16 February 1999 13 November 2001

Robbie was born on 16 February 1999 and is the precious first child of Michelle and Lee. He is a loving big brother to Amy (born 9 September 2000), Caleb (born 28 January 2003) and Luka (born 30 July 2005).  Robbie was a gentle, happy little boy who adored vehicles, especially "hot cars" (hot rod or sports cars). He enjoyed playing in the sandpit and riding his trike.  He had lots of fun at playgroup and music.  At home he liked doing puzzles and reading books.  He adored his little sister Amy and was very protective of her.  We are so thankful that we had him to share in our lives.  We have wonderful memories of our time together.

Our nightmare began on Sunday 26 August 2001.  Robbie had just returned from a walk in the pushchair with his Mummy and dog Gretzko.  He liked to get out at the letterbox to check the mail and then walk up the driveway.  Some how while the front gate was being opened Robbie fell backwards landing on the back of his head on concrete with the pushchair on top of him.  I took him to the doctor worried about concussion and a split lip.  They put a plaster on his lip to hold it together and gave him the okay to go home.  The next day at playgroup he rode up to me on a ride-on and I thought to myself that his eyes looked strange but convinced myself that the plaster on his lip made it appear that way.  The next day I again thought his eyes just weren't right and when I got home from playgroup I took the plaster off his lip to see how his eyes looked.  One eye was definitely squint (turned in) and so I rang the doctor to make an appointment for the next morning, Wednesday.  I felt very worried as a mother feels when something is just not right with your child.  I thought something had been damaged in the fall on the Sunday.  The doctor said that his eye should not be like that and sent me straight to Starship Children's Hospital for examination.

I had to wait there from 11am until 4 pm for Robbie to be seen as Robbie did not appear to be very sick and therefore kept being put back on the list while sicker children were seen first.  Little did we know Robbie would be dead in just 10 weeks.  Robbie spent the waiting time playing on the play equipment, running around and eating hot chips.  The neurosurgical registrar eventually saw Robbie and said that he wondered if an optic nerve had been trapped when Robbie fell with a possible fractured skull.  To me as a Mum this was bad enough.  They wanted to do a CT scan but Robbie was too scared of the equipment to proceed without a general anaesthetic.  As Robbie had eaten we stayed in over night for a CT scan the next day.  He had to wait until mid afternoon with no food or drink which was very difficult for a 2 year old to understand, and then he finally was put under anaesthetic for the scan to take place.  They rang Lee and I during it to ask if they could have permission to put a dye through to see the scanned area clearer.  My heart skipped a beat as I knew they were looking at something serious now, but never in my wildest nightmare could I have imagined that what ever was wrong couldn't be cured.

Later that afternoon Lee and I were very bluntly told that our precious son had a brain tumour - Infant Medulloblastoma and that it is inoperable and he will die.

The ground dropped out from underneath me.  I wanted to wrap Robbie up in my arms and make everything alright.  I could not accept what was being said.  How could this lovely little boy playing in front of my very eyes be dying?  We were given that weekend to take Robbie home to have a fun weekend together.  We cherished every moment sharing Robbie with family and friends at the zoo, at Monterey Park (train models and train ride), at Grandmas and at home.  Robbie was on Dexamethasone to reduce the swelling and pressure which was affecting his eyes.  He rubbed his eyes a lot, blinked a lot and his balance appeared to be affected as he had to walk with a wider distance between his legs, otherwise he was just a normal little boy.  We made a video and it is such a treasured captured piece of time.  Robbie was never to walk again.

After re-entering Starship an MRI was taken and the decision to debulk the tumour was made. Robbie was in hospital for 6 weeks and things did not go his way as the medical team hoped that he would have 3-6 months to live.

 Unfortunately the surgery took away Robbie's fight and strength.  He was left feeling weak and with little movement in his left arm and unable to find strength to walk.  His head wound started to leak spinal fluid after 10 days and re-stitching did not stop this.  It was decided to place a lumbar drain in Robbie's back in the hope that he would start to drain spinal fluid away naturally himself.  He did not and the fluid built up in the wound area at the back of Robbie's head.  He then got an e-coli infection in the spinal fluid causing Meningitis.  The drain was taken out and Robbie continued to decline.  He was sleepy but agitated.  It was decided that Hydrocephalus was a problem and a shunt was then put in.  This gave Robbie a couple of days of feeling a lot better without the pressure on his brain.  Unfortunately the pain from the tumour which had spread down his spinal cord and through the lining of his brain began to take over.

After several days of only having Pamol, Voltaren and Phenergan to help him I insisted on more pain relief for Robbie. He was given Codeine and then we got him onto Morphine. His chart was misread and he was given 5 mls instead of 0.5 mls of Morphine.  He had what they thought was a seizure but ended up being a morphine overdose requiring reversal medication.  His breathing started to be affected by the drugs and tumour growth.  Lee and I decided that we wanted to take our little boy home and have as little medical intervention as possible.  Robbie hated being in hospital and every treatment was like torture to him as he did not understand why they were doing these things to him.  I will never forget the look in his eyes which said "Mummy, why are you letting them do this to me?"  He loved being at home with his family and friends around him.  I will always remember the first time he saw his little sister Amy again.  He was sitting on a lounge chair and Lee brought her in the door.  Robbie took one look at her and said "Mamy come sit with Bobbie for big hug!" I took a photo in my heart.

Robbie was eating very little at this stage, processed cheese and his "Grandmas drink" (blackcurrant juice), plus the milk diet replacement drinks prescribed by his dietician.  Robbie had extreme nausea and vomiting occurred many times each day.  But we had a birthday party in his room twice, as he had missed his sisters 1st birthday and his cousins 5th birthday while in hospital, and Robbie amazed us each time by having a piece of yellow butterfly cake and a lolly each time.  Cake and lolly was the last thing he would ever eat himself.  A feeding tube was put into Robbie's stomach and he was fed by tube from then.

When Robbie first came home he loved to be taken on car rides and when-ever he said he felt like it we'd just get in the car and go.  Down to the marina to look at boats and over the Harbour Bridge were favourites.  As his pain and nausea increased Robbie stopped asking to go in the car.  As I carried Robbie inside from what was to be his last car trip a rainbow was up over our house and it was the last thing outside that he would ever see.

Robbie loved to have books read to him day and night and all his family took turns reading his favourite books.  He also loved watching videos, Pingu and Spot were popular.  Robbie's breathing became increasingly effected each day and he started to sleep a lot more.  All the food drink we tried to give him started to give extreme nausea and vomiting.  This caused Robbie immense pain, even with increased morphine, to change his clothes and bedding.  It was the hardest thing in the world for me to not feed my son but it was the kindest thing to do at that time.

Robbie had a whole day before he died that he did not sleep at all, which was very unusual, he chatted away to everyone, listened to music, shared books and watched videos.  He even joked with Lee and I that the large cotton bud that we used to moisten his mouth was a lolly-pop!  Lee and I had been sleeping in his room for several nights as we sensed the time was coming soon for Robbie to die.  On the evening of the 12th Robbie told me that he liked his Thomas the Tank Engine light shade and then watched a Spot video.  He then had a seizure which he never recovered consciousness from and developed end stage breathing.  Lee and I sang and talked to him all night and through the next day.  I so much wanted to pick him up and hold him but I was scared of giving him pain so Lee and I were holding him on a bed as best we could.  A visiting nurse said he wouldn't have worse pain being picked up.  That was what he'd been waiting for. As I held him in my arms while sitting on a bean-chair in his room and Lee held his hands, a look of immense peace came across his face and Lee smiled and said how happy he looked.  I sang his favourite Rainbow, I Love You and Skinnermarinky songs, told him I loved him with all my heart and soul.  Within minutes Robbie died ever so peacefully (5.05pm Tuesday 13 November 2001).

We miss him more than words can ever describe. We wish our dear Robbie peace, love and rainbows as he flies free as a butterfly.

I would like to share a poem in loving memory of Robbie;

Robbie our dear and gentle boy
How you filled our life with joy
Giggling laughter filled our little place
As we gazed in awe of your gorgeous little face
Twinkling green eyes and a brilliant smile
Invited all to chat with you a while
A loving big brother to Amy is how we remember you
Lots of hugs, kisses and calling to her "Mamy come too"
You adored your little Amy and made her squeal and laugh
Especially while splashing with her in the bath
We watch Spot, Teletubbies, Suzie, Hi-Five, Bob the Builder, Thomas the Tank Engine and Kipper
And we remember you watching too in your blue Winnie the Pooh dressing gown and slippers
At home your toy cars were never far away
You even left one for Mummy in her jewellery box where you last played
Playing rough and tumble with your Daddy after work most days
You rolled, jumped and laughed together as a favourite game to play
Books were something that gave you great pleasure
The time reading with you darling is time we now treasure
Your pets Misty the cat and Husky dogs Dushka, Gretzko and Shayd
Had fun with you Robbie as you laughed and played
Every day rain, sun or hail
You loved to use your new pedalling skills to ride down to get the mail
Ride-ons gave you great delight
Watching Robbie whiz by was an awesome sight
A treasured outing for you was to go with Grandma and Grandpa on adventures
You'd come home grinning from ear to ear excitedly sharing all you did there
Playgroup, Mainly Music and coffee group kept us busy from week beginning to end
Lots of fun playing , dancing and eating were shared with your little friends
We had great fun at the playground
Climbing, jumping, swinging and running around
You loved to spot a passing truck, motorbike or car
While Amy, Mummy and you went for walks in the pushchair near or far
"Boats 'n' water" you'd exclaim when sighting the marina filled with boats
We remember you cozy in your woolly blue winter hat and big blue coat
We cherish the memories of loving hugs, kisses and singing of songs
We know you were cocooned in our love for you so strong
We'll never forget your little call "Labu" at night
As we called out "Love you Robbie" and turned out the light
We wish you peace, love and no more pain
Until our dearest, darling Robbie we shall meet again.

Forever your Mummy, Daddy, Amy, Caleb and Luka xxxxx

 

 
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