Tag Archives: update

How is Niamh?

She’s a very strong and brave girl. We owe a lot to her, along with Len she gets us through each day.

Bringing smiles to us in the darkest hours ❤️

We truly wouldn’t know what to do, what to live for without them.

She understands so much, knows when to cheer us up and give us a hug 🙏❤️

But, there are moments that she herself needs these hugs, needs her questions answered.

We find her sitting quietly, ask her if she’s ok.

And she asks

“Where is Edie?”

“Why did she have to go to heaven last week?”

“Where is heaven?”

“Is heaven nice?”

“I miss her playing with me”

These are questions a child shouldn’t have to ask about their sibling, that parents shouldn’t have to try and find the right answer, and struggle to answer without completely breaking down 💔💔

But, she’s ok. We are all in the process, we don’t leave her out, this is her life too.

Just minutes after Edie left us I went out to speak with Niamh. I explained how we wouldn’t see Edie again.

“But Mummy, ‘course we will”

“How?”

“Well we all have to die and go to heaven”

These are wise words from a 5 year old❤️

#DIPGAwareness #EndDIPG #DontForget

Update – October 29, 2018 at 07:31PM

This time one week ago we were watching our baby take her last breaths.
Waiting for her to leave us behind.
One week of so much pain.
We just want to hold you again, feel you, smell you, listen to your infectious laugh.

We miss you so much Ede, it hurts 💔💔💔 You were an angel put on this Earth, our perfect angel 😢

Update – October 23, 2018 at 02:35PM

We would like to thank everyone from the bottom of our hearts for the support since the news yesterday💔 Edie really did make her mark and leaves a legacy.

We will be having a memorial in Monterrey, Mexico today and will be planning Edie’s celebration of life for when we are home.

If you would like to carry out a candlelight memorial in Edie May’s honour we ask for it to be around the time we will be having her service, please light a candle at 7pm UK time ❤️💙

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 didn’t get the results we hoped and prayed so hard for from the EEG.

It showed very little brain activity 💔💔💔

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 hasn’t dropped since 🙏🙏🙏🙏

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 ❤️❤️

🤞🤞🙏🙏Come on Ede 🙏🙏🤞🤞

❤️🕷💙

JustGiving.spider-ede.org.uk

Text EDIE03 £? 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. 🙏🤞 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:
⬇️⬇️⬇️
“Thoughts become things! Everyone please think/pray/meditate and focus on Edie’s recovery! Positive vibes all round!”
⬆️⬆️⬆️
And so we ask only this of you tonight 🙏🙏🤞🤞
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 I’d say “unfortunately there is no bleed on the brain”

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 🙏🙏🙏 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 “happy” 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! 🙏🙏🤞🤞
We believe in her and we believe in God 🙏
❤️🕷💙
JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

Update – October 13, 2018 at 07:55PM

Today we will be filling the day with Edie’s favourites:
Story books, “Dirty Bertie” 🙈 and “We’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!🎉🎁🎈 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 Niamh’s birthday last month so she is 5” 😍😍 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. 🎉🎉🎉🎉🎉🎉🎉

A day of positivity, complete positivity!

Happy Birthday Baby Girl! 🎉🎉🎉🎉🎉🎉🎉
❤️🕷💙
JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

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