Stewart, 45 is my wife’s cousin.  He and the lovely Ange have been together for 26 years and married 16 of them.  A gentler, humbler man you’d struggle to find.  His warm smile, though, often hides deep scars and the most unbelievable pain, for Stewart lost his baby daughter to cancer.  Here’s his story…

With my wife Ange experiencing a series of ectopic pregnancies we’d been told that we had very little chance of conceiving again.  We considered ourselves lucky though.  Despite the struggle, we already had Carl, our first born, now 23.   To say falling pregnant with Millie was a shock would be an understatement: after all, Ange was due to start university when we found out.

It wasn’t a great pregnancy, however, as Ange was ill for much of it. In fact, I remember her regularly being hunched up on the sofa when I got home from work.  She really suffered bless her.

Neither was the birth straight forward.  With failing kidneys and preeclampsia we were rushed for an emergency C-section. It was truly horrendous.  I was simply a nervous wreck.   For someone who’s just a simple lorry driver, like me, I was a fish out of water, unable to offer help or assistance.  Furthermore, during the C-section, Millie was difficult to find and, when they did finally find her, she wasn’t breathing so was transferred straight onto the resus table.  Any parent that has experienced this will tell, you it’s a damn scary time.  A little while later though, and we heard that magic cry that reduces us all to mush.  We were in love all over again.

We have lovely memories of Millie’s early months.  She just loved being bathed, loved the attention of it all, and we, in turn, loved bathing her.  She was a bright little thing too.  An early walker and talker but, most of all, I just remember how happy she was.  Her smile was infectious and she never seemed to cry.

It wasn’t all plain sailing, however.  She was born with a heart condition – pulmonary stenosis, which is a narrowing of the arteries.  To complicate matters, she also had a faulty valve stuck on open and a hole in her heart.  Obviously, we knew that she’d require surgery later down the line but, apart from her pale complexion and the darkness under her eyes, she was just fine.  She was a fighter and she was perfect.

She was 20 months old before we noticed any serious change in her.  The first thing that caught our attention was that she went off her food.  For a short time we put it down to her being a bit faddy.  After all, babies and toddlers can go through this sort of thing.  However, this deteriorated quite quickly and before long all she wanted was water.  We took her to the doctors, of course we did, but they just put it down to various viruses so we continued to try and coax her.

The problem really came to a head when we were visiting a friend’s caravan in Benllech, Anglesey, and she just wanted to sleep.  I remember taking her down to the beach and she just became inconsolable.  She kept saying she wanted ‘mummy’s bed’ and seemed so weak.   Alarm bells were going off in our heads. Ange and I both ended up in tears with worry and we somehow knew, instinctively, there was something very wrong.

That night we ended up in Bangor hospital.  Like our previous visits to the GP though, this wasn’t the first time we’d taken her to hospital.  As I said, various doctors put it down to a virus or an ear infection.  Then, on another occasion, we were told that she just had a chest infection.  On one occasion, because of her heart condition, one doctor asked us if anyone had discussed heart failure with us!  Like seriously, the way it was just bluntly dropped into conversation really upset us.  However, just like on our previous visits we were sent home from Bangor and told to visit our GP the next morning.  What else could we do?  We’d seen a raft of different doctors, all of whom said there was nothing to worry about, nothing sinister.

A couple of days later, I returned from work to find Millie and Ange both in bed.  As I approached Millie just looked at me with dead eyes, something that will stay with me forever.  We knew something was wrong.  You do when it’s your own child.

We took her back to our GP and he took one look at her and knew there was something very wrong. He made her an appointment the same day to have tests done at the local hospital.  Why had it taken so long?  We went to the Countess of Chester hospital later that day and for the first time they did blood tests and, within a very short time frame, a matter of hours, we knew.  We knew all was not right before the results came back, however, as they’d now moved us into a dedicated family area.  They sat us down and told us our darling Millie has Leukaemia. We were devastated. My head was buzzing, I could see their mouths moving but I honestly can’t remember anything of what they said.  My body just shut down.

From the Countess of Chester on Monday evening where our world had been turned upside down, we were transferred to Alder Hey Children’s hospital in Liverpool by Tuesday morning.  Ange had to drive home at 2am to get things for Millie and I followed the ambulance to Alder Hey.  It was a nightmare.  She was that bad that the paramedic told me not to try and keep up, as they may have to put the blues and twos on – she was just so, so ill.  At this point they had realised that on top of the cancer she was also septic.  It was just horrendous.  When we arrived we were told, there and then, that they only gave her a 20% chance of surviving the night.  This was two days after her second birthday.

She received a blood transfusion and, in the following days, she was like a different child – more alert, less fatigued.  But she was still gravely ill.  At this point as well as being devastated we were also angry.  They discovered a lump the size of a melon in her stomach.  Why hadn’t any of the previous hospital visits, of which there were many, picked up on this?  The cancer was in her liver, her kidneys, her bones, her skull, it was everywhere.  It was also at this point that the category of her cancer was changed from Leukaemia to neuroblastoma.

What living with cancer looks like on a daily basis.

I remember there being just so many tests and surgeries before they could even begin her treatment.  A lot of them were incredibly invasive and painful, despite the anaesthetics that she was given.  The bone marrow aspiration tests and the blood that was taken from her spinal cord, for instance, were just awful procedures for anyone to undergo, let alone a two year old.

I know I’ve said it, but I’ll say it again: she was two.   She was so little and so scared by everything that was going on. The doctors are used to it, it’s the norm to them, but for Millie and for us, her parents, it’s the unknown.  I remember the nurse coming in to set up her up for her first surgery and my baby girl was just surrounded by machinery, dials and tubes.  We had no idea what was going on and we were terrified.

You know she’s so poorly, and it’s absolutely necessary, but you then start to worry about the side effects.  You want to educate yourself as quickly as possible about the illness so you read everything (and I mean everything) that you can find on it.  But, the more research we did, the more we found out that chemotherapy etc. could potentially cause her great harm, in the shape of other cancers and damage to her kidneys, later in life.  You’re angry because you want your daughter to have the treatment to fight the cancer but you’re worried about how the treatment will affect her quality and length of life afterwards.  It’s a horrible, horrible feeling.

As time passed though, tragically these things slowly become normal to all of us, Millie included.  Things that were unknown to us in the beginning were now part of our daily lives.  The amount of information that we were bombarded with sometimes left us feeling like one of the medical staff.  The pick up the names and acronyms used for all of her treatments and get used to dispensing her medication during those short respite visits home.  We should have been taking her to the zoo or to the park, or doing messy play and reading stories like other families with a two year old, but we couldn’t.  This was now our life.

We were accommodated during much of Millie’s illness in the fantastic McDonald House: our small home away from home for the best part of 10 months.  It meant we could remain onsite every day and spend all of our waking hours at her side.  We had washing machines and a basic kitchen so we could look after ourselves, while the people who work there would talk to us, supporting us during the really difficult times.  Occasionally, we would have very brief periods where we’d all go home, Millie included, but she’d soon get an infection and we’d be rushed back again.

Being onsite, however, means that we were exposed to everything that Millie was going through 24 hours a day.  You know what it’s like as parent if your child even falls over, grazes their knee and cries…you want to sooth it and take away that pain.  We couldn’t.  We were helpless.  I remember her coming back from one early surgery and telling us to get the peg out of her.  She didn’t know what the hell it was and it scared her.  All you can do is hold her hand and stroke her hair.  This was our precious daughter and things were being put into her beautiful little body.  It was brutal and so unfair.

To give you an idea as to the intensity of the treatment, Millie had over 30 general anaesthetics in a 10 month period with some of her surgeries lasting up to 10 hours, such as the one to remove the tumour from her abdomen, which involved taking major organs like the bowel out of the body to get to the tumour.  This was our baby girl.  We were just in shock.  I remember looking at her in the intensive care unit following her op, she resembled a plastic doll: lifeless, pale and with an almost wax-like complexion.It devastated us seeing her like this.  You can’t imagine what it is like to see your two your old baby daughter in this state.

Throughout all of this we also had Carl, our son, who was 19, to think of.  The day of the 10 hour operation we had told him to go to work because he was so scared.  You could see it when you looked in his eyes.  We didn’t want him to see Millie like this and didn’t want him all alone at home worrying.  But, Carl being Carl, left work to come to the hospital.  He just wanted to be there.  He’s a typical lad who doesn’t often show his emotions but seeing his baby sister like this upset him so much.  We shielded him as much as we could but he just wanted to see her and spend time with her.  There was so much love between them.

Another brutal treatment that Millie had was 80 days of rapid COJEC on a cycle of every 10 days.  Again, to give you an idea of how aggressive the cancer was, the normal cycle for cancer patients is every 21 days!This meant she’d be hooked up to chemotherapy for 3 days, following which they’d give her GCSF to shake her bloods up in the hope that she’d recover more quickly and her body would be able to take the next cycle of treatment, scheduled in just a few days’ time. Without this, she’d hit rock bottom and not be physically able to take the next course of treatment.

Following this brutal 80 day cycle, they scanned her and, to our heartbreak, found that the cancer still hadn’t gone.  She’d gone through all of this for nothing.  As a result, they put her on a TVD treatment, which is yet another cocktail of drugs followed by another course of GCSF.  How much more could her little body take?

Following this additional treatment there seemed to be a glimmer of hope: the doctors thought they’d got most of the cancer.  They believed that she’d just need yet another trip to surgery in order to mop up any that was remaining in her bone marrow.  The operation, however, took its toll.  She was so weak, so tired and still seemed so poorly.  In fact, usually after an operation, she needed about 2 weeks recovery time.  This time she needed 8 weeks.  During this time, we did have rare occasions of respite and even managed to take her home for a week at one point.  This was wonderful.  Just having her home, where she belonged, was precious, precious time.

In a horrible twist, Ange at this time contracted measles.  I was out with Millie and came back home to find an ambulance on the drive.  The doctors had told us all along that there were two things that they couldn’t do anything about if Millie caught them and they were measles and chickenpox.  If Millie caught this off her own mum she’d be dead.  This was truly a frightening time. Ange was wrought with guilt, thinking she’d given our baby a death sentence.  Ange was in hospital for 10 days and was in a bad way but, fortunately, Millie, didn’t catch it.  However, I was now on my own with a gravely ill daughter, taking her to appointments and giving her meds, while my wife was in the high dependency unit.  People ask me how I cope, but you just do, it’s your family after all.

With Ange well again and out of hospital we were nearing the end of Millie’s 8 week recovery period.  We’d also started to raise funds for her to travel the USA to undergo specialist treatment that we thought would make a difference.  We were willing to do anything to make her better.  We’d have gone to the ends of the earth for her.Unfortunately, as those weeks passed, it became clear to us that our darling daughter still wasn’t well.  She’d relapsed.  And she’d relapsed in a bad way.    On Good Friday she complained of a bad headache.  Between then and Easter Sunday she had a series of scans that showed up black dots around her brain.

At this point, there were quite a few family members visiting Millie in the hospital and suddenly the nurses asked if everybody else could go.  For the first time, we also saw a MacMillan nurse in the room with us.  We knew what was to come.  Any parent would.  They sat us down and said ‘sorry, we can’t save her’.

From the scan, you couldn’t see her brain for tumours and lesions.  There was nothing more that they could do.  At this moment, all we wanted to do was be with her.  We left the doctors to go back into her room, we crawled up on the bed with her and Ange and I just cuddled her.  It was the saddest moment of my life.

With Millie herself not wanting to be in the hospital any longer, the decision was made to bring her home.  With machines and bottles of oxygen delivered,house, parts of our house resembled a hospital.  But we just wanted to have her home, where she belonged.  Three days later she was gone.  Christened and read her last rights in the same afternoon.

The ending was so, so cruel.  She was pumped full of morphine but was still in so much pain.  You couldn’t move her without hurting her.  In fact, she’d only let me move her, Ange thinks it was the trust we had between us, I think I just had the knack.  Either way, seeing her this way killed me.  No child should go through that.  I remember Ange telling her that someone would be along soon to take her hand and lead her away.  Ange told her not to be scared, but to go with them and she’d be cared for and loved.  It was the hardest thing we’ve ever done.

Our hearts and our lives were empty.  I remember the first morning after she had passed, waking up feeling empty and utterly heartbroken, missing even our usual routine of preparing her many concoctions of meds.  But most of all I missed her smile.  I missed everything about her.

In the weeks following her death the Amelia-Mae Foundation was born.  We hold precious, more than anything, Millie’s smile and we wanted a way to help other families and children suffering from neuroblastoma.  Meeting the families, as early as we possibly can, and supporting them financially and emotionally is our key aim.  Even performing simple tasks that are easily forgotten about during this period of emotional turmoil can make a huge difference.  So, we take them in clean underwear, toiletries and food…all of the things that families going through this awful, awful time are too preoccupied to worry about.

In the future we’re aiming to raise enough money to buy static caravans that families with children suffering from Neuroblastoma can spend some respite time in between treatments.  Like us, these mums and dads will be on basic sick pay for large portions of their child’s illness and simply can’t afford even the smallest of luxuries that may bring a short smile.   Eventually, we’d love to be able to send families who have successfully finished their treatment, to Disney World in Florida.  We cherish our happy times and happy memories; without them we wouldn’t be here today.  We now want other children and families afflicted by this terrible illness to make some happy memories of their own and, in doing so, do Millie proud.  We love you baby girl.

Approximately 250 children a year die in the UK of neuroblastoma.  If you’d like to find out more about the work that Ange and Stewart do please visit their website: http://www.ameliamaefoundation.co.uk/

David writes about family travel and the great outdoors at www.pottyadventures.com