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

Supatra's Mom Post!

Hi everyone,

I'm Punny, Supatra's mom.  I have always let my husband Jorg do the blog updates but after my birthday I felt I wanted to say something as well.  I do apologize as I meant to post this shortly after my birthday but I can just never seem to find the time.  First of all, I would like to thank you all for your continued support, thoughts, prayers and help.  My birthday on 26 January was the one year mark since Supatra was diagnosed with a DIPG tumour.  I remember everything so clearly like it happened yesterday.  I remember being in the hospital waiting anxiously for the results of Supatra's MRI scan.  I remember being told the bad news and felt so numb like being hit by lightening.  We were being told that our five year old has no chance with the only available treatment being radiation therapy for five weeks.  I couldn't believe what I was hearing, then to be told that it is a very rare type of brain tumour, I just could not understand why it was happening to Supatra, to our family.  It was a big shock for me and Jorg.  We both didn't know what to do except that we wanted to be left alone and so the doctors left the room and we just hugged each other and cried.  I never saw Jorg cry so bad like that before.

Jorg stayed with Supatra in the hospital that night and let me go home so I could cancel my birthday party arrangement and start asking friends for help with babysitting.  I left Jason with a friend that night, mentally I didn't think I could look after him and decided he was better off staying with my friend.  I remember I felt so hopeless, worthless, and upset at myself that I couldn't do anything to help my daughter.  It was such a horrid feeling, I hate myself, my birthday, and if I didn't exist this tragedy would never happen.  I told myself that night that I wouldn't celebrate my birthday  ever again.  That feeling stayed with me for a long time.  Each morning I struggled to wake up but as soon as I heard Supatra's little soft voice beside me it woke me up and that would keep me going each day.  We took it day by day and just kept hoping that tomorrow she would still be with us.

I can't bear the thought of losing my little girl, how can I explain it to Jason when Supatra is gone, what would I tell him.  Our Hearts will be empty forever.

To be honest, I hate going to the doctor appointments at the paediatric day unit because each time we are there it just reminds us of the fact there is no treatment in the world that will cure her or extend her life.  I'm just a typical mom who keeps lying to myself and puts on a brave face, in fact, I'm so scared and vulnerable.  Meeting the doctors stopped me from lying to myself or perhaps stopped me from hoping for a miracle and thats why I hated going because it brings me back to reality.  Jorg and I searched the world for a cure or something that would prolong her life but every time we would bring something interesting to the doctors they would tell us it is no good and that there is nothing we could do except make her as comfortable and as happy as possible.

I'm not pro doctor Burzynski but he is the only hope we have.  A life with no hope isn't a life.  And we're doing everything we can to save Supatra's life.  I understand why his treatment is controversial to the mainstream doctors but every cancer treatment has its own controversies.  Chemotherapy and radiotherapy are known for bad long term side effects, so why aren't the mainstream doctors being more open minded and try to understand the ANP treatment and learn from it?  All I'm trying to say with this post is that I'm happy that we did take the chance by taking Supatra to America and have this treatment.  We are so gratful to have Supatra with us today.  All other things don't matter to us anymore, she is the love  and joy of our life and we would do anything to cure her and have her with us for a very long time.  With the doctors so sure of the prognosis and speed of tumour growth we never expected to have Supatra past last summer and to come this far today with each day waking up with Supatra at my side is a blessing and its worth every penny spent.

You might wonder why I never post any messages in the blog before.  I just couldn't do it, I was so emotional to express my feelings and I didn't want people to know how weak I was.  I kept telling myself that I must be strong, for the family because they need me but as soon as I start writing I would cry a river before finishing the first sentences so I decided to let Jorg take care of the blog and I'm better off being a full time nurse and full time mom.

I feel much better now knowing that there are an army of friends behind me and that I am not alone.  How I will ever be able to thank all of you I do not know, you guys are angles.  Thank you to all our friends, families, donors, blog followers, school teachers, nurses, prayer groups, fundraising teams, and doctors for your continued support, prayers and to those that bring us the occasional food so that I do not have to cook! 

Love and hugs from me to you.

27 Jan 12

Hello everyone,

Supatra is doing fine and near her target dose.  It was Punny's birthday this last Thursday and Supatra ended up being more excited about it then her mommy.  The little rascal couldn't keep a secret and spilled all the beans on what I was planning for Punny!  This week we got to borrow a Wii game from friends who are on vacation skiing and Supatra loves playing on it, especially the dancing game and bowling.  I guess we will have to get her one for her birthday on 29 March.  We are still not sure what we would like to do for her birthday this year and of course we still need to plan something for her little brother Jason who will turn 3 on February 10th.  The next big date for us is on 1st Feb as that is when Supatra goes for her next MRI scan and we get to find out whether the treatment is continuing to work on her tumour.  I am now following about 6 different blogs on UK patients undergoing the Burzynski treatment, two of them adults and they are all doing very well. We are very lucky that Supatra has made it this far and we pray that she continues to do well.  I think the longer she stays stable the greater the chance of success in beating this cancer.  Today was an eventful day as she attended school for almost the full day for the first time since last year.  She was rather tired afterwards but thoroughly enjoyed being there with her friends who she misses terribly.  She is such a lovely daughter.  When I was away from my home office she wrote a bunch of messages of love with pictures on post-it notes and stuck them all around my computer :)   I love her so much!  I think I will take her shopping tomorrow to buy some toys for her brothers birthday - she just loves to buy presents for others.  Thanks to everyone at the IFC who keep giving to support Supatra's treatment costs, you guys and gals are amazing!

Until next post,

Best wishes to all,

Jorg

MRI Scan Time!

Hello everyone,

Home life seems to be getting busier every week and it is becoming harder to spend time on the computer to post on the blog.  I know some are eagerly awaiting news of whats happening with Supatra so tonight I hope to quench your thirst a little! 

Supatra continues to do very well and has been active everyday either spending some time in school for short periods, playing Wii games with her best friend Isabel or going out with the family.  We have kept Supatra on her small steroid dose as we do not want to upset her body by withdrawing the drug while we are still increasing her medication.  Hopefully once she has been at her target dose for a week or two we will try taking her off as she is already starting to put the weight she lost back on even at this very small dose.  She is now at 190ml for AS10 and 14ml for AS1-2 and she should be at her target dose within another week to 10 days.  We are purposely not rushing it as do not want a repeat of November.  Sometime in the next week or two Supatra will also go for another MRI scan and we are very anxious about this and hope we will have good news like that of Laura from Kent whose MRI a few months ago showed an initial 36% reduction and then more recently a 56% reduction while on the treatment.  Laura is an adult lady and has a different tumour then Supatra but it just goes to show that this treatment does indeed work for some patients (you can read more about Luara here: http://www.hopeforlaurafund.co.uk/
Additionally, through her blog I was linked up with another mother who had an 8 yr old boy with a brain tumour in 1998 that took the treatment and the tumour is now considered inactive/dead and he is now graduating from college and is 24 yrs old.  Unfortunately though, because his much smaller inactive tumour would still show up on his scans he remained on the ANP treatment for approx 7 years.  I hate to think that Supatra would have to do this treatment for that long and it does worry me. BUT these are all good news stories considering the severity of these brain tumours.

I still do not have firm details on our local fundraisers coming up but as soon as I get them I will post.  The next big event will be the Thai evening in Abbotts Ripton, Huntingdonshire (on the events page) and looks to be a sell out.  Next week I will be registering a team of at least ten cyclists who will take part in the London Nightrider 2012 Charity Cycle Tour on 8-9 Jun 12 (http://www.nightrider.org.uk/) which should be a great experience and an event that I will also participate in.  I have set-up a Molesworth Nightrider Team Just Giving page at http://www.justgiving.com/molesworthnightriderteam if you would like to donate.  Please pass on the info to your friends and family.  I am also putting the final details together for our Cambridge, London and Return Cycle Tour on or about 12-13 May 2012 and will likely also set-up a just giving page for this.  The aim will be to get 10-20 participants involved in this event with each pers raising funds through sponsorships.  Additionally, we have developed a formatted sponsor form and Supatra Fairy Fund poster that will be added to this site soon for people to download for their fundraising activities.  We are also looking to purchase Supatra Fairy Fund t-shirts that fundraisers could use.  Does anyone know of a t-shirt printer willing to work at a discount and know of any companies willing to sponsor the t-shirt purchase by having their company name or logo on the back?? If you do, please contact us on using the contact page. Then we have our very good friend Natalie running the Cambridge half marathon on 11 Mar 12 for Supatra and recently numerous others have joined in including several teachers from Supatra's school.  Very impressed ladies and wish you a speedy finish and a nice refreshing beer at the end!

The Last big event that I will mention is a local talent show being put together by a friend of a friend who heard about Supatra's story.  The event is at The Talk, Norwich, Norfolk on 30 Mar 12 and has a lot of support behind it with outstanding music, entertainment, door prizes and raffles.  For more info go to http://www.facebook.com/#!/destinyduo and/or our events page.  This event is supporting two charities, Cots for Tots and Supatra's Fairy Fund through the Joseph Foote Fundraising Trust and is a steal at only 10 pounds for advance tickets and 12 pounds at the door.

So, it looks to be a busy busy period on the fundraising front all around.

All the best to everyone!
Jorg

12 Jan 12

Hello Everyone,

Apologies for not posting more regularly lately but I have been rather tired in the evenings and not too much has been happening with Supatra.  Supatra continues to do very well, especially since last post.  She has been in an upbeat and jovial mood the whole time and very active.  We took her to London on 7-8 Jan to go skating each day and spend time at the Museum of Natural History.  We had a great time.  This was a weekend with just me, Punny and Supatra while Jason stayed behind with his grandmother.  We have been slowly increasing her antineoplaston dosage and she is now at 180ml AS10 and 12ml AS1-2.  For those that may not remember, her target dose is 200ml AS10 and 18ml for AS1-2.  However, the day before yesterday Supatra was a little more tired then she had been and not as perky mentally.  We were not sure if it was the treatment or all the activities she was involved in over the past week.  Yesterday though, she was even more tired and there were a few other subtle changes symptoms that had us concerned and so we decided to give her a 2.5ml dose of oral dexamethasone and we did the same again today.  Today Supatra is back to herself again although still slightly more tired then usual.  We again gave her a 2.5ml oral steroid dose and for the next few days will give her 1.25ml to start the weaning off process - unless of course symptoms reappear.  We will also keep her at her current ANP dosage level for the next few days and monitor her closely.  If all seems well then we will start to increase her doses again.  The rash that she developed before Christmas is not as intense any more and we are hoping that issue will be behind her.  Supatra has been looking really well and shedding some of her steroid induced access weight for the last few weeks so we are not happy that we had to put her back on steroids.  I think this has been one of her longest periods without steroids having taken them last on 23 Nov 11.  She looks so much better when you see her now and compare her to her pictures from August.  Even Supatra realises it when she looks at herself in the mirror.  She is also still eagerly awaiting the day she can have her smile back as well.  She has been such a lovely girl these past weeks, joking, talking up a storm, being cheeky, and making beautiful cards and arts and crafts for me and mommy.  When we see her like this - almost completely normal, it makes it very hard on us when she has symptoms reappear and it snaps us back to the reality of her situation.

We also hosted the fundraising committee meeting at our place yesterday evening and there will be some excellent events coming up shortly, which I will post and update the blog on when things become a little bit more solidified.  One event that I would personally run and organise is a Cambridge to London and back bike tour.  The idea would be to have a minimum of two riders and up to a maximum of about 20 cyclists participating.  Participants would canvas their own sponsors and we would look to advertise this on radio and print.  The plan would also be to ride as a group (not a race) and stop in a few choice locations to collect donations along the way.  I would like to conduct this sometime in May and will try to get the initial advert out by end January to solicit for participants.  If someone wishes to join in then please contact me direct (if you know me) or make contact using the contact form on this blog.  Of course we also have the much anticipated Thai dinner evening on 4 Feb 12 at the Abbott's Ripton community hall that will include Thai dancing and a kick boxing demonstration.  Again, just contact the fundraising team through the blog contact form and we can get some tickets to those that want them - but there are only 120 tickets so hurry!

Last, we still have some of Supatra's blank cards available for sale and now also rubber wrist bands with the colours gold for paediatric cancer and grey for brain tumours in a swirl design (blends in good with military uniforms so great for the soldiers out there!!  If you want some or would like to sell some for us then again, please use the contact form on this blog.  Also, if you would like to help out with a fundraising event then please contact us so that we can help get the word out.