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Hero Diaries Week 8

Posted on March 5, 2018 by Spider-Ede Leave a comment

This week Edie has been in ICU all week.

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4th August - Super Hero Car Wash, St Joseph's Social Club, Birkenhead
12th October - Birthday Ball, Hillbark Hotel, Wirral

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The Spider-Ede Appeal – DIPG Awareness

The Spider-Ede Appeal – DIPG Awareness

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Postponed: Greg’s Sponsored Climb
August 8, 2018
Spider-Ede’s Birthday Ball
July 6, 2018
Love 80’s Liverpool Roadshow Fundraiser
June 5, 2018
Cheesy Bingo!
June 4, 2018
Weekly Roundup 3rd June
June 3, 2018

Running for Edie
January 3, 2018
Buy a Spider-Ede Bracelet
December 22, 2017
New YouTube Channel
January 2, 2018
Heroic Endeavours
May 24, 2018
Bake 4 Edie – DIPG Awareness
April 21, 2018

Postponed: Greg’s Sponsored Climb | The Spider-Ede Appeal on Heroic Endeavours
BEZ on Spider-Ede Rocks!
Pak H Chan on The Spider-Ede Sunset Cruise
DIPG Awareness Day – 17th May | The Spider-Ede Appeal on Bake 4 Edie – DIPG Awareness
Louise on Spider-Ede Appeal Charity Evening at the Gladstone Theatre

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Upcoming Events

Great North Run September 9, 2018 at 9:00 am – 1:00 pm Newcastle Upon Tyne Ran by Steve Copeland
Edie’s Birthday Ball October 12, 2018 at 6:00 pm – 11:55 pm Hillbark HotelnFrankby Road, Wirral, CH49, England
Scouse 5k October 28, 2018 at 9:00 am – 12:00 pm St. George's Hall, Liverpool Ran by Steve Copeland https://www.merseyraces.co.uk/echo-scouse-5k.html

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Sorry everyone for lack of updates after the MRI on Thursday. We’ve moved quite fast afterwards. Meeting Doctors and planning next steps. It seems that the cyst had filled some more which is easy to fix. But also that the tumour has expanded as we feared 😢💔 We are still unsure to how much is active tumour and how much is destroyed tumour tissue🤞🙏 Today Edie went into hospital to get some of the fluid drained out of the cyst again. She was in for 20 minutes and all went well. We had to stay in the hospital for a few hours while they monitored her. I climbed into bed with her for a cuddle and we fell asleep together 💤 💤😍 Edie was discharged shortly after and resting at the apartment now. 💙🕷❤️ JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Well done baby! 🙏🤞🙏 MRI and EEG all done, we wait to see the Doctors in the morning to get a clearer idea of what’s changed ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

COME ON EDE!! 💪💪💪💪 In an hour Edie will be going in for an MRI! Come on everyone, we need your prayers 🙏 We would love more than anything some more good news from this! We are nervous and scared everytime. But we know our baby is incredible! She has already shown how amazing she is and how hard she is working to beat this monster!! ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

On Friday after Edie’s cyst had been drained we saw some hopeful improvements, Ede opened her eyes, responded to us and had lots of little drinks of water orally🎉🙌🙌 Then Saturday came Edie was discharged but our cheeky girl fell back to sleep, she does keep having little peeks, opening her eyes slightly.💤💤 What do we think?? Well, we really don’t know, I’ve said this before and I’m sure I’ll say it many more times this is an emotional rollercoaster at the extreme. Our plan is that we will get Edie in for an MRI this week earlier than we had planned. Let’s see what’s going on. Our hope is that she is resting after having brain surgery or at least it’s just that the cyst may have filled up again which would be an easy solution to drain. But our fear is that now that the cyst has been drained and created more space the tumour has been allowed to expand again 😔😔 🙏🤞🙏🤞 Please continue to send her all your love, support, prayers and positivity! She needs it and so do we! 🤞🙏🤞🙏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Tickets have arrived if you wish to join us on The Spider-Ede cruise ☺️💃🏽🕺🏽

💙🕷❤️ COMPETITION TIME ❤️🕷💙 Who’d like to win a pair of tickets to the event of the year...Spider-Ede’s Birthday Ball? This will be held at the exclusive Hillbark Hotel, on Friday 12th October! Tickets include 3 course meal with wine, and lots of entertainment during the evening including a performance from Ray Quinn! To be in with a chance of winning all you need to do is follow these 3 simple steps: 1️⃣ Like this post 2️⃣ Share this post 3️⃣ Tag the person you’d take with you Good luck everyone! Winner will be announced Saturday 1st September, giving you enough time to sort your outfit, babysitters etc 😉 You can order any tickets by clicking the link ⬇️⬇️⬇️ https://spider-ede-appeal.org.uk/2018/07/06/spider-edes-birthday-ball/ Thankyou for supporting The Spider-Ede Appeal 💙🕷❤️

We can’t wait for this event, can you?! Spider-Ede’s Birthday Ball is to celebrate a massive milestone, Edie’s 4th Birthday 🎂 Come and join us for this amazing evening 💃🏽🕺🏽 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

The smallest of victories 💪💪💪 Even the smallest movements we haven’t seen for so long, she’s been very limp and unresponsive. This moment that she lifted both arms up, she was showing how strong she is 💪 this was huge for us! We know that there is a way to go and regarding surgery recovery it is only early days but she’s already showing us her strength & determination. Her will to live! We are all so unbelievably proud of her! 💙🕷❤️ JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

She did it!! With all her strength & super powers Edie’s surgery today has been successful. She has had 5ml of fluid drained from the cyst 🙌 We now wait for her to have some rest and hope to see some clinical improvements 🤞 Huge thank you to the amazing surgeon Dr Leos and his team of professionals at Hospital Christus-Muguerza that performed the surgery and kept us well informed every step of the way knowing how worried we were. 👏👏👏👏👏👏👏👏👏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

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