…..a very good place to start.
Planning to fly out to Bali to attend a wedding on the 18th July 2012 (Sandi’s Birthday!!!) and for a bit of R & R.
But, I’ll just wind the clock back a couple of days…….
Saturday 14 July 2012 Paul presented at the local pathologist for routine blood tests. Sunday morning 15 July around 9.00am the phone rings. Sandi answers the call to our family GP. Little did we know that phone call was about to change our life as we knew it forever. Paul he says, your blood tests have shown up some anomalies that are not good. You need to see a specialist straight away. “No can do” says Paul – we’re off on holidays to Bali I’ll do it when we come home. No way says the doc I would like to get you into hospital today.
Bottom line was an appointment was made for Paul at 9.00am on 17 July 2012 at Royal Perth Hospital to see one of Perths haemotologist associated with the marrow transplant team. Whilst we were waiting in the waiting room, the nurse said to Paul – you have a bone marrow biopsy at 10.00 don’t you. No, no he says just here to see the doc. End of the day the nurse was correct so somewhere between 9.00am and 12.00pm Paul went through an hours visit with the doctor who talked about the possibility of some unknown bone marrow disease called myelodysplastic syndrome (MDS which is a disease of the bone marrow for which there is no cure apart from a bone marrow transplant). Little did we know at that point in time that this very unknown and unpronounceable word was about to become a driving factor in our future.
Likewise to say we found ourself back at home cancelling the scheduled holiday and instead we were facing a week on a rollercoasster ride of emotions (and those emotions have not stopped!!!!!!)
Back to RPH the following week for some more blood tests and the preliminary results of the bone marrow biopsy (BMB). Results – not good more than likely MDS but will need to get the results in from the Chromosome testing to absolutely confirm and to understand how aggressive the disease was.
Several weeks later we received almost the worst case scenario. Definitely MDS (Intermediate 2) with unfavourable prognosis factor of the minus 7 and plus 8 chromosome abnormalities. We will start you on some growth factors (G-CSF/Neupogen and EPO) to help stimulate the growth of your own blood cells the doc (Julian Cooney) said. This however, is only like putting oil on a tired engine and we do not know how long the oil will keep the engine ticking over, so we will start the process of looking for a bone marrow donor.