The future: Fundraising & Charities

A lot of my time the last two weeks has been taken up by fundraising linked activities. I set up our facebook page about a month ago, after just running a personal one previously. One day I saw CLIC Sargent advertise a Skydive Challenge which was local for us, so I casually 'shared' it on FB & asked " I don't suppose one of our friends would be brave enough to do this for CLIC Sargent to raise funds on Charlotte's behalf"...within an hour I'd got my first volunteer, my niece's boyfriend. He was quite quickly joined by my Niece who decided she should be there to hold his hand. So I went ahead and posted it as an event on our FB page, which by now had a growing number of supporters & thought I'd just get a little mention in Charlotte's school newsletter. I've been blown away by peoples response, we're currently up to 17 people in Team Charlotte, with more thinking about it. Once we've got a lot of the registration forms in CLIC are going to get the Echo involved in covering the story of how people have rallied round to support CLIC on behalf of Charlotte. I decided therefore to see what other events CLIC were organising & just 'posted' these as Events on our FB page, we now have 4 people trekking to Kilimanjaro in Feb 2013, & one considering Cycling in India the same month. CLIC have so many events organised it makes it easy for me to get involved without the massive amount of organising these events, which would be difficult to balance as a single parent with Charlotte on treatment, so for now this is how & where I'll concentrate my efforts.

I've been inspired by a lady called Natasha Jones who found Leaf ~ Leukaemia Education & Fundraising. Leaf was founded from a hospital bed in 2006 after Natasha Jones from Wimborne was diagnosed with Leukaemia just 3 weeks after giving birth to her son. Natasha wants to bring something positive out of her experience by helping other blood cancer patients in Dorset. Leaf whilst set up to help adults have been an amazing support to Charlotte and I and what strikes me so much about Leaf is that its local & its personal. If a patients needs support they get to know them & see what they can do to really help & make a difference, whether its help with transport costs, a cleaner to come in a do the housework, health club memberships for recently discharged patients and the list goes on. But they also support training etc for local nurses and the Dorset Cancer Centre and make donations to Leukaemia & Lymphoma Research, which is really valuable.

Because of my faith I believe God has been & will continue to use Charlotte's illness in some way, through her and I. Alongside this I can relate to Natasha in that I want to use our experience in a way that something really positive comes out of it along with Charlotte's return to full health of course. 

If you'd like to donate funds to Charlotte's CLIC Sargent Fund or one of the 'teams' doing an event or for my slim for Leaf funds you can do by visiting:

Charlotte's fund http://www.bmycharity.com/charlottejackson2012
Team Charlotte Skydive Team: http://www.bmycharity.com/teamcharlotteskydive
Team Charlotte Kilimanjaro Trek: http://www.bmycharity.com/teamcharlottekilitrek

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