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
                               

23 Feb 12

Hello Everyone,

Apologies for not blogging for a while.  I've been physically exhausted and mentally drained this week. I meant to write something in the blog but I often passed out in Supatra's bed right after reading her a bed time story. 

Thank you to everyone for your get well wishes, thoughts and prayers for my dad. There is a bit of good news regarding my dad's condition though. The tumour in his bladder wasn't cancer afterall and it can be easily treated however, the doctor has found a tumour in one of his kidneys. It is a relatively new tumour and they think they can surgically remove it.  Despite the diagnostic, my dad doesn't want to go through the operation and hopes that the tumour will somehow magically go away on its own like all other illnesses that  he has had in the past.   My dad is a very strong minded and very stubborn individual, so if he's made up his mind on something it is nearly impossible to persuade him otherwise. I understand that he doesn't want anyone in the family to worry about him. He asked me not to go back to visit him, he doesn't want me to leave Supatra behind. He told me that my priority are my children and he is too old for me to worry about him.  However, it is never that easy and I still don't know whether I will need to go should he undertake this surgery.  At 85 years old anything can happen.

Over the last week we also got several other pieces of bad news and I would like to convey my condolences to Leyel's mom and dad.  We were heart broken to learn of Leyel's passing last month. Then just today, we learned that Olivia is having a turn for the worse.  Olivia is six years old and her cancer seems to have returned and we ask that our friends hold an extra prayer for her.  Be strong Alex, Momoko, Olivia and all of the Bianco family, we are thinking about you and praying with you.

On a more cheerier note; Supatra had a good time at school  on Wednesday. She loves to go to school for delicious school dinners and her show and tell. This week she showed and told about her neck lace and bracelet that she proudly made on her own.  The school has been fantastic. Everyone in school, including  head teacher, Supatra's teachers both  last year and current year are very supportive since day one.  People at school are so understanding with regard to Suptra's condition especially her friends in class 5 and class 6 who are lovely and very supportive.  Supatra has teaching assistants helping her in the class and taking her where she needes to go. There are normally two teaching assistants one helping her in the morning and one does in the after noons. Thank you very much everyone for helping Supatra at school and make sure she is well and happy. I can't thank you enough for what you have done for us. Supatra is more tired than usual these last few weeks but that is due to the treatment as we are now at very close to target dose.  We continue to inch up the dose over a prolonged period in order to ensure that she does not have another siezure or other problem that would result in having to take her off treatment.

I also want to say hi to Billie and Luna, hope you are both doing well.

Best wishes

Punny

Happy Valentine's Day

Happy Valentines day to all of you, hope you all have a wonderful day with your loved one.  I am always thankful to God who gave me such true and loving people in my life. Thank you to all of you for your thoughts, kindness and love for us espeically to Supatra. Love is a miracle and with your love Supatra will be fine.

Supatra is continuing to do well today. We kept her on the same dose over the last few days to see how she gets on and will likely increase her dose again tomorrow. Yesterday was a very busy day for Supatra, we went to the Hospice for music therapy and went to the park with her best friend for tobogganing. Indeed it was a fun day for her but also a very tiring day. So, we decided to take it easy today, stay in and watch a movie at home.  Supatra is such a sweet little girl she never forgets to make us cards on special days such as today. She woke up this morning and gave me a big hug and kisses and told me how much she loved me.  She also made a card for Jason and her daddy.  We bought her a bounch of red roses because she loves flowers and loves to have them in her bed room.

I apologise for not updating the blog about Jason's birthday eariler. I meant to do it the day before yesterday but I was too devastated when I heard about my dad.  Unfortunately, my dad was told that he has bladder cancer and that they found a few tumours in his bladder which need to be removed as soon as possible.  My dad is 85 yeard old and very weak, having to go through an operation would take a toll on his health. I would love to visit him in Thailand but I can't leave my daughter who is also in her own cancer fight.  So now I have two people dear to me that I must worry about. I'm waiting for further information from my brother as to when the operation will be and at which hospital.  Jorg and I are discussing how we might make it possible for me to go and visit my dad and it might be that Jorg takes some time off work and stays home with Supatra while I travel with Jason to Thailand - but we just don't know yet.

Jason had the most amazing birthday. We took him to Funky Fun House with his best friends, Misa and Ellie. Supatra and one of her best friends, Oliver also came along.   He also had the most amazing birthday cake made by our good friend, Angelina and Kathryn from the prayer group. The cake was a large Thomas the Tank engine toy with three troublesome trucks behind made of cake and icing and filled with mini chocolate bar candies.  You should have seen his face light up when he saw that cake and of course all that chocolate!!  We also gave him two new Thomas the tank engines (Henry and James) for his train set and he has not stopped playing with them nor let them out of his sight.  He has also been singing the "accidents happen" song since Christmas and likes to crash the trains.  He is so amazing and so different from his big sister Supatra.  He has also become very adaptable because of our focus on Supatra at times which means he sometimes feels left out but we try our best not to let this happen.

Best wishes,

Punny

New youtube video of Supatra

11 Feb 12

Hello Everyone,

Home life seems to be getting busier and busier and I am finding it harder to post on a regular basis and to find a convenient time to do so.  Supatra is doing pretty good although she has had a few bad days where her energy level was just not like previous ones.  However, for the most part we have been able to continue increasing her doses and she is very near her target dose.  Since I last posted we have had several oncologist appointments, her monthly physical exam with her private doctor that is required by the ANP protocol and an MRI scan.  Her MRI scan was a very mixed blessing and did not live up to our hope that the tumour would continue shrinking.  However, it was not that bad considering we had to take Supatra off antineoplaston treatment several times in November and then after the last time we intentionally increased her dosages at a very slow pace as we were worried of another relapse that would result in her coming off treatment again.  Supatra has been on treatment without interruption (except for a few dosages here and there) since 24 November 2011.  Had we increased her dosages as we had been taught in Houston she would have reached her target dose by the 18th December; however, we chose to go slower because of the problems she was having in November and we have yet to reach the target dose although we have been near the top for several weeks. 

Why am I telling you all this?  Because we strongly think that the small (0.2cm) increase in one dimension of her tumour could very well be related to the fact that she was off ANP completely for several periods in November and because she was at a lower dosage for a significant period of time over the two month period from her last MRI on 14 Nov 11.  On the positive side the report stated that there was less 'enhancement' of the tumour which indicates a possible decrease in tumour blood activity (a contrast drug is used to enhance the blood veins in the brain and considering tumours develop their own blood vessels to feed their growth they then "light" up in the images from the MRI).  This can indicate a less active tumour - good news!  The following is a copy of the written report given to us:

'MRI Head: T1, T2, FLAIR and DWI of the brain with post contrast medium images.
There has been minimal increase in size in the left pontine mass when compared to 14/11/11 (2.5 x 2 cm now compared with 2.3 x 2 cm before).  Enhancement following gadolinium has decreased slightly.  Increased intensity on T2 weighted imaging in the basal ganglia and thalami has not changed (probably a treatment effect). No new Lesions'.

At the clinic we were also told that the treatment can go several ways depending on the patient and other factors (like treatment interruptions).  A patient can show tumour reduction right away (i.e. after the first scan, like Supatra) followed by slight tumour growth and then further reductions.  Or no response after initial MRI (i.e. first 6-8 weeks of treatment) followed by small tumour reductions thereafter. Or, continuous responses to the treatment and the scans will show progressive tumour reductions over the course of the treatment.  There's probably other combinations of this but those are the three they mentioned to us.  We are also following approx. 12 other patients on this treatment through their own blogs, diaries, and websites, and several of them have shown a similar pattern to what we hope will be Supatra's path and that is initial indications of tumour reductions, followed by some tumour activity or no reductions, and then followed by further reductions.  Therefore we are still hopeful that Supatra's tumour will breakdown while near or at her target dose over a period of significant time (weeks if not months).  Her next MRI scan will be a very nerve racking time for us and is scheduled for sometime at the end of March 2012; so please keep up your prayers and hope for the best!  We are also still waiting to hear from the Burzynski clinic to see what their radiologist says about the scans - whether he concurs with the NHS report or if they differ on their interpretations. The NHS report was rather short and sweet so I am keen to see if the clinic can add some more clarity for us.

I have also noticed that some of those other patients that I am following are posting their MRI reports and I think this is a good idea, as not everyone will believe positive results and will want proof.  Therefore, in the near future I will create a section on here where I will post copies of all Supatra's MRI reports and images (if possible) since starting the treatment.

Supatra continues to attend school on occasion and Punny tries to take her at least 2-3 times per week but this last week she was only able to go once.  On 3 Feb 12, we found out that Punny's car needed a new head gasket and timing belt and it took almost a week to complete the work.  Then on the weekend (4 Feb) I spun out in my old used car and damaged it to the point where it was not worthwhile to fix and had to buy another old used car in a hurry (no one or thing injured in the accident other then my pride and the car's front end!!).  So it was an expensive past week for us and rather boring for the family as they had no means of getting around while I was at work.  We have two cars on the road again so next week will hopefully be better for Punny and Supatra; although, now I have to worry about whether or not my new old used car will be as reliable as the wrecked one - fingers crossed.

This Friday was also Jason's third birthday and although he does not quite know what the fuss is about he had a good time on Friday and today we spent the day at Funky Fun House with a few of his friends.  I think Punny would like to post more on this including pictures tomorrow so I will leave it at that.

Please don't forget to visit our "news" and "Upcoming Events" pages to read the latest on what has happened and is about to happen on the fundraising front.

Best wishes,
Jorg