In the first of the four sections for Blood Cancer Awareness Month and Childhood Cancer Awareness Month, I’ve chosen to focus on some of the symptoms a child with acute lymphoblastic leukaemia (ALL) may show signs of prior to diagnosis, based in part on our own experiences.
This week-long section is running in conjunction with Leukaemia Care as part of their #SpotLeukaemia campaign to raise awareness of blood cancers throughout September. I’m incredibly grateful for their support and backing.
Acute Lymphoblastic Leukaemia is a blood cancer that affects the white blood cells, or lymphocytic cells. Too many immature lymphoid cells, known as blast cells, are produced and flood the blood and bone marrow. These abnormal cells accumulate and begin to fill up the bone marrow, interfering with the production of healthy new blood cells. Diagnosis is usually in the form of blood tests and bone marrow examination.
ALL is the most common type of cancer in children. It progresses rapidly and aggressively and requires immediate treatment; 64% of patients diagnosed with ALL are via emergency presentation.
Prior to Suki’s diagnosis we were repeatedly turned away from our GP, despite becoming desperately concerned about her deteriorating health. Continually being told it was ‘just a virus’, not to do anything, not to give her anything, just to keep an eye on her; made to feel like we were making a big fuss over nothing.
As so many parents do, we Googled the symptoms. She ticked every box on that now infamous NHS ‘checklist’, we were convinced she had leukaemia.
Contacting our local hospital in desperation, they agreed to see us, and we got confirmation of the news we’d been dreading the very next day. Treatment began that night.
Looking back at photos, Suki looked so terrifyingly ill it seems almost impossible not to recognise that something was desperately wrong with her.
Sadly, this is all too common; so many oncology parents of children with varying forms of childhood cancer share similar stories, symptoms are so often overlooked by GPs.
It’s been proven that earlier diagnosis and treatment can greatly increase the chance of survival. And it is one of the main reasons that drives me to continue to write and campaign for greater awareness.
Childhood cancer is considered to be rare, but it isn’t rare enough to be ignored.
Fatigue: Extreme Tiredness & Complete Exhaustion
It is common for the child’s health to deteriorate gradually during the months prior to diagnosis, but it is hard to pinpoint exactly when things change.
There is usually a gradual increase in the level of tiredness, one of the most common symptoms of childhood ALL. Often starting with slight fatigue, which people initially put down to other factors; leading busy lives, pressure of school, hectic social patterns etc.
Slowly the tiredness begins to affect every aspect of their lives, playing with friends, their ability at school, their physical strength, their lack of concentration, their desire to do anything at all.
In the month before diagnosis they are often completely wiped out and become physically very weak. Dozing on the sofa, no energy to climb the stairs or walk any distance at all, becoming restless and irritable.
The tiredness usually becomes abnormal and extreme, to the point of complete exhaustion.
Suki would sleep as a soon as she came home from school. She had no energy to take part in physical activities; swimming lessons became an impossible task.
She became so weak she had to be carried upstairs. In the few weeks prior to diagnosis, she could barely move from the sofa, drifting in and out of sleep.
Over Christmas she was extremely lethargic, she lacked the enthusiasm or ability to do almost anything at all. At what is normally a magical time of year for most 4-year-olds, when there is so much fun and excitement to be had, she’d completely lost her sparkle.
Bruising and bleeding
Another sign of ALL is the appearance of unexplained bruises without any apparent physical trauma, sometimes presenting as tiny red spots on the skin, known as petechiae; they are the second most common symptom reported by leukaemia patients.
The red spots are caused by tiny broken blood vessels under the skin, due to the low platelet count and blood clotting issues. The bruises can appear anywhere but commonly they show on the arms and legs.
The lack of platelets can also lead to unusual bleeding, such as recurring nosebleeds or bleeding in the gums, especially when brushing teeth. Sometimes there can be signs of bleeding bowels, which can present as darker stools.
During the month leading up to Suki’s diagnosis, we noticed more and more bruises appearing on her legs in particular.
For us, it was one of the main factors that led us to believe we were dealing with leukaemia. We knew the bruises weren’t as a result of impact or trauma; they were appearing randomly and multiplying in a matter of days.
Despite it being a symptom associated with ALL, Suki didn’t show any signs of any unusual bleeding at any stage.
Aching Joints & Abdominal Pains
Leukaemia cells form in the bone marrow and can cause anything from mild aching to extreme pain in the bones and joints. It can sometimes affect the ability to walk, making simple tasks such as getting up from a chair or out of bed very difficult.
The liver and spleen are important organs for filtering blood. When the immune system is compromised, they often swell. Abdominal pains can be the sign of an enlarged spleen or liver caused by leukaemia, due to increased levels of abnormal blood cells. It can range from moderate discomfort to a sharp pain.
Suki became weak and complained of aching all over. She’d struggle to walk, even the simplest of tasks she would find difficult to complete. She moaned of sore and tired limbs and joints.
Her abdomen became noticeably swollen, and she complained of it being painful to touch.
Sweating & Fevers
Infections are a common sign of leukaemia, this due to the lack of healthy white blood cells to fight bacteria or viruses.
Sweating, often at night, can be extreme to the point of soaking the sheets.
High temperatures or feeling feverish, picking up coughs and colds easily and finding them difficult to shake off, can all be signs of infections.
Drifting in and out of sleep in the day, Suki would then struggle to sleep at night. When she did sleep, she would wake up drenched in sweat to the point the bedding needed to be changed.
She was restless, frequently waking up hourly, moving from one bed to another, not knowing what to do with herself.
Her skin was warm to touch, but she rarely showed any signs of a temperature or cold or flu-like symptoms.
Pale Complexion & Swollen Glands
Anaemia is common with acute lymphoblastic leukaemia (ALL). Often the child appears very pale in complexion, looking more ‘washed out’ than normal. This is due to the lack of red blood cells as the leukaemia cells start to take over.
The lymphatic system plays an important part in fighting bacteria and other infections, as well as destroying old or abnormal (in this case cancerous) cells. The lymph nodes (glands) can look or feel swollen as they fill with leukaemia cells.
In the month or two prior, Suki gradually became more and more pale, with her skin starting to turn a yellowish-grey colour in the last few weeks before diagnosis.
Her lymph nodes around her face began to fill and swell, distorting her whole face. In the last week before she was diagnosed, the swelling was rapid and noticeably worsening each day, to the point she didn’t really look like Suki any more. She looked desperately ill.
Loss of Appetite & Weight
Sometimes the spleen and/or liver become so enlarged they can press against other organs such as the stomach, making the child feel full after eating only a small amount, gradually leading to a loss of appetite and weight loss over time.
Leukaemia can also cause an increased metabolism (the rate you burn energy from food), which in turn can result in weight loss.
Slowly Suki began to eat less, reaching a stage where she was barely eating anything at all. She didn’t fancy much, anything she thought she wanted she’d take one look at and push it away. Her weight began to decline in the last few weeks prior to diagnosis.
Trust Your Gut Feeling
For this there are no medical symptoms, but as a parent, you know your child.
It is a feeling like no other and one so very different from your child’s previous sick days or normal bumps and scrapes.
That empty feeling, dull ache, those moments of sheer panic, not wanting to eat, not being able to sleep, the concern of your child’s poor health is never, EVER out of your mind.
That feeling of desperation and not knowing how to help them, of what to do, or where to turn. That gut feeling that consumes your every thought.
In the month prior to Suki’s diagnosis, we were desperately concerned about her health. The more the GP turned us away, the more we looked into things ourselves. The more we started looking back at signs of when she started deteriorating.
Initially coming up with a number of possible causes, the more ill she became the more boxes she ticked on the NHS ‘checklist’. In our minds, it led to one thing and one thing only.
When the paediatrician uttered the words “I’m sorry, it’s not good news, your daughter has leukaemia”, my response was “I know”.
No one ever dreams of hearing such terrifying words, to be told your child has cancer. But strangely, that day there was a form of relief knowing that someone was finally listening to us and offering to help our very poorly little girl.
If your child shows any, a combination, every one, or perhaps alternative signs of ill health from the previously listed symptoms and you are concerned about them, take them to your GP.
If you aren’t happy with the answers provided, then keep on fighting until you are comfortable with the medical advice you have been given.
More needs to be done to help GPs recognise the symptoms of leukaemia and all the many forms of cancers in children and young people. GPs need to provide families with paediatric hospital referrals if they are uncertain of the causes of the child’s ailments.
So many of the symptoms are initially put down to other factors or illnesses. Not all children show all signs at the point of diagnosis, part of the reason cases are often dismissed or not taken seriously.
Early diagnosis can affect the treatment path the child follows and ultimately, most important of all, it can save lives.