My Updates
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Wednesday 19th Feb For the second time our world fell apart. Our oncologist delivered this news to us in an airless room, the sadness showing in his eyes. We will never forget that day. The rationale is that all Eleanor’s treatment she had included her clinical trial drug did not penetrate the blood brain barrier and neuroblastoma cells have been laying dormant there until now. Eleanor had major brain surgery at the Royal Children’s Hospital, Melbourne on the 8th August to remove the tumour. Surgery was successful but the tumour was very aggressive and has likely left active cells around Eleanor’s body. Her new diagnosis is a central nervous system (CNS) relapse of Neuroblastoma. Without life saving treatment, she is in dire trouble. Disease progression is quick. We, along with our oncology team have sourced the only and best treatment regime in the world. This week Eleanor has completed one round of chemotherapy, had a new central medicine line inserted, a nasogastric feeding tube put in and commenced craniospinal radiotherapy. Chemotherapy and radiotherapy will be ongoing for the next five weeks in Melbourne. Our only avenue and hope is to enrol Eleanor in a CNS relapse trial in America, which uses antibody 8h9 to attack remaining cancer cells in the central nervous system. This is her only chance of survival. Australia has no official CNS relapse protocol/program as it is so rare. We need your help urgently to raise $300,000 to get Eleanor through her treatment in Melbourne and to travel to America to receive her lifesaving antibody. We only have 10-12 weeks to raise the funds and get Eleanor into the trial. This is our only hope of curing Eleanor and we have received a few quotes to date for the trial – ranging from 300k to $2.2m AUD. Any Australian treatment course of action would only act to prolong her life for the very short term as part of a palliative care plan. We have written just the facts above. Most of you would find this unimaginable. The toll on us is immense, but no words can describe the toll it takes on Eleanor. Our baby, having to endure this, is unaware of the seriousness of her disease. We are devastated that she cannot live like a normal kid and enjoy her life. You all know Eleanor does everything with a smile but the coming weeks will be her toughest yet. She has already suffered hearing loss from chemotherapy and will now suffer developmentally with further radiotherapy to her central nervous system. We have separated again from our family and friends in Tasmania, completely isolated and worried about infection risk to Eleanor. We are trying to give her the happiest life we can provide during this time. This sometimes means indoor play and arts and crafts while she is unwell. She loves animals and visiting the Zoo and we take her there as often as we can. Eleanor is also the queen of babycinos and we try to take her out for these often. All we want for Eleanor is a cure and then to take her home to the rest of our family well and able to live a normal and happy life, like she deserves. We want to see her go to her first day of school, learn to swim, play sports and go on holidays, things that we used to take for granted. Please help us in our fight for Eleanor. ShareThank you to my Sponsors
$58.92k
Tasmania Fire Service – Backpay To The Usa
$5k
Tasmanian University Football Club
Sending much love from the TUFC Rainbows community. 🌈 Stay strong beautiful Eleanor.
$4.66k
Jon Fuller
From the Pearl Jam family
$2.5k
Rca Transfer
$2.33k
Freedom Health & Wellness
Thinking of you always and so glad we could help in some small way! XX
$2.05k
Healthy Horizons
So much love and support sent to you all xx
$1.67k
Shimmer Beauty
Sending Eleanor and family lots of love and well wishes xx
$1.5k
Teach Make Create
From all our TMC families xxx
$1.38k
The Friends' School
Please accept this donation on behalf of The Friends' School, from our Fathers' Day Market.
$1.22k
Ract Staff Donations
Funds were raised at this years Staff awards night, then donation matched by CEO Harvey Lennon
$1.03k
Child Support Office Bake Sale
Organised by Becc Lowe
$1,000
Sam & Romany Brodribb
xxx
$552
Cambridge Primary School
$400
Warren Frey
$386
Kalis Hospitality
All the best.
$250
Rca Transfer
We pray for peace and comfort to relieve the anguish you must feel over Eleanor’s illness.
$250
Richard & Kate Vines
With our very best wishes.
$200
Rca Transfer
$200
Caroline
All the best, will be thinking of you all.
$200
Phat Fish Salamanca
All our love and best wishes from Hobart
$200
Rodney And Sue Deane
All our thoughts are with you.
$200
Tceo
We are all in your corner, Oakleys xx
$200
Allie Brown
Fighting with Eleanor. We love you beautiful girl!
$152
Lionhearts Singers
$150
Milly & Josh Howells
Sending love and good wishes to Boose, Jacqui and Eleanor. From the Howells/Potter clan. Xx
$125
Joe Griffiths
On behalf of AT by Capita for the go live of the Ambulance Emergency Services software.
$100
John & Libbie Davies
$100
Tizia May Photography
Wishing you all the best xx
$100
Alycia Hall
Wishing you a speedy recovery Eleanor xxx
$100
Jess And Josh Mulcahy
You are so amazing and strong xx
$100
Claire Reynolds
Sending positive vibes & love little chickadee.
$100
Allie House
Stay strong, there’s a whole community behind you all! And our little family is praying for yours x
$62
Rca Transfer
$50
Cheryl Pritchard
Sending love Eleanor to you & your family
$50
Rca Transfer
Thinking of Eleanor and your entire family.
$50
Dept Of Human Service Rosny
Thinking of you
$50
Blizzard Pebbles
♥️🦋
$50
Rca Transfer
$50
Rca Transfer
God bless you
$30
Kay Allport
$30
Steven Johnston
$30
Lisa
Sending hope and good thoughts
$30
Rca Transfer
$30
Simon M
$25
Steph Pope
Saved up pocket money from Steph xxx
$25
Rca Transfer
$20
Ken Higbid
hope we can all help to make a difference. best wishes on your journey.
$20
Hendy
$20
Per
$20
Perg
$20
Kane Hendy
$10
Rca Transfer
God bless u with bight future get well soon
