Welcome to Dani-Ella's Web Page. It has been provided to keep our family and friends updated about our girl. It is also for us to keep a detailed diary of our brain tumour journey. We hope other parents find the information in the journal helpful in making informed decisions regarding their child's treatment for a pediatric brain tumour.

Dani-Ella was diagnosed with a Pleomorphic Xanthoastrocytoma (PXA) which is a WHO Grade II Astrocytoma in August 2004. Her doctors said it was a large tumour and it was deep in her brain in the left temporal lobe and hypothalamus.

On 3 August 2004 at the age of 4, Dani-Ella had her first surgery performed by Dr Mariann Vonau at the Royal Children's Hospital in Brisbane. Dr Vonau was unable to remove any more then a small piece of the tumour for pathology purposes as bleeding complications arose during this surgery. She was then put on watch and wait with regular MRI scans.

On 1 June 2005 at the age of 5, Dani-Ella underwent a second surgery of approx 14 hours to remove the tumour at the Prince of Wales Private Hospital in Sydney. According to her neurosurgeon her tumour was extremely complex and occupied almost 50% of the cranial cavity. The piece of tumour sent to pathology was 6cm. Her Neurosurgeon, Dr Charlie Teo told us that the whole tumour was removed. Dani-Ella then underwent many months of intensive rehabilitation at the Qld Paediatric Rehab Service in Brisbane.

In October 2005 at the age of 6, she became unwell and an emergency CT Scan at RCH Brisbane late on the evening of 20 October revealed acute hydrocephalus. She had surgery that night to relieve intracranial pressure and another surgery on 26 October for placement of a VP Shunt. An MRI scan on 1 November to check on the placement of the shunt revealed that the tumour had recurred around the margins of the 6cm cavity left in her brain after her June surgery. The largest nodule was 22mm. We were offered low dose, long term chemotherapy (carboplatin/vincristine protocol) in an attempt to stabilise the tumours. As we were due to go back to RCH Brisbane 3 weeks later for another MRI scan, we decided to go home and try to make a decision about her treatment in the event that the tumours had grown during that time. We also sent her MRI scan to Dr Charlie Teo for his opinion. He agreed that we should wait and send him the next scan and he would then be able to tell if the tumours were growing quickly.

However, within two weeks she again become unwell and fearing a shunt malfunction or infection we took her back to RCH Brisbane. For a week her team of specialists performed tests which all showed the VP shunt was working fine and she was discharged from hospital still very unwell and now complaining of neck and back pain.

We were very concerned about her and on 20 November Richard (her father) flew with her to Sydney at the immediate insistence of Dr Charlie Teo. On 21 November he removed her VP shunt and started her on antibiotics. After 2 days, she had not improved so preparing us for the worse he ordered a CT scan with contrast. Unfortunately, the CT scan showed marked tumour progression. The tumour had now agressively grown around the original site and spread through her brain and most likely down her spine, hence the back pain.

On 24 November a new VP shunt was put in her brain so that we could bring her home. She arrived home on 26 November. Dr Teo told us we would only have a month left with Dani-Ella. We immediately started palliative care with our local GP to keep her comfortable.
After a special 5 1/2 weeks at home with our brave princess she went to be with Jesus on 1st January 2006.

The guestbook has now been closed but feel free to email us direct.

Journal

Monday, June 23, 2008 0:30 AM CDT

HOMESICK

You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you.

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now.

Help me Lord cause I don't understand your ways
The reason why, I wonder if I'll ever know
But even if you showed me, the hurt would be the same
Cause I'm still here so far away from home.

I close my eyes and I see your face
If home's where the heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now.

In Christ there are no goodbyes
And in Christ there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again.

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
I've never been more homesick than now.

MercyMe

Read Journal History

Hospital Information:

now with the other little
angels in heaven

Links:

E-mail Author: richardsharon@aapt.net.au

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