After 18 months of brutal treatments for stage 4 high-risk neuroblastoma, our 3-year-old Sophie’s scans were clear. We let ourselves imagine returning to a “normal” life, with Sophie enjoying a childhood not stuck in hospital or isolation. We knew that relapse was a possibility, but we held out hope that all the treatment Sophie had been through had worked and the cancer would not return.
Sadly, it wasn’t long before our world was shattered again. Sophie’s 3-month follow-up surveillance scans showed that neuroblastoma has relapsed in her brain. Neuroblastoma relapse in the central nervous system (CNS) is rare and the survival statistics are poor. Without access to clinical trial treatments, the median survival time is less than 6 months. A clinical trial available overseas gives us hope for a cure, but we need help to make this happen.
We are absolutely devastated but are focusing on giving Sophie the best chance to beat this. In Australia, there is no standardised treatment protocol for CNS relapse as it is so rare. Any treatments currently available in Australia will not provide a cure. Our only option and Sophie’s only chance at surviving this is the CNS relapse trial overseas. Sophie's oncologist is in discussions with specialists around the world to develop a complex treatment plan involving treatment in Australia and participation in the overseas trial.
The first part of the treatment was brain surgery on 11th December 2020 to remove a tumour from Sophie’s temporal lobe. Such a daunting prospect, but thankfully the surgery went well and Sophie is making a good recovery. She has started chemotherapy along with craniospinal radiotherapy, which involves irradiating Sophie’s brain and spine. She will have daily radiotherapy sessions for several weeks and requires a general anaesthetic for every session to ensure the radiation is delivered precisely to the correct locations. This is to target the remaining neuroblastoma cells that are likely present throughout her CNS.
Even with all this treatment, it is unlikely to eradicate all the tumour cells. The best hope we have of curing Sophie of neuroblastoma is with a new drug called Omburtamab (8h9 antibody), which is only available through a clinical trial at several hospitals in the USA and Europe. This treatment involves radioimmunotherapy, where an antibody that attaches to neuroblastoma cells carries radioactive iodine to the cancer cells to kill them. While still only available through a clinical trial, this therapy is showing very promising results and is considered vital by international specialists in treating CNS relapse.
We are in the process of corresponding with the trial sites to establish their ability to take Sophie as a patient and to obtain quotes for the costs of medical treatment associated with participation in the trial. We are informed that the cost of this treatment will be substantial, but we will stop at nothing to ensure that Sophie can access it. Unfortunately, as the treatment is still in the clinical trial phase, we’re not eligible for any assistance from the Australian Government.
We’re on a very tight timeline, as we need to be heading overseas for this treatment within the next 2 months. We’d be so grateful for any assistance helping us to raise the much-needed funds to facilitate this crucial part of the treatment plan. We would need to be overseas for at least 2-3 months before returning to Australia for further maintenance chemotherapy.
It certainly seems like a long road, but Sophie is amazing and we’ll be right there helping her fight this as hard as she can. Please help us get her overseas for the treatment she desperately and urgently needs.
My Updates
The Beginning of Sophie's Journey
Testing over the next few days confirmed that Sophie had stage 4 Neuroblastoma, a rare and aggressive childhood cancer affecting about 40 children in Australia each year.
Sophie’s cancer was classified as ‘high-risk’, given the extent to which it had spread throughout her body. The primary cancer had developed in her adrenal gland and was pressing on her spleen and kidney. Her bone marrow was 86% invaded by cancer cells and Sophie had secondary cancers on her sternum, arm bones and throughout her face.
We barely had time to process the diagnosis as Sophie had to begin treatment immediately, especially as the cancers in her face were close to her optic nerve placing her eyesight at risk. A central venous catheter, used to administer chemotherapy drugs, was inserted in Sophie’s chest and she began her treatment. Our lives as we had known them were never to be the same again. Our hearts ached not only for Sophie but for our 4-year-old daughter who would have to endure the trials of having a sister with cancer.
Since her diagnosis, Sophie has endured months of chemotherapy, scans, biopsies and a major operation to remove the primary Neuroblastoma in her abdomen. She has one more cycle of high-dose chemotherapy in October, followed by radiation treatment and then five months of immunotherapy. After all her treatment in Australia is completed, there is the very real chance that Sophie’s Neuroblastoma could relapse (come back). If this were to happen, there are very few options for treatment here in Australia and Sophie may not have enough time to receive treatment overseas. The majority of children who relapse with Neuroblastoma in Australia are considered terminal.
Statistics show there is around a 50% chance of stage 4 high-risk Neuroblastoma returning. As a parent that is much too high a chance for us to sit around and do nothing. We have researched extensively to find a treatment that will give Sophie a better chance of remaining relapse-free. A clinical trial in New York is using cutting-edge science involving a cancer vaccine. The vaccine helps to train the body’s immune system to find and attack any remaining cancer cells that could cause a relapse. Initial results have shown this treatment to be very promising and the company that produces the vaccine has announced plans to commence commercial-scale production. Unfortunately, this treatment won’t be available in Australia any time soon, so Sophie’s only chance is to travel to the US. Participation in the trial would require multiple trips to New York over the course of a year. However, this treatment comes at a cost of approximately $300,000. This is where we need your help!
Those who know us, know that we are fiercely independent people who struggle to ask for help. Cancer has taught us that we can’t do this alone. They say “it takes a village to raise a child” and we are asking people to be that village. Even if we had the time to sell everything we own, we could not come up with the large amount of money needed to access the treatment for Sophie in New York. By helping Sophie access this treatment, you may play a role in helping to prove its effectiveness in preventing relapse. One day we hope it can be available to children in Australia, without them having to travel overseas.
We appreciate you reading our story and are so touched by the support we are receiving to help Sophie in her fight. Thank you!
The Stephenson Family
ShareThank you to my Sponsors
$200
Sandra Jones
$100
David W
God bless you. You are a strong fighter
$100
Erika Griffith
Sending our prayers!
$50
Anonymous
$35
Anonymous
$20
Anonymous
❤️❤️❤️❤️❤️❤️❤️
$25
Kylie Delia
We pray for a positive outcome for your baby xx
$5k
The Jetty Specialist
$50
Grace Castagnella
God gives his hardest battles to his toughest soldiers. With hope, He is watching over you, Sophie ♥
$50
Anonymous
Our prayers with you Bby Sophie. Love you & God bless.. ❤❤💖 Iuli family (Rdbnk Plains)
$10
Anonymous
$200
Steven Macdonald
Wishing Sophie many special times ahead where she can enjoy being a ‘kid’.
$1,000
Tr Piling & Marine
$50
Anonymous
Sending love and prayers.
$5k
The Steel Club Of Victoria Inc
Sophie, Members of The Steel Club wish you well for the future
$5.15k
Jessica Pereira
Like the kind people who donated to me before, I am paying it forward to you. All the very best xo
$200
Rosemary Greentree
Sending best wishes to Sophie
$550
Atsys
Sending all our love to Sophie & her family x
$90
Atsys
$100
Sue Bell
$500
Anonymous
Our thoughts are with you all
$50
Anonymous
$2k
David And Margaret Little
Our thought and prayers are with you.
$100
Steven Macdonald
Always in our thoughts and prayers xx
$100
Rosie & Lenny Lockwood
Dear Sophie we have heard of your story from friends we are wishing all the best on this journey
$1,000
Supreme Kitchens (sa) Pty Ltd
$80
Fragrant Flames
$50
Anonymous
$50
Paul Olsen
Love and prayers for Sophie and her family❤️
$50
Anonymous
God bless you
$50
Anonymous
$50
Julia Carlomagno
$10
Anonymous
$50
Craig Young
$250
Anonymous
$100
Ben Teoh
$150
Nick
$300
Nicole Khangure
$50
Bake Me One + The Edis Family
Sophie, We wish you all the best for your future health. Love Tam, Craig, Ethan + Alyssia
$30
Bartolo Family
We pray for that your beautiful girl will be blessed with good health.
$100
Melissa Latter
$100
Anonymous
$500
James Carman
All the best Sophie.
$1,000
Troy Richardson
Keep fighting Sophie!
$2.5k
Nic And Jill
Thinking of you all
$100
Sarah Corbett
Thinking of you and your family Matthew
$2k
Minutella Family
All the Best and keep fighting
$100
Mary And Phil
$300
Sarah & Tim
$3k
Sa Power Networks Employee Foundation – Holden Hill Depot
$720
Atsys
Sending Sophie our love <3
$500
Anonymous
$300
Chris Wales
Sophie, I've not met you, but apparently you're the toughest 2 yr old in SA! All our love the Wales'
$100
The Denman's
$100
Ned Moorfield
Let’s get Sophie to the Big Apple!
$100
Karen Lindsay
So happy to donate to Sophie's fight on behalf of Sarahs 40tj birthday
$400
Sarah & Tim Healy
Donation on behalf of SJS for her 40th.
$300
Janice Macdonald
Sending big hugs to a brave precious girl. Thinking of you all. Janice & Steve Macdonald & family.
$100
Susan & Peter Gutte
Donating on behalf of Holly and Harmony. What a very kind thing to do for our grand daughter 💛
$2.5k
Clutch
We are wishing you the very best. From the team at Clutch.
$10k
G And S Adams
XX
$20k
G And S Adams Pl
xx
$500
Sarah & Tim Healy
Sophie - keeping you & the whole Stephenson family in our thoughts.
$500
Kaleidoscope Accounting
Stay strong Sophie - you can beat this xx
$100
Pro Irrigation & Landscape
Hoping for the best outcome for Sophie❤
$22k
G And S Adams Pty Ltd
Love you heaps Sophie xxxxx
$200
Mark Weinhengst
$100
Hanyu Feng
$100
Anonymous
$1,000
Greg Watkin
Get well soon, I’m in remission from stage 4 cancer, know the battle, all the best
$100
Nat Jeanneret
$500
David Andrews
$50
Anonymous
$20
Anonymous
Sending love xo
$500
David Andrews
$100
Channelle Calderwood
We just saw your story on the news. Our hearts and hopes are with you xx
$20
Liz Williams
$50
Jane Loveday
$50
Anonymous
$20
Anonymous
$50
Leanne Hurley
$30
Jade Forwood
$200
Anonymous
$50
Jared O
$500
Coad88 Pty Ltd
We truly hope that this drug will prove to be effective for a little Sophie!
$500
Michael & Kerry Cook
$50
Anonymous
Stay strong Sophie xxx
$50
Hayley Wallace
$50
Anonymous
I read their story on the ABC and I’m Wishing the Stephenson family all the best!
$25
Christine Haley
$100
Anonymous
Wish success and a long happy life for Sophie and your family.
$1,000
Charlesworth Nuts
$500
Anonymous
$1,000
Samaras Group
$1,000
Woolcock Const Pl & Prodema P/l
$5k
Neil & Maricel Morris
Our prayers are with you little brave Sophie
$300
Christopher Wales
Keep fighting Sophie you are a true champion! Sending all the love to you and your family.
$100
Anonymous
$100
Anonymous
Unfortunately have some idea of what you are going through. Keep fighting.
$1,000
Aarbro Steel Trading Pty Ltd
$25
Just Someone In Brisbane
$200
Ann Gillespie
$100
Jessica George
Just letting you know that our family is upholding Sophie in prayers. 💕
$100
Julie Cooper
Praying for you Sophie. God bless you all. X x The Cooper Family
$25
Anonymous
All the very best for you and your beautiful family Sophie. You've got this and then some
$100
Thoroughtec Pty Ltd
$100
Peter Murray
$250
Richard And Kate Vines
With our very best wishes.
$1,000
David & Sue Stephenson
$100
Manoj
Keep going forward!!!!!!
$2.65k
Coco Adams
$100
Tom Hardy
$50
Jody Dillon
$100
Sue Zee Q
Xx
$100
Pipe Man
Xxx
$200
Rebekah Rhoades
$100
Anonymous
$100
Jurd Fam
all the best little one xx
$1,000
Robert & Ann
Sending our best wishes to Sophie and her family
$50
Kate & Greg Roberts
Wishing you all the best Sophie
$30
Brooke Williamson
$100
Dr Samuel Kyle
$30
Anonymous
$11k
Gordon Adams Pipe Sales Pty Ltd
We love you...xx
$500
David Rasheed
Wishing you the best of luck and thinking of you all from the team at Tilbrook Rasheed.
$10k
Gordon Adams Pie Sales Pty Ltd
XX
$30
James Vinokur
All the best, Sophie!!
$22
Nicole
Sorry it’s not much but it’s every last cent in my bank account. Good luck gorgeous
$1,000
K&a Laird (wa) Pty Ltd
Best wishes
$100
Mark
$100
Gary Tidd
Good luck Sophie...
$30
Stephanie Morris
$100
Bethany Kloeden
$500
Caroline Wells
All my love, hope and awe to Sophie and the whole Stephenson family xx
$500
Celia Whittle
With love from Caroline’s mum....for this precious child
$1.5k
David & Sue Stephenson
$50
J Mcilwraith
It’s a small amount but it all adds up.
$80
Aadi
From one Michael rice family to another . Sending you lots of love and strength.
$100
Rowena
Good luck Sophie and Stephenson family xo
$50
Sze Lay Ng
$25
Tammy
Xxx
$100
Anna Bouchard
$500
David Rohrsheim
I cannot imagine. Good luck to you and the little fighter.
Your a tough fighter Sophie and will win this one .. Sandra and David Jones , Adelaide.