Thursday, February 15, 2007

Here the text from a Speech that Kara is giving at a Starlight Foundation function about Amelia's illness and her wish:

Hello everyone. I am delighted to have the opportunity to share with you tonight how the Starlight Foundation has brightened our family's lives. I would like first to tell you a little about how our daughter became ill so that you can hopefully appreciate just how good the Starlight Foundation has been for us.

When our eldest daughter Amelia was 3 ½ and our second daughter Emma was 14 months, James and I found ourselves enjoying the quintessential happy family.

6 months later, when Amelia was 4, the lightness of being we'd thus far enjoyed seemed to have left us. A cloud had decended on Amelia and our whole family.

We stopped going out because the chances were Amelia would become so angry about some insignificant thing that she would explode and the outing would bring more stress than it was worth.

She was suffering but we didn't know why.

We despaired at not understanding why our happy little girl had become so dark and angry. In retrospect, it must have been terrifying for Amelia to have been witnessing on some level what was going on in her body, yet not being able to articulate it or understand it.

When Amelia was 4 ½ and our third daughter was just 4 days old we realised that Amelia was very sick. She got out of bed that morning and couldn't walk straight. She bounced off walls, her head wobbled, she was drooling, her hands shook and her speech was slurred.

She was hospitalised and the tests began straight away.

It was so sad to see her subjected to a barage of frightening, invasive tests : CT scans, general anesthetics, Mri's, an EEG, a lumbar puncture, ultrasounds and loads of blood tests.

Even sadder though was the look of hurt and shame on her face when the doctors spoke about her as if she wasn't in the room. The doctors had to ask their questions, they didn't know what was wrong. Amelia had neurological symptoms, but a cat scan had shown no tumor on her brain.

It turned out that Amelia had a neuroblastoma on her adrenal gland, which was surgically removed. She was also found to have a rare auto-immune condition called OMS, which affects about 1 in 10 million children each year. Her immune system had been attacking her tumor but got confused and started attacking her brain as well, hence the neurological symptoms.

Being such a rare condition, we poured our energy into researching the illness and its treatment. The doctors didn't seem to know what treatment to follow. Even though we found that most children with OMS in the US were treated a certain way, our first doctor wasn't prepared to give Amelia that treatement because it was too costly. So we looked for a doctor who would.

It was really draining having to ask for things all the time. I often wished that I could just trust the doctors to know what to do for Amelia, but I wouldn't. The medical system offers all kinds of wonderful support for patients, but my experience was that unless I asked for it, it wasn't forthcoming.

The treatment of Amelia's OMS was immune suppression with very high dose steroids. This mediacation caused her to double her weight in a few months. She also had to go to hospital every month for a 10 hour infusion, which made her very sick. And all the while we were trying to care for our other two children and keep some normalcy to our lives.

We heard about the Starlight Foundation's wish-granting work through a family in the US at our on-line OMS support group. James suggested we apply. I remember when we received the notice that Amelia would be given a wish, the letter said that we would also go onto the Starlight Escapes data base and would be invited to activities for the next couple of years. Oo, this is a bit of a bonus, I said to James.

What a breath of fresh air Starlight Escapes was. Neddless-to-say, I was too distracted to think about organising family outings at that time of our lives. But these letters would turn up inviting us to an escape. Just RSVP and turn up. I could manage that. I remember saying to James “isn't it nice to have something good like this just fall into our laps right now” when an Escapes inviatation turned up one day.

It wasn't long before Amelia came to recognise the Starlight logo on the envelope and would jump up and down excitedly about the prospect of another escape when a letter arrived.

The escapes programme has given us the opportunity to go to Boy from Oz, Walking with Dinasaurs, movies, a christmas concert by the Brandenburg Orchestra, a behind-the-scenes show with the Australian Ballet at the Opera House, a tour of one of the navy's submarines and more.

The escapes have given the whole family the chance to go out and do some fun things together.

Also, very importantly, they have given Amelia the opportunity to meet with a range of friendly, supportive people, which has been an important part of restoring her ability to go out and be in the world. You see she had, understandably, become such a fearful child.

When we told Amelia that she was being given a wish, initially she wished for a sleepover at her grandparent's house. Then she wished for a bike, but we told her to try to wish for something that we could never give her without the help of the Starlight Foundation.

She talked about it with her art teacher. Amelia had started private art classes as a kind of therapy to help her deal with the baggage of her illness and treatement. Her teacher suggested she wish to have her work hung in the NSW gallery. Amelia thought this was a great idea and that it would be fun to work with a 'proper' artist to create the work for her exhibition.

Working with Sydney artist Janet Laurence was a most beautiful experience. Amelia's visits to Janet's studio were always special, creative and uplifting. It was lovely for James and I to see Amelia slowly coming out of her shell a little more at a time. It was such a positive experience for Amelia to be able to create art, express herself and enjoy herself with Janet and her dog Wax in Janet's space.

It was wonderful for Amelia to have a wish that took many months to be fully realised. She had the opportunity to develop a special relationship with Max, her wish granter, and with Janet and her dog Wax. By the time the exhibition day came around, 2 ½ years after Amelia was diagnosed, Amelia had finished her monthly infusions and was weaned off nearly all her medication.

The day of Amelia's exhibition nobody could quite believe how Amelia was able to rise to the occasion and absolutely relish having such a large group of her friends and family there for her. It was an extremely affirming day for Amelia.

Max, her wish-granter thought of all kinds of details to make Amelia feel like a princess on her special day. She had her hair done in the morning, she had a beautiful new dress with layers and layers of pink tuelle, a limo took the family to and from the gallery, her work looked superb hanging on the wall of the NSW Gallery, the gallery provided refreshments for Amelia's guests, and she had posters of her work which she signed and gave out to her friends.

The day was a real celebration of what Amelia has achieved.

We are so grateful to the Starlight Foundatin for the immeasurable ways in which they have contributed to Amelia's healing, and for just giving the whole family a good time when we really needed it.

2 Comments:

Anonymous Savitha said...

Am savitha, mother of Sreenidhi(we call her parvathi)with neuroblastoma and OMS...we are in Indis

how s amelia ? looks its three months since ur last post...

my love and prayers for Amelia...

cheers

savitha

Monday, August 25, 2008 5:21:00 pm  
Blogger James said...

Hi Savitha,

Amelia is much better these days, thank you. She is off all medication except for Trazadone now.

Just in case you don't know, there is a great forum for OMS families at http://health.groups.yahoo.com/group/OMSFamilies/. I would love to hear your story and I think the OMSFamilies forum is a great place to post it.

I hope all is well for you and Parvathi.

Cheers,

James

Monday, August 25, 2008 8:09:00 pm  

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