Tuesday, 13 March 2012

It's a waiting game...

Not much happening at the moment, just the routine blood checks every couple of days, and blood and platelet transfusions as required. *Thanks to everyone who has become a donor, keep up the good work!*

The end of chemo assessments Oscar had in February showed one large tumor remaining on his liver, and tiny pockets of neuroblastoma cells in other areas.  The size or location of the liver tumor means surgery is not an option due to the high "morbidity risk", so the doctors are left with a dilema as to how best to tackle the spread of the remaining disease.  Our own team of consultants in Belfast are in direct contact with specialists in Great Ormond Street and other locations, they have been analysing the scans and discussing the best options for Oscar.  It is frustrating in that we know there are neuroblastoma cells/tumors in his little body, working away, while we wait for a decision to be made.  But we also know that the decision cannot be taken lightly, and we really appreciate the effort and work behind the scenes by everyone, to ensure our little boy has the best possible chance of beating this and surviving...

The main discussion is around whether or not to continue with Oscar's current treatment plan, which is a European high risk neuroblastoma clinical trial, on which there are new drugs which have already shown a significant improvement in survival rates in the American studies.  Stay on this, which we have always believed with all our hearts is Oscar's best option, or come off it to try MIBG therapy, which may best eradicate the spread of the disease and possibly the large tumor remaining on his liver.  ARGH!!!  Oscar's consultant is hoping to have their final "best approach" decision by tomorrow, which will then be discussed with us, and the plan drawn up for next stage of treatment.

On a lighter note, we managed to escape the reality of our situation at the weekend, and recharged our batteries for what lies ahead at Lough Eske Castle in Donegal.  What an AMAZING place, perfect if you need to get away from it all and relax in pure luxury!  We're already planning our next break there (once another Travelzoo deal is released!), and contemplating taking the kids...  Stephen said we should leave all our worries at the Donegal border on the way down, and pick them up on the way back, which is exactly what we did!  Oscar had a sleepover at Granny Susies and Granda Brians house, Izzie had fun with Davina and Dermot, and Granny Jo came up and did all our ironing and tidied up for us returning.  What a perfect weekend!

I also have another *huge thanks* to give to Louise at Carphone Warehouse - she was reading Oscar's blog and contacted us to ask if there was ANYTHING Carphone Warehouse could do for us or donate to the haematology ward to make things any better.  She arranged a donation of 6 Motorola Xoom tablets - 1 for us and 5 to remain on the ward!  What an amazing and generous gesture, this will have a huge impact on a lot of people, especially once we get the WiFi situation resolved on the ward.  There are lots of toys and art materials available for the kids to use, but there are a lot of older kids and especially teenagers coming in for long stays, and there is not a lot to keep them entertained.  Thanks again Louise, Carphone Warehouse, and Motorola!  Oscar is already so proficient in using ours, he has been showing me how best to navigate the screens, and spends a lot of time every day playing with the pre-school apps we have downloaded for him!

We also have quite a few friends, family members, and friends of family members contacting us to say they would like to do some fundraising on behalf of us and Oscar, for the NICFC and MRI Scanner Appeal.  We will keep you posted as events are arranged, particularly teams in the Belfast Marathon.  So thanks once again for all your support, Oscar is doing GREAT right now which means we are doing great!  So many people continue to tell us what an inspiration he is to them, especially on Twitter @Wee_Oscar, and someone has suggested we enter him for the UTV/U105 Young Person Award for showing bravery in battle against an illness, so watch this space!

1 comment:

  1. Martina Miskelly13 March 2012 at 22:36

    Oscar is a wee fighter Leonna, you are all in my thoughts and prayers. Take Care. Martina