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Hero Diaries – Week 9

Posted on March 15, 2018 by Spider-Ede Leave a comment

This week Edie has had 2 major operations and is back in ICU, but she’s still proving she’s a fighter and hopefully she can now get some rest and get on the road to recovery soon.

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Some of you may have already seen but Edie’s little brother was welcomed into the world on Sunday 8th September. This has been an emotional journey for the whole family but we are so happy with our little blessing. He is named Edward after his guardian angel big sister 💙🕷❤️

These past few weeks have been tougher than usual, even for us. Edie’s little brother Len, who is 2 and a half, started to complain his head was hurting. You cannot imagine and we couldn’t fully explain to you how this has made us feel 💔 In July 2017 at the same age, Edie first started to complain of headaches. Over that summer, we assumed it was dehydration and kept topping her up with fluids more regularly. Her headaches progressively got worse, lasting longer and were more frequent. Our visit to the family doctor ended up with a referral to paediatrics, just as a precaution, and then another referral from there for an MRI, again “just in case,” to then be told that Edie, our otherwise healthy little girl, had a fatal brain tumour DIPG and that she would have around 9 months to live 💔😢 And now, we have just had to relive the beginning of that nightmare. Len has had to go through all of the same tests as Edie did, including being under general anaesthesia for an MRI scan, which brought back so many memories of holding our girl in our arms while she drifted off before surgeries ❤️💙 Because of Edie and that now we do have a family connection to brain cancer, the radiologist was extra thorough. After what felt like a lifetime anxiously waiting and seriously expecting the worst, Len’s results were brought back to us in the afternoon. His scan was all clear with everything looking normal. We are relieved and exhausted. And we’re left questioning if we will ever not be stressed about our children’s health. After all, that monster was lurking in our daughter’s head for how long we don’t know but we couldn’t see it. Has going through DIPG with Edie changed us? Yes, it has. We see how fragile life is. We have spent the last few weeks watching Len play and imagining him disappear before our eyes. Would we say we are less positive? Less hopeful? Probably. Look what we have been through. It is so much harder to see the bright side, to not worry about our children. And did we feel like we were being silly, paranoid, over cautious? Yes, but we left Edie’s symptoms for over a month thinking they were dehydration or wanting to stay off nursery. We will never again be ab

We now believe Edie is watching over us, has sent us this blessing and she would be so pleased to have a new little brother. She loved babies and was such a fantastic big sister to Len. That is not all. As you know, we were supported by the Bradley Lowery Foundation. Well this hasn't stopped. Like the fantastic people they are, they offered us an amazing opportunity to keep Edie's legacy alive. We have remaining over £100k in Edie's account with BLF. And we know Edie would want us to try and find a cure for DIPG. So that is what we are going to do. Working closely with BLF, Researchers and Consultants, we are looking to use the money already raised as well future fundraising, to fund vital research into DIPG, in the hope that one day, we can cure our babies. We don't want any other family going what we are going through now. Edie will always be remembered for her big smile, mischievous attitude, and most importantly, the awareness she raised for DIPG. We hope you will all carry on supporting, and together we WILL find a cure 💪🙌🙏 💙🕷❤️ #DIPG #EdiesLegacy #DIPGAwareness #EndDIPG To donate directly into Edie’s DIPG research fund: Visit www.justgiving.com/campaign/spiderede

We know we haven't really done any personal posts for a while, as you can imagine, it has been and still is, extremely hard for us all as a family 💔 We just want to give you a little update, you all helped us so much get Edie treatment to try and save her, we feel that it is only right to let you all know how we are all doing and what our future plans are. Myself and Steve have taken time out, and we didn't really leave the family home much becoming quite unsociable and reclusive. We didn't know what we were doing, how we felt or how we were supposed to feel. If we cried we felt guilty, if we laughed we felt guilty, we have found it easier to stay in and limit who visited to close family that need no communication 😢 We've had time with Niamh and Len just the 4 of us. We missed so much of them when Edie was having treatment, but they both took it in their stride, adapting so well. They are so grown up for their age. Niamh is always talking about Edie, she draws pictures and writes notes for her, makes little bracelets to put on her hand cast. If we are doing something fun, she will say, “Edie would love doing this Mummy” And shes right, Edie loved life, and she would want us all to live our best lives now. Len is, well being Len. He has no fear just like his big sister Edie. We see a lot of her in him, especially the cheekiness and how he just knows how funny he is. He is still too young to understand fully what we have all been through, but we always talk about Edie, he sees photos and shouts her name, we know he will always remember his brave, funny, beautiful sister❤️💙 We are starting to look to the future without our little girl, and it is so hard, we know there will be good days and bad, but we are now a little more prepared and know it’s ok to have a bad day. We also have a little bit more news for you all. We are expecting another baby to join us towards the end of this year. We were shocked at first as it did take us by surprise. We have been through a rollercoaster of emotions from feeling horrendous guilt that we are somehow replacing our girl to feeling so blessed that we have been given the chance of something happy. *continued next post*

Day 17 of running 40-60 miles!! He’s on the final leg of his epic journey!🏃🏻‍♂️🏃🏻‍♂️ Super John Hammond is almost finished running the length of the UK! 🇬🇧 He’s already ran more than 800 miles over the consecutive days, which is unbelievable!! “Think everyone knows how much I’ve struggled through this and I have absolutely no idea how I’ve nearly got through it. I don’t even think it’s down to having a strong mind this time. I think it’s down to sheer madness” John, this morning as he started his last 50+ miles. John has almost reached his fundraising target for his 5 charities, we ask you all to please dig deep just as he has to complete this challenge and give him a massive boost by donating as much as you can to help him reach his target! 🙏🙏🙏 Well done John, last push and you are there! You truly are a hero! 🙌 www.justgiving.com/crowdfunding/helphammo Here are some photos of John with our family, the support he has always shown us is unwavering and we are so proud of him as we know Edie would be. 💙🕷❤️

"If a drug company came up with a drug for DIPG, it would take them 10 years, and cost them 100 million bucks, and they would treat 15-to-20 kids a year - so there is no return on investment for them," Dr Dun said. This quote is taken from an article published in the Newcastle Herald online, Australia. Our question as parents, families, communities is are our children not worth the investment??? #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG #ResearchMatters To donate directly into Edie’s DIPG research fund: Visit JustGiving.spider-ede.org.uk

🏅Keep going John🏅 Super John Hammond is running the length of the Uk to raise money for 5 local charities! John o’groats to Land’s end, 874 miles! 🏃🏻‍♂️🏃🏻‍♂️ He’s over half way and doing amazing! Running around 40-60 miles a day 😱 Today we got up early to chase him down and cheer him on before school! We are incredibly proud of you John and feel so lucky to call you a friend! 🙌👏 We’ll be keeping track of John’s progress and you can too on his twitter account @johnammo29 You can also show John your support by commenting some words of encouragement or donating at www.justgiving.com/crowdfunding/helphammoeverystep

🌟Raffle time🌟 As you all know, we are continuing to raise funds to help with DIPG research, in the hope that one day a cure is found and families no longer have to go through the heartbreak of what we have❤️ This means events will occasionally take place and we have one this Sunday! Our past boat trips have been a hit, the weather is hot and dry in the evening, what better way to spend it than sailing up and down the Mersey with a live band and a drink in hand. ⛴🎤🍻 We are raffling off 2 pairs of tickets for just £1 per entry - 2 chances to win! 🎟 🎟 If you would like to enter, please comment below and we will message you with payment details. Raffle will be drawn on Saturday evening! ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk #EdiesLegacy #DIPGAwareness

The last 7 months have been awful. After we lost Edie we had many well wishes, cards, letters, gifts, notes. At the time we couldn’t read them 💔 Today we pulled the rainbow bag out that Iwe had “shoved them all in”. We’ve only managed to read 3 properly but feeling so overwhelmed with love. We know that over time we will read through them over and over. The shoes you see in the corner are Edie’s favourite old shoes, hand-me-downs that she loved to wear on the wrong feet 🙈 they ended up in the bag as we sorted through some things and decided we wanted to keep them and somehow get them box framed 😍 We didn’t acknowledge anyone that sent us these things and we know you didn’t expect any recognition but we do want to say THANK YOU. It is a massive comfort knowing the love our girl has. ❤️🕷💙 #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG #ThisIsGrief To donate directly into Edie’s DIPG research fund: Visit JustGiving.spider-ede.org.uk

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