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
Friday, 24 February 2012
Tuesday, 14 February 2012
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.
Best wishes,
Punny
Monday, 13 February 2012
Saturday, 11 February 2012
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
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
Saturday, 4 February 2012
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.
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.
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