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Alara - Our Alara
 
On the 28th April 2000, our little Alara came into this world. From that moment she gave us nothing but joy and pleasure in her all too short life.

As a baby she was everything that the so called angelic baby was meant be. Alara hardly ever cried and she slept through the night from an early age.

She was everything we hoped for and more and the perfect little sister.

There was no indication of what lay ahead for her and there was no sign of that famous, impish personality that we grew to know and love and usually experience first hand.

When Alara was about 2 1/2 she started to cry in the night and she began to complain of a pain in her chest. Usually calpol did the trick and we thought nothing of it.

However after a visit to the doctor and then the hospital on the 15th May 2003, Alara was diagnosed with a disease we had never heard of, let alone understood.

The disease or word Neuroblatoma came into our world. We then began a journey of at first hope, some joy - then stark reality of the inevitability of the outcome which sadly unites us all today.

But what a journey!

I will try to give you all a brief outline of Alara's short life from a blond haired three year old to the little girl with a hat on who became so special to us all.

Her initial treatment involved a newish protocol, which lasted around a year and involved many tough courses of chemotherapy; then an operation; some more chemo, a bit of radiotherapy followed by oral chemo. 15th months later there was no evidence of disease - Alara who spent most of the time watching Brum and Noddy had managed to win her first fight against her disease.

She had begun to develop her own little personality and her positive attitude towards everything was beginning to become evident.

Then followed 18 months of normalcy with regular check ups and no real problems she visited Disneyworld in Florida - she likened it to Ward 27 with sunshine, Lapland where she crashed a skidoo; she went to school and really was a normal little girl.

In November 2005 her little brother was born and Alara was thrilled - this elation was short lived as a month later she relapsed and we realised that our hopes that Alara would be the one who did defy the odds were shattered.

Julie and I realised that our perfect little girl's time with us was limited.

It was from January 2006 where Alara's personality shone through and the now legendary put downs that we have all had to endure came to the fore.

Alara has spent the last 2 years or so in remarkably good shape through a combination of treatment, her bravery and the support of all her family and friends.

It became apparent that Alara only really responded to chemotherapy and it was amazing how quickly she did so. In this time Ward 27 has become a home from home with no fears or major complaints when she had to go in. She also felt a sense of importance as one of the longer serving inmates!

"Dr Visser has another plan" she would say - "you would think he would get the right plan first time and save me all this treatment! "I'm getting fed up of his flippin' plans!"

Her relationship with "Dr Skinny", as she called him, had grown to someone she liked and, most importantly of all, trusted.

So apart from a brief sojourn into London where she had radioactive treatment last May, Alara has been in and out of Ward 27 for the last two years or so and to be fair 95% of the time as a day patient.

When she was in she did her utmost to negotiate her own discharge - often getting the better of consultants who succumbed to her well reasoned arguments and persistence.

Many a days ward round started with 'and how are you today Alara?'

'Better if you let me go home today' she would reply. The marker was laid down.

Alara did know when she had to stay in and then she brightened up the ward with her own unique sense of fun and never really complained too much. She became famous for the films she watched again and again and again - Cool Runnings, Sound of Music, Mary Poppins, Charlie and the Chocolate Factory and of course the favourite Chitty Chitty Bang Bang!

Most times she would go home in good shape and get on with her life, running about, laughing, joking and most of all brightening up everybody's life.

We all have our favourite Alara stories and most people who knew her have probably been brunt of one of her comments at some point:

Ill relay a few favourites - she took great pleasure in commenting on peoples attire 'what have you got on' was commonplace, 'you don't match' or 'you wore that yesterday'.

She even told her doctor his trousers were too short and he should go to "High and Mighty" - the thing was, usually, no actually, she was always correct.

She was a little girl who said things to people that others were thinking but dare not. She always did it in a way that caused great humour and this meant nobody could take offence. She wouldn't have bothered too much anyway!

At school a new electronic white board was delivered - she had to leave the classroom to get bloods done - on her return she asked her teacher if it was working yet? "No Alara"! As Alara returned to her desk she commented - "it's not just for looking at you know!" She got away with that one too.

Despite her limited attendance at school she was hugely popular, liked by everyone and everywhere she went people took to her and loved those brown eyes and cheeky grin. Funnily enough Alara was not really worried if she was liked or not. She did not like fuss or attention.

She got on with her own life, coped and dealt with circumstances with a maturity and sense of fun which people well beyond her years could learn from. She was always thinking of her family ahead of herself.

She would often say 'sorry' for putting US through her illness. She always said that she was scared of nothing and I believe that this strength contributed to her tolerance of the endless treatment and her resilience throughout.

So, what did Alara like most? And this is in no particular order except the last one:

She played in her bedroom endlessly colouring, painting, cutting out, playing schools with her sister, Enola and watching telly when she felt poorly.

She loved stationary in all forms - her favourite shop was Staples and you can never have too many pens pencils crayons bits of paper, etc. Alara had a shop full but on her visits to any shop she would always negotiate more!

She would write stories usually about her ponies or her mum or sister or grandparents. Sometimes Dad was even mentioned; sometimes good and sometimes bad.

She loved her ponies - Silver and Twinkle and often said how lucky she was to have them. She was also an accomplished little rider although not surprisingly she left the mucking out to others - "not my job" she would say.

If she wasn't in her bedroom, chances are she would be at her grandparents house. She never needed to be invited because it would be 'ok' she would say and of course it always was!

How she enjoyed her times there:

She particularly enjoyed Sunday Dinner, which she rarely missed and she commented on how her granddad's culinary skills had improved over the years. This was her time with great grandma (choc choc grandma as she would call her and who sadly passed away earlier this year) when they would discuss the weeks events.

Alara also managed to sabotage any football on the telly swapping for one of her favourite DVDs - and then she would make her granddad watch it with her. He was always putty in her hands.

She spent many happy days with her grandma probably doing very little, just laughing and joking, planning and scheming - great times for both although according to Alara, Granma would panic over the slightest thing -much to Alara's amusement!

She had a unique bond with her brother and sister. She played with them both on their own level - whether it was making a mess with her brother (others did the tidying up again, Alara did not do tidying up) or playing with Enola with laptops, mobile phones ponies; making fun of her sister was a favourite ploy - this usually culminated in Enola storming off in a huff. When peace was made she would return for more.

Enola said to me last week that I didn't understand how much they did together and how much she missed her already. Mackenzie just misses her.

But most of Alara's times, good and bad were spent with her mum by her side. Alara's, loyally and love for Julie was immeasurable - like a double act they spent hours, at home, in hospitals, horse riding, travelling to new places - laughing, joking and playing together.

Nothing Alara asked Julie to do was too much and I think Alara was nearly the perfect patient although she expected high standards. Her mum was up to the challenge and Julie often knew if Alara was going to become ill hours before it happened.

They enjoyed doing everything together whether choosing her considerable wardrobe - both have the approach you can never have too many clothes, although with Alara it must have been close - or watching telly: Coronation Street and Gavin and Stacey being the favourites.

A bond that very few of us ever have or develop in a full lifetime.

There are so many magical memories of our all too short times with Alara and a few sad times - I cannot honestly recall a single time when she made me angry or was naughty. Mischievous yes, naughty no.

Throughout her treatment Alara was cared for by many people in many hospitals, who all without exception comment on the inspirational little girl with the unique personality.

Our thanks go out to all - the treatment she received and the welcome we got everywhere was first class.

There are too many to mention but we would like to single out a few.

To her consultants, Rosemary Shannon and Johannes Visser we thank you for your skill, expertise and honesty, which guided Julie and I hopefully to make the best decisions for Alara along the way. We have no regrets and are forever in your debt.

Her Macmillan nurses Sue and Marie - a great help and support to all the family - who Alara trusted and she loved your visits during her treatment. Nothing was ever too much trouble for them.

To all the staff on Ward 27; particularly Katie and Rachel - both constants throughout Alara's treatment - they, more than most, bore the brunt of Alara's wit but they also would have enjoyed many of her good times with her.

The nurses all knew Alara and she liked them all - she was no trouble.

So, appropriately, about two weeks ago the disease took a final turn and typically of Alara, she realised this and made, Julie's and my life easier.

Alara decided no more hospital and she wanted to spend the last few days at home. A decision we had agonised about making. Alara made the decision for us.

Appropriately, she passed away in peace, in her own bed - one more glimpse of those big brown eyes and she was gone - somewhere else, somewhere better.

It was her time; a void left in our lives which we can never attempt to fill. We were lucky to have such a special little girl in our lives and a privilege to call her our daughter.

Sleep well my darling!

You will always be

Our Alara!



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