❤️🕷💙 Long awaited Edie update 💙🕷❤️
Edie has been doing fine, I know a lot of people worry when we go quiet. But it’s really because not much has changed. She continues to play sleeping beauty, whilst every week she has an extraction of fluid from the cyst.😴
At first the surgeon was extracting 7/8cc twice a week, but this week he has increased the extraction to 12cc. Edie is now strong enough that she no longer has to go to the hospital for the procedure and it can be done in the clinic.
When we first found the cyst we put Edie on a course of steroids to help bring the swelling down, she is completely off steroids now but still has a little puffiness around the face.
Next week we really hope that Edie will be starting a course of immunotherapy again. Although she has been doing well and remained stable we need to be making a push to attack the tumour direct. 👊👊
She will continue to take the many natural supplements that we have been giving her alongside the immunotherapy and hopefully we can have some good results to share with you all before too long🤞🙏
As always keep Edie in your thoughts and prayers. Send her love, support and all of the positive energy you can spare. 🙌
With Immunotherapy starting back up again things are going to get more expensive and funds will begin to take a hit. Please consider attending any of the Spider-ede events, all funds will help her fight this. If you can’t make it to any events please donate anything you can towards Edie’s treatment 🙏
Text EDIE03 £? to 70070
IronLen, Edie’s little brother had only just turned one when his big sister was diagnosed last November.
Over the time as well as the worries for Edie and for Niamh her big sister and best friend. We found ourselves questioning Len’s understanding, if the worst was to happen how much of his sister would he remember?💔
He went from being a boisterous wrestling partner for Edie to being the most loving, caring and gentle protector of his big sister ❤️❤️
When Niamh and Len travelled back home to England our fear was he would begin to forget Edie but that is far from the case. We video call and Len shouts “Eeeedddie” 😍😍
There is no doubt about it, he loves and misses his little big sister!👫
Text EDIE03 £? to 70070
My beautiful little girl, 3 years old, lights up any room just by walking into it. She’s funny, loving, caring and just absolutely adorable!
We’ve just found out that she has inoperable brain cancer! Why? Just why?? How is that fair?? This cancer, up to now, has been a death sentence and any treatment only makes it come back quicker and more aggressive.
I’d give anything to take it away from her, sadly nowhere in the UK or Europe can, her best chance of survival lies in Mexico and the pioneering treatments they’re doing there. 2 children in as many months have now been classed as NED or No Evidence of Disease! This has to be a good enough reason to get there?!
We are trying to raise as much as we possibly can, as quickly as we can.
Anything you can give or do to help, however small the effort or donation could make all the difference.
A massive thank you to all who can help us!!
Make a Donation
Our crowd funding page is officially live! Please donate as much or as little as you can to help us get our baby girl to Mexico!
30th November 2017 – Steve and I had the most heartbreaking news we could ever imagine. After months of headaches my three year old daughter Edie was referred for an MRI with suspect migraines. The result of these scans came back that Edie has a 3.4cm tumour in her brain stem. We then went straight to Alder Hey hospital in Liverpool, where she had a more advanced MRI scan on the Friday. She still has to go through more tests but the specialists believe it could be a Diffuse Intrinsic Pontine Glioma (DIPG). This is a rare cancer that effects children and so far is untreatable, incurable and fatal.
5th December 2017 – We returned to Alder Hey and Edie got to meet Dr Ranj filming for CBeebies. We spoke to a number of specialists and were left with a lot to think over. After meeting Lucy from Lucy’s Pineapple Fund, we also contacted the Instituto de Oncologia Intervencionista in Monterrey, Mexico, a group of doctors specialising in DIPG treatment who asked for a copy of Edie’s brain scans and a video of her in person.