Tag Archives: update

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



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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:
โ€œThoughts become things! Everyone please think/pray/meditate and focus on Edieโ€™s recovery! Positive vibes all round!โ€
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™
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‰
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™
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™


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


UK Text EDIE03 ยฃ(amount) to 70070

Edie in hospital room - Spider-Ede

Update – Monday 17th September

Edie in recovery from Surgery

Itโ€™s been only 1 week since we brought Edie in to hospital. We sit at her bedside everyday โค๏ธ

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)๐Ÿ™Œ

Her lungs are looking clearer, blood tests are coming back normal๐Ÿ™Œ

She responds to touch instantly๐Ÿ™Œ

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



Text EDIE03 ยฃ? to 70070

Update – Monday 10th September

Edie Molyneux - Spider-Ede

Edie Molyneux - Spider-Ede
These past couple of days have been difficult, Edieโ€™s breathing has been laboured, she runs a temperature of 38-40degrees that we are trying to get under control. We have lay in bed next to her thinking “is this it”, worried glances to each other, catching ourselves with tears in our eyes.

Because this is DIPG, no matter what you do, how well they are doing things can change so quickly. Right now we are still doing everything within our power but most importantly laying with our beautiful baby.

We just hope we can get her Immunotherapy this week and see some miraculous improvements because after all we have been here before.

๐Ÿ™๐Ÿ™ Once again we need you all to summon your positive energy and prayers to send them to our girl ๐Ÿ™๐Ÿ™

Text EDIE03 ยฃ? to 70070

Update – Friday 7th September

Edie Molyneux - Spider-Ede, Ashleigh Stading

Edie Molyneux - Spider-Ede, Ashleigh Stading
โค๏ธ๐Ÿ•ท๐Ÿ’™ Long awaited Edie update ๐Ÿ’™๐Ÿ•ทโค๏ธ

Edie has been doing fine, I know a lot of people worry when we go quiet. But itโ€™s really because not much has changed. She continues to play sleeping beauty, whilst every week she has an extraction of fluid from the cyst.๐Ÿ˜ด

At first the surgeon was extracting 7/8cc twice a week, but this week he has increased the extraction to 12cc. Edie is now strong enough that she no longer has to go to the hospital for the procedure and it can be done in the clinic.

When we first found the cyst we put Edie on a course of steroids to help bring the swelling down, she is completely off steroids now but still has a little puffiness around the face.

Next week we really hope that Edie will be starting a course of immunotherapy again. Although she has been doing well and remained stable we need to be making a push to attack the tumour direct. ๐Ÿ‘Š๐Ÿ‘Š

She will continue to take the many natural supplements that we have been giving her alongside the immunotherapy and hopefully we can have some good results to share with you all before too long๐Ÿคž๐Ÿ™

As always keep Edie in your thoughts and prayers. Send her love, support and all of the positive energy you can spare. ๐Ÿ™Œ

With Immunotherapy starting back up again things are going to get more expensive and funds will begin to take a hit. Please consider attending any of the Spider-ede events, all funds will help her fight this. If you canโ€™t make it to any events please donate anything you can towards Edieโ€™s treatment ๐Ÿ™

Text EDIE03 ยฃ? to 70070

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