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!
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.
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.
“Our son, Peter, was diagnosed with Neuroblastoma in January 2019.
Prior to his diagnosis he was a fit, healthy, energetic eight year old, but in the month running up to his diagnosis, he started to complain of back ache.
We thought we had a rational explanation for it. He had been under the care of a podiatrist for tip-toe walking and then he broke his big toe playing football which forced him to walk on his heels.
The back ache began just after his toe healed up and we rationalised that it was due to him walking differently for two weeks. But the back ache persisted.
On Christmas Eve 2018, he was upset and couldn’t get to sleep because his back hurt and he had tingles running up and down his leg. The day after Boxing Day, he couldn’t keep up on a family walk. We took him to the GP that afternoon. Her words: ‘We don’t like to see back ache in young children’.
She made a referral for blood tests but gave us the green light to continue with a holiday to see family in Edinburgh for New Year.
We didn’t make it back home for the blood tests.
Peter’s symptoms escalated to wobbly walking, losing his balance and struggling to go up and down stairs. On New Year’s Eve 2018 we took him to my mum’s GP who immediately referred us to A&E.
There, Peter was seen by a registrar and then a consultant and then he was having an MRI, all in the space of two hours. It was incredibly scary.
When the news came that he had a growth in his chest, and that a small part of it was pressing on his spinal cord, and that he was being admitted to hospital, we didn’t know what to think.
No one said cancer at that stage.
Three days after being admitted, the part of the tumour pressing on Peter’s spine caused a spinal cord injury, leaving him with no sensation or movement below his chest.
He had an emergency operation to remove the bit of the tumour causing the compression and the next week or so was filled with intense physio and frequent testing to see if he would recover from the injury.
Finally, twelve days after being admitted, we received the good news that Peter’s condition was stable enough for him to move to Manchester Children’s Hospital, closer to home, but the devastating news that the growth was cancer.
Peter was transferred to Ward 84 at Manchester Children’s by ambulance on a Saturday in the middle of January 2019.
I remember feeling completely disorientated for the first couple of days: a new hospital, a new ward, new nurses, physios, doctors, consultants.
But I also remember one of the nurses bringing us our Milly Bag and being overwhelmed by the kindness and thought and care that had been put into it. It was a perfect mix of help and comfort.
Peter spent six months in hospital, unable to go home between chemo treatments because he was still having intensive rehabilitation for his spinal cord injury.
His Milly’s rainbow blanket and elephant stayed on his bed the whole time.
His Neuroblastoma was localised in his chest so his treatment was shorter than it might have been. He had chemo, surgery, radiotherapy and maintenance treatment finishing altogether in February 2020, eight months after coming home from hospital.
Unfortunately, the story didn’t end there. Peter relapsed in August 2020 with a tumour on his skull bone and this time the cancer had spread to his bone marrow and pelvis.
He spent a year going in and out of Ward 84 Day case for treatment, sometimes returning to Ward 84/86 for inpatient stays.
Our Milly Bag was exactly what we needed for hospital stays and the rainbow blanket and elephant went every time too.
Three years later, we have just had the amazing news this summer that the disease still visible on Peter’s scans is no longer active and he is effectively in remission again.
He is still on treatment for another six months and regular scans will continue for the foreseeable. He hasn’t fully recovered from the spinal cord injury but he has learned how to adapt to it and is as active and energetic as a full-time manual wheelchair user as he ever was before injury.
We go forwards with hope, knowing that future Neuroblastoma relapse is possible but thankful to be back in a place right now where Peter is healthy and well.
And we will always be thankful for the day we were handed our Milly’s bag, because it’s not just a bag, it is smiles and treats and help and comfort and, more than anything, a caring heart just at the moment you need it.”
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 so we got the first doctor’s appointment after boxing day.
We were told by the 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. Harrisons 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 then began asking me 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.
A nurse then came to hand over a big 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 everyday.
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 checkups 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 getting further advice.
Thank you to Milly’s Smiles for the amazing bag and making us not feel along at this awful time.
You don’t move on after loss, but you must move with. You must shake hands with grief, welcome her in, for she lives with you now. Pull her a chair at the table and offer her comfort. She is not the monster you first thought her to be. She is love. And she will walk with you know, stay with you now, peacefully. If you let her. And on the days when your anger is high, remember why she came, remember who she represents. Remember. Grief came to you, my friend, because love came first. Love came first.
Donna Ashworth – ‘Wild Hope’
Our 4th SOULS meeting took place last weekend, it warms my heart to see these lovely people arriving at the unit, open to spending time with strangers who are now becoming friends.
We share our stories, our joys and our heartbreaks, we have an unspoken understanding because we are the same, we walk to the same path in life and we are ultimately joined by an invisible bond.
As we work on our chosen crafts we wonder if our precious children are watching down on us, proudly saying that’s my mum/grandma/sister/brother.
Along the way we manage to create some fantastic pieces, at our group this month we worked with resin – and some fabulous designs were created.
Our groups are open to parents, grandparents and siblings who has experience the loss of a child – they are completely free to attend. Please get in touch for more information.
On the 7th of May, LFP Civil and Environmental Engineering held a charity day at Victory park, the home of Chorley FC.
The day included 3 very competitive football matches with teams from LFP, Peel Sports Turf, Peel Pumps and a rest of the world team – consisting of players from CLP, Wardell Armstrong, Hilton Grand Vacations and Fox Brothers. Peel Pumps edged it in the final to beat LFP to be the first holders of the ‘Graham Eckersley Trophy’.
Alongside the football there were several activities such as a raffle, an auction, inflatables, cake sales, donut sales and much more.
The day was very successful and helped raise just over £9,000 for several charities; Milly’s Smiles was fortunate to be one of the chosen charities, and we received an amazing amount of £1,000!
A massive thank you to Matt who organised the whole event, choosing Milly’s Smiles after his daughter Camille received one of our Milly Bags earlier this year.
We appreciate the support so much, it will allow us to continue supporting children and families newly diagnosed with a cancer related illness.
Our fabulous delivery team Graeme and John had a good trip over to Leeds Children’s Hospital this week where they safely handed over 20 Milly Bags to Ward L31, 32 and 33.
Thankfully the sun shone for their journey over the Pennines and they were as always, greeted with smiles from the lovely ward team.
It is always an honour to be able to support families at the point of diagnosis and subsequent admission into the wards and we never take this privilege for granted.
On arriving back in Lancashire we received this beautiful smiley photo of a young man currently being treated on L31, his mum told me “Me and my son are in here at the moment he’s on the cancer ward and we couldn’t be more thankful for one of your bags a few weeks ago . It helped us and he loves the blanket and the hat ! Thank you !!!”
Thank you to everyone who continues to support us tirelessly and to all our volunteers you are simply awesome!
This months meet up was slightly depleted due to holidays and sickness, however it was another lovely afternoon, spent with people who are quickly becoming friends with a shared bond.
We spent the time chatting and painting our fairy houses which proved to be very relaxing, we could hear the rain beating down, yet we were warm and comfortable in our meeting room.
Loulou’s Meringues kindly donated a selection of cake treats for us all which were delicious, they were very quickly polished off during the session!
These monthly meets give families the chance to spend time with people who understand and the benefits in attending are significant and include:
Realising you are not alone
Being able to express your feelings within a safe and supportive environment. This can be a very therapeutic and healing experience, particularly as you will find others in the group listen non-judgmentally, and agreeing that they too have similar feelings.
Gaining hope, it is very powerful to see others in the group who are further along their road to recovery and who have been able to work towards a happier life, living alongside their grief. Having these role models shows that recovery is attainable and this brings renewed hope for the future.
Increased self-understanding. Families will learn and share effective ways to cope and handle difficult situations. They will gain better understanding about themselves.
Helping others – as families benefit from support they will be able to help new members grow and make progress. They will be able to affect others positively by sharing their story, their challenges and fears.
Affordability – groups are free to attend, there is no financial cost at all.
Our sessions are open to all families who have lost a child, no matter how recent or how long ago. If you are thinking of coming along or would like to know more, please do get in touch, we would love to speak to you.