Author: Lorraine

On Eddies 4th birthday he wasn’t quite well. Nursery had noted that he was much quieter than usual and was spending a lot of time napping in the book room. We took him to see 4 medical practitioners over the course of 4 weeks who didn’t really know what was going on but suspected it was a back to back virus. I just thought he had picked everything up from nursery, as children do. I never once suspected anything worse.

After 4 weeks, he eventually had bloods done and within 12 hours, we were called by the local hospital and told that Eddie needed to come to the hospital ASAP for more tests. We were transferred to RMCH who have been incredible for the past 3+ years – they’re now part of our extended family. We still hadn’t been fully told that he had leukaemia but we knew that it was most probably this. We were cared for by the most fantastic set of nurses and hospital staff you could ask for.

Eddie has had more medications than any person should have to take during their lifetime and although he has never gotten over having to have the wiggle put in (hickman line), he has overcome many medication battles over the years.

We’ve had some really touch and go moments during treatment where he had a seizure and where a fungal infection practically took over his body, and he’s become close to being admitted to ICU but overall, he’s been relatively well throughout treatment.

Its been tough for Eddie because we welcomed his brother into the family 5 months after diagnosis, immediately followed by lockdown a week later and then losing all his hair so there’s been an awful lot of change and adjustment. He’ s been such a superhero though throughout.

We were given a Milly’s Smiles bag on the first week that we arrived on the ward. I had kept hearing all about the Milly Bags but did not realise how amazing they were until I opened it. I was literally in tears at what was inside it and couldn’t believe we had received something so wonderful at such an awful time.

In February, Eddie rang the End of Treatment Bell and in July he had his port out. Its been a scary step stopping all the chemotherapy, steroids, antibiotics and weekly appointments but we are slowly adjusting to our new normal. Fingers crossed everything continues to be positive!

Sunday 5 November was our 9th annual walk for Milly’s birthday. Every year we worry that people will forget to come, and every year our worries are unfounded. This year we had over 150 people join us for a rather muddy 5 mile walk.

We have always been fortunate with the weather and this year proved no exception, the sun shone, the rain stayed away, and later in the day we even got a rainbow too.

After the walk, food and drinks were on offer to everyone as our way of thanking them for their support, not only today but throughout the year. Support comes in so many ways, often people may not think they are doing much, but even a ‘like’ or sharing a social media post can help in ways that you would not imagine.

Thank you to everyone for taking time to join us and remember my beautiful daughter who will always be missed every single day. We had lots of familiar faces along with some new faces too which is just wonderful.

Our walk next year is on Sunday 3 November 2024, not only will it be our 10th Walk it will also be Milly’s 21st Birthday. It will be a walk with a difference next year and we really hope to see you all there!

We are really excited to announce that, this Christmas, we’re joining forces with three other local children’s cancer charities to host a special Christmas party for the oncology children at The Royal Manchester Children’s Hospital.

Ourselves, Friends of Rosie, Holly’s Hearts and The Joshua Tree have all come together to jointly host this special event. Each charity exists solely to support children with cancer and together we wanted to do something special for the children and their families.

The party is for the children of Ward 86, the Bone Marrow Unit and their siblings and families. It’s a free of charge event for children who are currently undergoing treatment or have completed treatment within the last 2 years.

The party will be an opportunity for the children and their families to get together, have a break from the ward and enjoy a bit of festive cheer at a difficult time in their lives.

Each charity has been allocated a role and for us at Milly’s Smiles we are thrilled to be responsible for building Santa’s Grotto!

We have already had some amazing donations of Christmas decorations from some very generous people and businesses – we will be highlighting their kindness in later posts.

We feel honoured to be part of this experience for the children and families that we support and to be working alongside other fantastic charities too.

“Milly’s Smiles Bag – Amazing! Totally forgot towels and toiletries so they were a godsend. My son loves the comfort of the blanket and the little bear (elephant) as a comforter. Lots of well thought out extras too! Travel pillow for when we no doubt fall asleep in the beside chair. Travel mug so we can bring our coffee bedside and notepad and pen for jotting down the questions we inevitably forgot to ask consultant/nurse when they are present”

This lovely feedback was waiting for us today when Graeme and I went over to Leeds with 20 more Milly Bags. It is always such a pleasure to see Elaine, who is always extremely organised, today she was even waiting for us with a cart as we pulled up!

We are almost at the 300 mark with our bags to Leeds, the total today is 290 Milly Bags, which is 290 families whose lives have changed forever.

We send all the families and children who we have helped and who we will help in the future all our love and strength.

There is no discrimination when cancer hits, but you never expect it to be your child.

We hate that our bags are needed but we feel honoured that we are able to help each new family in some capacity.

This morning, bright and early Graeme and John drove over to Manchester to deliver a further 20 Milly Bags to Ward 86.

They were greeted by 2 lovely health care assistants who helped them to load up the cart and take the bags up to the ward.

We don’t like to cause a fuss on our bag deliveries we very much like to keep things simple and uncomplicated, we arrive, hand over the bags to the staff and then we leave.

Today we received a lovely surprise from the Ward, a Helping Hand Bead of Courage and a Strength Bead, along with beads saying Milly’s Smiles. This was very unexpected but appreciated so much, thank you to the lovely staff for putting that together for us.

Thank you as always to our brilliant Graeme and John and to everyone who continues to support us.

Over the last 7 years we have donated a total of 840 Milly Bags to the ward.

Accrington Rotary have very kindly made a generous donation of £300 to Milly’s Smiles.

Whenever we receive donations from groups, or companies we like to say thank you in person and always offer to visit and explain to the groups all about our work.

It was a huge privilege therefore, to join the Rotary club’s recent meeting and thank everyone personally for their kindness, it also allowed us to show our Milly Bag and explain how we support children who are newly diagnosed with cancer.

A huge thank you to the club for making me feel so very welcome and thank you to everyone who made additional donations on the night.

We had a new member on our delivery team earlier this month. Kathryn joined Graeme on the drive to Nottingham, where they safely delivered 20 Milly Bags.

This is our second delivery to Ward E39, and on both occasions we have been made to feel so welcome.

It is a privilege and an honour to be able to support the ward and their newly diagnosed families and we are proud to be making a difference every day.

Massive thank you to Graeme and Kathryn who did a fantastic job in securing the safe arrival of our bags.