Tag Archives: dipg

Fly High Edie May

**upsetting images of reality**

It is with indescribable pain that we have to tell you all our baby gained her angel wings at 1.30pm yesterday afternoon

๐Ÿ’”๐Ÿ’”๐Ÿ’”๐Ÿ’”

I literally have no words to say anything more right now. Please keep us in your hearts. We are heartbroken and lost but so proud of how hard Edie fought and how many peoples lives she touched. An inspiration to us all.

Edie, you are forever our baby โค๏ธ๐Ÿ•ท๐Ÿ’™

13/10/14-22/10/18

Update – 21st October

Not so long, but overdue…..

Sorry everyone. We have had a really crazy week. But we know how worried you have all been.

Unfortunately, we didnโ€™t get the results we hoped and prayed so hard for from the EEG.

It showed very little brain activity ๐Ÿ’”๐Ÿ’”๐Ÿ’”

This hit us hard, and not even a week after we had been organising her birthday ball we began to make funeral arrangements for our 4 year old daughter.

Then she gave us hope. Her oxygen saturation had dropped and Doctors explained it will probably continue to drop and not come back up, they told us her heart would then slow and her body begin to shut down completely.

Well, her oxygen saturation came back up that night and hasnโ€™t dropped since ๐Ÿ™๐Ÿ™๐Ÿ™๐Ÿ™

We will continue to wait and let Edie take us the direction she needs to go. She is simply on ventilation, medication for pain and inflammation and natural supplements.

Better news is that today Auntie Kirsty arrived in Monterrey with WonderNiamh and IronLen. They have certainly raised spirits all round and today our hearts are a little fuller again โค๏ธโค๏ธ

๐Ÿคž๐Ÿคž๐Ÿ™๐Ÿ™Come on Ede ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž

โค๏ธ๐Ÿ•ท๐Ÿ’™

JustGiving.spider-ede.org.uk

Text EDIE03 ยฃ? to 70070

Update – October 18, 2018 at 10:11PM

Ok everyone, we need your help.
Edie will go for an EEG in the next hours.
Due to the sudden lack of physical response the Doctors will carry out a thorough test of neural activity. ๐Ÿ™๐Ÿคž We need you to please put your all into Edie, ask whichever greater force you can. Ask that Edie shows us what to do next.
We are really lost right now in between complete hope for her to recover and that we want to be at peace with our decisions.

This is from one of our incredible supporters, a comment that yesterday stood out to me:
โฌ‡๏ธโฌ‡๏ธโฌ‡๏ธ
โ€œThoughts become things! Everyone please think/pray/meditate and focus on Edieโ€™s recovery! Positive vibes all round!โ€
โฌ†๏ธโฌ†๏ธโฌ†๏ธ
And so we ask only this of you tonight ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž
via Instagram

Update – October 17, 2018 at 08:56PM

A picture speaks a thousand words.

I have debated putting this photo up. Not because of how I look, that is so far from my concerns.
But for fear people will shy away from seeing the real pain.

Yesterday Edie was doing AMAZING, almost off ventilation and taking so many breaths for herself.
All of a sudden in the afternoon she started to breathe irregularly, we alerted the medics. The ventilator was turned up and she was given a check over. She had become limp and unresponsive.
The Doctors took her for a CT scan, the initial thought was that there may be a bleed on the brain. I never thought Iโ€™d say โ€œunfortunately there is no bleed on the brainโ€

The only visible culprit is the Tumour
Has it taken another function from our baby??
We just have to wait, there has still been no improvement. We pray for a miracle ๐Ÿ™๐Ÿ™๐Ÿ™ So why did I take this photo? We need you to see the reality of this, the raw hurt it causes. On the exterior we know we look strong. But when nobody is looking, sometimes not even our family, this is the time our worries creep in and we crumble.
All of the questions what? why? If?

Looking back at the photo is so strange with the โ€œhappyโ€ birthday decorations in the background. Just another reminder of how quickly things can change.

Please send Edie all of your prayers and positivity. Only she can step up her game right now and push back. She has done it before! ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž
We believe in her and we believe in God ๐Ÿ™
โค๏ธ๐Ÿ•ท๐Ÿ’™
JustGiving.spider-ede.org.uk
Text EDIE03 ยฃ? to 70070

Update – October 13, 2018 at 07:55PM

Today we will be filling the day with Edieโ€™s favourites:
Story books, “Dirty Bertie” ๐Ÿ™ˆ and “Weโ€™re going on a Bear Hunt”, favourite movies, “Beethoven” and “Home Alone”.

The wonderful nurse in with Edie today hand made a birthday sign for the wall!

Friends have visited and we will see more through the day!๐ŸŽ‰๐ŸŽ๐ŸŽˆ This is an extra special day! Our warrior is 4! And like most birthdays when she asks “am I like Niamh now?” we have already explained to her “it was Niamhโ€™s birthday last month so she is 5” ๐Ÿ˜๐Ÿ˜ forever chasing her sister!! Thank you all for your wonderful love-filled messages, we have showered her with love and will do all day. Last nights birthday ball was amazing, we looked through photos and watched videos, playing them to Edie. ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰

A day of positivity, complete positivity!

Happy Birthday Baby Girl! ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰
โค๏ธ๐Ÿ•ท๐Ÿ’™
JustGiving.spider-ede.org.uk
Text EDIE03 ยฃ? to 70070

Update – September 23, 2018

โค๏ธQuick update here everyone before we try and get some sleep๐Ÿ’™

Surgery was successful, both shunts are now functioning again ๐Ÿ™Œ sheโ€™s stable, breathing well and all her vitals look good ๐Ÿ™Œ

Blood samples taken after yesterdayโ€™s surgery showed that Edie had low haemoglobin levels. So she needed a blood transfusion to give her some help ๐Ÿ’ช

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 ๐Ÿ™๐Ÿ™
โค๏ธ๐Ÿ•ท๐Ÿ’™
JustGiving.spider-ede.org.uk
Text EDIE03 ยฃ? to 70070

Edie Recovering - Spider-Ede Appeal. Save a life, donate blood

Update – September 22, 2018

Last night the surgeon came, he said they could only fit Edie in at 10pm. He didnโ€™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.๐Ÿ™๐Ÿ™๐Ÿ™

โค๏ธ๐Ÿ•ท๐Ÿ’™

JustGiving.spider-ede.org.uk
Text EDIE03 ยฃ? to 70070

Update – September 21, 2018

Here we go again ๐ŸŽข๐ŸŽข Wednesday night Edie graduated from the ICU and made it to her own regular room where we can stay in with her 24/7 ๐ŸŽ‰๐Ÿ™Œ

She has been training to breathe for herself having periods without assistance and sheโ€™s been doing great!

Edie has been breathing on her own with oxygen since 2.30pm yesterday. ๐Ÿ™Œ๐Ÿ’ช On to today. The Doctor sent Edie for a CT scan to check her new shunt is working.

Itโ€™s not. ๐Ÿ˜”

Our girl needs surgery again! Sheโ€™ll be going in to theatre tonight. Sheโ€™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 ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž

โค๏ธ๐Ÿ•ท๐Ÿ’™

JustGiving.spider-ede.org.uk
UK Text EDIE03 ยฃ(amount) to 70070

Edie in hospital room - Spider-Ede

Hero Diaries – 6 Months On

On 30th November 2017 we heard the words no parent should have to hear…

On the 30th November 2017 we heard the words no parents should have to hear…

This week we are 6 months on from that awful day and we wanted to share with you our journey from the beginning. For those that have been with us from the start and those that have joined us along the way, we are so thankful to have you fighting with us.

JustGiving.spider-ede.org.uk
Text EDIE03 ยฃ? to 70070

DIPG Awareness Day – 17th May

MRI Scan of Brain with DIPG

In the USA, 17th May 2017 was recognised as D.I.P.G awareness day by 22 states thanks to the Michael Mosier Foundation. This date is significant to them as it is the date that Michael passed away after fighting D.I.P.G. They are working to get these states and more to recognise this day again for 2018. We believe that we need a similar day of awareness here and therefore want to extend the awareness day to the UK on the 17th May 2018.

What is D.I.P.G?

MRI Scan of Brain with DIPGD.I.P.G stands for Diffuse Intrinsic Pontine Glioma. This is a grade IV tumour which is highly aggressive and currently considered untreatable in the UK. It originates in an area of the brainstem called the pons. The pons is responsible for vital bodily functions such as breathing, swallowing, blood pressure, sleeping, eyesight and balance. On average, 25-30 children a year are diagnosed with DIPG in the UK, that is equal to about a classroom full of children. There is no known medical reason for a child developing D.I.P.G.

Can you treat D.I.P.G?

Due to its location in the centre of the brain and the diffused nature of the tumour, it is not possible to surgically remove it. Standard chemotherapy is also not an option due to the blood brain barrier ‘protecting’ the tumour. Radiation is usually offered to help shrink the tumour however due to its aggressive nature this will only prolong life for a short while. The median age of survival is 9 months with doctors usually stating between 2 weeks and 2 years. Only 10% of children survive past 2 years and less than 1% survive for 5 years.

In 50 years, cancer research has helped us improve survival rates for a lot of different cancers, however there is no difference in the treatment now to 50 years ago for DIPG sufferers. Here, parents (as DIPG is most common in children aged between 5 and 10) are told to go home and make memories. As the tumour takes hold, the vital bodily functions are impaired. However, the sufferer’s knowledge and understanding is not affected, therefore they are fully aware of what is happening to them, they simply cannot control it, becoming locked inside their own body. It has to be one of the most cruel ways to suffer.

What Can We Do?

We need to spread awareness. We need to get people talking about this, not ignoring it. Yes it is rare but it’s not rare enough. Less than 4% of funding available goes into children’s cancer research, and even less again goes into brain cancer research. We need the politicians talking about this more. Dame Tessa Jowell has recently called for improvements in fighting cancer and last year a Scottish policitian even addressed parliament about DIPG and the doctors in Monterrey, Mexico, at the Instituto de Oncologia Intervencionista hospital, who are seemingly finding ways to treat this tumour using Intra-arterial chemotherapy and immunotherapy. Sadly there were not many politicians present.

During Channel 4’s Great British Bake Off – Stand Up to Cancer, aired on 3rd April 2018, a story was told by parents about their son who had battled DIPG but sadly lost his life to it. It had people searching for further information about the young boy and learning about it. This is the type of awareness we need. The more awareness and understanding there is, the better. It plays a significant role in both the research and care for DIPG.

Get Involved

We would love for as many people as possible to get involved with some sort of fundraising on May 17th, to help raise funds and spread awareness of this horrible disease. Our own event will be our second #BakeForEdie day, hopefully we can beat the first one held on 23rd March, which raised in excess of ยฃ5000 for the Spider-Ede Appeal. However, if baking isn’t ideal for you then please consider some activity to help us spread the word, whether it’s a sponsored walk, run or even silence, or a raffle within your place of work. Maybe a non-uniform day at school? We do need to raise vital funds for treatment, but we also want people to know and understand what the 17th May is all about, and what DIPG is. So, if all else fails, please just tell someone who may not know about it. Explain it to them, direct them to this page. Let’s get people talking more.

The Spider-Ede Appeal
Part of the Bradley Lowery Foundation
Charity Number: 1174333

Donate online at JustGiving

Personal donations/collections can also be made into our Halifax bank account.
Sortcode: 11-00-54
Account No: 13747967
Please make cheques payable to Ashleigh Stading or Stephen Molyneux (Edie’s parents)

Companies can make a charitable donation to our Bradley Lowery Foundation account. Please make cheques payable to The Bradley Lowery Foundation/Edith Molyneux. Bank details for direct transfers can be provided on request.

Vist the Michael Mosier Foundation

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