Milly’s Story

Shared by Lorraine Hargreaves, Founder of Milly’s Smiles

Milly’s story is where everything began.

Milly is my youngest daughter, she was bright, clever, very funny, caring and beautiful, she was also full of life, and loved her family and friends fiercely.  Shortly after we had celebrated her eleventh birthday, out of nowhere, our whole world changed.

Milly had been unwell on and off for a few weeks, there was nothing we could put our finger on and we thought it was due to her starting a new school year and taking on lots of extracurricular activities.  However, over the weeks Milly didn’t improve and so (being a nurse) I said we were taking her to see the doctor to request a blood test.

We saw an out of hours doctor who sent us to the Children’s Assessment Unit at The Royal Blackburn Hospital.  Milly had bloods taken and then we waited.  A few hours later we were taken into a room (at this point I knew we were about to be hit with some serious news), we were told that Milly had leukaemia. And then, right at that point our lives changed and have never nor ever will be the same again.

Milly and I were quickly transferred by ambulance to The Royal Manchester Children’s Hospital, sitting in that ambulance looking at Milly attached to monitoring equipment sat on a stretcher was heartbreaking.  I had no idea what was going to happen to her, but I kept praying that this was wrong and that when we saw the doctors they would say it was a mistake and that she had a virus that could be easily treated. So many silent prayers were said in the back of that ambulance on the way to Manchester.

Arriving on the oncology ward (Ward 84, now Ward 86), is a moment that I will never forget, I was trying to remain strong and positive for Milly whilst also trying to hide the sheer terror that I was feeling.  All around were children with no hair, hooked up to drips with machines beeping in the background.  

The hours and days after our arrival were a whirlwind and a blur, Milly went to theatre for a Hickman line and bone marrow aspirate. When the results came back, it was official, there was no mistake, Milly did not have a virus she had Acute Myeloid Leukaemia (AML) an aggressive form of the disease and her treatment was to start straight away. 

Milly had her first cycle of chemotherapy, which was given over a few days.  We then had to wait for her blood cells to recover, where we would be allowed home for a few days, before starting cycle 2.  Unfortunately, Milly’s body didn’t respond to the chemo, and suddenly there was talk of her needing an emergency bone marrow transplant. However, doctors decided to try a second, stronger round of chemotherapy first and that second cycle was brutal.

Milly was much more unwell, nausea, vomiting, diarrhoea, mucositis, she had every side effect possible, but throughout it all she showed incredibly bravery and dignity, she worried about me, and how I was, she never complained about anything, it was heartbreaking to see, and there was nothing I could do expect hold her tight and tell her how much I loved her.  That feeling of hopelessness was all consuming; I was her mum I should be able to protect her and keep her safe but I couldn’t and instead I had to put all of my trust in the doctors and nurses.

Thankfully by Christmas Eve, Milly had recovered enough for us to celebrate Christmas together in hospital (I didn’t know it at the time but this was to be Milly’s last Christmas).

A further round of chemotherapy followed (again with the harsh side effects) which was followed by some precious time at home.  We made the most of this time as the next time Milly was to be going in hospital was to have a bone marrow transplant, which would hopefully ensure the leukaemia did not return. 

The transplant took place on 20th March 2015 (we will forever be grateful to the incredible stranger who donated their cells for Milly).  She did amazingly well throughout the transplant, it was not easy to say the least, but again she did it with grace and dignity.  Just one month later, on 20th April, Milly rang the end-of-treatment bell and we went home to start rebuilding our lives and living every day to the full.

Milly was due to start high school that September and she was so excited to be with her friends, and to just being an ordinary eleven-year-old girl again.

Following her discharge, we had weekly outpatient appointments on the Day Case Ward and it was during one of these appointments that her Consultant thought she was looking a little pale.  He played down his concerns but decided to do a bone marrow aspirate, as her bloods were showing a slight drop in her platelets.  This was done under general anaesthetic and we went home.  That evening was Milly’s introduction to her new school, her form and her tutor, we went along full of optimism for her future.  It was a great night, Milly loved her new form tutor and everyone made a fuss of her.  We bought the things she would need for school which included a recorder, apron etc, all the little things that meant she was moving forward.

On the way home there was a voice mail from Mily’s consultant. The leukaemia was back.

Our world collapsed for the second time.

The consultant explained our options: we could do nothing, we could try a second transplant, or we could look at clinical trials.

Milly was still feeling quite well, so we chose to go for a second transplant.

Before going back into hospital, Milly was allowed to stay home for a few weeks so that she could attend her junior school leavers’ prom. When she got home, she told me that she it had been the best night of her life.

The next day, Milly went into hospital to start chemotherapy again, this time, it didn’t work, and she didn’t make it to transplant.

Five months later, on 20th September 2015, Milly died.

She had been diagnosed just ten months earlier.

After Milly died, our home felt silent. Empty. Everything was different.

I knew that I couldn’t let Milly’s story end there, I wanted her life to make a difference, to have an impact on people, and as Milly’s mum my worst fear was that people would start to forget her, and I just could not let that happen.

I had seen firsthand what families go through when their child is diagnosed, the fear, the confusion, the endless hospital days, and the way your whole world shatters overnight. I knew how lonely that moment can feel.

And I knew that even the smallest act of kindness can bring light into that darkness. 

That’s how Milly’s Smiles began.

I wanted to make that first hospital admission just a little bit easier. To provide comfort, care, and a message that says: you’re not alone.

Each Milly Bag we deliver is filled with practical items and comforting touches, but more importantly, it’s filled with love and understanding.

Because I know what it feels like when your world has fallen apart.

I know what those first hours and days are like.

And I know how much it means to feel seen, cared for, and understood.

Milly’s Smiles was created in memory of a little girl who brought light into every room she entered, and that light still shines today, in each and every Milly Bag that is given out.

Every time a Milly Bag is given to a family, a part of Milly’s spirit goes with it — bringing warmth, hope, and compassion at a time when families need it most.

For more information about Milly’s Smiles click here