CHILDHOOD CANCER FACTS

Despite how many children including Charlotte I know who have some form of cancer, Childhood cancer is described as RARE - around 1,500 new cases are diagnosed every year in the UK. This means that around one child in 500 will develop some form of cancer by the age of 14 years. The rarity of childhood cancer does impede funding & research. But there is hope for many - more than seven in 10 children diagnosed with cancer can now be cured.

 Types of Cancer

Charlotte has Acute Lymphoblastic Leukaemia the most common childhood cancer. Leukaemia (cancer of the blood) as a whole equates to *31% of child cancer cases, with Brain & Spinal tumours accounting for 25% (around 390 cases per year), its then quite a drop to Lymphomas (cancer starting in the lymphatic system) at 10% (around 160 cases per year).

Britain has the lowest childhood cancer rate in Europe, and one of the lowest of all western industrialized countries. Australia and the US have some of the highest rates. The reasons for this are not clear.

Breakdown by type of cancer

Relative contributions of main diagnostic groups of childhood cancer to overall incidence among children aged 0 to 14 years, Great Britain, 2001 to 2005
Based on data provided by National Registry of Childhood Tumours
(http://www.ccrg.ox.ac.uk/datasets/registrations.htm)

Different types of childhood cancer are most common at different ages.
Some types of cancer – including embryonal tumours (such as neuroblastoma, retinoblastoma and nephroblastoma) and acute lymphoblastic leukaemia (ALL) - occur most commonly in the under-fives. Others, such as bone tumours are very rare in younger children, increasing in incidence with age and peaking in adolescence.

Survival rates

Survival rates for the 12 main diagnostic groups vary between 96 per cent for retinoblastoma and 53 per cent for neuroblastoma. And within these main diagnostic groups, survival rates vary even more. Some rare sub-types of cancer have survival rates of zero.

Although Brain and Spinal tumours rank second in incidence, they rank highest in terms of the number of deaths from cancer in childhood. In the 10 years from 1995 to 2004, 1,115 children died as a result of CNS tumours, just under a third of all childhood cancer deaths. And, yet I’ve read somewhere else that the least is spent on it in research terms?

The Causes?

Despite a wealth of research, much uncertainty remains over the causes of childhood cancers.
Many different factors have been linked with the development of childhood cancer, with varying degrees of certainty.
Research is complicated by the fact that there are many different factors which may cause cancer in children. Exposure to more than one of these factors is probably necessary – and probably at different stages of a child’s life.
The relative rarity of childhood cancers further impedes research.
Leukaemia is better represented in research literature than other forms of cancer because it affects more children, making it easier to obtain meaningful results in epidemiological studies. International collaborations are important as they increase the number of cancer cases available for study.

Treatment

As well as finding new ways to treat those forms of cancer which still have a poor outlook, a major challenge facing doctors today is how to make treatments safer and minimise the risk of treatment-related harm in young patients.
Most children diagnosed with cancer in the UK will immediately be referred to one of 21 hospitals that are specialist centres for treating children’s cancer.
Doctors at the specialist centre will confirm the diagnosis and plan the child’s treatment. Some of the later treatment may be given at the family’s local hospital under the guidance of the specialist centre – this is known as shared care.
There are three main ways of treating cancer:

Solid tumours can be cut out during an operation (surgery)

Cancer cells can be killed with drugs (chemotherapy)

Cancer cells can be killed by radiation (radiotherapy)

Often a combination of these treatments is used.

Clinical trials
Many children have their treatment as part of a clinical research trial.
Trials aim to improve our understanding of the best way to treat childhood cancers – they usually compare the standard treatment with a new or modified version of the standard treatment. Information gathered from successive trials has been one of the most important factors in the increasing survival rates for childhood cancer.
Taking part in a clinical trial is entirely voluntary; the medical team will provide detailed information and you will be given plenty of time to decide whether it is right for your child. Children who do not take part will receive the current standard treatment.

Side effects and complications
Treatments for cancer involve high doses of toxic drugs and/or radiation. These therapies are effective in killing the deadly cancerous cells but unfortunately they can also damage normal, healthy cells, putting the child at risk of harmful side-effects.
Short-term side effects such as hair loss, nausea and anaemia are common but temporary problems. With good supportive care, they can be kept to a minimum.
But some children may experience more serious long-term effects, which persist for months or years after treatment, or ‘late’ effects which do not develop or become apparent until years after treatment ends. The risk of these effects varies from child to child, depending on the treatments used and the age and developmental stage of the child.
A major consideration in the development of new treatments is how to minimise the risk of harmful effects.

CHILDHOOD LEUKAEMIA – FACTS & STATISTICS

Acute Lymphoblastic Leukaemia (ALL)

Charlotte has Common Acute Lymphoblastic Leukaemia. The most common type of leukaemia to affect children is acute lymphoblastic (lymphoid) leukaemia (ALL) (less common are Acute Myeloid, & Chronic Myeloid). This accounts for more than 80 per cent of all cases of childhood leukaemia. ALL is the only form of leukaemia – and one of the few forms of cancer – that is more common in children than in adults. Common ALL is the most common type of childhood ALL, accounting for up to 70 per cent of cases of childhood ALL.  Around 370 new cases of childhood ALL are diagnosed every year in Great Britain.
Incidence varies with age. Risk increases rapidly after birth, peaks around the third or fourth year of life and then declines. More than half of all children diagnosed with ALL are under the age of five years.

Survival
Until the 1960s, childhood leukaemia was incurable. Today, the outlook for young patients diagnosed with ALL is good - the survival rate is approaching 90 per cent.
Of the different types of ALL, children with so-called common ALL have the best prognosis. Within this group, girls fare better than boys.
Survival is highest in children diagnosed between one and four years of age.

Cause?

There is no single factor known to cause acute lymphoblastic leukaemia (ALL). In most cases it is probably due to a combination of different factors.

However, there are a number of things that are known to increase the chances of developing ALL. These are:
Exposure to high levels of radiation
Exposure to some chemicals
Exposure to radiation and dangerous chemicals is extremely rare in the UK today.
Despite early, controversial theories, electro-magnetic radiation, such as that given off by power cables, has not been shown to cause childhood ALL.
A recent study funded by Leukaemia & Lymphoma Research confirmed, for the first time, the existence of cancer stem cells in childhood ALL. The study compared the blood cells of identical twins, one of whom was being treated for leukaemia, the other who is healthy. Our scientists found the same genetically abnormal pre-leukaemic stem cells in their blood. This confirmed theories that childhood ALL develops in the womb.
Research is now underway to identify why and how these pre-leukaemic stem cells are converted into full-blown leukaemia in some children and not others. There is evidence to suggest that the ‘second trigger’ is related to timing and unusual response to infection.
 
Source: Leukaemia & Lymphoma Research

BLOOD CANCERS

Number of people diagnosed in the UK
Disease	Children aged 0-14	Young adults aged 15-24	Adults 25+	All ages
Acute lymphoblastic leukaemia (ALL)	370	90	290	750
Acute myeloid leukaemia (AML)	70	90	2090	2250
Chronic myeloid leukaemia (CML)	-	20	530	550
Chronic lymphocytic leukaemia (CLL)	-	-	3300	3300
Other leukaemias	20	10	670	700
Leukaemia (total)	460	210	6880	7600
Hodgkin lymphoma	70	250	1330	1650
Non-Hodgkin lymphoma	100	80	8820	9000
Other lymphoproliferative disorders			1050	1050
Lymphoma (total)	170	330	11200	11700
Myeloma (total)			3750	3750
Other blood cancers	10	35	-	45
Myelodysplastic syndromes	-	-	2000	2000
Myeloproliferative neoplasms	-	-	3300	3300
Other blood cancers (total)	10	35	5300	5345
All blood cancers (total)	640	575	27130	28345

Source: Yorkshire and Humberside Haematology Research Network

Kids & this thing called Cancer

Chubby cheeks from steroids

During our journey so far I’ve heard and seen a lot of information and facts and met a lot of children & families. So I’ve been thinking for a while that I wanted to put some of this down in writing. I’m sorry if it seems depressing or very sad, it’s a hard subject to write about without it being that because at the end of the day we are talking about a life threatening and in some cases terminal illness. But I will try to lift this feeling as much as I can with what I share. I am going to share some more facts in a seperate entry for those who may be interested.

I am going to focus on children so please forgive me, if you, as an adult are fighting or have fought cancer, or a loved one is, or you have lost a loved one to it. Every life is valuable and precious to God, and loved ones. I lost my own Dad, 6 months before Charlotte’s diagnosis and a month after finding out he was terminally ill, after he had a small brush with it 14 months previous. I frequently read blog entries, bio’s, tweets or Facebook comments of adults and many times am in tears as I feel for the pain & suffering this terrible disease causes.



Hospital visits for chemo, still smiling

Cancer is a terrible disease for everyone, but it is about children that I want to write as this is my biggest experience of it, and many are too young to tell their own story or share their own feelings of it. For me it just seems worse to see children battling with it, being poorly, suffering from treatment and sadly some losing their battle…all at a time when they should just been concerned with enjoying life, learning, developing and laughing…after all you only get one childhood. Don’t get me wrong children are amazingly resilient and they keep on doing all or most of those things when they can, and with a smile on their face, but also a large chunk of their time is taken up with hospital, drugs, procedures, surgery, chemo, radiotherapy and the list goes on. It can have a massive impact on their confidence at different ages for different reasons. At the end of the day no matter how brave we are, how we keep going for their sake, or keep positive…it is awful to see your child and other children going through it. You can watch a clip on the local news or a documentary about it, and you think it’s bad, but until you’re actually in that world yourself you don’t realise the full impact of cancer on a child.


In the pushchair as legs weak from steroids & dealing with hair loss

What has struck me about cancer over the last nine months during our hospital visits and stays, is that Cancer, knows no bounds, it has no regard for age, colour, race, sex, health, family situation or history…and the list could go on and on. I wanted to share some of the situations I’ve come across where my heart has gone out to a family even more because of particular circumstances.

When Charlotte was first diagnosed we shared a room for a week with a little 2 ½ year old boy and his Dad. They are a Somalian family who had just welcomed the arrival of a new baby girl, when two weeks later their son was diagnosed with the same Leukaemia as Charlotte, but was fighting for his life in Intensive Care as his enlarged lymph nodes had restricted his airways, and there was concern he’d been starved of oxygen. To make matters worse, his Mum didn’t understand or speak English and while she looked after their newborn daughter, Dad had stay with him and care for him, something in his culture he was not used to at all. Although he spoke reasonable English, I observed at times the difficulties the staff had in impressing upon Dad the importance of all the aspects involved with a child on treatment. It also turned out their son has undiagnosed neurological problems, as he had just been at home with his Mum, but because of his cancer these came to light sooner than they would have and are now being addressed. If the family had still been in Somalia the father told me, his son would be dead now. They knew nothing of Leukaemia and in poor conditions his son probably would have died as a result of the particular complications he had.

Poorly in hospital with infection

I’ve met babies who within days or weeks have been found to have brain and liver tumours, I can’t imagine the joy of having a baby to find out so soon that they had such a devastating and even fatal type of cancer. You’d think it can’t be possible for a newborn baby to develop cancer?? I’ve met and heard of children born with neurological conditions or disabilities whose life already poses so many challenges for both them and their parents and then they are struck down with cancer, and you think, how can that be fair? A child with a tumour wrapped round her Aorta near her heart….the list goes on and on, and I’m sure that anyone reading this will probably know or know of a child who for one reason or another has a heart-rending story to tell.

So for me, having seen or heard of these children, goes to prove that nearly always (but not always) there is some worse off than yourself. Compared to these children I almost forget Charlotte has Cancer, I feel like she has this bad illness, she has to have this horrible treatment for just over 2 years, then she’ll be fine. I feel we’re lucky, and yet, during those first few days as I first got to know parents on the children’s oncology ward they had sympathy for me as a single parent and felt lucky that their treatment was for 6 months and not 26 months as Charlotte’s is, so it just goes to show that people see everyone else’s situation in a different way. It makes me think that it’s almost as if we have this inbuilt mechanism of recognising others situation as being worse in some aspects, maybe it’s a way of making us see positives, I don’t know.   

One of Charlotte's weekly blood tests

When you’re first told your child has cancer your first thought is, I can’t lose them, and it’s hard to describe the physical feeling that accompanies that thought. Then you have to start taking in the facts, the prognosis, the treatment, then with the Dr’s guidance you focus on the positives. After just the first few days, despite being devastated that Charlotte had Leukaemia I found myself feeling so relieved that if she had to have cancer she had the most common with the highest cure rates, I felt lucky, I thanked God. But, at the same time it was very scary to think that it could just as well have been Charlotte who had one of the other cancers like some of the children had that we met.  

I'm not writing this with the intention of depressing you, cause upset or to gain any sympathy. I'm writing as I want to raise awareness. Childhood Cancer is RARE, around 1,500 new cases are diagnosed every year in the UK. This means that around one child in 500 will develop some form of cancer by the age of 14 years. But there is hope for many - more than seven in 10 children diagnosed with cancer can now be cured. But, because its rare its not always the priority when it comes to research or drugs companies, some are very poorly funded.  For example prostate cancer is one of the most common cancers in the UK. Each year around 37,000 men are diagnosed with the disease, and it claims more than 10,000 lives – making it one of Cancer Research's top priorities. With those numbers you can understand why, and that sheds some light on the difficulties in funding & getting new treatments in the UK for some of the most fatal childhood cancers such as brain tumours & Neuroblastoma and families are raising £100,000 or £500,000 to give their child hope with treatment in the USA. More needs to be done for our children!  

Still smiling!!