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.