A patient’s perspective …. Nicky’s story

My drive for supporting blood cancer started in November 1998, three weeks after my 27th birthday.  One evening at 8.30pm my obstetrician called and wanted to see me due to an abnormal blood test from earlier that day.  I was 15 weeks pregnant with our first child.  I had been living in Auckland for nearly 2 years with my husband, who happened to have just flown to Sydney for business that afternoon.  We had only just returned from a trip to Melbourne to announce we were expecting our first child never knowing what would unfold over the coming weeks.  Other than being told my white blood cells & platelets were extremely low I was unaware of the reality of the situation, my only concern was for my unborn child. With my husband still in Sydney I had a late appointment with my obstetrician, who advised me I needed to be at Auckland Hospital for further tests first thing in the morning.  All the while unaware that I could possibly have cancer – I was young, fit and super healthy. My mum and husband flew across the Tasman to be at my bedside as I was undergoing a bone marrow biopsy.  We all held hands and sat and waited.  My GP had called my husband before their flight took off.  He suggested Chris make immediate plans to get me home, having been told the worst case scenario was Leukaemia. He suggested I needed the support of my family and friends at home.  The Doctors came in and broke the news.  It was indeed Leukaemia (Acute Myeloid Leukaemia). A massive shock!  We all went home and cried the night away.  The next morning involved a platelet transfusion to ensure I wouldn’t spontaneously abort in flight.  Within 24 hours of the diagnosis I was homeward bound, not knowing what would lay ahead.  Leaving all our possessions other than what we could fit in a suitcase for now. The next few weeks were a whirlwind of emotions, pain and worry.  So much information, so much to take in, with the knowledge we now possessed on blood cancer and the complications that could arise along the way.  It was enough to tear the hearts out of our entire collective family.  But we had to put our trust in Dr Jeff Szer and Dr Marissa Grosse and the team at Royal Melbourne Hospital.

Within a couple of days we bid our 1st (unborn) child goodbye, as a termination was the advice we were given to allow me the best fight. And there was no history on the outcome of chemotherapy on such a young foetus.  My husband made it clear there was no discussion needed, hopefully we can make more babies but we couldn’t replace me. So it had to be done. And so the battle began!

A few days later chemo started.  During this time I took part in a trial which involved not only my Chemotherapy drug Idarubicin but also very high doses of a Vitamin A based drug Vesanoid, along with a large number of bone marrow biopsies. After just over 3 months, 2 rounds of chemo, and all that goes with it in terms of bone marrow biopsies, over 20 blood/platelet transfusions, a few minor procedures & a general, 2 catheter insertions into a main vein near my heart, and many more harrowing events plus the daily highs and lows waiting to see what each day may bring to your blood count – I was in remission.  We were now able to piece our lives back together that had been put on hold for nearly  4 months. I was to continue the trial and have bone marrow biopsies over the following 2 years.  This I felt, although harsh, was the most accurate way of keeping track of where I was at.  I never doubted I wouldn’t make it, although I did live in constant fear and terror of the unknown on a daily basis. I felt sheer frustration at times seeing my daily blood counts and just willing them to rise, when often they just didn’t.

I did however have to show enormous courage to help my family through this incredibly difficult time in our lives.  My tears were saved for late at night as I was determined to spare my family any more heartache and worry.  My husband was my rock at this time, and he spent many nights over the 3 months sleeping in a recliner chair beside my bed.  My father would provide constant emailed updates to all our family and friends and was determined to see me on a daily basis no matter what business meeting or trip tried to get in the way.  Even with a mild cold he would stand on the balcony on his mobile phone and speak to me through the window, just so as to be sure he didn’t miss a day.  My mum was also in constant contact and visited regularly whilst holding everyone together.  I was without a doubt surrounded by a lot of love from my entire family.

Two years later we were allowed to try for the family that we had longed for.  After another very stressful 12 months or so and the trials and tribulations that went with trying whilst not knowing if I could still conceive, Chinese herbs and all sorts of things, the day finally arrived, I was pregnant.  In December 2002 we had our first child, a son, Spencer.  Nineteen months later our baby girl arrived, Mimi.  Then three years on in 2007, to complete our family, a baby boy, Nicholas.

My experience with cancer has never left us, and is still crystal clear despite the lapse of 16 years in November.  It is a constant reminder of how precious life is.  My husband and I have been together nearly 22 years, he has been incredibly devoted and we have a very special bond, that I’m sure is only shared by those who have been through the darkest days together and come out fighting.

Nicky Stoupas

Nicky is a friend of Snowdome Ambassador, Gina McNamara.