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Olivia's Page 
Welcome to Olivia's Web Page. We have created this space for our own records and to keep our friends and family informed on Olivia's journey. We hope to update this page regularly and that others in similar situations can be helped by these words.
Olivia was diagnosed in December 2003 with a Brain Tumor. She had surgery to debulk and biopsy the tumour. Her tumour is a Juvenile Pilocytic Astrocytoma. It is considered a low grade tumor but is at times referred to as Malignant by location as it is impossible to remove. It has grown from her Optic Chiasm and invaded her hypothalamus.
She had an extended stay in hospital due to unstable sodium levels, she was extremely unwell and I doubted on many occassions that we would be bringing our princess home with us. It was very difficult being away from her brother Jacob,although he was with us most days. Her baby sister Gemma stayed in hospital with us as she was only 9 mths old.
Livvy is blind in her right eye, reduced in her left and has no peripherial vision. She has Diabetes Insipitus, no thirst mechanism, Adrenal deficient and started puberty in April this year (controlled by monthly injections of Zoladex). She has shown outstanding courage through the rollercoaster ride of this illness and we are incredibly proud of our princess. We had hoped the tumour would remain stable after surgery but unfortunately it continued to grow causing Adrenal deficiency ( this is a life threatening condition and she now needs to take Hydrocortisone everyday) and changes in vision. She started Chemotherapy on Friday 12th November. Due to rare side effects of the protocol she was on she went completely blind, however her vision has continued to improve since changing to a different protocol. Her first scan since starting chemo showed the tumour had stopped growing, we are praying the treatment continues to be effective and shrinks the tumour.
Olivia's journey will be full of ups and downs and I will endeavor to keep this web site updated for our loved ones to know what is happening along the way. I have written her story so far in more detail in previous journal entries, please feel free to have a read. Thankyou for your prayers and support, we would not have made it through this year with such strength without the support of family and friends- the meals you cooked for us,the time you gave to us during your visits to the hospital and home, the cards of support and love, your concern and love are so greatly appreciated. Words cannot express how thankful we are to have you in our lives.
Please sign our guestbook. It is lovely to know you have visited and I hope Olivia can gain strength and encouragment from the messages left here.
LAST MRI JUNE 20th SHOWED A 5MM REDUCTION IN THE SIZE OF THE TUMOUR!!
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The Big Brave Banner Site
PRECIOUS PRINCESS
Ths smell of new born baby lingers in my nose,
as I count all ten fingers and tiny toes,
Her parents pride and love fill the air,
we promise to shower her with all our love and care.
One year on she starts to blossom,
and every moment is a joy with our little possum.
Baby babble and excitement fills our home,
Her little legs get strong and toned.
The year she is two we can not believe,
the many things she has achieved.
Walking, talking and playing day to day
I am overwhelmed by the gift God sent our way.
Into our family enters her baby brother,
it doesn't take long for them to be besotted with each other.
She helps him stay warm and later to crawl,
Not a word of encouraging does she need at all.
Her loving nature and gentle personality,
radiates outwards for all to see.
Kind and caring and funny at times
Any faults she might have would be hard to find.
She loves dresses and pink the year she turns three,
She appears to be much more girly than me,
One day a week, off to preschool she goes,
climping and dancing, she never slows.
Her brother and I miss her so very much,
It is very exciting when we go pick her up.
She chatters till bedtime about all of the things,
she has done during the day, her favourite; the swings.
When she turns four she sleeps quite a bit,
But she eats lots of food and seems healthy and fit.
Her baby sister is born this year,
Where there was baby she was always near.
We took her in for her first day at Prep,
when the day is over she cuddles the friends she has met.
She learns so much and has a great time,
I feel incredibly blessed these three children are mine.
She was five this year and very smart,
in fact in most areas she was off the chart.
But what made us proud most of all,
was her generosity and kindness to all.
Towards the end of the year something wasn't quite right,
Her excessive sleeping seemed wrong and so did her sight.
We went to the doctor and had many tests,
All came back clear, the truth could not have been guessed.
Christmas was coming so incredibly quick,
She had some headaches but wasn't at all sick.
The headaches intensified day after day,
So to the hospital we made our way.
Vomiting started and wouldn't slow down,
She put her head down and made the most terrible sounds.
A Cat scan was ordered but we were still unaware,
That this was the start of our darkest nightmare.
My baby was sick beyond my belief,
And not a thing that was said could bring any relief,
My perfect life had been shattered in the fact not a rumour,
that our princess had a very large brain tumour.
I think I cried a whole ocean that night,
I prayed and found the strength I would need to fight.
Her Daddy was strong, so much stronger than me,
He was shattered inside but a rock for his family.
We had Christmas at home before returning,
the day of her surgery seemed to be looming,
We had to say our goodbyes and leave her in the surgeon's hands.
My legs were so wobbly her dad had to help me to stand.
Complications after surgery that day,
meant that we had a difficult 7 week stay.
Our fear of losing our daughter took a back seat,
as we finally arrived home and had some home cooked food to eat.
She turned six that year and continued her adjustment,
to the changes in her and the life interrupted.
She struggled to see most of the year
and a life of blindness was a very real fear.
She continues her brave fight, this year she turned seven,
but we now feel more certain she is a lot further from heaven.
Her vision has improved a little although her hormones have not,
we constantly pray the tumour will die and will rot.
Our world has changed since that mind blowing day,
We have battled through every obstacle thrown our way.
This journey will never be over as such,
We will fight this illness ferociously, I'm certain of that much.
Our children are the most precious thing on this earth.
To see them unwell causes unimaginable hurt.
I'm thankful each day for our second chance,
Our gratefulness for life has been truly enhanced.
Olivia is growing up so fast.
How long until Jacob's next birthday?
Gemma isn't a baby anymore.
Please no more prayer group messages. We really appreciate your thoughts and prayers but the huge volume of these messages are clogging up our guest book and making it difficult for us to get in and read messages from our friends and family.
Journal
Sunday, May 25, 2008 1.11pm Olivia's MRI results are back and the tumour is stable. I'm extremely happy that we now have six months before I need to think about another MRI.
Her anxiety is really terrible at the moment (again) and now that we have exhausted almost all alternate avenues we are looking at anti-anxiety medication to help her relax and rationalise. The daily meltdowns and tears must be so exhausting for her, I know it can be exhausting for me.
But all in all Livvy's health is pretty good at the moment and we continue to enjoy the relative normality that goes along with it.
Read Journal History
Hospital Information: Westmead Childrens Hospital,
Westmead, Sydney
NSW
Links: http://
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