The Spider-Ede Appeal

Raising funds and awareness of DIPG

Donate
Facebook
Twitter
Instagram
YouTube
Merchandise

Search for:

Menu

Home
About Pages +
News & Events
Fundraising
Upcoming Events
Contact Us
Thank You Pages +
Merchandise +
- Purchase Merchandise
- Photo Gallery

Hero Diaries – Week 4

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

Family enjoying Pizza

Ashleigh talks about the current treatment for Edie plus some videos and photos from the last week

Share this:

Click to share on Twitter (Opens in new window)
Click to share on Facebook (Opens in new window)
Click to share on Google+ (Opens in new window)
Click to share on LinkedIn (Opens in new window)
Click to share on Pinterest (Opens in new window)
Click to share on Pocket (Opens in new window)

Like this:

Like Loading...

Related

tagged with mexico, video

Diary
News

Leave a Reply Cancel reply

Enter your comment here...

Fill in your details below or click an icon to log in:

Email (required) (Address never made public)

Name (required)

Website

You are commenting using your WordPress.com account. ( Log Out / Change )

You are commenting using your Google+ account. ( Log Out / Change )

You are commenting using your Twitter account. ( Log Out / Change )

You are commenting using your Facebook account. ( Log Out / Change )

Connecting to %s

Notify me of new comments via email.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Donate Online

Upcoming Events

12th October - Birthday Ball, Hillbark Hotel, Wirral

To view our full calendar of upcoming events, visit our Upcoming Events page.

Other ways to Donate

The Spider-Ede Appeal – DIPG Awareness

The Spider-Ede Appeal – DIPG Awareness

Latest

Recent
Popular
Comments

Update – Monday 17th September
September 17, 2018
Update – Monday 10th September
September 10, 2018
Update – Friday 7th September
September 7, 2018
Hero Diaries – 9 months on
August 30, 2018
Lenny
August 28, 2018

Running for Edie
January 3, 2018
Buy a Spider-Ede Bracelet
December 22, 2017
New YouTube Channel
January 2, 2018
Race at your pace challenge
January 1, 2018
Sycamore Brew Beer Run
January 6, 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

Follow The Spider-Ede Appeal on WordPress.com

Upcoming Events

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

Instagram

Ok guys, with Edie’s unexpected hospital stay these last 2 weeks we are asking for your help again. Just a small donation from everyone each payday will make a huge difference 🙏🙏 ⏰It’s time for Edie’s... £2️⃣ payday pledge! ⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇ Edie needs your help, we’re asking you all for just £2⃣each payday ✅Yes, just £2! ✅Yes, we could ALL save her life! ✅Yes, £2 matters! ✅Yes, she needs you! ✅Spread the word, share this post! ✅Can you tag 3 friends you think would like to help? Text ‘Edie03’ followed by £(up to £10) to 70070 Or... https://www.justgiving.com/campaigns/charity/thebradleyloweryfoundation/spideredie Follow the link, go to ‘other amount’ and enter £2! Even £1️⃣ matters! #donate #charitytuesday #childhoodcancer #raiseawareness #bebold #payday #morethan4 #dipg #dipgwarrior #dipgawareness #fight4edie A little thank you video from Edie back when fundraising first started in December 2017 😍😍

❤️Quick update here everyone before we try and get some sleep💙 Surgery was successful, both shunts are now functioning again 🙌 she’s stable, breathing well and all her vitals look good 🙌 Blood samples taken after yesterday’s surgery showed that Edie had low haemoglobin levels. So she needed a blood transfusion to give her some help 💪 This small act of donating blood that somebody, somewhere took the time to do has just helped Edie fight for her life. If you can, please consider donating blood at your local blood bank. Donated blood saves so many lives everyday! Thank you all, beautiful people for praying and sending your positive energy to our little warrior again! You never let us down 🙏🙏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness https://m.facebook.com/thespideredeappeal

Last night the surgeon came, he said they could only fit Edie in at 10pm. He didn’t want to take her in so late. So instead he manually drained 30cc of fluid using a syringe direct from the valve. This gave Edie instant relief, her pupils were smaller straight away. Today Edie will go in for the surgery in the next couple of hours.🙏🙏🙏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness https://m.facebook.com/thespideredeappeal

Here we go again 🎢🎢 Wednesday night Edie graduated from the ICU and made it to her own regular room where we can stay in with her 24/7 🎉🙌 She has been training to breathe for herself having periods without assistance and she’s been doing great! Edie has been breathing on her own with oxygen since 2.30pm yesterday. 🙌💪 On to today. The Doctor sent Edie for a CT scan to check her new shunt is working. It’s not. 😔 Our girl needs surgery again! She’ll be going in to theatre tonight. She’s in a better clinical condition than last week with the pneumonia cleared up more but it is still a risky procedure. Last week you all got her through, she had so many prayers and positivity sent! So we ask you once again to send her everything you have 🙏🙏🤞🤞 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness https://m.facebook.com/thespideredeappeal/

Don’t ever think anybody that describes DIPG as an emotional rollercoaster is exaggerating. ⬆️⬇️⬆️⬇️⬆️⬇️⬆️⬇️⬆️⬇️⬆️⬇️⬆️⬇️ Yesterday morning we noticed Edie’s pupils had changed, one was bigger than the other. The Doctor came and checked her over. It was a minimal change and nothing to worry about too much but if it continues she could go for a CT scan. Only 3 hours later the left pupil had grown in size too and they were both irregular shape. This time she had a higher temperature, cheeks were red and blood pressure high. Well, it turns out our little fighter had been struggling because she was trying to breath for herself but the ventilator was stopping her rhythm so she was fighting against it. The Doctors took away all assistance just leaving her with the concentrated oxygen. Her pupils recovered, stats went back to normal and she was successfully breathing for herself! 💪💪🎉❤️ The Doctors decided to take her for a CT scan anyway just to be sure and we agreed. We left the ward so they could set her up ready to move her. Maybe 10 minutes passed while we were waiting. She should of followed us out quite quickly😰 We were already anxious when we saw more than 12 different staff running from different directions into the ward Edie is on.🚨🚨🚨 I just knew it was our baby. What had happened? who can we ask? Another eternity (probably only 15 minutes) passed and she still wasn’t out, we were pacing, speculating. We sent a message to Ede’s Primary paediatrician, explaining we were worried and if he could find out. He let us know that it was for Edie, she had to have her tracheostomy cleaned before moving her to a CT scan. A blood clot blocked the airway preventing her from getting any oxygen, her oxygen levels plummeted dangerously and they had to make the emergency call within the hospital😰😰 Once the airway was cleared Edie lost a little blood but was stabilised quickly 🙏 She is now back on ventilation but on minimal support again🙏 A day in the life of DIPG. But, she is alive, we do have life and she is putting up a hell of a fight for hers! 💪💪💪💪 💙🕷❤️ JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPG

⭐️🐎 We have 2 more events coming up 💃🏽⭐️ As well as The Spider-Ede Birthday ball, we have 2 more events in the near future! Any of our Liverpool supporters fancy a night on the tiles! We have a night of live music and entertainment in the lovely Devonshire House 💃🏽🕺🏽 Or how about a night at the races, peaky blinders style 🐎 including live music, games and raffles! Please see the posters for more details. ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

It’s been only 1 week since we brought Edie in to hospital. We sit at her bedside everyday ❤️ We see the improvements Edie has made and she amazes us. Edie is now on minimal support from the ventilator with only 40% oxygen concentration (100% when she came in)🙌 Her lungs are looking clearer, blood tests are coming back normal🙌 She responds to touch instantly🙌 We know she is our hero and so incredible. But to know that she also shocks the Doctors with her strength and resilience makes us even prouder of our little fighter!! Against all of the odds she fights this monster 💙🕷❤️ JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness https://m.facebook.com/thespideredeappeal/

🏆🏆 A week for Heroes 🏆🏆 A Very big well done and thank you to Greg Weston, after a brain injury, Greg was told by doctors he would never walk again... yesterday, Greg completed Snowdon ⛰💪🏽 and chose to dedicate this massive achievement to Edie ❤️💙 If you wish to sponsor Greg, please follow the link! https://www.justgiving.com/fundraising/gregweston Another congratulations to John Hammond for receiving The Echo’s fundraising award last night.. The amount you do for Edie as well as many other families in need is absolutely amazing and we couldn’t think of anyone who deserves the award more! Thank you for all you do! ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Our girl is doing well up to now🙏 Her pupils have improved meaning that the new shunt must be working and relieving the pressure 🙌 The Doctors have found the specific bacteria causing the infection and are targeting it with the antibiotics 🙌 The X-ray of her lungs show that the pneumonia is starting to clear up 🙌 Today they will begin to lower her sedation, let’s pray for a good response. Your prayers and positivity have got us so far, please keep it all coming 🙏🙏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness https://m.facebook.com/thespideredeappeal/

Tags

300 alder hey anfield ann summers appeal avengers awareness baking bingo birkenhead bracelet breaking news burlesque cake cancer cartoon charity child friendly christmas collecting crafts dipg donation donations edie family family friendly featured fight4edie food funding Fundraising gift head shave hospital icu interview ladies night lfc liverpool madhouse media medical merchandise mexico monterrey mri scan music nativity News pantomime party press radio raffle Research running scan results school shopping social media softplay spider-ede spider-man sponsored sports superheros supporters thank you tranmere treatment update video vlog Wirral

Follow The Spider-Ede Appeal on WordPress.com

Please note that as an Amazon Associate I earn from qualifying purchases.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Our Cookie Policy

%d bloggers like this: