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Rory Gardiner's Webpage

06, Dec, 2009

Sunday 6th December 2009


 

I have failed Rory twice this year.  The night he came out of surgery to remove the largest brain tumour, and today.  I remember going into the recovery area like it was yesterday.  It had been a long day.  Rory had been in surgery for over six hours and I was sitting outside the glass entry doors in the waiting room trying to stay calm.  The nurses let Sean and I in before they had Rory's pain under control because they knew we were outside and anxious.  Rory was lying on the bed moaning and crying "my head, mum my head".  He had several iv lines in him, a catheter, a drain from his wound, and a bandage on his bloody head.  He was obviously in pain.  When I got to him I held his hand and talked quietly to him to let him know he wasn't alone and we were trying to help him, but his continued distress caused a physical response in me I couldn't control.  I felt like I was going to be sick, and my knees started to buckle.  I knew I was going to faint.  I tried to breathe through it but it kept returning.  One of the nurses led me away to a spare bed.  Sean stayed at his side.  I refused to stay away for more than a couple of minutes, fighting my way back.  I felt ashamed I couldn't control the fear.  I couldn't overcome my feelings to be his rock.  And it happened again today.  

One of the things parents of cancer kids say is to not wrap them in cotton wool, to let them go out and experience the world, knocks and all, but this is very hard to do.  When you have come so close to losing them it's hard to let them take risks.  Today we took Sam, two of his friends (Conor and Matai), and Rory and his friend Kody to Adventure Forest (www.adventureforest.co.nz , an aerial obstacle course in a pine forest on the outskirts of Whangarei, for Sam's birthday.  We all received a safety briefing and basic training, then made our way around the practice course seven foot off the ground (wearing harnesses and helmets).  The boys picked the technique up quickly and showed no fear whereas Sean and I had to encourage Rory around a little at a time.  The gear was heavy and he couldn't operate the carabiners to clip himself onto the lines.  He struggled to hold the lines and walk along the wires unaided due to his poor co-ordination and left sided weakness.  At one stage he went to pieces and cried.  I wouldn't let him give up, getting gruff with him.  Eventually he pulled himself together and tackled the last half, growling Sean and I to leave him alone.  Then he was keen to get up into the tree tops. 

Heights is my number one fear.  I watched Rory ascend the ladder to the 18 foot course and I was right after him.  Sean was in front, clipping and unclipping Rory to the wires.  When I got onto the first platform and looked down my fear of heights was multiplied by my fear of losing Rory and I struggled to breathe.  When he stepped out onto the single log walkway I only just kept myself calm.  He made it to the second platform, then started across the net bridge.  Only my need to follow him got me across the log and into the net.  When we got to the third platform I was feeling sick.  To cross we had to step on an Indiana Jones style bridge with individual swings (logs on the end of ropes).  Each swing swung independently three feet apart.  I didn't think I could tackle it and voiced my fear to Sean.  Rory heard my words but stepped out onto the first swing anyway.  I froze.  He felt my fear and began to get upset.  For a couple minutes I couldn't do anything even though I was right behind him.  I had to take a couple of breaths, and steel myself to move to get him back onto the platform.  We had to retreat the way we had come, and I only just made it back across the single log.  I managed to make reassuring noises to Rory and he was calm.

Sometimes it all seems too hard.  Living with cancer requires more than I have.  What if I am not strong enough, or don't have the endurance required?  The hurdles keep on coming.  While some are small, many are large and difficult to clear.  And it's not just a case of getting over them, I have to do it with style.  I have to be calm, patient, strong, positive, and in control.  This is hard to do when I look at my lovely son, my baby, and watch him struggle, see his isolation, and feel how fragile he is as he holds himself putting one foot in front of the other.  Sometimes I fake it.  I often hate the world for what it has done to him.

Lately I have had several people ask what we have done with the money which has been raised.  This question always takes me by surprise, I guess because the answer is so obvious to me.  I forget most people aren't living our life so wouldn't immediately know.  When Rory was first diagnosed with cancer in March our lives stopped with one sentence "there is a tumour in his brain".  Our sole focus was coping with the diagnosis and getting Rory through the surgical phase of his treatment.  This lasted over two months.  Meanwhile life went on.  There was still a mortgage and bills to pay, we needed to put food on the table, plus pay for astronomical phone bills, and considerable mileage.  During this time neither Sean or I worked.  During the two months of radiotherapy I stayed with Rory in Auckland, travelling down and back every week.  I tried squeezing in a few hours work during the day but Rory needed continual care, entertainment, and I was determined to persist with his schooling.  Sean worked part time as he had to care for Sam at home in my absence.  Rory had a month off between radiotherapy and chemotherapy.  Sean and I both managed to work a little, but one of us had to be with Rory at all times.  We also made the decision to spend a week with my family in Taranaki to resting and draw strength for what was ahead.  Things went downhill during chemotherapy.  I managed to get through the first cycle largely on my own but it was too tough.  Rory was so sick, and he needed me round the clock.  I was shattered.  I knew I couldn't complete the last three cycles alone so Sean stopped work and brought Sam to Auckland.  We have only recently returned home. 

When your child is diagnosed with cancer you don't think about how you are going to survive financially.  You are shocked and consumed by the diagnosis and the first stage of treatment.  You live off your savings.  It's not until there is a lull in the storm that you lift your head up and do the maths to try and figure out how long you can survive.  Necessity forces one parent back to work in a reduced capacity, although it is hard to be away and concentrate on the tasks at hand.  The other parent soldiers on alone.  Both march toward breaking point and exhaustion.  Eventually you stop caring about where the next dollar is going to come from.  It doesn't matter when your child is fighting for their life.  When it runs out it runs out.  You will cross that bridge when it happens.  WINZ makes a contribution but it is minimal.  You live as frugally as you can, but there are additional cancer related costs; additional therapy, clothing and footwear (to try and combat the side effects), prescription medication.  And when Rory was at rock bottom, almost destroyed by the treatment, I bough treats to lift his spirits and pass the time; DVDS, books, lego, play station games.  We have been fortunate to have had our community behind us.  Their generosity has allowed us to focus on Rory, and stop from hitting rock bottom.  We are very grateful. 

The future is a big unknown for us.  I will have to be at Rory's side for quite some time.  He needs help to get around, and will need physiotherapy into the immediate future.  He will not qualify for a teacher aide at school.  He will be a year behind, and is likely to experience learning difficulties due to the treatments he has received.  The gap is likely to widen with time.  One third of all childhood cancer survivors have moderate to severe side effects as a result of their treatment.  Rory will need me in the class room.  I will likely have to resign from my job.  We also live with the terrible question ....  will the cancer return?  A relapse will cause our lives to implode again.  Earning sufficient money to keep us afloat is a side effect of cancer people do not appreciate. 

If it all sounds like doom and gloom it is definitely not.  We have Rory with us, and today on the aerial obstacle course he did much more than I ever thought he would.  He did not let his disability or fear rule him.  I was very proud.  I am grateful for his grasp on life.  I am grateful for all the wonderful people who part of our lives. 

It has been a busy three days.  The boys and I used up the last of the Child Cancer Foundation movie tickets to see Where the Wild Things Are on Friday.  It was my idea to see it as I remember enjoying the book as a child.  It was a bit of a disappointment as it was slow and there wasn't much substance to the story.  Rory was up at 2am on Thursday and Friday nights with sore legs, likely as a result of the blood transfusion on Thursday.  Sean and I administered Pamol and Tramadol and rubbed his legs till he fell asleep.  His weight continues to decline.  He is now under 22kg in his pjs.  We have been trying to get him to eat some high fat foods but his stomach rebelled on Friday night and he had a large vomit. 

Yesterday (Saturday) we drove across to Dargaville for the Christmas parade.  It was good to catch up with old neighbours and friends.  We positioned ourselves with Trudi, Kody and Ben outside Nana Seymour's florist shop.  We enjoyed the floats and children were scrambling in all directions for the lollies.  After the parade we walked down to the Community Expo at Taha Awa gardens to collect Matai (and his gear).  We sat on the grass and ate sausages in bread for lunch in the sun.  We picked up Conor (and his gear) on the return trip and headed to the Whangarei Aquatic Centre.  The boys enjoyed the wave pool, riding the hydroslides, and surfing on the giant boards.  I sealed Rory's Hickman line in a plastic bag then glad-wrapped his whole upper body to protect it from the water, before pulling on a rash top.  He and I waded into the shallows and he got wet to the waist in the waves, and had a ride on the family hydroslide.  His time in the pool didn't last long.  He got bored, frustrated and cold quickly.  He spent much of the time sitting on the side watching others.  It worries me this is going to be his position in life, on the side line.  I've read a lot of the medulloblastoma children end up this way.  Their peers, siblings, and life continue on at a speed they can't keep up with.  I'm determined to do all I can for this not to be the case with Rory. 

The boys spent the remainder of the night at home playing on the trampoline, shooting each other with the Nerf guns, riding the bikes, and competing against each other on the Playstation.  We sang Happy Birthday and Sam blew out the candles on his chocolate cake.  They kept relighting smoking us all out.  The boys rounded out the night with a Star Wars DVD.  Kody slept in Rory's room, and Sam and his mates spent the night outside in the tent.  It was a 6am start this morning and pancakes for breakfast.  The boys had a game of softball before we headed out to Adventure Forest.  It was a very quiet afternoon after the boys went home (thanks Greg for acting as return bus driver).  Rory has continued taking the Cotrimoxazole (antibiotic to protect his lungs) during the weekends.  An article on his progress appeared in Saturday's Taranaki Daily News paper (there will be a link to it on his website).  I continue to write EVERYTHING down in a daily notebook.  He currently has a wiggly baby tooth (his first) which we hope will find its way to the tooth fairy in the next few days.