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“Milly’s Smiles Bag – amazing!”

“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.

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Lovely visit to Ward 86

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.

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Accrington Rotary donate £300

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.

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Nottingham have their second delivery!

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.

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“A caring, nurturing environment where I feel safe and secure”

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.

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Childhood Cancer Awareness Month – Harrison’s Story

Harrison’s story as told by mum Tash;

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.

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Childhood Cancer Awareness Month – Saqib’s story

Saqib’s story is told so beautifully and poignantly by his brave mum Fozia:

Saqib’s name in Arabic means ‘shining star’ and he always lived up to his name. He lit up our lives by being adorable, funny, caring, clever, creative and very very cute.

He had a normal happy life for 4 years and 11 months. Riding a bike, dressing up as a ninja turtle, swimming and attending karate classes. Saqib especially loved his pre-school nursery. Just like his family, he had charmed his way into the hearts of his teachers and friends. He finished nursery in July 2021 and he couldn’t wait to start reception in September 2021. At this point his older brother was 7 years old, Saqib was 4 (soon to be 5 in September) and I was 35 weeks pregnant with our third child.

But then one day in the summer holidays Saqib complained of a headache. He was fine after 5 minutes but unfortunately the headaches were reoccurring and he would hold his head and cry. Despite being told by medical professionals on 6 different occasions that he was fine, my anxiety and fear that something was desperately wrong with Saqib became increasing high. By the end of the 3rd week and on that 6th visit to the GPs, I became that ‘crazy mum’ who refused to leave the GP surgery until the doctor listened to me and helped me. This was the 13th August 2021.

We were sent to Royal Oldham Hospital and the paediatrics began asking me lots of questions and then told me Saqib would have a CT scan. I was happy that I was being taken seriously and that we were finally getting some help. What I was not prepared for was the devastating news that the results of the scan would uncover. It never occurred to me that my perfectly happy healthy son would have cancer. The words brain and tumour never crossed my mind. The shock of the diagnosis still effects me today. “How can Saqib have cancer in his brain? Saqib is fine!” I find myself repeating this some days.

We were transferred to Royal Manchester Children’s Hospital the next day where a MRI scan was carried out. Further devastation awaited us. On the 16th August 2021, Saqib was diagnosed with DIPG, a rare aggressive childhood terminal cancerous brain tumour with a very short life expectancy of 6-9 months life with treatment or a few short months without treatment.

As fate would have it, the MRI scan revealed that the tumour was having a bleed. This meant it was working very fast and as the tumour was in his brainstem it would mean a loss of a number of his key bodily functions. And exactly that happened. The next day Saqib did not sit up or speak properly again. The cancer in his brain had paralysed his body and made him mute within days of diagnosis. I was now 38 weeks pregnant. How was I supposed to care for a terminally ill child, my 7 year old son and my unborn child? I lost control of my whole life. Everything fell apart.

Saqib was injected with a 24/7 syringe driver in his leg for pain relief and with him being so poorly the option of radiotherapy to extend his life by 6-9 months was no longer an option for us. Our 4 year old son was now placed on a palliative end of life care plan. What was especially difficult was the location of the tumour. Your brainstem is responsible for your key bodily functions such as movement, speech, swallowing, breathing and your heartbeat.

But it hadn’t spread to the top part of his brain which is where he was able to think as normal. He was essentially trapped in his body. Unable to communicate or move but wanting to do all he was able to do just days before. It was like the tumour had hit the bulls eye target and struck my son in the worst place possible.

For the next 7 weeks we found ourselves caring for an unrecognisable child. I knew it was my Saqib but sometimes I still struggle to recognise him as he was so unwell.

Being gifted a Milly’s Smile bag at this point was so uplifting. The first thing I asked the nurse was “Is Milly still alive?” My heart broke when she said “No, sadly Milly died and her amazing mum created this charity in her memory to help other families.” I don’t know why I asked that question. I guess I hoped it was all a lie and children didn’t die from cancer. I knew at this point that I would be forever indebted to Lorraine, Milly’s amazing mum. I felt like I had someone who didn’t know me but cared about me.

September came around and the next school year began. My 7 year old son returned to school and all of Saqib’s nursery friends began reception as Saqib lay on his hospital bed dying. Then days later on the 19th September, my Saqib turned 5. How painfully bittersweet to celebrate your child’s birthday whilst his life is ending.

I was also overdue with the baby and had to give birth. His little brother was born just 2 days after Saqib’s birthday on the 21st September 2021. Again how painfully bittersweet to celebrate the life of your new born child, when your other child is lay there dying.

Saqib was very happy to meet his baby brother but after that day he began to deteriorate rapidly. I sometimes think, despite being so ill, was he holding on to meet his brother with a smile before the cancer became too relentless?

Saqib sadly died 2 weeks after his 5th birthday on the 4th October 2021. His little brother was just 13 days old. I was beyond broken and was sure I too would die.

10 weeks ago he was fine. Just 3 weeks of headaches and 7 weeks of hospitalisation and then he died. His little life so short.

We came home from Royal Manchester Children’s Hospital the day he died and buried my 5 year old son. I don’t know how we coped. It must have been divine intervention.

I still can’t believe we have lived without Saqib for almost 2 years. As his nursery friends now move onto Year 2, I often wonder do they remember Saqib? He talked about them all so much.

On what should have been his 7th birthday, the 19th September 2023, my heart ached at how beautiful and big he would have been. And then 2 days later, my heart ached again when his little brother turned 2.

I am finding new purpose in life and take deep comfort in my faith which guarantees me all children that die reside in Jannah, (the Arabic word for Paradise) under the care of Prophet Abraham waiting to intercede on behalf of their parents. I can’t think where else our beloved children would be. It’s their home where they deserve to reside in pure peace and joy. And our home too when we follow in their footsteps and also leave this world.

Thank you for teaching me there is more to life than this world. How can this world be my everything without you in it my precious son? See you soon Saqib, my second born, my shining star.

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Childhood Cancer Awareness Month – Harris’s story

As told by mum Natalie:

Harris was diagnosed with Hepatoblastoma (liver cancer) at 9 months old in July 2022. We had absolutely no idea and only found out because he developed a sore throat upon returning from a family holiday to Greece.

We attended an out of hours appointment on the Saturday at Preston hospital and explained we were concerned by his reduced appetite, bloated tummy and seemingly sore throat.

Our suspicions were confirmed, Harris did have a throat infection, but unfortunately that wasn’t all we had to contend with; his blood results showed significantly elevated tumour markers and an ultrasound scan showed abnormalities in his liver.

We were transferred to RMCH the following day and over the course of the week he underwent MRI and CT scans, had a biopsy and was fitted with a central line.

We were told Harris would ultimately need a liver transplant for cure and also found that the tumour had spread to his lungs, making Harris ‘Very High Risk’.

We began the chemotherapy protocol and whilst Harris did respond to the treatment overall, his lungs didn’t clear after several rounds of chemotherapy, so in April 2023

Harris underwent two lung surgeries to enable a subsequent liver transplant. In June, he was fortunate enough to receive a donor liver and then completed his final course of chemotherapy in August (his 16th in total).

You never expect it will happen to you, but when you’re plunged into the oncology world of chaos and uncertainty, you end up on a ward in a hospital you’ve never been in, not knowing what you might need for the journey ahead. Receiving a Milly bag at this point is invaluable, it has everything you need to get you through the darkest and most chaotic first few days when your world has been turned upside down.

Our Milly bag has remained the emergency hospital bag, always packed ready to go, as you never know when a fever will creep up on you and you need to make the dash to A&E!

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Childhood Cancer Awareness Month- Matthew’s story

Matthew suddenly deteriorated in one weekend.  I had taken him to our local A&E on the Saturday and we had been sent home with antibiotics for an ear infection.

On Sunday morning I couldn’t wake him, and it was later we found out he was having back-to-back seizures.  We were rushed to hospital by ambulance back to A&E, and due to his presenting symptoms, he was scanned straight away. 

It was just a short time later that we were told Matthew had a brain tumour and that we would be going to The Royal Manchester Children’s Hospital straight away for emergency surgery.

However, when we arrived Matthew was so unstable that he the surgeons were not able to complete his operation and he was taken to the Paediatric ICU for 10 days, before he returned back to theatre to have his surgery completed.

Whilst Matthew was on PICU we were told that Matthew had a very rare cancer called ETMR – there was no specific treatment protocol but Matthew would need to start chemo as soon as he was well enough.  This turned out to be 2 weeks after his last surgery, and this was when we were moved to Ward 86.

After his first cycle of chemo Matthew’s oncologist showed us a research paper which confirmed the treatment, he was having wouldn’t provide him with long term survival.  The decision was made to stop the current treatment and instead Matthew had very high dose chemotherapy, a stem cell transplant and 30 sessions of proton beam therapy.

Matthew was coping extremely well with all this until he unexpectedly had a stroke in January of this year, for which he needed further surgery and a stay in the high dependency unit. 

There have been other admissions both during and after treatment but currently Matthew is doing really well.

He has had to learn to walk and talk again, and he had the needs of a new born baby. Most children diagnosed with ETMR will not survive past their 4th birthday, Mathew starts school in September and we could not be prouder of him.

Thank you for what you do for oncology children and their families, Matthew’s rainbow blanket is a favourite of his and something that connects all these lovely children together.  His Milly Bag is a staple in our house, not just for hospital, but anytime we go away.

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Childhood Cancer Awareness Month – Matilda’s story

Matilda’s story as told by mum Beth:

My daughter Matilda was just 10 months old when she was diagnosed with a rare cancer called Retinoblastoma.

I first realised something wasn’t right when I noticed a glow in her left eye when she was about 3 months old, then I noticed her eye starting to turn to the side.

I kept taking her to the doctors only to be told that everything was completely normal. But I knew that it wasn’t, it was weird because I never in a million years thought it could be cancer, I just felt something wasn’t right,

We had an appointment in Manchester in March 2020, just as Covid hit, and we were told Matilda had retinoblastoma, a rare eye cancer that affects young children.

We were transferred to Ward 84 without any notice. We live in Preston and had nothing with us as we were not expecting to be admitted.

My mother-in-law had to drive all the way back to get us some belongings for our stay.

Then we were gifted a Milly Bag, which had absolutely everything we needed in it!

I was so grateful and cried when I was handed this. It was so thoughtful and really helped us throughout our cancer journey.

Matilda is now 4 years old and doing well. She still has her rainbow blanket as her comfort, and we cannot forget Ellie the elephant, who has also been her comfort throughout her journey and remains her comfort to this very day!

So many parents talk about doctor’s failings in diagnosing their children, education not only for parents but for our health care professionals is paramount, early diagnosis can mean better more positive outcomes for our children.