Jessica's Story

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Jessica's Story

Even when it came to pacifiers she just couldn’t fit enough of them in her mouth

Although diagnosed with Crohn's Disease, Jessica devoured food with such urgency and vigour she earned the nickname of 'piglet'.

Of all our family and friends no one had ever witnessed a baby devour a bottle of milk with such urgency and vigour. Our first child was truly unique in so many ways but something stood out from the day she was born, she loved her food and lots of it. And so she quickly earned the nickname “piglet”.

So it was with great concern and worry that we noticed her desire for food at odds with her ability to consume food. At the age of 3 our little princess started to develop regular bouts of high fevers with many fruitless visits to emergency.
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She would be very hungry but fail to eat anything much at the dinner table. We cooked all her favourite meals one after the other but her appetite was going going gone. We grew tired of doctors and the emergency ward but we persisted. Boy oh boy did we persist....
At around the age of 4 we found a tiny bit of blood in one of her stools. This was in fact the same day her 2 year old brother fell down in a retail store exposing a vascular malformation in his leg as well as his abdomen. As they say...when it rains it hails. By now our little girl was developing a dark look around her eyes, an overall pale look to her face and a steady decrease in weight. It was the tiniest bit of blood we found that day but it was enough to finally motivate doctors at the Prince of Wales hospital to have it investigated further.

Hospitals slowly became the norm for our poor little princess as they ran test after test after test. Eventually a juvenile polyp was found and removed and to our delight appeared unrelated to some of the more sinister conditions previously discussed by her specialist.

Immediately after the removal of her juvenile polyp things did get better but within a few short weeks they slowly took a turn and before we knew it we were back where we started. Fevers were once again accompanied by her inability to eat food, food she really wanted but for some reason couldn't stomach.

By now she had been exposed to so many varying x-rays, tests and examinations that we were slowly giving up hope for any kind of diagnosis. I remember the specialist saying it could be another polyp or she could grow out of it or we could run one last test.
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 Our gut feeling served us strongly enough to push for something more and in the end they pumped our little girl with gamma rays. We sat and watched as she lay still in what looked like to me a cat scanner of some type. All these green little dots moving down towards her lower abdomen, indicating our deepest fear, she didn’t just have polyps she had something worse, something chronic.

I will never forget the day I received that phone call from my wife. I was at work when she told me the results. I cried myself through a packet of cigarettes as I contemplated thoughts of what lay ahead for her. Such trials and tribulations at such a young age and for how long? Her whole life! My wife and I were a mess.

Our next visit to the specialist is one I will never forget. Our tiny shrinking little 4 year old princess was only just old enough to understand something was wrong with her. She hid under the desk as her specialist told us in no uncertain terms that Jessica has crohn’s disease. It kicked in then, at that moment, the realisation our perfect little baby was going to need to manage a potentially debilitating disease known as Crohn’s.

What is Crohn’s....?

And therein lay a problem. At the time of her diagnosis nobody we knew was even familiar with the disease and so the potential severity of the condition was something I remember explaining to family and friends over and over again. I still remember being advised by our specialist that children with the condition could spend the better part of any year in and out of hospital. We lived in fear of the unknown...

We took her to Fox Studios the day before she was to go into hospital. I remember my wife and I thinking we should let her eat whatever she wants and as much as she can fit in. Even though we explained the food drought just ahead she was still not interested in eating much that day.

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The morning after Jessica’s diagnosis she was admitted to hospital for an undetermined period of time. I took leave and stayed with my daughter, sleeping overnight with her whilst my wife looked after our 2 year old boy at home. That week was the longest time we had ever spent apart and yet we were even more together now than before.
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Thank you to the Starlight foundation
   I’ll never forget the scene when our son came to visit his sister in hospital. My wife was parking the car and my mum was on her way up with Jayden. Jess and I were in this very long corridor talking to the nurse. The doors at the far end rustled and opened hastily and a little bright eye boy appeared screaming “CACCA !!!”.

If you spoke Italian or knew what that word meant you might think he was desperately looking for a toilet. Jess turned and ran towards him as he ran as fast as he could towards her.  They met somewhere in the middle embracing each other, actually it was more like he tackled her to the floor while hugging and kissing her profoundly.

The nurse was in admirable shock “they must both really love each other a lot". They sure did, they did everything together and were "Partners in Crime” and if you are wondering what “Cacca” meant? That’s just how he pronounced her name :)

No food at all for at least three months and some yucky liquid drink the substitute. Jess would need to consume 3 x 500ml bottles every day indefinitely with absolutely no food. We spent that week in hospital trying to determine if jess could even consume such quantities naturally or if she would need to be tube fed. We were told at the time Jess was the youngest child to be diagnosed with crohn's disease in Australia and that none of the other children with crohn's disease had successfully consumed the required quantity of nutrition without resorting to a tube. And so our greatest challenge began. 
The thought of a tube down her throat at age 4 for at least three months motivated us to prevent just that. And so I started drinking the liquid with Jess from day 1. Every glass she had I had with her and so it went, one disgusting glass after the other. After a week in hospital and a thousand movies later (Scooby doo stands out for some reason) Jessica had proven she was capable of drinking her daily quota naturally and to everyone’s amazement we went home to continue her treatment without a tube.

Then started the specialist and nutritionist visits and all the additional hospital visits and what seemed like never ending blood tests. My wife would arrive at the hospital an hour before every blood test just so they could administer Jess with an emla patch. This was optional for young children and the patch only became a necessity for Jess after a practicing nurse missed her veins at least ten times while taking blood.

If memory serves me correctly I asked her nicely to stop and then sent her packing. My Wife spent countless hours waiting for patches to take effect while trying to entertain a very energetic 2 year old boy and a scared 4 year old girl. It was an all-round tough time for my wife dealing with 2 kids and 2 sets of medical conditions. Jess had crohn's and Jayden had his vascular malformations and a bunch of tests and hospital visits as well. I am happy to report that my beautiful wife survived the storm and Jessica is no longer afraid of needles, however one person in our family still carries that baton.

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Jessicas Story 7   At home the things you take for granted soon go through this whirl wind of change. Dinner time was no longer family time, it now consisted of our parents coming over to look after the kids whilst my wife and I ducked out for food so Jess wouldn’t see us eating. My wife would feed my son in the spare room whilst I would keep jess entertained in the lounge room. And so it went on for three long months but Jess never saw us eat once, not once.

We did what we could to lessen her burden and if that meant going to extremes then that is exactly what we did. I continued drinking the liquid with Jess even after our stay in the children’s hospital and I dropped my intake of food to one meal a day. Jess never questioned why her mum and brother weren’t eating either; I think she just assumed that we were all not eating. 'Crazy Chicks' at Malabar became our daily dinner hot spot.

I recall the owner asking us why we ate out every night. We simply told them that we were renovating and didn’t have a kitchen to cook in. We did not cook an ounce of food for months. We wanted to keep food out of her sight as well as any lingering aromas associated with cooking. We avoided family gatherings and dinners, we only turned up after food was served and removed from the table. We became experts at dodging the food courts in the shopping malls and avoiding all those beautiful smells and aromas as well.
It broke our hearts to hear our little girl say daddy cant I just have one chocolate or mummy can I just have 1 pizza slice. And we reluctantly sent her to pre-school as she would be amongst other kids eating treats and all kinds of other yummy foods. She just had her yucky little off white liquid to drink which would stain her teeth and leave her with bad breath. Poor little darling.

My wife recently reminded me of this time at preschool when the kids were going to cook biscuits and cupcakes and we were reluctant to send her to school. Jess insisted she would go and so she did. She cooked  and baked all day and when she came home she said to my wife “Mum can we freeze these cakes and sweets and when I’m allowed to eat again we can defrost them and I can have them”, you can imagine how heartbroken my wife was.

As time passed by ever so slowly we found ourselves caught up in a cycle of thinking...? Always looking for ways to ease her burden and keeping things fun. And so one day I decided to combine her formula (Nutrison), her name (Jessica) and her passion for stories into a super hero named Jessie Nutron.

Jessie Nutron was a god send. Each day she waited anxiously always anticipating the next 1 hour instalment of her own special super hero story – namely, the adventures of Jessie Nutron. This became our bedtime ritual and it was good.
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Jessicas Story 9    Nutron was always saving the world from some form of destruction and by the end of it we had at least a hundred different enemies. The gist of it you see was her liquid drink, this gave her super human powers, this made her special and it made her strong! Which in fact was the purpose of her treatment. And boy did we love story time. The drink became her super power and her hero "Nutron" helped keep her in check. Our little Jess never once failed to drink her liquid, she was special.  She fought those evil badies of inflammation day in day out.

After a good month Jess finally started to gain colour and put on weight. I unfortunately started gaining weight as well and so I tried to ease off drinking the liquid with her, to which I explained there was only room in the world for one Nutron. She said dad who will you be...? And so the story gained a new hero 'Daddy Fartron' and I’m sure you know why? I like to think it was all the Nutrison I was drinking :)  Our pink sock pyjama wearing son was aptly named pink thing and so the adventures of Jessie Nutron, Daddy Fartron and pink thing slowly developed into the dynamic trio.

As you can imagine… drinking off milk (Nutrison) in place of food is a horrible thought, made even more horrible by the thought of any child having to unwillingly forgo food indefinitely. So we came up with the idea of turning that yucky liquid into an ice-cream.

After checking with the specialist and experimenting with a new ice cream maker we turned her Nutrison drink into Just that. It worked without adding anything extra to the formula. It wasn't great but it had texture and that was cause for excitement.

At the time we promised Jess a puppy and we had the little guy flown in from Queensland, anything and everything to keep her spirit alive. She named him Gizmo and appropriately so, only Gizmo couldn’t eat after midnight, poor Jess couldn’t eat at all. You sometimes wonder how much all of this plays on their minds. We no longer have Gizmo but he definitely helped to keep things fun.

After 3 long months without a single piece of food Jessica was given the go ahead to eat. Can you believe it? CHRISTMAS DAY.

Christmas day is special for so many reasons but this particular Christmas will stay with us forever. It was the day our little girl got to do what we all take for granted, she ate!

And much like Forest Gump said “I just ran”, well Jess…. “she just ate” then she ate some more and hasn't stopped. She absolutely loves her food with a passion.

And that Christmas, Santa’s wife delivered a lovely super hero outfit for Jessie Nutron which she wore with pride even when she grew too big for it. Thanks Santa!

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Jessicas Story 12      Over the following years she weaned off all of the medication as well as the Nutrison but her superpowers have still continued to increase as she continues to grow in body, mind and soul. Jessica has been in remission ever since. We believe a miracle took place, god blessed us with doctors, specialists and family, to which the incurable was cured. It has now been 8 years and our daughter is always the last one to get up from anyone’s dinner table.

These are just some of the lids from the bottles of Nutrison we collected over those 3 months. Our aim is to one day make something special with them. It is an art in progress.

In Italian we say buon appetito! And our family loves her healthy appetite.....

Jess is a beautiful soul and she handled everything so maturely; she was amazing in mind and spirit for someone only 4 years of age. Over the past Christmas holidays (Dec 2012 - Jan 2013) Jessica collected $1500 dollars from family, friends and strangers off the street. Then she donated it to world vision. This was all her own idea. She is 11 years of age.

My mother gave this very special pendant from Italy to a close friend of mine. He was diagnosed with a brain tumour on the first day of our HSC exams. After recovering from his operation he wrote a letter of thanks and sent it back to my mother thanking her for helping him to keep the faith. He asked that she give it to someone else in need. My friend is still alive today and that was 20 years ago.

My mother continued to pass the pendant on to friends with varying illnesses and each time they would send it back to her, never once did she ask for it back. Jess kept this pendant close to her heart the entire time she was sick and to this day it remains on her door handle. She has always longed to return it to her grandmother but mum finds it near impossible to take it back from her.

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Jessica and Jayden 2013 (World Vision Certificates)

Getting this all down in writing has helped me to remember the details I had begun to forget. I never want to forget the experiences, trials, tribulations and all round emotions we as a family journeyed through together in dealing with the onset of this chronic disease.

I hope our journey can in some way help you in yours.