It’s been an emotional rollercoaster this week, but we’ve got through it and our little DIPG warrior is still fighting thanks to the love and support of everyone back home.
Tag Archives: dipg
Edie had a follow up appointment today and from what the doctors have said it’s pretty positive!
The area of enhancement from the first scan, although bigger, was no longer enhanced, this could mean that the tumour is actually dying! Another good thing was the spectroscopy values, in particular choline, the amount of choline present tells you how much cellular membrane turnover there is, or in other words how active the tumour is. Well the value of choline has halved since the last MRI! This would say that the growth of the tumour is caused by necrosis (tumour cell death) and inflammation.
With these results Edie is now a perfect candidate to be given another type of drug that makes the tumour more receptive to chemotherapy and immunotherapy drugs, and we start her with those tomorrow.
Hopefully we can build on this and continue breaking the tumour down to nothing.
As you can see, Lenny found the meeting very interesting! 🙂
The Wirral Globe has published an article on this news, along with some updates on the appeal, you can read the story online at: Brave Edie receives fantastic news during treatment for inoperable brain tumour in Mexico.
The first of hopefully many video diaries has just gone live on our YouTube channel. It features Ashleigh and Edie talking about how things have been, how the first treatment for Edie went and what they’re up to in between the hospital visits.
I spent a little while looking over this photo and deciding if I should post it or not. I’ve decided I should. Whilst it’s not distressing to look at for an outsider, this is the epitome of heartbreak for us. Spending a day in the hospital, whilst they sedate your baby to see if her tumour has grown. This is the reality of DIPG, it’s known for its aggression it’s known for its mercilessness. How could this happen to someone so small, innocent and fragile? How is that fair? It‘s not, it’s not fair to us, and it’s certainly not fair to Edie May. 😭
Please, please keep sharing our cause, please keep flooding your news feeds with her face, please keep telling anybody who will listen, and shout it to those who won’t. This is a life, a life that could be saved with the help of other people. In fact, it’s not just one life, it’s many. By helping save Edie, you’re saving our whole family, not just Ashleigh and Steve, not just Niamh and Lenny, but all of the Grandparents, Aunties, Uncles, Cousins and even friends that she means the world to. Please keep our mission going, help us with every fibre of your beings. You’ll be saving lives. Thank you
Yesterday we had a letter from the Instituto De Oncologia Intervencionista, confirming our acceptance onto their DIPG treatment program. They’ve had all of Edie’s medical information, scans, videos of her and have agreed to proceed with treating her brain tumour. We will therefore be leaving for Mexico ready for when they open up after Christmas and will be there for most if not all of January.
This is a huge step forward for us however this means now more than ever that we need your help to raise vital funds to allow us to keep her on this treatment path.
Please help in any way you can:
*** SOLD OUT ***
Location: St. Joseph’s Social Club, Greenbank Rd, Birkenhead CH42 7JY
Date: 7.30pm Saturday, 3rd February 2018
Cost: £10 per ticket, all proceeds going to The Spider-Ede Appeal.
There will be a 12am bar and a Holiday will be won on the night! Live music with Hush and lots of raffle prizes (full prize list to be confirmed soon)! Contact Carol Stading at email@example.com for tickets.