Wednesday, 16 May 2012

15 May 12

Hello Everyone,
Again, it has been some time in between posts but there are reasons for that.  First, Supatra’s condition nor  treatment plan is changing much and therefore there is less to update you with.  Second, it is becoming more difficult to find the time to write and keep everyone updated on all the activities we are doing.  We are keeping busy and I could post more regularly with shorter updates as to our activities but finding the time is difficult.  Today I would like to provide a short update on Supatra followed by some important news that not everyone may be aware of.
Since my last update Supatra has remained generally the same health and symptom wise.  Supatra reached her ANP target dose several weeks ago and since then she has become more lethargic and tired which is a known side effect of the ANP treatment.   It is the same symptom she developed about a week after reaching her target dose back in Houston in October.  The good news is that she still has her energetic moments and when engaged in activity that she finds interesting and exciting she can still get herself involved and physically active.  Of course her tiredness really kicks in when she is on her infusions and then gets better during her off times.  Punny continues to take her to school a couple times a week for a few hours each time and we try to either bring her to visit her friends or have them come to our house.  A few weeks ago we had a week long break in Devonshire at the Buckfast Abbey which was provided to us by the Torbay Holiday Helpers Network (THHN).  It was a wonderful time and Supatra and Jason got to spend a few days on the beach although one of those days it was rather cold for Supatra.  We also enjoyed the scenery, caves, and Pennyville Farm.  Supatra managed to ride a pony albeit with a little help and drive her first (electric) car around a track by herself.  Jason also rode an electric quad bike by himself and had fun crashing into things.  We would like to thank everyone at the THHN and especially Mr. Luke Tillen who made it all happen.  All our needs were provided for by local businesses including our accommodations, food, and fees for some of the local attractions.  On the way to Buckfast Abbey we also took the opportunity to meet our friends the Bainbridges’ and have an opportunity for Supatra to see Billie again as the last time they met was in Houston in October 2011.  We also stopped in to see Richard and Chantal, parents of little Amelia who was recently diagnosed with a DIPG tumour and is also undergoing ANP treatment.  We thank them both for their hospitality and wish Amelia and Billie all the best in their battle to beat this disease.
The big news for everyone is that we will be moving back to our home country – Canada in late June of this year.  My employment in the UK was always intended to be temporary and we were lucky enough to get extended for another year when my replacement was not able to come and then get extended again this last year due to more unfortunate circumstances.  We have really enjoyed our time in the UK, for me both at my work and for us as a family because of all the great friends we have made.  Unfortunately, our journey will take us to a new city where we have no friends and I only have a few work acquaintances, so it will be a very difficult move especially for Punny and Supatra.  I think Jason will be fine as long as he has his toy cars and Thomas the train set, all will be good.  But Supatra will miss her school and her many friends terribly and we will have to work hard at getting her settled into her new surroundings and into a new school.  Punny, will also be hard hit as she has so many friends here in the Cambridge area that it will be very hard to match this network of support in Ottawa.  The weeks are flying by fast and it will soon be time for us to hold our farewell party, try to fit in another short vacation in the UK and try a few more fundraisers.  We will be holding a group car boot sale scheduled for the last weekend in May, I believe on Saturday 26 May at the Oakington village site.  We will have lots to sell including some of our UK electric equipment and gadgets that we cannot take with us – so please come out and by some quality used stuff.  I will also still be participating in the London Nightrider cycling event on 9-10th June with 11 others to raise money for Supatra.  You can donate at our team justgiving link found here:  This event will see upwards of 3000 cyclists riding 100km through London’s streets throughout the night of 9-10 June.  A big event and I hope we will raise some significant money for Supatra’s treatment all of which will be deposited with the Joseph Foote Fundraising Trust (JFFT) which has recently merged with Brain Cancer UK.  What Supatra does not use for her treatment will stay with the charity for research use in the UK.
It will be difficult for us to continue the momentum of our fundraising efforts, at least initially and so I hope that all of you in the UK will continue to spread the word and encourage others to raise funds on our behalf for Supatra’s treatment.  Once in Canada we will have to make some changes to the Paypal donation button but will keep the Virginmoneygiving link as funds raised in the UK will still get deposited into the JFFT account and earmarked for Supatra’s treatment costs.  Over the longer term I hope to find another charity, trust or foundation in Canada that will support us as the JFFT has done over the last year.  This is a great thing that they have done for us and a few other families, in order to help us raise funds more easily and under circumstances where the donor can be assured the money is spent on precisely what it is meant to be spent on.
I  have also had a ‘Treatment’ page added to this blog where I will outline in detail all the treatments Supatra has undergone, the treatments she is currently on, and the dates when she started them.  I hope this will make it easier for those parents of newly diagnosed children with brain tumours to find out what we have done and what we are doing to try and save our daughter.  This page should be populated by 23rd May or earlier.
Best wishes to all,