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Neuroblastoma in Children - One Family's Story

By - 5th October 2012

all images no reproduction permitted

Michaela Flanagan’s daughter, Ciara, was diagnosed with a childhood cancer called neuroblastoma when she was just 12 weeks old. Ciara was immediately put on an aggressive treatment regimen and underwent two strenuous operations and eight bouts of powerful chemotherapy. Throughout her first 12 months of life, Ciara spent half of it in hospital…

How did you feel when you received the news that Ciara had neuroblastoma?
Devastated. No-one wants to hear their child has cancer, and she was so tiny. I was really lost with it all until I knew her treatment plan - I could then focus on the next step, rather than think too much about the bigger picture.

What was it like to be the parent of a baby who was so seriously ill?
Your life changes - you live minute to minute, you don't get to 'enjoy' her being a baby and that is something you can never get back.

Throughout it all though we knew how lucky we were, as she had a good chance of survival and that is more than many kids get. I can still remember just after Ciara was diagnosed, the other parents told me that soon enough this would all become 'normal' and I can remember thinking that I never want this to become 'normal', but it did, despite the fact I didn't want it to.

How did a baby as young as Ciara cope with her illness and the treatment?

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She has never known any other life, so for her she just got on with it. She has an amazing tolerance for pain and discomfort and that has continued until this day.
She took a long time to reach some of the standard milestones, like rolling over and sitting, but other than that she was amazing. Throughout it all you usually didn't have to try too hard to get a smile... if you couldn't you knew something was very wrong.

How did you cope, and get through it all?
My husband and I got through it as a unit. Our doctor once called us 'team Ciara' and that is most definitely what we were. We also had amazing family support and a group of friends that we could not have done it without. From helping us with our son to distracting me from what was going on, they were always there and a big part of why we came out the other end much stronger people for it.

When you found out Ciara was in remission, what went through your mind?
I was numb for a while... it had consumed so much of my energy that I didn't know what to feel. I didn't know how we were going to move onto the next step, but obviously I was incredibly grateful that she had made it to that point, and whilst I don't think I will ever relax completely it was a great end to a chapter in our lives I don't care to repeat.

What are the aims behind your website, Neuroblastoma Australia?
Our website, which was inspired by Sienna Hoffmann who lost her battle to this disease when she was two and a half years old, is a joint effort with her mum, Lucy Jones.
We aim to raise awareness for neuroblastoma, offer a place where parents and families can find relevant information, it’s a place where we are starting to build a community, and it’s somewhere we can also highlight our fundraising efforts, which are all donated to Children’s Cancer Institute Australia’s (CCIA) research into neuroblastoma.

We believe that through research we will find a cure for this disease, and that will mean no little people have to go through this.

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What kind of support do you lend to families facing a similar battle?
We try to act as a place where they can find information on both the disease and some basic hints of how to deal with the initial hospital stays and such. We act as a contact point (via Facebook) where people can connect or ask questions, and we have also tried to put people in touch with the right medical professionals when required.
What activities do you do within the community to raise awareness of neuroblastoma?
There are currently two major initiatives that we do during the year to raise awareness and funds for CCIA’s neuroblastoma research: Sienna's Annual Gala Dinner, which is held in the first quarter of the year, and the Rozelle & Balmain Family Fun Day, which is usually held each October.

We are also planning the first Neuroblastoma Awareness Day for Australia, and it will be held on 2nd February 2013 at Sydney Park. This event will also extend to other parts of Australia with people taking time out on the 2nd, or leading up to the Day, to do something; a daycare activity day, a cupcake stall… whatever they are able to manage to try and spread the message across the country.

Why is research into neuroblastoma so critical?
30 years ago neuroblastoma was virtually a death sentence. Today, the overall survival rate is 40-50%, and for intermediate-risk neuroblastoma, which is what Ciara had, kids have a really good chance.

Unfortunately high-risk disease still has not seen a great deal of improvement, but there are new treatments that are coming through, and with more funding - and more research - perhaps all kids will share the same story of survival.

Just one generation ago, I would have had to sit back and watch my baby die... it is research that has meant I have not had to do that, and it is only research that can turn the tide for high-risk patients.

What would you say to parents who are facing a battle with childhood cancer?
Learn quickly your limits, you can't be all things to all people and if help is offered you need to accept it, as the battle is long...

Arm yourself with information and do your best to try and take a break every now and then, if you can, as the hospital can become a very isolating place.

Reduce your expectations of yourself - being there for your child is as much as you can ask of yourself, and all they ask of you.

On Sunday, 21 October, the 2nd annual Rozelle & Balmain Family Fun Day will be held at King Georges Park, and aims to raise $50,000 for Children’s Cancer Institute Australia (CCIA) to help save the lives of the 50% of children who do not survive neuroblastoma. The day is organised by Michaela Flanagan and her family and friends.

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