On Sunday we held our monthly bereavement SOULS group (support, optimism, understanding, love and strength) and the theme was Christmas Wreath making.
Despite us all having experienced the worst loss imaginable, our groups are supportive, fun and filled with people with the most beautiful hearts.
There was an abundance of creative activity today and by the end of the session everyone was thrilled with their wreaths.
We were given brilliant tuition and guidance from the wonderful Debbie at Ewood Florist and it was such a lovely morning with lovely people.
Massive thanks to Debbie for sharing her skills with us and huge thank you to Asda at Accrington for funding the morning.
Finally, thank you to everyone who comes along to the groups, I know how hard it is to put a smile on your face and turn up for the first time, not knowing what to expect, wondering who will be there and what the expectations of you are.
Always know that there are no expectations, that you will always be very welcome and if you can’t quite find your smile that day, we got you.
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.
Yesterday we held our SOULS support group, and it was such a lovely relaxing morning, beginning with coffee and fresh pastries, followed by some great pumpkin carving which produced some very unique and fabulous designs.
Everyone who came was also treated to a wonderful massage by Laura’s,MySpace4you which proved to be very popular.
Our groups are every month, and open to parents, grandparents and siblings and are totally free to attend. Please contact us if you would like to join our next group on November 26th.
Special thank you to Laura for donating her massages and also to Accrington Asda for the generous donation of pumpkins.
“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.
We continue to hold our SOULS bereavement support groups each month, and this month we received some lovely feedback from one of the ladies that attends.
“Your meetings offer a relaxed environment to talk, whilst we are all engaged in craft activities. Having a craft to do means I can choose throughout the session, whether to join in the conversation or focus on the craft if there are times I don’t want to talk”.
Our groups are all about being present, with people who understand and with whom we share a common bond. This month we spent the hours painting pebbles, and again there were some great creations. We all seem to be discovering hidden talents!
Our groups are open to parents, grandparents and siblings, and are free to attend.
Please get in touch if you would like to know more.
Harrison was diagnosed with Stage 4 Non-Hodgkin’s Lymphoma on Thursday 2 January 2020, he was 5 years old. Harrison had tumours on his liver, spleen, both kidneys and his adrenal gland.
Harrison was a normal energetic cheeky 5-year-old boy, he was excited to be in year 1 and was smashing it. On 17th November he started to complain of stomach pain on his way to school, this continued and we thought it was due to anxiety, Harrison was very shy and a speech delay had made him self-conscious.
We spoke with his teacher and asked her to keep an eye on him and let us know if there were any problems. Following our chat, we had a few calls to collect Harrison from school as he was complaining of feeling tired and unwell. We put this down to winter time and there being a lot of bugs going around school.
Things seemed to settle and Harrison only complained of his symptoms every now and then, but he seemed more tired and never complained when it was bed time.
When he broke up for the Christmas holidays Harrison’s teacher mentioned to us that he was very sleepy in class, and she wanted to refer him for an assessment for learning difficulties. We agreed to this thinking that this could be the cause of his lack of attention and his anxiety.
After tea on 19th December Harrison was very sick, despite having only eaten a very small amount, we put him into bed thinking he had a stomach bug. If only we knew what we know now. This continued for a few days, Harrison would be sick, then carry on with what he was doing.
We were becoming concerned so took Harrison to the doctors where he was diagnosed with a stomach bug.
However, the pains worsened but Harrison remained active. On Christmas day when he was opening his presents, he fell asleep mid present opening, and this rang alarm bells for us and we got him the first doctor’s appointment after boxing day.
We were told by a doctor that Harrison was constipated (diagnosed without any examination being carried out) we were given medication and told to stop worrying!
As parents we wish we had listened to our instincts and taken him to A&E but we trusted the doctors advise and kept him at home.
Harrison’s symptoms worsened, he slept more and more, staying in bed all new year’s eve and new years day. We went on a family walk but Harrison was unable to walk even 10 steps.
I took him back to the doctors on the 2nd and pleaded with them to listen to me, Harrison’s stomach was swollen and he had lost an awful lot of weight. The doctor agreed to send us up to Blackburn Hospital for bloods and an assessment, telling me not to worry, he probably had a bug that was lasting longer than it should!
Harrison had bloods taken, I will never forget the weak scream he made – it broke my heart.
The doctors came and began measuring Harrison’s stomach and liver, no one told me anything at all during this time. We saw 5 different doctors and consultants in the space of a few hours, and then we were sent for scans. Harrison’s dad was at work as no one seemed to be too worried.
Shortly afterwards we were moved to a side room and doctors inserted a canula into Harrison, the doctors began asking when his dad would be here but they never said why.
When Harrison’s dad arrived, immediately 5 people walked into the room with chairs, and sat around us. The consultant began telling me his white blood count was high and his haemoglobin and platelets were low, and then said ‘Harrison has cancer’. He told us we were being blue lighted to Royal Manchester Children’s Hospital and a consultant would see us there. We had nothing with us at all, not even a phone charger.
When they left the room, we burst into tears and Harrison told us “mummy, daddy, don’t worry I will get better”.
We rang and told family the devastating news and then we left.
The following days were a blur, Harrison was in kidney failure and was too unwell to have a Hickman line fitted and start treatment.
One night he had a traumatic 5-hour nose bleed where he needed blood transfusions. The consultants argued over the best care and right balance to help Harrison survive. They agreed he needed surgery to fit his line before he got any worse and time runs out.
Harrison ended up in ICU on a ventilator after his surgery due to complications. It was absolutely terrifying but luckily, he recovered quickly due to the rest his body had been given.
Harrison started treatment for his cancer when we moved back onto Ward 84, he felt rubbish due to the chemotherapy.
Family came and brought us bits from home but we had no home comforts at all.
Early on a nurse handed us a large blue bag, I was confused but she explained that it was from a charity who provides them for children who are on the ward.
We sat down and opened it up. It was beautiful and colourful and had everything we needed, including toiletries which we didn’t have, we had been borrowing little sachets from the ward to wash.
One thing that stood out for me was the note pad and pen, I was able to make notes especially when we were given the formal diagnosis for Harrison, my mind struggled to retain all the information, so this helped a lot.
Harrison’s favourite was the rainbow blanket and rainbow elephant, he cuddled these every day.
Harrison smiled for the first time in days when we received the bag, it made him feel special. I cried at this and felt like we were not alone.
The bag made such a difference, we stored important things in the bag whilst Harrison was an inpatient for 6 months and now we use it to store the memories of Harrison’s treatment so that they are safe.
Harrison went through months of gruelling treatment, surgeries, infection after infection, and all of this happened as Covid hit. His dad was not allowed to stay with us on the ward, and yet Harrison managed to smile and make us smile too. We are so proud of him.
Harrison rang the end of treatment bell on 19th November 2020. He still has regular check-ups but he is doing amazing.
As a family we will never forget these days and we now see life as before and after diagnosis, and for us life will never be the same. We will always worry about Harrison, and we know how lucky we are to have our cheeky happy, amazing little boy with us.
My advice would be to always listen to your gut, and follow your instincts, there is no harm in getting further advise.
Thank you to Milly’s Smiles for the amazing bag and making us not feel along at this awful time.
