with this place for caregivers and patients?  I just can't believe we were sent to one of the most expensive places in Houston to do and MRI when we could have saved a bundle going to this place....sigh!  Anyways, we wanted to do it here if comparable to UK prices so that we would not be rushed into finding and booking an MRI in the UK immediately on our return.  This will give us some breathing room and let us settle back in at home, meet the doctors again and determine the best course of action with regard to supporting Supatra's medical needs while on this treatment.  One of my key worries now is finding the best method of getting Supatra's blood analyized in a speedy manner as the NHS is too slow unless they can do stat orders and I am not sure how fast a private lab can get the results back.  The Burzynski clinic needs the results on the day they are ordered, i.e. Monday, Tuesday, and Fridays so that the Burzynski doctors can determine whether any adjustments need to be made to the treatment protocol.  One good aspect is that the time difference will work in our favour.

Tomorrow, if Supatra feels better we will take her to the beach again as she wants to build some more sand castles.  This will likely be our last trip out as Monday and Tuesday look to be fairly busy as we do our final travel preps.

It will be good to be home again....

Best wishes,

Jorg

17 Oct 11

We had a nice weekend and managed to do some activities with the kids and at least for brief moments managed not to think of our doctor issues and Supatra's disease.  On Saturday we traveled to Galvaston Texas about an hour from Houston along the coast to spend some time on the beach.  Jason and Supatra loved it although Supatra was again sad that this time she could not go swimming and couldn't just go running around without having to worry about her catheter, tubes, and backpack full of medicine.  I feel so sorry for her and can only attempt to comfort her by telling her that soon when she starts to get better she will be able to do all these things again.  Its the same when we go to the malls and see kids skating on the ice rinks.  She wants to go skating again so badly.  On Sunday we went downtown and checked out one of the parks we heard about.  The kids played for some time in the playground and me and Supatra played catch with a small pink ball.  But again there was an area with water spouts coming from the ground where kids can go run and splash and of course Supatra could not as she is not allowed to get her catheter and dressing wet.  Pretty much everywhere we go she sees other kids doing what she used to and is immediately saddened that she can not join in.  I feel so sad for her too. 

Although me and Punny are switching sleeping duties with Supatra every other night we are both getting very tired.  It is becoming harder and harder to wake up in the morning in time to do the IV bag changes.  Everyone just wants to get home.  We want our bigger house, Supatra wants to go to school, see her friends, and be there for Halloween and Jason...well he just misses his toys and the room to run around.

I still can't believe that we are going through all this and that Supatra's recovery is not a given.  Considering its been almost six months if not longer since her symptoms progressed to the point where she is at now and it almost seems normal now while at the same time each day I look at Supatra hoping to see some positive change; a little movement at the left side of her mouth or her left eye lid moving at the same time as her right.  Its the reversing of her left facial palsy symptoms that will make Supatra so happy and would confirm to us that the antineoplastons are working.  I said to Punny the other day that I thought Supatra was walking a little better i.e. not with such a dramatically wide gait but more normal.  I don't know if it is just wishful thinking on my part or if there actually has been a change.  I just pray everyday that Supatra will be one of those few that actually recovers from this tumour, that her life will be full of joy and that she will be able to flash that cute smile of hers at me once again.

Best wishes

Jorg

 

14 Oct 11

Today I had to go to the clinic and ended up meeting another parent from Texas who's daughter was cured of her cancer a few years ago.  The child had cancer of the gland (which one not sure) which then later matasised (Sp?) to other parts of her body.  This cancer was detected at about six months old and instead of doing the standard treatment regimen of chemo and radiotherapy he choose to try Burzynski's antineoplastons.  She was on the treatment for three years and finished it in 2009.  His daughter is now six years old (I met her as well) and enjoying life.  This guy drops into the clinic every once in a while especially if there are children being treated and he and his daughter big gifts and get well cards for the kids and makes himself available to discuss his experience and provide advice.  I spoke with him for a good 30-40 mins and he gave me some valuable info on where to get a cheaper MRI scan, which Supatra will need at the end of this month.  He was a very nice down to earth guy that spoke candidly about his experience.  I also spoke with the Bainbridges about doctor support and they assured me that their doctor that has already signed the FDA form is a paediatric oncologist working for the NHS.  They also stated that as far they know he went through appropriate NHS channels to get the OK for this.  Therefore there should be no reason why other NHS doctors are turning this down.  The difficulty now is to get him to agree to release his contact details that I could then distribute to our doctors in the hope that this would be enough to convince them to support us.  So far he has not yet responded to the Bainbridges request and they of course do not want to push as this might cause second thoughts for whatever reasons we do not know about.

Supatra was in a down mood today and pining to go home to England to see her friends again.  She also does not want to be here for Halloween and would rather go trick or treating with her school friends, Isabel, Oli, Michael, etc.  At one point she was crying in my arms and then did not want to leave the bed.  We had to find something to help cheer her up so we told her we would go to the mall and let her ride on the carousel and play in the play center.  First though, we took her to the doctor to have her ear and nose checked out as she has been complaining of a blocked nose and right ear.  The doctors had to rinse her ear out to reduce the ear wax, which worked, and her nose was better as she managed to unblock it on her own.  When Supatra first underwent radiotherapy and took steroids she developed a repetitive habit of pulling at her lip on one side of her mouth.  When we finally got her to stop that she developed a habit of picking at her left nose which then developed into a sore that would constantly bleed.  We have now finally, I hope, got her to stop that but a few weeks ago she developed a habit of rubbing the corner of her left eye which also started to become a small sore.  Now we are trying to convince her to twirl her hair instead of these other destructive habits.  Supposedly this is normal for kids in her condition as one of the other UK girls has also developed a nasty habit of rubbing at her left eye and the skin around it is bloody and raw from this as well.

After the doctors we then took both Supatra and Jason to the mall as promised before coming home for supper.  Tomorrow we are going to try to go to Galvaston for the day and walk the beach some.  Hopefully, it will be a good trip and the kids will forget their woes.  Below are some pictures of Supatra and Jason playing in the apartment and with Supatra already in her Halloween costume which she has worn for three days now.

We have also heard that Supatra's school, Milton CE Primary, held a bake sale for us with teachers, parents and Supatra's friends and school mates helping out.  I heard from Chris, Michelle and Natalie that it was a great success.  As you can see from the pics below the food looks great and both me and Supatra would have really liked to try the second prize cake and the flag cake :)  Thanks to all those that participated and made it happen with a special thank you to the head teacher, Mrs. Dorrington for all your support.  Supatra would love to be involved in the next bake sale and wants to cook some cakes herself.  She is really getting interested in cooking lately as she helps prepare her meals here.  Supatra gives a shout out to all her friends and misses you all - please pass that along to your kids.

Warm wishes and have a happy weekend all.

Jorg