Anything but cancer – would you know what to look for in your child?

As a mother, I maintained a high level of alert for my children, ever watchful for signs of impending disaster.  With Fred there was an extra level of peril because, like a velociraptor, he was always testing the fences looking for weak points.  Like that time he got up early and made a den by tucking a duvet over the TV, or when he jumped in the pool on holiday as we were getting the bags out of the car. It was difficult to relax with Fred around; he’d never be where you left him.

Also, I was a fairly uncompromising mother when it came to illness.  I was caring and attentive if they were “actually ill” but I did prescribe a substantial course of sleep, water and fresh air before that kicked in.  “You’ll feel better once you get there” was one of my well-known catchphrases.

But when Fred was diagnosed with cancer, I genuinely didn’t see it coming.  Sunscreen was right:

Don’t worry about the future

Or worry, but know that worrying

Is as effective as trying to solve an algebra equation by chewing Bubble gum

The real troubles in your life

Are apt to be things that never crossed your worried mind

The kind that blindsides you at 4 p.m. on some idle Tuesday

It wasn’t a Tuesday, it was a Monday, I was completely and utterly blindsided.  So much so, that I wasn’t even there.

I, like every parent, can recite the signs of meningitis in their sleep: the temperature, the stiff neck, the rash that doesn’t disappear when pressed with a glass.  I know about cutting grapes in half, and how to spot concussion.

Childhood cancer not so much. 

In 2019, there were about 371 total cases of meningococcal disease reported, a number which is decreasing with vaccinations.  In comparison,  around 1,400 children are diagnosed with cancer but would you know what to look for?

So I’m going to talk you through it.  It is painful for me to do, and it is something I have gone over countless times in my head, desperately looking for an exit I could have seen earlier, but there wasn’t one.  

1. Pale skin.

Fred was always pale, he has my delicate Celtic complexion. However, he spent so much time outside, and in the summer his nose and cheeks were covered in freckles, so it was difficult to tell.

2. Feeling tired and breathless

Fred was never tired, or breathless.  But in June 2019 he broke his shoulder in a ridiculous lunchtime Rugby game.  This slowed him down considerably, so his activity levels were not what they would normally have been so it was difficult to spot the change.  Fred’s default setting was about an 11, so if he was less active, no one was complaining, in fact we were all quite relieved.  And Fred had a broken bone so obviously he was going to be tired whilst his body healed etc.

3. Repeated infections over a short time

He didn’t have these.  I’ve always prided myself on my lack of attention to cleanliness and dirt resulting in them having the immune systems of an Ox.  He was never ill. He had chicken pox when he was 5, and the odd cold. That was it. The irony of this is not lost on me.

4. Unusual and frequent bleeding, such as bleeding gums or nosebleeds

Again, if he had these I didn’t know about them.  If his gums had been bleeding I would have probably told him he wasn’t cleaning them properly.

5. High Temperature

Thinking back, he probably did have a high temperature during those weeks, although we didn’t have a thermometer in the house to check.  But either way the feeling didn’t last and I put it down to general end of term ‘rundownness’ (that’s a medical term)

6. Swollen lymph nodes

He did have swollen glands one evening, along with feeling a bit warm.  I told him he needed sleep.  The next day they were back to normal and he was feeling better.  Sleep solves everything. 

7. Night Sweats

Fred had had night sweats since he was a toddler.  He was like an engine that was always running too hot and often when I checked on him at night his hair would be soaking, so this wouldn’t have registered with me.

8. Bone and Joint pain

He had a broken shoulder, so it was going to hurt, and he had grown to over 6 foot in a relatively short space of time.  I’d taken him to A&E years before with what turned out to be ‘growing pains’ and not a fracture, so again, these were easily explained.

9. Unintentional weight loss

This is the one that haunts me most.  Because he did lose weight and I didn’t notice.  I’m his mother and I should have noticed.  But teenage boys change at a massive rate.  He was huge. He had always been a skinny racing snake, but was now significantly broader and stronger – so the whole cycle of growing out then up seemed to be continuing as normal.  And we don’t have scales in the house, and he was a teenage boy, I hadn’t seen him without clothes on for about 2 years.

10. Easily bruised skin

This one made me laugh every time a doctor later asked.  He was always covered in bruises.  He was one big bruise.  Between the skateboarding, the tree climbing, jumping off walls and randomly throwing himself on the ground just for the LOLs, yes he was bruised.  

But about a week before he was diagnosed I noticed some bruises on his arm.  It looked like finger marks where someone had grabbed him.  It was about the same time he said he didn’t want to go to school.  My husband and I had a conversation in bed that night about whether he was being bullied.  It had happened before and he hadn’t said anything, so we agreed we’d keep an eye on him.

That was Tuesday 2nd July.

Wednesday 3rd July

It was a beautiful evening so we decided to go for a walk into the village for some fresh air.  Fred said he was tired and didn’t want to come.  I obviously said the fresh air would do him good and I was worried he was getting depressed about his shoulder and related inactivity.  He refused to walk after a while.  He was an awkward bugger so that wasn’t that unusual (his brother was also complaining) so we left him on a bench while we walked to the end of the lane and back, then we walked home.

Thursday 4th July

He had a school trip.  In another ironic gesture, it was to Birmingham City Centre which we would come to know incredibly well over the next 9 months.  He walked round Birmingham all day but he didn’t eat his packed lunch.  This was unheard of, especially as it contained an entire pack of mini sausages.  After his death, a friend of his sent me a picture from that day.  I’ve looked at it time and time again, to see if I can spot it, to see if I can tell.

Friday 5th July

I had to travel to Bristol for work.  He went to school, but they phoned to say he wasn’t feeling well.  His Grandad picked him up and brought him home and he spent the afternoon on the sofa.

Saturday 6th July

Local Village fete.  We made him go because the ‘fresh air would do him good’ and it would get him out of the house.  That evening, we went to our friends’ house for drinks.  Fred didn’t want to go but I said he would feel better when we got there.  He did.

Sunday 7th July

Fred’s lymph nodes were swollen and he felt rough.  I decided he had glandular fever.  It just so happened that I had tickets to Barbra Streisand in London – I decided to go anyway.  If it was glandular fever, he was going to take a while to recover but for a day or two, his Dad was perfectly capable of looking after him at home and fetching him drinks on the sofa.  That evening, my husband said he had fallen asleep and really wasn’t feeling well.  I remember standing in the queue for the bar at Hyde Park and sending him the symptoms of Sepsis.  Our friend’s son had had sepsis earlier in the year and they were lucky to have caught it, and he had a broken bone so it was a possibility.  We agreed we’d get him a GP appointment in the morning.

Monday 8th July

I was still away in London but made an appointment for Fred at the GP.  Mid-morning, I was sitting in Regent’s Park with a coffee, reading a book.  My husband phoned to say yes, it was glandular fever, and Fred was back at home in bed.  The GP was a trainee and had requested blood tests just to confirm the diagnosis.  I went back to my book, confident that I had not overreacted, and grateful that my husband had managed to handle it all while I was away.  

Later that afternoon, I was standing in Trafalgar Square when I got a call from an unknown number, which I nearly didn’t answer.  It was the hospital.  They had received his blood tests and we needed to take him to A&E as a matter of urgency, although she wouldn’t say why.  She was quite insistent that I should make my way home.  I phoned my husband, and raced across London to get the train, sobbed at the lady at the Virgin ticket counter to change my ticket, and got the first train I could.  My sister was to pick me up from the station and take me to the hospital.

I remember sitting on that hour long journey and staring out of the window.  I told myself that I wouldn’t panic, that I would keep calm and enjoy the view, because I knew, somehow, that life wouldn’t be the same when I got off the other end.  

My husband met me in the hospital car park and told me that Fred had leukaemia.   A normal white blood cell count is between 5 and 10.  If you’re a bit poorly it might go up a little.  Fred’s was over 150 ( It would reach a maximum of over 400).  There was nothing else it could be.

Some days I will myself back on that train, so that I can step off again and be told it’s glandular fever after all.

It wasn’t healing bones, or teenage awkwardness, or bullying, or depression, or growing pains, or glandular fever, or sepsis, it was cancer.

We were admitted there and then, and transferred to Birmingham Children’s Hospital the following morning for treatment to begin.

Acute Lymphoblastic Leukaemia comes on suddenly and Fred’s was particularly aggressive.  Less than 6 months after Fred’s death, Archie Lyndhurst died in his sleep on 22nd September 2020.  It was later confirmed that he too had died of ALL, but had shown no symptoms, or warning signs, and that the onset was so rapid, no-one could have known.  I wept.  I wept for his family, devastated by the loss of their child, and wept for myself, knowing how close we came to losing him overnight.  

Fred would have 9 months of horrible, traumatic, gruelling treatment before he died, but it is still time that I am grateful for.

We will be forever grateful to that trainee GP that requested those blood tests.  Forever grateful for an NHS system that can take us from speaking to a receptionist to chemotherapy in 24 hours, without demanding a single penny from us, or asking how we were going to pay for it.

All cancers are different. Some children wait months or weeks for a diagnosis, some children repeatedly visit their doctor with no answer.  They have different symptoms: lumps, headaches, sickness, anything that means that they’re just not right.

The Grace Kelly Childhood Cancer Trust has produced awareness cards to identify warning symptoms and signs that you should check with your doctor.  I don’t mean to panic anyway, and time and time again these symptoms won’t be due to cancer, but knowledge is everything.

Fred Bennett’s Don’t Look Down Fund is a Special Named Fund for the Children’s Cancer and Leukaemia Group.  We hope to raise awareness of childhood cancer, and raise vital funds to find effective cures and kinder treatments.

Childhood Cancer Awareness Month takes place in September each year.

CCLG, along with many other children’s cancer organisations, marks Childhood Cancer Awareness Month (CCAM) each year in September. While we work to raise awareness of childhood cancer all year round, during September we focus on increasing awareness of cancer in children, as well as the work we do to support children with cancer and their families.

Be Bold. Go Gold. for Childhood Cancer Awareness Month. There are many ways you can get involved and help us to beat childhood cancer.

Still firm in the belief that fresh air, water and sleep are everything, I’ll be running the Great North Run on 12th September.  Click here to donate, or follow our Facebook page to learn more about our fundraising efforts.