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‘I couldn’t believe we had received something so wonderful’

At the start of this year I was contacted by Ward 84 mum Steph whose little boy Eddie was diagnosed with ALL in November 2019. Steph told me that she had hear about our Milly Bag, but not realised how amazing it was until she opened it.
Steph says ‘I was literally in tears at what was inside it, I couldn’t believe we had received something so wonderful at such an awful time’. ‘From the bottom of my heart, thank you for the bag and all the amazing things it contains; I’m sure you already know how valuable they are.’
Since then Steph has been raising money for Milly’s Smiles in various ways, over £200 was raised at her baby shower, and following several head shaves and hair cuts a further £400 was raised, which is brilliant and makes such a difference to us.
Eddie is currently doing amazing and coping well with his treatment which is fabulous news.
Support like this means the world to us, thank you Steph and everyone who has donated, we send all our love to you all.
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18 Milly Bags arrive at Alder Hey Children’s Hospital

Milly Bags at Alder Hey

Our delivery team David and Vicky left our unit yesterday with Milly Bags for Alder Hey Children’s Hospital.  They give their time so generously and nothing is too much trouble for them, we feel very blessed to have them on our team.
18 bags were handed over to Julie ready to be given out to newly diagnosed families when they arrive on Ward 3B, which is the children’s oncology ward.
One thing that we like to ensure is that the wards are never without a Milly Bag, the whole purpose of our bags is to ensure that they are given at the point of admission, because in most cases parents have arrived totally unprepared for a long hospital stay.
We are often told that families love our Milly Bags and are so appreciated.  We are very thankful that we can make sa difference at such a difficult time, however we would give anything for them not to be needed.
We are grateful that we are able to continue doing what we do, and as always our thanks go to each and every person who supports us.  You are all amazing.
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8 year old James raises money for Milly’s Smiles

On September 8th of this year, 8 year old James underwent surgery at Leeds Children’s Hospital, to remove a brain tumour after being diagnosed with Medulloblastoma.

Grandma Cath contacted us to thank us for his Milly Bag and to say that James loves his blanket and takes it to St James Hospital everyday when he goes for his radiotherapy.

James and his family have been undertaking some fundraising for us with fantastic results! Already they have raised £1450 and they are still going strong…

As James began to lose his hair from the chemotherapy, he decided he wanted it shaving off, he was not alone, almost all the males in the family joined him in shaving off their hair – or their beards if they had no hair!

Massive well done everyone, especially James, who is now known as Baldi Basics! It was James who wanted to support Milly’s Smiles and for that we thank you James. We also think you are rocking the bald look!

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Walking 5 Miles for Milly’s Smiles

Milly’s Smiles 6th Annual Walk

This years walk was somewhat different from previous years.  We were unable to hold the walk safely this year due to COVID restrictions, however that did not stop us and many more people from walking for Milly.

The weather was pretty wet at times, umbrellas and wellington boots were a definite must for the day.  Whilst the rain came down pretty much the whole of the time, some very lucky walkers were blessed with a rainbow, which as always warms my heart.

People walked from all areas of the country, from Scotland, Cumbria, Wales, Yorkshire and they all did it for Milly.

The photos we received are amazing, everyone is smiling despite the weather, and the scenery is stunning.  A huge thank you to everyone that took time out to walk for Milly and to support Milly’s Smiles.

We missed seeing you all in person this year but loved seeing all the pictures, and really hope to see you all next year – save the date, its a big one next year!

 

Image may contain: 2 people, people standing, outdoor and nature

 

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Happy 17th Birthday Milly

Friday 6th November was Milly’s birthday, her 6th birthday spent in Heaven…

Happy Heavenly 17th Birthday my beautiful Milly, I miss you more and more each and every day:

I miss waking up and seeing you dressed, ready for school…

I miss you in the car singing along to the radio pretending you know the words…

I miss brushing and plaiting your hair…

I miss sitting at the table eating tea and finding you have pinched my slippers…

I miss you trying to put your hands round my neck because you know I don’t like it…

I miss seeing you skip out of school…

I miss your hugs, I miss your kisses (oh how I miss them)…

I miss watching your swimming lessons…

I miss washing and ironing your clothes…

I miss seeing your face at your bedroom window waiting for me to get home from work…

I miss tucking you up in bed, I miss you asking me to say a good dream spell to stop you having nightmares…

I miss your laugh, your infectious giggle…

I miss your beautiful face, your spellbinding smile…

I miss life with you…

I miss the life we were meant to have…

The “what-ifs” are so strong everyday. I wonder what your interests would be. I wonder if you would have any new passions. I wonder what your plans would be for your birthday and who you would choose to spend it with. I wonder how much more beautiful you would be, if that would even be possible.

Have a lovely birthday in heaven with the angels and always know that..

“I will carry you,
Here and there,
There and here,
Until I am where you are.”

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September – Childhood Cancer Awareness Month

September is a very emotive month for us and today has been a day of mixed emotions.
I learnt this morning that a Ward 84 patient has gained their Angel wings….just knowing what those parents are going through and will continue to go through breaks my heart…
Our delivery team took 20 more Milly Bags to Ward 84 this morning and Stuart was kind enough to send us a photo of the bags arriving….Often we take bags at a moments notice as we never want the ward to be without bags. For a family to arrive and there be no bags would be awful for us and the families and so we will always deliver our bags at a moments notice.
The last bag given out went to this handsome young man Hughie – this was our 500th Bag given out and Hughie and his family are happy to share this photo with us – which is a huge deal considering what they are facing.
Today we are thinking about the newly bereaved family of Ward 84 and also the family who are just starting out on their journey – we send so much love their way.
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5 Years

Today it’s 5 years that I have survived without Milly…. 5 years is a lifetime to be without one of your children, and yet it’s no time at all….
The pain…the loss…her absence from every part of my life is still felt so intensely…it hurts and my heart breaks every single day.
Each year without Milly has brought different challenges…. up until this year I have always known where Milly was meant to be, I often would think she should be at school now, or she should be getting off the bus with her friends, for the last 5 years I’ve been able to place her where she should have been and imagine what she would have been doing.
But it’s different this year…. I don’t known where she would be now or what she would be doing …she may have chosen college or 6th form or even an apprenticeship…this year it’s hard in so many new and different ways…and I know that is never going to change as the years continue to pass by.
Milly will always be missing from me and I will always be wondering….
But she will always be part of everything I do, I made a promise to myself when I knew that Milly would never get the chance to grow up, I promised that no one would forget her, that she would be remembered and thought about with love.
And MilIy is very much remembered, not only by those who know and love her but also by families that we have helped along the way with Milly’s Smiles.
I know families take time to read about Milly, and I hope they gain a little insight into the person she was, Milly was filled with love, fun and laughter, she brought a smile to everyone who was lucky enough to know her.
Milly’s love will always surround me, my love for Milly, and her love for me will never be stolen by death. It is infinite as it is powerful, it stretches past forever and remains with me for always.
I feel honoured and blessed to be Milly’s mum, I had 11 and a half years with her…it wasn’t and never will be enough…she is forever loved and endlessly missed.
“I love her with the utmost love of which my soul is capable, and she was taken from me. Yet in the agony of my spirit in surrendering such a treasure, I feel a thousand times richer than if I had never possessed it”.         William Wordsworth
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Deliveries of Milly Bags continue throughout pandemic.

During the Covid-19 pandemic we have continued to work hard to ensure we have been able to keep supplying our Milly Bags when they have been needed.

We feel very privileged that all 3 hospitals that we support consider our Milly Bags an essential service for all newly diagnosed families and as such have allowed us into the hospital to make our deliveries.  Children are still being diagnosed with cancer related illnesses every day, and as long as this happens we will continue to support these families.

Our fabulous volunteers David and Vicky made the journey to Manchester Children’s Hospital to deliver 25 Milly Bags to Ward 84, the delivery included our 500th Bag….  whilst we are very proud that we are able to support newly diagnosed families we are extremely aware that 500 children and their families have had their lives turned upside down, with the most devastating news.

As well as delivering to Manchester David and Vicky also crossed the Pennines to Leeds to deliver 25 Milly Bags to Ward L31, we have been supporting Leeds for 10 months and during this time have delivered 69 bags to the hospital.

Alder Hey Hospital had some bad news for us, they had a flood that went into the store room where our bags our kept, resulting in 7 of our Bags becoming contaminated and  having to be destroyed.  This left the ward without any Milly Bags for their new admissions it also meant we had lost £700 worth of Milly Bags.

Fortunately we managed to quickly make up a further 25 bags and deliver them the following day which took the total amount of bags donated to 160.  The hospital trust has also agreed to reimburse us for the cost of the Bags which is very welcome news to us during this difficult time.

We never forget that all of this is possible because of the tremendous support we continue to receive every day, sometimes from the most unexpected of sources.  When I started the charity in November 2015,  never did I realise how much of an impact we would have with hospitals and newly diagnosed families, and never did I think we would be so well supported over the years.  This is pure testament to how loved Milly is and for this I am grateful to every single person who supports us.

To be able to make a difference to so many families in the name of my daughter is an honour.

 

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Happy Birthday in Heaven Katie …

Katie, an Angel of Ward 84 turned 18 on August 13th… her brave mum set up a fundraiser for her birthday and has raised an outstanding amount of £2528.00.  This testament to how loved and missed Katie is.

It is an honour to be chosen by Katies mum and we feel very blessed..

Please take the time to read about this extraordinary young lady, her bravery, courage and determination is so inspiring.

Katie MacRae was diagnosed with cancer when she was only 16  years of age. The cancer was found in her liver, pancreas, spine and lung and was so rare and so widespread, the doctors were not sure if chemotherapy would work. They decided they would carry out a scan after 2 rounds of chemo.

The second dose had to be reduced in strength as it made her so so ill that she ended up in hospital for about 6 weeks. She didn’t eat for about 12 weeks and lost so much weight.

Katie eventually underwent 6 rounds of chemotherapy.

After the last chemo in February 2018, she began to gain her strength and began to regain her appetite once again. Katie was well enough to be able to attend Prom with her friends and in her own words “The whole prom experience was amazing”.

After 3 months of living life something close to that of a normal teenager, Katie had a scan in Sept 2018, the results unfortunately showed the cancer was back and had spread much further.

Katie was referred to the team at the Christie.

Katie had also started Cardinal Newman college in September to study A level combined English, Law and German.

She wanted to start afresh. None of her friends (other than school friends) knew about her cancer and she didn’t even let on to her school friends it was back as she didn’t want to be treated any differently by anyone. She didn’t want them to worry.

Chemo started again in October. It was in the form of tablets. 2 weeks on 2 weeks off. This meant she could carry on college as normal.

Further scans after 3 months of chemo showed it had not slowed, so next treatment was an infusion that she would wear at home.

Katie had a portacath fitted so the chemo could be administered in clinic and we would come home wearing the “bottle” of chemo . The outreach team would removed the chemo once it had all infused after approx 2 days.

Katie knew time for her was short – but always kept positive. She never discussed it with us, she had an amazing way of being incredibly strong, and just skilfully changing the subject when awkward moments came up, we realise now it was her way of protecting us from the pain.

She was always the one her friends turned to if they had an issue that they needed to talk through and was always there to offer advice and listen to their problems. If only they knew of hers….

Katie purchased some poetry books that dealt with serious issues, death being one of them, which showed she had in a way come to terms with what was happening to her. Some of the poems were bookmarked by Katie in the books, when we read these we had to use them at her funeral.

The dreaded cancer spread to Katie’s brain and it was really just a matter of time, but in her inimitable Katie way she still kept laughing and smiling even creating Katie’s party room in her room and inviting all staff to “come in for a skive and cake” whenever they popped in to carry out their daily duties.

Being stuck inside in a hospital room was difficult for Katie she so wanted some fresh air, as it turned out thanks to a wonderful nurse – the day before she passed away, she was wheeled in her bed outside into the garden at the Christie.

She was so pleased to feel the sunshine and shouted at a pigeon in case it thought it was ok to “Shit on her bed!”

We had a lovely evening with family and friends around her bedside eating pizza and chatting and laughing. This was to be last time we had with ‘our’ Katie and although it is sad to think of it as our last interaction with Katie it was beautifully perfect in every way.

The next day she was unresponsive and passed peacefully away shortly after this with us by her side.

Her funeral truly was a celebration of her life with over 500 attending the crematorium and over 200 coming back to the venue for a “party”. There was laughter and smiling all afternoon, as people remembered Katie and her cheeky Katieness.

We all miss her terribly but looking back at her determination, bravery and constant positivity keeps a smile on our face in her memory.
So…. to “Keep Your Katieness” means

Stay determined
Stay positive
Keep smiling. it’s the only way
Always think of others and help them if you can
Just roll with it. Take each day as it comes.
Laugh lots – try to see a funny side of everything

We try to live by this always. – Katie’s Mum 🌻

 

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Ward L31 Grandad raises awareness of Milly’s Smiles

Kaiden was diagnosed with Ewing Sarcoma at Leeds Children’s Hospital earlier this year and received one of our Milly Bags.  The bag was such a huge support and comfort to the family that Grandad Aiden decided that he wanted to do something to support our charity as well as raise funds for his grandson.

Turning his hand to what he does best, and working alongside some very talented people, he recorded the beautiful song Angel and produced a video to highlight the work of Milly’s Smiles.

Aiden is the vocalist on the track, which was written by Lee Brammall and the video was put together by Rob Russell Davies.

There are four tracks on the CD which Aiden is selling for £6 inc post and packaging. Contact Aiden on aidenjay@yahoo.com

We love the support these lovely people have given us, it always means so much to know that our Milly Bag as helped families during one of the worst times of their lives, and we are so very grateful to the team for this generous gesture.