One very emotional month.

Well it has been one very emotional month since Ellis had to go, why she didn't have more time with us God will only know. When we get sad and realise we will not see her again, we stop and think that she is now at peace and is no longer in any pain.  xxxx

The farewell ceremony held for Ellis on Friday was simply perfect. Mandy read a beautiful poem which she had written. Mani read words from her Transplant Consultant along with his own tribute. Finally Daren performed a very special song for Ellis, which was simply breathtaking.  Thank you for everyone who attended and made the day truly special.

Ellis carefully chose the music which was played, these and Daren's song are linked below for you all, along with some pictures of Ellis which we had at the Service and some of the floral tributes.

Forever young by Johannaonair - http://www.youtube.com/watch?v=lP5U4rQq3s0

There you'll be by Faith Hill - http://www.youtube.com/watch?v=wbrRxl7Q2Yk

Worlds Greatest by R.Kelly - http://www.youtube.com/watch?v=LyaNlZaVOpc

Everything Changes by Daren -
http://www.facebook.com/photo.php?v=10150822466593806

Ellis 18th birthday x

Mum & Mani's flowers x

   Cáel's flowers x

Mandy's flowers x

Our brown eyed girl x

It is difficult to find the words that can express our feelings at this time, we just have to take each day as it comes as no two days will be the same. We try to carry the courage and strength that Ellis showed with us in our daily lives, which seems to help. We are all extremely proud of Ellis, and miss her deeply, today, tomorrow and forever. 

Finally, Dreamflight, a charity that took Ellis on a holiday of a lifetime to Florida, was always close to her heart. She swam with dolphins, visited Disneyland  and her dreams really did come true. Donations in memory of Ellis can be made via Neville Funeral Service on 01582 490005. 

Thank you xxxx            

Never walk alone.

Well as you readers will know, it is very nearly two weeks since our beautiful Ellis had to spread her wings to watch over us. We also know that we promised to update her blog regularly and keep her memory alive, but it isn't that easy! Our words are not her words, our thoughts are not her thoughts, so we will just have to do our best, here goes ....

The amount of support that we have received has been amazing, not just from family and friends but from total strangers. Some have blogged about "this courageous young woman who could teach us all about life and loss", others have sent cards via friends (some have even managed to find our address, bit scary!). So it is comforting to know that Ellis really has touched peoples lives.

Today Ellis's close family and friends participated in a 10k sponsored walk on behalf of the CF Trust. Well as you probably guessed the weather was rainy, rainy, windy and oh yeah rainy!! But a promise is a promise and trek through the muddy puddles we did, until after about 2.5 hours we completed the task in hand. We also know that we will never walk alone as Ellis will always be by our sides. The money is still coming in so far, between us we have raised about £2000.00 an outstanding amount of money but it could be more so if your feeling generous, touched or inspired you can still sponsor by using the link Ellis put on previously.

Well that's about it for now, please let us know if we are doing good with Ellis's precious blog.

Until next time.

Keep Calm And Sleep.

Keep Calm And Sleep,

These were the words that Ellis took to bed with her on Sunday night, quite literally on her PJs, typical!

Ellis was honest and happy throughout, confirming exactly what her wishes were. She remained dignified and in control and her will did not falter.

Her illness gradually took away most of her choices in life but at the end, which is where she found herself,
she made sure that it would not take her final and most important one away too.

It was not a selfish decision that Ellis made, but one that benefited us by giving us the opportunity to see and be with her in a way that we had not seen for a long time, comfortable, happy and at ease. However, as much we knew, as a family, in our hearts that it was the best decision she could make for herself, it didn't make it easier.
Selfishly, we tried to make her change her mind and make her keep fighting, but who would she be struggling on for, her or us?

After several days spending time with the people she loved and after reading all of your kind messages, our most beloved, beautiful and courageous young lady, fell peacefully asleep in the arms of her mum.

We would like to join Eliis in thanking everyone for their heart felt support throughout her short but obviously very wise life.

May her wisdom and courage remain with us all during our time of need and inspire us throughout our lives.

We love you Ellis.

Roller coaster ride.

Hi all, just a quick update on behalf of Ellis.

Well over the last few days Ellis has remained strong, determined and very up beat. She has managed to spend some precious quality time with family and friends without being in any pain or discomfort and has been totally chilled out. Last night was spent hand and finger painting with Cael, which was lovely. He even shared his special baba (blanket) with her !

She has requested no visitors today as she just needs some peace and quite, however she is reading your posts, when her eyes are a bit blurry, we read them to her. She wanted to thank you all for your support, understanding and kind messages.

Drugs have been fiddled with a bit which have made her a little confused. She woke up a while ago thinking she had been on Stealth, keep thinking those good thoughts sweety. She is now going to attempt to watch Britains got Talent, as she was most annoyed at being too sleepy to watch it last night.

Jo - Ellis' mum
x

Ellis's wishes.

Well everyone, Ellis has asked that I (mum) update her blog.

As you may be aware Ellis elected to come to Hotel Papworth yesterday afternoon, after much thought and deliberation Ellis decided that she no longer wanted to continue treatment. Mainly because they have not really been effective over the past few weeks and daily chores have become extremely difficult. This decision wasn't taken lightly, but as you guys will also know, The only way is Ellis!

So Ellis is now chilled, eating ice lollies, relaxing and of course listening to her beloved music & as expected she has been as brave and outspoken as ever, (ashamed to say the same can't be said for us though).

Her beloved little brother Cael is safe and sound at his aunties & Ellis has spoken to him on the phone, telling him how much she loves him and to be a good boy. Mandy, sis, was with her last night with some close family and friends who she loves dearly.

For the first time in quite a long while Ellis is happy, relaxed, breathing easy and in no pain. However hard, we know this IS the right decision.

Finally, Ellis wants me to express her gratitude & love to you all for your support & comments, as this helped her through her journey greatly.

Thanks all.


 

 

Just what i need :)

So today i found out i'm going home tomorrow, as it's easter they wanted to get me home for the holidays. I had a good chat with the physio therapist, and she is keen for me build up my muscles, and has been on the phone to my local rehabilitation/physio team, to send someone out to my home to help me with an exercise regime, obviously nothing crazy just light work-outs to keep my leg muscles working, which should also theoretically help my lungs. Nothings confirmed yet but it's worth a shot and may be just what i need. I am going home on iv's and will be going back to clinic next Thursday. Really happy to be going home!!! 

I'm feeling quite positive actually, although i'm still getting more breathless than normal, i just have that feeling that everything's going to be okay.

I have such amazing supportive family and friends. Yesterday my sister Mandy, my very good friend Jodie, and our best mate Deano came up to see me, they always make an effort to come see me whilst i'm in and bring me goodies, and i'm really grateful to have them in my life, the 3 of them are all doing the 10k sponsored walk for CF Trust on April 29th, they all signed themselves up and i'm proud :) they all came to see my do the walk last year, but i am obviously too poorly to participate this year, so they felt the need to step up to the challenge instead. Love you Guys!!! If you wish to sponsor please go to http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=djwalk&isTeam=true 

Today my good old college friends Joane & Scott came up, and it really is was great to see them, I've known them for 4 years now can't believe how time flies, and i know they will always be by my side. It was lovely to see them, they even took me to McDonalds :) There visit was just what i needed, and reminded me not to shut people out. Love you guys!!

My mum is just the best, she comes up nearly every day when i'm in hospital, despite the hour drive each way, she rubs my back when i'm in uncomfortable, puts up with my mood swings when i take my anger out on her, does my iv's when i'm on them at home, takes me out when i'm bored, she's not just my mum, she's also my carer and best friend! Some times i wonder how she can stay so strong, but then everyone says i'm strong, so i guess i get it off her. My mum is my rock, and i really don't say it as much as i should, but i love you mum!!! My mum is also doing the sponsored walk :)

Anyway i'm just saying thanks to all my family and friends, the online support, the messages, and my all the feedback from this blog, i do feel so lucky to have the support and am feeling the love, you all keep me fighting and helping me get through..

Peace. \/

Pluck, Thread Or Wax?

So I've been in hospital since Thursday, came in as i had started to feel extremely tight chested and breathless, my appetite had disappeared. Been in 4 days now, my chest isn't as tight but I've still not really improved much, still waiting on the antibiotics to kick in i guess.

Yesterday was not a good day at all i felt really down and angry at the world, once i get myself in that mood it's hard to snap out of it. Plus my left lung was being a bitch and would not stop rumbling, driving me crazy. Been a bit more chirpier today although my lung is still rumbling and i'm still not where i want to be after 4 days of iv's. Anyway enough of the boring stuff, the staff were laughing at me earlier as i was laying on my bed with my mirror in one hand and tweezers in the other, plucking away. Eyebrows were looking a bit dodgy so had to sort that out because it was annoying me, feeling better now they're done and look nice again, also every pluck seemed to take away a little bit of stress haha. I then caused a debate about which is best plucking/threading or waxing.... opinions?
Was flicking through my magazines yesterday and spotted Jessie J wearing the exact same tiger jumper i've got,
come on Jessie get your own style ;) haha!   

Well i'm off to have my dinner now by that i mean a tuna melt panini lol. 

Oh and i just want to say my blog has had over 1000 views which i'm very happy about. So thanks everyone who reads and all the great feedback it makes it seem all worth while :)