Update from Sophie's father, Robert 01/06/2020:
"We are going okay... Sophie has had two major surgeries recently and more to come she is very weak tired and still in some pain but keeps on battling on with her strong will and smile."
Updates on Sophie's story Sophie was two and half years old... ...when we took her to loads of doctors and specialists as she had been unwell on and off for weeks and we knew something wasn't right but they just kept saying, “its a virus, its a virus”. One morning, she woke up, was eating her breakfast and then suffered a massive fit. That’s when our world come tumbling down.
She was taken to John Hunter Hospital for emergency surgery to release the pressure in her brain. In the waiting room in intensive care in front of everyone we were told she had something in her brain that looked like a tumour. They tried to get it out but couldn’t. She was transferred to Westmead Hospital and Dr Dexter got the whole tumour out. At first we were told it was not cancerous and then four days later we found out it was and it was bad and she may not survive. Our Sophie went through ten months of intense chemo. She was stronger than the adults. They didn't know what they were dealing with, as it was very rare. She got really sick with the chemo and ended up with a bad case of mucositis where her stomach was being drained. We nearly lost her then too.
She was also in a lot of pain but she would never yell at us, as she is a child that never complains and always smiles. She was on nasal feeds that whole time plus few months after it all she lost all her strength and had to learn to sit stand and walk again play again talk and other things that was hard for us and her. She got very upset and frustrated with herself. She is still starting over with speech and very weak in her muscles but walks parts on her own now. Sophie will need a lot of special treatment with her feet and she will never be able to look up anymore and cannot focus properly anymore. In the last few months she has also had two emergency surgeries as her shunt has been blocked. This set her back again too but she is a trooper who always battles on.
Our children were deeply effected by this too as they are all close and love each other very much. We keep battling on as my husband is not a well man either with chronic fatigue, chronic depression, bi polar and damaged back with discs removed. He gets very upset that he can’t provide for us but I tell him that were just happy to have him. We always say there's others worse off and that helps to get us through the days. Sophie is our miracle child. Sophie needs play equipment to help her strength come back travel costs is a big thing too also she loves books and stationery to help her speech and fine motors skills. Thank you for giving us the chance to give you our story. It’s hard as no one knows much at all about this tumour 7th in the world. Thanks again we wish all rare cancer patients the best. "PLESE NOTE THAT ALL FUNDS DONATED FOR SOPHIE WILL GO TOWARDS HER REHABILITATION.”
My Updates
Feb 2025 update
Wednesday 26th Feb
Sophie is doing well in herself she has had many more appointments, procedures surgeries etc going on and this will continue into the future due to all the complications of her tumour and treatment.
Sophie has had multiple eye surgeries and will have more to come. She has had to deal with hormone treatment which has had its own complications . She has had to have multiple scans, blood tests and other tests done on a regular basis as they have found a Gene that has caused her cancer that may cause a huge threat of it coming back. This Gene also has been found in her father and sister which we are monitoring closely.
These procedures are all done at Westmead Children's Hospital and Sydney Eye Hospital which is a long drive from our home and when it is at the eye hospital we cannot stay at the McDonald house either.
Sophie also has multiple therapy appointments - occupational therapy, speech therapy and physiotherapy. She needs a lot of extra support equipment around the home for example wheelchair, special car seat and hospital bed. Plus all the things to make her everyday life easier - special pencils, scissors etc she also has no control of her toilet needs and needs continence care too.
Sophie has ongoing pain in her joints and muscles due to being bed ridden for twelve months of treatment which has led to arthritis as her hip and knees are out of alignment.
She will always need constant care and support throughout her life.
We are not ones to ask for help as we have always tried to manage on our own but we are doing this for Sophie as she needs this extra support to get to and from medical appointments, therapy visits etc and also to be able to live life to her fullest.
We appreciate all the love and support we have already received so far and want to thank you all very much and hope all rare cancers families do well. Hope this helps once again thankyou.
ShareThank you to my Sponsors
$5
Anonymous
$420
St Joseph's Primary School Bulahdelah
Good luck, our prayers and thoughts are with you.
$500
Anonymous Donor
$2
Anonymous Donor
$2
Anonymous Donor
$2
Anonymous Donor
$20
Kim Mcgill
To help Blake raise money to buy Sophie a new bed for Christmas
$20
From The Adams Family
Thanks for helping Blake. We're thinking of you Sophie
$100
Sheryl Rumbel
Good luck Blake
$15
Scott And Rachael Paterson
Good luck Blake
$10
Cherylynne Perry
Thanks Blake
$10
Ernie Perry
Good Job
$50
Kerry Hohol
Great work Blake. Thinking of you Sophie and family.
$20
Nicole Fox
Take care little lady! Xx
$48
Yvonne Dixon
Great Work Blake
$220
Old Bar School "spider" Fundraiser
Blake sold spider soft drinks at school, this is the money he raised
$600
Blake Dohnt's Chocolate Sales
The money Blake and friends raised by selling chocolates
$4.62k
Lemmey Secker
Best wishes on your journey
$50
Emie Borthwick
Donated as part of Lyn Lemmy-Secker's fundraiser. Good luck!
$10
Liz Holmes
Donated on behalf of Lyn Lemmy-Secker's fundraiser. Good luck!
$20
Anonymous Donor
Good on you Blake! So proud of you xo All the best Sophie xoxo
$100
Therese
Hi Bec, I'm so sorry to hear this has happened to your daughter. Wishing you and Sophie all the best
$20
Sonya Robins
Donated on behalf of Lyn Lemmey-Seckers fundraiser
$500
Phil And Danielle Stephenson
With our very best wishes for Christmas
$20
Anonymous Donor
$20
Trudee Flintrop
Here's to a brave little girl, your story capture my heart ♡
$20
Anonymous Donor
$100
Chen Family
$100
Kate Shaw
$250
Helen And Kevin Wyld
An incredible story. We hope that this will cover some fuel costs to the treatments.
$60
Mark Oliver
$50
Anonymous Donor
$200
Evergreen
Sorry we couldnt be there tonight - hope it goes well
$50
Nathan
$100
Julie Orr
$250
Anonymous Donor
$200
Jim Clegg
With best wishes for your recovery
$3.23k
Fundraising Dinner
$50
Andy Laidlaw
Best for everything
$2.5k
Anonymous Donor
$417
Jack & Co Food Stores
Funds raised through 20 cent Tuesday
$750
Kew
Some funds for fuel and car rego
$400
Sergey Bakhmat
$500
Causley Family
Stay strong little one and family
$1,000
Helen And Kevin Wyld
We hope that everything is getting better in your lives. Best wishes, Helen and Kevin.
$10
Anonymous Donor
$250
Causley Family
Stay strong little one
$500
Dalwood-wylie Foundation
All the best for your treatment from Helena Wylie, Managing Director of the Dalwood-Wylie Foundation
$250
Helen & Kevin Wyld
$30
Anonymous Donor
$10
Katie Elderton
Sending love and prayers Sophie x
$100
Julia Carlomagno
$250
Richard And Kate Vines
With our very best wishes. Stay strong.
$100
Amanda
Stay strong. You little daughter seems to be very strong and special. All the best.
$100
Victoria Stone
Wishing you all the best xx
$100
Team Smith
$2.46k
Proceeds From Lynette Large "shed A Dread" Fundraiser
Funds donated by Lynette Large from a fundraiser for shaving her dreadlocks off.
$10
Ally
Stay strong Sophie, our thoughts and prayers are with you.
$50
Vivien Deed
I donate already to BTAA because I had a brother die from an Astrocytoma. I hope for the Best News
$250
Rf
I hope this helps, God bless.
$30
Katherine
Is not much but is from the bottom of my heart.. my thoughts are with you little girl!
$100
The Cunningham Family
Angus was very touched by your story. We wish you all the very best.
$400
Anonymous Donor
Good luck with the everyday battles
$50
Catherine Gildea
In memorial to Helen Winslade who was lost to a rare cancer. She wished to help others in her passin
$50
El
All the best. You are being so brave.
$500
