15 May 12

Hello Everyone,

Again, it has been some time in between posts but there are reasons for that.  First, Supatra’s condition nor  treatment plan is changing much and therefore there is less to update you with.  Second, it is becoming more difficult to find the time to write and keep everyone updated on all the activities we are doing.  We are keeping busy and I could post more regularly with shorter updates as to our activities but finding the time is difficult.  Today I would like to provide a short update on Supatra followed by some important news that not everyone may be aware of.

Since my last update Supatra has remained generally the same health and symptom wise.  Supatra reached her ANP target dose several weeks ago and since then she has become more lethargic and tired which is a known side effect of the ANP treatment.   It is the same symptom she developed about a week after reaching her target dose back in Houston in October.  The good news is that she still has her energetic moments and when engaged in activity that she finds interesting and exciting she can still get herself involved and physically active.  Of course her tiredness really kicks in when she is on her infusions and then gets better during her off times.  Punny continues to take her to school a couple times a week for a few hours each time and we try to either bring her to visit her friends or have them come to our house.  A few weeks ago we had a week long break in Devonshire at the Buckfast Abbey which was provided to us by the Torbay Holiday Helpers Network (THHN).  It was a wonderful time and Supatra and Jason got to spend a few days on the beach although one of those days it was rather cold for Supatra.  We also enjoyed the scenery, caves, and Pennyville Farm.  Supatra managed to ride a pony albeit with a little help and drive her first (electric) car around a track by herself.  Jason also rode an electric quad bike by himself and had fun crashing into things.  We would like to thank everyone at the THHN and especially Mr. Luke Tillen who made it all happen.  All our needs were provided for by local businesses including our accommodations, food, and fees for some of the local attractions.  On the way to Buckfast Abbey we also took the opportunity to meet our friends the Bainbridges’ and have an opportunity for Supatra to see Billie again as the last time they met was in Houston in October 2011.  We also stopped in to see Richard and Chantal, parents of little Amelia who was recently diagnosed with a DIPG tumour and is also undergoing ANP treatment.  We thank them both for their hospitality and wish Amelia and Billie all the best in their battle to beat this disease.

The big news for everyone is that we will be moving back to our home country – Canada in late June of this year.  My employment in the UK was always intended to be temporary and we were lucky enough to get extended for another year when my replacement was not able to come and then get extended again this last year due to more unfortunate circumstances.  We have really enjoyed our time in the UK, for me both at my work and for us as a family because of all the great friends we have made.  Unfortunately, our journey will take us to a new city where we have no friends and I only have a few work acquaintances, so it will be a very difficult move especially for Punny and Supatra.  I think Jason will be fine as long as he has his toy cars and Thomas the train set, all will be good.  But Supatra will miss her school and her many friends terribly and we will have to work hard at getting her settled into her new surroundings and into a new school.  Punny, will also be hard hit as she has so many friends here in the Cambridge area that it will be very hard to match this network of support in Ottawa.  The weeks are flying by fast and it will soon be time for us to hold our farewell party, try to fit in another short vacation in the UK and try a few more fundraisers.  We will be holding a group car boot sale scheduled for the last weekend in May, I believe on Saturday 26 May at the Oakington village site.  We will have lots to sell including some of our UK electric equipment and gadgets that we cannot take with us – so please come out and by some quality used stuff.  I will also still be participating in the London Nightrider cycling event on 9-10^th June with 11 others to raise money for Supatra.  You can donate at our team justgiving link found here:  http://www.justgiving.com/molesworthnightriderteam  This event will see upwards of 3000 cyclists riding 100km through London’s streets throughout the night of 9-10 June.  A big event and I hope we will raise some significant money for Supatra’s treatment all of which will be deposited with the Joseph Foote Fundraising Trust (JFFT) which has recently merged with Brain Cancer UK.  What Supatra does not use for her treatment will stay with the charity for research use in the UK.

It will be difficult for us to continue the momentum of our fundraising efforts, at least initially and so I hope that all of you in the UK will continue to spread the word and encourage others to raise funds on our behalf for Supatra’s treatment.  Once in Canada we will have to make some changes to the Paypal donation button but will keep the Virginmoneygiving link as funds raised in the UK will still get deposited into the JFFT account and earmarked for Supatra’s treatment costs.  Over the longer term I hope to find another charity, trust or foundation in Canada that will support us as the JFFT has done over the last year.  This is a great thing that they have done for us and a few other families, in order to help us raise funds more easily and under circumstances where the donor can be assured the money is spent on precisely what it is meant to be spent on.

I  have also had a ‘Treatment’ page added to this blog where I will outline in detail all the treatments Supatra has undergone, the treatments she is currently on, and the dates when she started them.  I hope this will make it easier for those parents of newly diagnosed children with brain tumours to find out what we have done and what we are doing to try and save our daughter.  This page should be populated by 23^rd May or earlier.

Best wishes to all,

Jorg

26 Apr 12

Hello Everyone,

Well, two weeks have gone by since my last post but really there is not much to say nor report....which is a very good thing!  Supatra is doing as well as can be expected and continues her good fight against this ghastly disease.  She is still a little unstable and walks with a slightly wider gait then several months ago; she is also a little weaker muscle wise but not more so then I last mentioned it; and her speech is slow as well.  However, other than these issues and her ever present left facial palsy she continues to do very well and its even more remarkable considering we were told that it would be wise to mark her birthday and Christmas early back in 2011 after her diagnosis.  She continues to be in good spirits, laughs and makes jokes and just simply carries on day to day.  I sometimes sit back and think about all she has been through and the small number of times she has complained or talked about how difficult things are and it just amazes me.  In fact, I have probably complained more to Punny and Punny to me about how difficult things are in our day to day lives then Supatra has about her condition and all the stuff we have put her through.  It just amazes me and sometimes shames me to think that this little girl is being more at ease about the whole thing then me or even Punny.  Of course part of this is the added burden of us knowing the diagnosis and prognosis whereas Supatra only knows that she has a cancerous tumour without knowing the whole truth.  She knows its bad though as we have had to have some heart to heart chats in the past about what is happening and why she needs to take all these different medications and have the constant infusions but she certainly does not know everything.  I just pray, pray, pray that her body will start to fight this tumour on its own with the added aid of the drugs we are giving her.  She has always had a seemingly weak immune system and we are hoping that with time and age her full immune system will kick in.  In the mean time 'stable disease' is what we hope for at the minimum.

Earlier this week we also took an additional extensive blood and urine sample for a comprehensive testing to see if there may be other underlying issues in her body that might be hindering her immune system or hindering the healing process.  We should know the results within about three weeks and hope that it will tell us something - at least something we can fix or mend should there be something else wrong with her.  We also increased her antineoplaston dose to full target dose of 200ml for the AS-10 and 18ml for the AS1-2.  She seems to be taking this very well so far.

Don't forget we are still fundraising to help pay for this treatment and please take a moment to check our 'Forthcoming Events' page for upcoming fundraisers.  There are some interesting ones on the horizon like Matthew May's tandem skydiving challenge at the end of June.  Matthew is hoping to get at least 30 people to jump for Supatra and I believe he has about 16 people so far!  You can also get more info direct from Matthew by looking him up on Facebook.  Then on 28th June there is 'Supatra's Big Night Out' at Antsy Hall in Cambridge.  Still plenty of tickets but they are going fast!

Thank you to everyone for the continued support, love, and well wishes. 

Best wishes to all,
Jorg

11 Apr 21

Hello everyone,

It has been too long since we last posted but I have had little inclination to do so as I seem to get busier and busier.  Good news is that there is no change in Supatra although she has her occasional bad days in between the majority good days.  I know I have not posted in awhile but I want to keep this post relatively short compared to my usual long winded ones :)

It seems like just yesterday Supatra had her 7th birthday.... oh wait it was just yesterday!  I swear she had a birthday for about a week starting with her party on the 24th, followed by her actual birth date on the 29th, then another celebration at the fabulously organised Destiny Charity Show in Norwich, and then some further late birthday gifts, wishes and treats throughout the next week.  Supatra really enjoyed herself and although we have not got around to sending thank you notes for the gifts - thank you to everyone who gave her one; she enjoys them all!  This last Monday we also spent the day at Legoland with our close friends Dave, Natalie, Isabelle, Sam, Sophie, William, and Lilly.  Supatra had a great time on the rides and loves the roller coaster, water ride and pirate ship.  It rained all day but that did not stop us from having a great day out although we were all knackered after that.  We were especially surprised with Supatra who managed to walk on her own for most of the day.  Very surprising as she is very tired and weak most days from her treatment and the affects of the steroids she must take.  We received the Burzynski clinic's report on her last MRI scan and basically has the same assessment as that from the NHS, that the tumour enhancement size has not changed and that it is too difficult to measure because of its reduced enhancement from the previous scan.  She still has all her symptoms although some of these can be from the treatment and steroid use while the left facial palsy is definitely tumour related and has not gone away.  To me this means that although the tumour does not seem to be growing it is also not receding enough to have a positive affect on her facial palsy.  We continue to press on, hope for the best and wish her smile back.  Supatra continues to give it her best fight.

I would like to say a special thank you to Matthew and Vanessa May for their continued support and some great fundraising initiatives on behalf of Supatra.  If anyone is interested in Skydiving please look them up on Facebook under Destiny Duo and let them know.  Matt is trying to get 30 people to skydive and raise 300 pounds or more each for Supatra.  Then there is Supatra's Great Night Out party at Cambridge's Antsy Hall scheduled for the 28 Jun 12.  This will be a big event so get your tickets now before they are all gone!

Thanks to everyone for following Supatra's story and for your many well wishes and continued donations.

Best wishes to all,
Jorg

NHS MRI Report has Arrived!

Hello Everyone,

Today we received the NHS's report on Supatra's latest MRI scan and it is good news!  There has been no significant change since the last scan on 1 Feb 12, no new lesions and less enhancement of the main tumour body again as compared to the 1 Feb 12 scan.  So, no mention of shrinkage but overall a very welcome report considering we were thinking that the tumour might have started growing again.  The Burzynski clinic is still awaiting the arrival of the scan CD for their own interpretation which I hope we will get next week.  I still have not got a written report from the clinic for the last MRI scan and have asked them to do their own reports using the scan CDs I am sending them as interpretations of MRI scans can vary greatly from doctor to doctor.  So it is important that the same doctor provides his/her analysis on each of the scans so there is a uniform assessment process; or at least as uniform as it can be.  I still have not got around to figuring out how to paste the PDF copies into this blog but for the time being I have created images of them and then pasted the last two reports below.

We are very happy with the status quo and the fact that the tumour seems to be getting less active as the decreasing enhancement indicates.  For those who may not know how this works I will try to explain.  During an MRI scan the patients body part is scanned first using no drugs to enhance the afflicted area.  Then they pause the test to inject a contrast drug into the patient that will enhance blood vessels.  Tumours rely and create a lot of blood vessels within the tumour mass to help continue to feed the tumour growth (rapid cell division).  Therefore if the contrast shows a lot of enhancement on the imagery then it means the tumour has many active blood vessels indicating an active tumour.  If the enhancements are less so or decrease then it can only mean less activity = less growth or no growth of the tumour mass.  However, what the MRIs do not do is necessarily pick up all parts of the tumour as is usually the case with DIPGs because DIPGs are DIFFUSE tumours that wrap themselves around the nerves that make up the glioma and also tend to grow little fingers or tentacles from the main mass.  It is these 'fingers' that can be very difficult to pick up with the MRI and so we think these are definitely still there as Supatra's left face continues to be affected by the cancer.  We hope that if Supatra's tumour can remain stable for the next 4-6 months or more that it just might start to breakdown from the lack of an ability to grow further or that Supatra's other supplementation will have a chance to beef up her immune system enough that it will start eating away at the tumour cells themselves.  You just never know!  Let's hope, let's pray, keep our fingers and toes crossed that this will be the case for Supatra and please keep fundraising so that she can maintain this treatment.  Thank you all!

Jorg
____________________________________________________________________________ 

Emotional Roller Coaster

Hello everyone,

The last week or so has been an emotional roller coaster ride for me and Punny as we watched Supatra getting more poorly almost on a daily basis.  Over the last while Supatra has been getting noticeably weaker in her limbs and then her tiredness increased as well to the point where she was dozing off at least 4-5 times a day even when engaged in an activity.  One minute she would be alert and the next she would be asleep and/or nodding off.  Then at about this time last week we noticed her speech dramatically slowing and she was having ever more difficulty chewing and swallowing.  I must note for those of you reading this blog for the first time that Supatra has left facial palsy which basically means that the left side of her face is paralysed and not functioning normally and that she has had this tumour symptom since last January/February.  The palsy has affected her ability to chew food properly but she was still able to do so and get by.  However, like last November when she had her seizures the chewing slowly became more problematic this week and she would also need to sip some water in order to help with her swallowing.  We were so worried and distraught knowing that all these progressive symptoms can be related to the tumour and its possible growth.  For the last 8-9 months we have been living a near normal life without thinking about Supatra's condition too much because her condition has been so stable.  Only in November and this past week have our worst thoughts come back to haunt us again as she became worse.  I just hate those thoughts as any normal person would thinking about their little one not being there anymore.  I hate this tumour, I hate the uncertainty, and most of all I hate that this is happening to someone so young...to lots of children so young.  Why make these poor Innocent children suffer like this?  Why can't it just be an old persons disease?  F#$k!!

While all this was happening we were also starting to wean Supatra down on her Dexamethasone steroid dose in preparation for a large blood diagnostic test that we were planning for this next week.  The test requires Supatra to be taken off of Dexamethasone for a few days before hand as well as stopping all non-essential supplements and also stopping the ANP treatment for at least 1-2 doses.  We had not reached the point of stopping the supplements and we were already thinking that that might allow the tumour to re-start its growth as well so we were going to keep giving some of the more important supplements and herbal extracts.  We also realised this week that her symptom progression was very similar to that which she had in November just before her siezures and it was also during a time we were trying to wean Supatra off her Dexamethasone steroids and so we decided on Thursday to increase her dose back up and give her a slightly larger pulse dose of 2.5ml/day; up from the 1.25ml dose she has been on for the last few months.  We gave this initial 2.5ml dose in the early evening of 21 Mar 12 and by the next day she was again more perky, alert and talkative.  Since then she has improved again and although I have my fears of what might be happening with her tumour it has given us some hope again that her reactions over the last few weeks might, just might be due to her body getting used to her 1.25ml dex dose and the fact that we then were trying to wean her off the dex completely.  We are ever hopeful and of course hugely anxious about getting her MRI Scan report which we hope to have sometime this Monday.  We are now approaching 14 months since Supatra's diagnosis and at least 17 months since we first noticed something wrong with her.  This is a crucial time for us and of course for our little girl who continues to grow up, albeit with a less then ideal childhood considering her difficulties with her cancer. She should be out doing everything a healthy 6, soon to be 7 year old is doing; riding a bike, running around in a park, going swimming, etc. 

This Saturday we also celebrated Supatra's birthday early by holding a little party at Funky Fun House in Cambridge with 12 of her close friends.  For those not in the know, Funky Fun House is an indoor play area for kids that has a big jungle gym type set-up for 2-12 year old.  This is Supatra's third time holding her birthday celebrations there and although we were trying to convince her to do something different she would not budge from her choice.  Of course its her wish and her birthday so we just did what she wanted and surprisingly it was much better then the last time and I think all the kids had fun.  The kids were able to play in the gym for an hour before a kids disco, some dancing games and then some lunch, cake and ice cream.  Supatra amazed Punny and I, considering how poorly she was a few days ago by going up and down the jungle gym about ten times with only minor assistance here and there.  Then she danced up a storm which you can see in the attached video and was alert and talkative the whole time.  She really gave her all to make this an enjoyable birthday party for herself.  A real inspiration knowing what she must be feeling like. Supatra's actual  birth date is on the 29th March and we will give her another present on the day and allow her to have a little more cake as well (she's on a strict no sugar diet although we let her have a treat once in a while especially on special days like this).   The video is a little dark at first but they do turn on the lights after about 1.5mins so take a look at Supatra's interesting dance moves! :)

All the best
Jorg

12 Mar 12

Hello everyone,

Supatra continues to do well although still more tired than she was a little over a month ago.  A few days after my last post I decided that we should try to edge Supatra's treatment closer to her target and increased the AS-10 by 2ml to 192ml.  She was doing really well at 190ml and her rash had gone away for a number of days so thought that it would be OK BUT after increasing it her rash came back again..arrgh!  The rash lasted almost all last week but started to recede by Friday and as of yesterday it was almost all gone.  The crappy thing is that the rash spots as they dissappear leave these ugly dark spots that look like bruises and they can take a couple of weeks to fad away.  Her arms and legs right now look terrible.  I feel so bad that she has to go through all this and it hurts me knowing that she wants so much to be out playing like regular kids and to be at school full time.  Punny still gets her to the school for 3-4 hours once or twice a week but it is not the same.  I also think that she and her best friend are starting to drift apart as they see less and less of each other.  We also continue to fear for her mental capability as her memory continues to be affected and she becomes more and more dependent on as for almost everything.  Its almost as if her brain is in reverse mode.  Sometimes she is sharp as a whip but more times than not she does not remember things she would otherwise easily have done.  Having to provide 24/7 care to Supatra is also starting to wear me and Punny down as one of us needs to be with her at all times and sleep with her.  The constant getting up and changing Supatra, cleaning the bed, emptying the portatoilet next to her bed really gnaws at your energy and both me and Punny are starting to feel it.  Even so I am trying to get back into the gym in the mornings but it is hard to work up the energy. 

We now have a date for Supatra's next MRI scan which is slated for the 22 March. Please put in an extra prayer for her on that day.  I really hope to see some tumour shrinkage but part of me thinks that it will be the same as before as her blood analysis does not indicate any tumour breakdown.  We can only hope and pray, I guess.  At least Supatra is managing to stay at her dose level and who knows, maybe it will take an extra few months at this level to start slowly wearing down the tumour.  We continue with the other alternative medicines as well.  Additionally, we read an online book called "How to Live a Long and Healthy Life...The facts you need to safeguard the health of your family" By Kevin Wright and can be downloaded for free at www.BobbysHealthyShop.co.uk.  It basically covers a whole bunch of things such as the water we drink, especially bottled water, chemicals in processed food, dairy products and such.  Some of this stuff we already knew and or had heard about before but we lost sight of and the information in this book has re-focused our energy on trying to mitigate modern life's impact on Supatra's cancer.  We not longer store her leftover food in plastic storage devices, no longer let her drink from plastic bottled water, we are trying to cut out as much processed food as possible - very hard to do - and in some cases where we can not make something fresh or find an alternative fresh source we try to choose the least harmful product out there.  We are replacing all sugars with honey and other natural non-refined sweeteners and absolutely under no circumstances are we giving her any food that contains artificial sweeteners.  Punny has been busy trying out our new bread maker and we are trying to cook fresh meals everyday.  Of course shifting once habits to a healthier old style of eating is very difficult when one is so used to modern conveniences like fast food, easily prepared processed food and using the microwave to heat things up.  We hope this new invigorated approach to a healthier way of living and eating will also have a positive affect in Supatra's cancer fight.  If you can I would read this manual as there are some interesting facts and the author does source and provide links to all his research - an interesting read which can be consumed in one evening!

Last, a big thank you to all the friends who ran in the Cambridge half marathon this last Sunday.  It was beautiful weather for it and we came out to cheer them on as well.  Everyone did a superb job and I think most of them came in at around the 2 hour mark! So, well done and thank you for enduring the pain on behalf of Supatra!!

A reminder as well that the committee will be hosting an Auction night at the Lion and Lamb Pub in Milton (see events page) and there will be some fabulous items to be auctioned off including celebrity items and sports memorabilia!  So please come out to this wonderful little village pub - that by the way has some delicious pub food and great social atmosphere - and support the fundriasing efforts.

Till next time,

Best wishes to all,

Jorg

02 Mar 12

Hello Everyone,

You are all probably wondering whats happening with us and Supatra, eh?  Well, me and Punny have been feeling rather tired lately and of course there is always something to do with two little kids in the house - even under normal circumstances.  Supatra's condition is in a steady state at the moment with her dose now very near to the target but we have consciously decided to keep her at her current dose for the next few weeks as she has become more tired over the last 3-4 weeks since reaching this high dose level.  As a reminder her target dose is supposed to be 200ml for the AS-10 and 18ml for the AS1-2 per infusion every four hours and she is at 190ml and 18ml respectively, so very close.  However, when we took her to her current level about a week ago she again developed a rash which our UK doctor says is Erythema nodosum (you can google it) and could be caused by various things and so we decided that we would keep her at this dose for some time to see if she will adjust to it.  Other than this she has been doing really well and went to school a couple of days this week.  Supatra's grandma also sent her a Wii game console which she always loved playing at her best friend's house and has been pining for for months.  This keeps her dancing and moving around and she seems to be more attentive and energetic when there is something that is motivating her.  Over the last 3-4 weeks she has developed a short term memory problem which could be associated with some reported cases of "brain fog" while on antineoplastons or her brain functions are starting to be affected by the radiotherapy she has had.  I certainly hope it is the former and that this will pass over time while on the treatment or correct itself once off treatment as the affects of the radiotherapy scares me.  I would hate to think that we are undertaking all this effort only to have Supatra become permanently mentally handicapped in the coming years.  Of course the doctors never told us of the long term affects of radiotherapy because in their minds there are no long term DIPG survivors.  But what if this treatment and all the other alternative treatments we are giving her really work and she survives 3, 4, or 5 years?  What is going to happen to her brain, her hearing and will she develop other cancer growths because of the radiotherapy?  We just don't know and when I recently asked about the long term affects of the oncologist, she just side stepped the issue and did not answer the question. Obviously they do not want to tell us and have us worry about it because to them Supatra will pass away and it would be for-not to tell us of the problems she may face later in life - which to them will not come!

Of course not posting on the site also means I have not got around to creating a spot where I can put past and future MRI scans and applicable reports for you to see but hopefully will get around to this in the near future.  Her next scan will be scheduled sometime in the latter part of March and we hope beyond hope that her tumour will show some shrinkage. 

On the fundraising front, I would also like to say thank you again to all the folks at my office on RAF Molesworth who continue to give so generously to Supatra's Fairy Fund.  For those interested there are also numerous friends and acquaintances who will be running the half marathon in Cambridge on 11 March and you can go here  http://uk.virginmoneygiving.com/nataliegunner or http://www.justgiving.com/Helen-Hurworth for the teachers from Supatra's school who are also taking part.  Then on the 15th March in the village of Milton at the Lion & Lamb pub there will be an auction night with many superb celebrity items to auction off.  Please see the Forthcoming Events page for more info.  On 24th March, local comedian Emily-Jayne Allen is organising an open-mike comedy night at the Portland Arms in Cambridge starting at 8pm; and last but not least Matthew May of Norwich's Destiny Due group is organising a big charity show in Norwich at The Talk on the 30th of March.  This show will be huge with Heart FM DJs hosting the night and dozens of local acts participating.  It is a family night out so bring the kids and we will be attending this one as well.  This charity show will be raising money not only for Supatra's Fairy Fund but also for Cots for Tots, a very worthwhile and deserving charity.  A big heart-felt thank you to all the organisers of this months many events!  Unfortunately, we can not take Supatra and Jason to all these great events nor can we the parents always attend as we try to maintain a strict routine with Supatra's food and medication but we appreciate every one of you for your hard work and support.

There are additional planned events and I ask that you keep your eye on the 'Forthcoming Events' page even if you do not see a new blog post as some on the fundraising committee have access to this blog and will from time to time make improvements and add new events.

Good night all,
Jorg