My 2011 testimony given at Church on 1/1/12

19 months ago in May 2010 I was baptised & gave my testimony. I talked about the changes in my life that had happened since having Charlotte and how I’d seen God at work through those changes, like when he prunes a vine back. I remember saying that following the loss of my job and home I felt lost, but, through understanding the situation and working through it, and also God speaking to me about working with those in need in our community that although I didn’t know what the future held, I felt on the edge of something exciting…..

But I have to be honest and say that losing my Dad suddenly 6 months later & Charlotte being ill on & off for the next 6 months is certainly not what I had in mind when I said exciting.

& yet  here I am, excited about sharing with you and saying  that 2011 was an exciting year when I think about my faith, my spiritual growth & how God has answered prayer & there’s so much I could share but don’t want to go on for too long! lol
Many were there when a GP friend & I spoke at the Church meeting in March, when we truly believed & praised God that he had healed Charlotte of Leukaemia after her illness in January. A couple of weeks later I went on my own to Green Pastures Christian retreat centre for 3 days, to rest, to be quiet & spend time praying and reading my bible, seeking some strength & peace about everything that had happened. On the 2^nd evening after the prayer meeting the duty leader spoke to me and asked if I would like her to pray for me & said that whilst we we’re in the chapel God told her she needed to pray for me.  I accepted her offer and she put her hand on my shoulder & prayed. I was just blown away that God had touched me like that through her, it reassured me at a time I needed it that I was on the right track & he was there with me & lifted me so much.
Charlotte was diagnosed with Leukaemia on 19^th May & I’m sure many like me were shocked & confused having believed she’d been healed. Medically what happened was very unusual, but I believe God was at work in the situation and knew that it was too soon after Dad’s death for me & the family to cope with the effects of a diagnosis at that time & all that that brings. However by May when she was diagnosed, following my experience at Green Pastures I was so much stronger and gained more strength from so many verses that people gave to me during those first few weeks following her diagnosis, especially in hospital. Charlotte’s illness has allowed me to speak about my faith so many times to many people and I don’t know how I would have coped without God by my side. He has answered our prayers as Charlotte has stayed on the base level of chemo treatment and bone marrow tests have always had positive results, she has continued to gain weight without a nasal feeding tube which a lot of children have to have & despite a low or non-existent immune system at times & being at school she has remained well on the whole for the last 5 months, with only 1 night in hospital. Charlotte has grown in confidence & is very mature & independent when it comes to her treatment. She is due to start her 2^nd intensive 8 week phase of treatment on Friday, it having been delayed a week as her blood counts were too low following a virus over Christmas. Then she goes onto Maintenance chemo, which is basically oral chemo at home every day, with monthly visits to the hospital for an IV chemo drug, this goes on for the remaining 73 weeks of her treatment & it won’t be until after 5 years that she would be given the all clear…but I have no doubt at all in my mind that she will be fine. It’s a situation that makes you count your blessings as I’ve met children who don’t have a good prognosis and don’t know how parents cope in that situation without a faith.
In September we met another challenge which would lead to some worry & hard work when our landlords informed us they were selling our home & we would have to move.  I really wanted to stay in West Moors, for Charlotte’s school & our family & friends. After checking the private rental market I felt pretty despondent about where and what we were going to be moving to. Most properties were out of our budget or not very suitable and so although still praying I thought we would end up relying on the council to house us on the day we had to move out of our old home.  When we’d moved 2 years earlier our prayers were answered amazingly when a bungalow suddenly became available across the road from our old house at exactly the right time. I have to admit that although I was praying I was almost thinking God pulled something off last time but I can’t dare hope he’ll do it again, it would be asking too much. Then out of the blue a lady from a local Leukaemia charity contacted me on Facebook, she had seen from comments on there about having to move. She invited us to view a 3 bed chalet bungalow and I thought this can’t be right, I even went back to the lady & checked she did realise that we wanted to rent & she confirmed she did. I was puzzled as I knew the rent would be out of our budget but thought, she knows that, so began thinking, what if it happens, it would be unbelievable, it was almost like God had provided so amazingly for us last time, he couldn’t surpass that surely! I went along & met them at the property & I looked round, although I didn’t need to, I was just waiting for what they were going to say. They told me what the rent would be, which as I thought was out of our budget, & then she went on to say that the Charity would support us guaranteed for the next 12 months and then review. I was blown away; it was almost too much to take in. I came away for a few hours to think & pray and knew it was just right and our prayers had been answered, far & above our needs or what I hoped for.
Finally as if enough hadn’t happened this year, my other sister Nicola got back in touch in November after stopping contact with the family 4 years ago. She’s come back with news that she, her husband & my 14 year old niece have all been born again, they’ve changed so much. Praise the Lord!  You know a lot of people criticise Facebook & social media, but through my diary on there during Charlotte’s illness my sister was not only able to catch up on what happened but also on my journey with my faith, which has contributed to a new relationship with her, not just as sisters, but Sisters in Christ.
So in some respects I was right when I said I felt I was on the edge of something exciting in my life, but do you know that what I’ve learnt is that as Christians we are actually all always on the edge of something exciting…as God knows the plans he has for us, even if we don’t.
I then shared the following verse: Ephesians 3:20

Charlotte's Blood Transfusion Investigation

Blood Situation

I've been wanting to get this down on the blog for ages but there's been so much going on like hospital stays I've just not had chance. Firstly I apologise of you're from the medical profession or highly knowledgeable about blood and this entry isn't 100% medically correct, but I'm explaining this situation from how I understand it from what I've been told by Consultants & Haematologists. Back in late February Charlotte's Consultant at Poole had to discuss with me something they had found in Charlotte's blood. Whilst I was waiting for him to explain my heart stopped, I wondered what he was going to say, I was thinking some complication of Leukaemia that I didn't know about. He then went on to explain that when Charlotte was first diagnosed her blood was typed as Rhesus Negative, but when they typed it again in January in case she needed a transfusion it was now Rhesus Negative - D with red cell antibodies. At first the only thing this meant to me was I know from my Mum that you have to be careful in childbirth. Now things have progressed, I have had a meeting with Charlotte's Oncology Consultant at Southampton and learnt a lot more.

It transpires that realistically the only way Charlotte's blood could have developed antibodies were if her negative blood was exposed to positive blood. Unknown to me, for a couple of weeks before I was told the news, Poole Hospital & the transfusion service have been in a mad panic checking their records of the transfusions Charlotte had at Poole & Southampton in May & June last year following her diagnosis & the start of her intensive chemo. They assure me she was given negative blood and advised that if their records said it was negative blood she was given the systems in place would not allow the 'wrong' bag of blood to be picked up & given to Charlotte.

However, its unheard of for these antibodies to have occurred naturally so their only thought is that somewhere something has gone wrong. The Haematologist explained that when someone is negative for example, there are degrees of negative, so if someone went to register as a donor and they were typed as a 'weak' negative they wouldn't be accepted. So the only assumption they can make at this point is that something was wrong with one of the four transfusions Charlotte had. Apparently Charlotte is the talk of transfusion services & there is a full investigation underway to find the cause, because not only is there implications for Charlotte, there could be for other people in the South West who've received that blood. I am told that the donors are being recalled and blood taken, and this is now going through rigorous testing to check the type again but also, checking that one of their blood doesn't contain a tiny amount of antibodies that were missed the first time round.

The other strange aspect is that her blood was typed in October 2011 as well and at that point didn't have the antibodies. So now they're more puzzled, and apparently in medical terms makes the case more interesting that if an error was made it took Charlotte's blood that long to develop the antibodies after the exposure took place. This delay in antibodies incurring has started them also thinking about whether they've found something as rare as 'hens teeth' (their words) and this is a natural occurrence, in which case I've been told her 'case' will be become known and used globally in haematology.

Me, I'd much rather we could have just had plain & straightforward and not another 'aspect to deal with. With regards to the implications for Charlotte, initially it means that should she need any further transfusions it will take longer to arrange as it will not be as easy to get supply of an exact match. Hopefully with the stage of treatment she's at this won't be a situation we have to deal with. I was however, concerned that for example if she had a serious accident what would happen, and I was assured her life would be saved by giving her any blood, but then she would need to be transfused correctly as soon as possible? I shocked my Consultant by asking him about the implications should she be in the position of needing a bone marrow transplant, he said he didn't expect me to ask that as he doesn't believe we'll ever get to that point. But I explained as much as I don't think about the 'what ifs' the facts are that they don't cure 100% of children, so there's a tiny chance she could, he explained that it would be a factor in the matching but not a problem, and in fact sometimes transplants take place where there isn't a match? Apart from that, the other implication for Charlotte is if she has children in later life. If the father of the child she was carrying has positive blood her child could be also, and they have to be careful as her blood crossing to the baby can be lethal, so they use injections and other precautions, but we're years off of that yet, so we'll deal with that later when Charlotte is old enough to need to know about havng a baby! lol

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