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Help Eleanor fight Neuroblastoma!

$113,824 of $150,000 goal

Raised by 1,058 people in 17 months
As many of you know, Rob (Boose) and Jacqui have had their world turned upside down recently with the news that their beautiful daughter Eleanor has Neuroblastoma, a rare kids cancer that effects 40 Australian children each year. 
 
They have had to uproot their lives and move to Melbourne immediately for treatment at the Royal Children’s Hospital, for a period that could stretch out to around 2 years.




As a parent myself, I can only begin to understand the shock, stress and heart wrenching feelings they must be going through watching Eleanor start her first round of chemotherapy and spend the majority of her time in hospital. The chemotherapy works to reduce her white blood cell count and when it is very low it means she is susceptible to all types of germs and bugs, and any increase in her temperature means more time back in the hospital and not at the unit in North Melbourne with her parents.

With the amazing support of their family and friends, the Tas Fire Service and Rob’s fellow firefighters, and Jacqui's collegues at Sacred Heart College, Boose and Jacqui are able to be close by and spend the time they need to with their little one.

We caught up a few weeks back and discussed setting up a fundraiser to ensure that neither Jacqui or Boose have to work throughout Eleanor’s treatment, and to be honest, so that many of us can actually ‘do’ something to help. Of course initially they didn’t want the fuss, but with the realisation that everyone wants to help and that anything we can do to take the stress away from them both having to work, their mortgage, bills etc. They have agreed to let us set this up for them.

I understand there are other events and avenues that are being worked on that will allow people to show their support in the coming months. We will keep everyone updated on these opportunities, auctions and events via the updates on this page (if anyone has anything that they want to donate or wants to alert us to any events that they are organising please send me an email at stuart.g@campaignedge.com.au ). 

I know that Jacqui, Boose and Eleanor have a lot of friends, family and support across so many parts of the Tasmanian, interstate and overseas communities, so I would like to ask you all to consider donating below to ensure that they can spend as much time as possible with Eleanor in the coming weeks, months and years, fighting this together.

Thanks, 

Stuart Gillies, Simon Moore and Will Oakley
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Stuart here:
There is an update from Rob and Jacqui below that is pretty hard to get through without getting emotional. I wanted to quickly explain that we are moving the fundraiser to a new page for a bunch of reasons – the main being that new GoFundMe pages attract a much lower 2.5% fee than what is taken out of this one. And we are going to need all the $$$, help and support we can over the next 3 months as Eleanor’s Fight continues.

Please head over and support the NEW GoFundMe Page at http://eleanorsfight.com.au

And please like the facebook page we have setup at https://www.facebook.com/eleanorsfight/

P.S we will keep updating this page but donations will be closed off.

From Rob and Jacqui:

As we sit here trying to write this update, we wipe tears from our eyes. It has been a long journey since January 2018 for Eleanor and us.

Eleanor celebrated her third birthday three weeks ago, an enormous milestone for her. She was well and happy, and she had a great party with all her close relatives. We then flew to Melbourne for our three month post treatment follow up scan and testing. We were supposed to fly out to Grand Rapids, Michigan a few days later for our original clinical drug trial if Eleanor’s scans were clear. The scan took longer than usual and when we were called to come to recovery to meet Eleanor, the anaesthetics doctor said they took a lot more photos. We began to feel terrified.

Instead of being let go from recovery to wait 48 hours for scan results, our oncologist was waiting to talk to us. A new tumour was found on Eleanor’s right frontal lobe in her brain. We cannot remember his next words or how we managed to walk Eleanor and her baby brother George back to our accommodation. We just remember the airless room and our oncologist’s sad eyes. We were in shock and instant despair. Feelings that have not left us yet. Our world has fallen apart again. Our beautiful daughter has once again fallen victim to this relentless disease. Eleanor’s new diagnosis is a relapse of the central nervous system, incredibly rare and difficult to treat. Not many children survive. There is no point sugar coating this new and treacherous journey. This feels, and is so much worse than the initial diagnosis.

Eleanor had major brain surgery to remove her tumour two weeks ago and she has now recovered enough to commence very rigorous chemotherapy and radiotherapy to stabilise any other cells remaining after surgery.

We have painted a very grim picture but we have found hope in an antibody available in America. The therapy is designed to treat and hopefully cure the central nervous system after chemotherapy and radiotherapy. This is the best, and the only real option to cure Eleanor. The other option is to try and slow the disease, but this would be palliative.

We have chosen to close this page due to much higher fees and to start a new page. We want to thank you for supporting and following Eleanor’s journey and we hope you will join us again to help our daughter in the fight of her life.

Please head over and donate to the NEW GoFundMe Page at http://eleanorsfight.com.au

And please like the facebook page we have set up at https://www.facebook.com/eleanorsfight/

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Reflecting back twelve months today, Eleanor had been isolated for six weeks after her high dose chemotherapy and stem cell transplant. Her health was on the fast decline and we were heading straight into lung complications and a trip to the intensive care unit. These would see her on breathing ventilated life support for a whole week, every parent’s worst nightmare. We were advised to call our parents as our oncologists were unsure if she would survive. This certainly was one of the many lows we endured during our time in Melbourne, but the fragility of her life was most apparent. The feeling of desperation and helplessness we faced when Eleanor declined rapidly will live with us forever. We added a picture of her a year ago. One we can barely look at, one that brings up the most raw emotions for us, but seeing her now gives us hope moving forward.

Fast forward to today. We have been lucky enough to move Eleanor back to Hobart after finishing her immunotherapy at the Royal Children's Hospital, the final phase of her near 18 month Neuroblastoma frontline treatment. Since arriving home seven weeks ago Eleanor has been to Michigan, USA for the first of six trips on a clinical drug trial and welcomed baby brother George. These have been huge adjustments for her to make.

A normal life is difficult for us and probably always will be. We have been slowly introducing Eleanor to normal activities and giving her opportunities to play with her treasured cousins and family members. Eleanor is full of life and is really making up for lost time. Everything she does she goes at a million miles an hour. We love watching her every move and seeing the many glowing smiles.

Eleanor is not immunised and will not be for the next few months and this has posed difficulties for us as we are worried about her immunity. We have decided to take her swimming, one of her favourite things to do. It brings us great joy seeing her laughing and enjoying normal activities. Eleanor's other favourite place is the beach. She spends her time collecting shells and building sandcastles in Orford and Seven Mile Beach.

Eleanor's nasogastric feeding tube was removed last week after almost sixteen months of tube feeding and dressing changes. This was a major milestone. She looks low like any young toddler. When walking down the street we now no longer receive second glances at Eleanor, moments we had always become accustomed to but always reluctantly accepted. She reminds us daily that her tube is out. We are delighted to see her eating again and trying new foods.

July brings check-ups for us at the Royal Hobart Hospital, The Royal Children’s Hospital and if Eleanor remains cancer free she will be eligible to travel to Michigan for her second round of treatment in early August.

We thank you all for your continued love and support. We also send a huge thank you to all of our family members who at the moment are looking after us until we are able to move back to our home.
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We write this update happily returned to Hobart. It has been a monumental last 16 months. Eleanor has been through so very much. She has taught us so much. We have said how proud we are of her but it so hard to describe the pride we have to bring her back home.

We have travelled and returned from Helen DeVos Childrens Hospital in Grand Rapids, Michigan for Eleanor’s two year DFMO trial. On the Trip was Eleanor, Rob and Grandad Jimmy. Jacqui had to remain at home due to being nearly 39 weeks pregnant. This involved a 30hr travel time both ways which made us very nervous travelling with someone in the terrible twos! But like everything Eleanor has done she handled is so well.

The trip to Grand Rapids was a success. It was very nerve wracking heading over there not knowing how they would view Eleanor’s treatment and whether they would deem her a worthy candidate. They were really happy with Eleanor and all the team there were very welcoming. Even though it is going to be a great financial burden and we would like nothing more to have a quiet event free life from now on, our decision to enrol her is the best one in our minds.

Eleanor’s cancer journey is far from over. We bring back a relatively healthy and very happy child. But she still requires very high level of care and she is still recovering physically from her intensive treatment. We will be forever looking over our shoulder in fear of what may be around the corner, but for the moment we can celebrate to have our Eleanor home, alive and well.

We arrived home on a Friday and by Monday night we were back in hospital tackling a different challenge. Our unborn child was starting to get restless and decided it was time to show him or herself to the world. We went to hospital late on Monday night and by 0155 early morning, we welcomed our son, George Jimmy Oakley into the world. He was a very health 4.4kg. He and mum did an amazing job. We were so grateful we could be all together for the birth and not some in the US and some home. Fate was on our side. Eleanor is starting to really warm to George, she gave him a loving kiss and cuddle today! She is going to make the best big sister.

We are now putting the plans in place for our next US trip in early August and returning to Melbourne for scans in July.

Thank you so much everyone for your support for Eleanor, and your congratulations for George. We are a very happy family of four at the moment but feel much bigger from all your love.
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All,

Stuart here again - I’m sure you were all as happy as I was to receive the promising news in the update and photos of Eleanor a few days ago – that bell ringing photo!

I caught up with Jacqui and Rob and cheeky/funny Eleanor recently at a wedding in Victoria and we talked about the American Drug Trial and the scans they were going through to ensure Eleanor’s eligibility for this ground breaking trial in Grand Rapids, Michigan. To say it was a highly stressful, nail biting time waiting for the results would be a massive understatement.

The trial is using a drug called DFMO (difluoromethylornithine), which aims to inhibit or shut off a pathway responsible for the growth of cancer cells. Eleanor will orally take DFMO twice a day for the next two years. It has very limited side effects. She will need to travel to Michigan 7 times in the next 2 years to be given the drugs, monitored, tested and her results documented as part of the trial.

So, why do this trial at all?
Without being too depressing, but ensuring we all know the facts that are available, getting into this trial is by far the most crucial pathway to giving Eleanor the highest possible chance of staying in remission, not relapsing, and staying alive.

Some sobering stats on Neuroblastoma (NB) and then some remarkable results from the DFMO trial (to date):

NB stats:

If you have NB and are able to achieve remission after finishing initial treatment: 34% of these kids relapse within 2 years and 41% will relapse by 4 years.

Sadly the figures also show that 14% of these kids will be dead within 2 years and the number of kids killed by this disease doubles by year 4 when 28% of those kids will be dead.

The numbers are even more sobering if you had your disease relapse and were then able to get back into remission as 94% of those kids relapse within 4 years and 80% of those kids will be dead within 4 years.

Current NB statistics for Kids on the trial drug DFMO:

84% of these kids STAYED in remission after 2 years
97% of these kids were still alive after 2 years.

Even more remarkable was the fact that:
At 4 years 83% of these kids were STILL in remission and
At 4 years 96% of these kids were STILL alive.

More info here if you want to read up on it - https://beatnb.org/dfmopaper/


What’s next and how can we all help?

We’ve all been part of an amazing range of fundraising activities that has allowed Jacqui and Rob to be with Eleanor in Melbourne through this first phase of treatment. $100k+ in 16 months is an amazing achievement.

But, the next 2 years of the trial is about to begin tomorrow. Rob, Eleanor and Grandad Jimmy will leave for Michigan (hoping that baby no. 2 can hold off coming for 8 days!) to start the first of 7 treatment cycles.

Each trip consists of about over $10k in costs to fly, accommodate, do the tests, scans and the trial. Between each US trip there is a 3 monthly trip to Melbourne for follow up scans and specialists appointments. Not to mention the continued time out of work for Rob and Jacqui.

I said to them we should try and raise another $100k to cover it all, but after much debate about how thankful and indebted they already feel to all of you for your generosity, I’ve begrudgingly agreed that we aim to get this fundraiser up by $50k to $150k overall and meet in the middle.

What am I asking you to do?

Please read those stats again, and have a think about the last 16 months and how far and hard this family and Eleanor have fought and come.

And please, if you can, help by donating to get this next phase of treatment underway.

Thanks again – Stuart
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$113,824 of $150,000 goal

Raised by 1,058 people in 17 months
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