Friday, 26 October 2012

Supatra will finally get her Sister!

Hello everyone,

We are holding up OK but continue to have our bad days and I personally continue to re-live the last few weeks of Supatra's life constantly and continue to feel guilty that there is a strong possibility that we made a mistake back in early May by trying to wean her off her steroids.  However, we were so certain that the steroids were affecting Supatra negatively that we were determined to try and wean her off.  I think we lost track of the fact that Supatra was also on her maximum ANP dose at that time and so we should have realised that it was not helping her to be off the dexamethasone.  Parts of me still believe that she would have been with us at least for months longer had we not done this.  The only saving grace for me is in reviewing her medical logs it was clear she was already showing signs of symptom progression even though the March 2012 MRI showed no significant change.  Of course as reiterated on this blog many times a "no significant change" does not equal "no change" and therefore there could have been some small diffuse parts of her tumour progressing and affecting her.  Then on her last scan on 31 May 12 it showed a new lesion in the dorsal area of the pons but they did not categorically come out and say that it was cancerous.  It helps me to know this but it is still hard for me to comprehend how quickly she declined over the last 4 days of her live.

Back in the summer of 2011 me and Punny discussed the possibility of having another child - another girl to be precise and also talked about this with Supatra.  Supatra was very eager to have another sister and asked us about it several times over the course of the last year.  It was also around the same time we made a critical decision to take Supatra to the Burzynski clinic to try and save her live or at the very least extend it and so the idea of having another child with this big trip looming and not know if Punny and the kids would be returning to the UK (as we had no doctor at the time willing to help us monitor her ANP treatment in the UK).  Once we started Supatra on the ANP treatment we knew that this was going to consume all of our efforts and time and therefore we decided in October 2011 not to have another baby.  I would have loved to have given Supatra the opportunity to see and play with a sister but looking after a baby, while Jason was still in diapers and with Supatra being ill was not an option.  Supatra had to come first and we needed to give Jason as much attention as we possibly could.

When Supatra passed away Punny and me both agreed soon after that we would want to try for another baby girl although we also knew this would be a long shot and that we might end up with two boys instead.  But we knew we needed this in order to help us get over our grief for Supatra and so that is what we did.  I am happy to announce that Punny's 24 Oct 12 scan has confirmed that we will be having a baby girl!  We are so so happy although in the back of my mind I am cogniscent of my age and worry about the health of the baby.  For months I have been talking to my Supatra and asking her to intervene if she could to ensure that we would have a baby girl.  Who knows maybe my little angel is listening to me:)  The baby's expected birth is to occur around the 26th of March 2013 approximately 3 days before Supatra's birth date - how wonderful and strange is that!  I am now hoping that she will be born on Supatra's birthday so that we can celebrate their birthdays together.  We still have not picked out a name but we are thinking of including a portion of Supatra's name as the new baby's middle name.

During the last few months of Supatra's life we continued to talk about having another baby girl with Supatra but of course had to tell her that it would not be until after Supatra got better.  I can not remember exactly when but in March or April 2012 Supatra made a hanging mobile for her future sister and wrapped it all up for her birthday.  We still have this present, kept in a special place, and intend to give it to her sister probably on her 2nd or 3rd birthday - at a time when she is likely to understand to some degree the significance of this gift.  We never prompted her to do this - this was something she decided to do on her own.  Supatra was always so thoughtful and in some ways I am surprised that she did not make presents for everyone in the family at that time like she did in February 2011 for our next Christmas.  She did not know of the seriousness of her condition at that time but out of the blue she started to collect and wrap Christmas presents for everyone, as if she knew she might not be hear in December 2011.  I think I mentioned it in a blog post around that time.  I think not doing this for Christmas 2012 has likely something to do with her decreasing ability to make crafts, draw, write and so on, but a part of me wishes so much that she would have done this.  I miss my little artist extraordinaire! 

We now wait with baited breath for the arrival of our new born and although I am being a little selfish, I hope beyond hope that her sister will look and have the same beautiful personality like her big sister Supatra.  We are happy about the news but it is still a happiness mixed with sadness as we continue to constantly think about our Supatra.  Supatra will always be my first born, my shining light, so proud of her accomplishments and courage that our sadness is always there in the background.  Although not a religious man, I think Supatra is looking after us and knows about her soon to be baby sister.  Let her be her sisters guiding light and personal angel so that no harm will come to her. 

The picture below is of the baby's scan on 24 Oct 12 and we can already see that she has the same type of head structure comparable to Supatra's in her old scans.  One can only hope that she will have Supatra's spirit in her.

Bye Jorg

Our new baby girl!!!

Supatra at less then a month old.  I love this picture!  Miss you sweetie pie!