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Rory Gardiner's Webpage

17, May, 2010

Monday 17th May 2010


This morning Sean, Sam, Rory and I saw our new baby for the first time.  It’s only 2cm long and 8.5 weeks old.  It’s heart was beating strongly and rapidly, and it had a definite human shape.  I’m pregnant!  My due date is the 23rd of December.  I still have four weeks to go until the end of the first trimester so there is a risk of miscarriage.  We hope this baby is as strong as our other children and hangs in there.  I have been feeling sick and exhausted for the last month.  I can function in the morning, apart from the struggle to eat, but go downhill until tea time when I have to force food down (and have a poor tolerance for meat).  I am in bed most nights at 7pm, and asleep by 8.30pm.  I am shocked and horrified at how debilitating it has been.  It was not like this at all with the boys. 

I know a lot of people are not going to understand why we decided to have another child, and think it unwise given our situation.  I will try and explain.  Sean and I never completely discounted having more children.  After Rory was born I suffered post-natal depression.  When I came through it the last thing I wanted was another baby.  As the boys grew up, and Sean and I balanced work and family, we periodically talked about adding one more.  We always came to the same conclusion, two was all we could manage, and afford, if we wanted to give them a great life.  When Rory was diagnosed with cancer it rocked our world, and displaced much of what we thought and believed.  The lives of our children, which we had thought were safe and secure, were not.  Almost everything in our lives fell away as we fought with Rory for his life.  It was a long and difficult nine months. 

After Rory’s treatment was complete we had to try and reassemble our lives, to create a new normal, as individuals, as a family.  We are not the same people we were 15 months ago, it is impossible to go back.  For me discovering who I am now has been hard.  Sean was able to return to his old job, gradually increasing his hours as our family life allowed.  Hunting is what he loves, and what makes him whole.  I could not return to work at Whangarei District Council.  I could not work the hours they required, or fulfil the requirements of my position.  I also couldn’t abandon Rory.  He couldn’t have gone back to school unsupported.  We had also made a decision to send the boys back to Dargaville Primary, a school where we knew they would be cared for, safe, secure, and happy.  I am the boy’s primary care giver.  I always have been.  I am their mother.  I had to continue to follow Rory.  It was the only decision.  But what was I to do later in the year as he grew stronger, became more independent, and we secured Ministry of Education assistance for him at school?   I will still have to put considerable time into supporting Rory; working with his teachers to ensure he gets what he needs to maximise his learning, taking him to Starship several times a year, organising and supporting his physiotherapy, administering medication, and fighting the paper war.  The next four years will remain a period of uncertainty as we stare the possibility of relapse in the face.  How could I start something in this environment?  It was clear I would have to tread water for a while. 

Rory’s diagnosis with cancer made us realise how small our family was.  If we lose Rory it will tear a huge hole in our lives, and leave Sam without a sibling, alone in the world when Sean and I pass away.  If Rory wins and survives he may be left with serious cognitive deficits i.e. he may never drive a car, complete any higher education, or hold down a job.  He is likely to need support his whole life, from Sean and I, and then Sam.  This is a heavy burden for Sam to carry into adulthood, knowing he will have to look out for his brother as well as himself.  Sean and I considered we had two choices.  We could either put our time, energy and money into Sam and Rory, giving them a great life, and leaving them as secure as we could, or investing in another human being who would love them unconditionally, who would share the burden, and provide extra glue to hold their unit together.  There was one window in front of us for another child, given the necessity to tread water, and my age.  We had to decide whether to utilise it. 

It was a difficult decision and one we didn’t make lightly.  We discussed it with the Neuropsychologist at Starship, our parents, and the other mothers on the Medulloblastoma international email group (as they are the ones who truly understand our situation).  We decided to try, and thought it would take a while, or may not happen at all, given my age and the trauma we had been through, but it happened almost instantly.  We were shocked.  We are pleased, but afraid.  We are conscious of the reality of time, energy and money.  Will we be able to cope with an extra child, will we be able to provide for all three children and ensure they have great lives, will we be able to continue to provide Rory with the support he needs, what will we do if the cancer returns?  Sometimes the unanswered questions are overwhelming.  We consciously take a deep breath, slow down, and take things one small step at a time.  We have to believe we will cope.  We have always coped.  Our boys lead rich and happy lives.  We have to believe in ourselves and trust in our decision. 

The pregnancy has derailed me a bit.  My main mechanism for coping with stress and trauma is to do.  Feeling sick and tired has hampered my ability to do, and made me more emotional.  I have been to see a Counsellor to help me through it, and through the fallout of Rory’s diagnosis and treatment.  Most mothers crash at some stage after their children’s diagnosis, many at the end of treatment as the immediate fight for life is over.  The Counsellor’s are trained to help us put ourselves back together, one little piece at a time.  I am trying to figure out how to repair so I can be whole again. 

It has been an eventful few days.  On Friday Rory did a wonderful piece of descriptive writing on a goldfish which he read to Principal Mr Russek, and received a principal’s award sticker.  Sean and I came to an agreement on the sale and purchase price of a property we have  made an offer on in Inglewood.  We have two weeks to get everything in order and go unconditional.  On Saturday morning the rain held off for soccer at Kensington.  Kamo Black, won against Marist 8-2.  The boys worked well as a team, and Sam played a more aggressive attacking game scoring two of the goals.  It was great to see some of his old fire return.  He received the player of the day award, certificate and voucher.  The afternoon was spent packing (are we at the bottom yet?) and Sean and I made another trip to the storage unit.  Rory threaded the Beads of Courage from the April trip to Starship and completed his 8th string.  He now has over 800 Beads of Courage, earnt over the last 14 months during his battle against cancer.  It is as breath taking and inspirational as it is shocking and tragic.  On Sunday afternoon we drove out to Ngahau for a walk on the beach.  We were the only ones there.  Sam went for a swim (he’s braver than me), Sean helped himself to a feed of Tuatua, and Rory and I fossicked along the beach.  He collected a beautiful shell.   I collected a pocketful of fishing line and two dive knives. 

We were late to school this morning, arriving at morning tea, having stopped for the scan, and four other appointments.  Kody is away today with a chest infection so Rory has been playing with Adam and Brody.  He has been working alone or assisted by Miss Hallett while I watch and continue with the paperwork out the back.