2012 what a year!

Well I'm writing this post on 1st January 2013....the year that Charlotte is due to finish her 112 weeks of chemo treatment! I started the year with a little girl with no hair, and have finished with the same girl with a head of really wavy hair, nothing like it was before treatment!

2012 has been another tough year for us, a full 12 months of treatment, lots of illnesses & problems for Charlotte, but also so many amazing experiences, happy times & special memories. For me personally its been a time where I've been learning a lot about myself and what my coping mechanism's have been in life, and how these do & don't work. 

As far as Charlotte's treatment is concerned in 2012 on 29th February she moved from the first blocks of treatment (alternate intensive & interim blocks) into the final phase, called maintenance which actually lasts for 17 months until the end of her treatment, at the end of July 2013. During 2012 she has had: 7 General Anaesthetics,  7 Chemo via lumbar puncture, 2 bone marrow biopsy's, 1 chemo injection in thigh muscle, 3 doses of IV chemo Doxorubicin (causing hair loss & sickness), 1 dose of IV chemo Cyclophosamide (causes bladder irritation, sickness, hair loss), 8 doses of IV chemo Cytarabine (causes tiredness, temperature, nausea), 16 doses of IV Vincristine (causes nerve pain, leg pain, fatigue),  14 x 5 day courses of high dose steroid Dexamethasone (causes increased appetite, mood swings, trouble sleeping, muscle weakness), and for a large part of the time since 29/2 daily oral chemo Mercaptopurine (causes tiredness), and a once weekly oral chemo Methotrexate (tiredness & nausea). All of these chemo drugs suppress Charlotte's blood counts and in particular her white cells which include neutrophils which fight infection. Whenever her neutrophil count falls below 0.6 her oral chemo has been stopped. She also had to take antibiotics every weekend twice a day to protect her against pneumonia type infections. However Charlotte has suffered a rare side effect that this drug itself has suppressed her white cell count which has meant she has only tolerated low or no doses of oral chemo for most of the time since February. Therefore, she has just changed to a different antibiotic drug and we are hoping this will improve her counts for the remainder of her treatment.

We were led to expect that once we moved into the maintenance phase of treatment things would be easier, but it hasn't really turned out like this. Charlotte has been admitted to hospital at least 15 times this year, mainly for infections or complications from her treatment, including an infection around the site of her central, shingles, many respiratory tract infections and even managed a fall downstairs breaking her arm! She's had MRI scans of her brain & back, both which thankfully confirmed no spread of cancer following back pain & headache, she amazed us all by laying still & unsedated for these, making me so proud of her! She has become more poorly after her four weekly chemo & steroids and we are currently working with the hospital to manage these side effects for her and help me manage.



Princess Charlotte in London

We've had breaks away at Center Parcs thanks to Leaf & Poole & District Children's Cancer Fund, a lovely holiday in Devon thanks to Oakley Waterman Caravan Foundation, an amazing Princess weekend in London thanks to Believe in Magic and so many, many more gifts & treats from so many charities & individuals.

On a day trip to Legoland

We have moved house yet again after 13 months in our last lovely home thanks to the support of Leaf, but are now in Council emergency housing awaiting a permanent home with them. This will mean we don't have to keep moving as can happen in the private rental market, and also takes the pressure off financially when I eventually seek to return to work. It means we can get into somewhere permanent that we can make our home.

Summer & a house move

Charlotte having fun on holiday

Well I've not written anything for a couple of months, mainly due to the school holidays. Charlotte enjoyed a lovely 5th Birthday Party in July and we had a good weeks holiday in Devon in early August. Sadly she was ill for 3 weeks of the holidays, including her first real brush with potential pneumonia, when crackling was heard & a chest x-ray was described as 'busy' on the bottom of her right lung. Thankfully despite being re-admitted a week later, the 2 week course of antibiotics she had cleared it up successfully.
So finally after staying well for a couple of weeks her count started to climb and she re-started oral chemo. She's been back on it 3 weeks now, and its quite a while since she's achieved that! She's now fighting a cold, but so far pretty successfully. She had her latest chemo via lumbar puncture at Southampton Hospital on Friday. She has been suffering with bad sickness after anaesthetic in recent months so they decided to try a different IV anti-sickness & relaxant. It was put on a drip over 30 minutes but in less than 10 Charlotte started to react badly to it and was sick, pale, sweating & a little low on oxygen levels. Thankfully by stopping the infusion straight away that settled but she was out of it for a while. Anyway they tried a different anaesthetic and she wasn't sick afterwards, so hopefully when they just do that next time we may have found a solution to make the LP days a little less unpleasant for her.
We have a testing few weeks & months ahead of us as we plan to move out of our current home in early November. The charity Leaf have been and continue to be an amazing support in our current home but I feel its important that we try to find somewhere permanent & long term for us, as we really don't know for sure what the future holds for Charlotte or if and when I could return to work. So I feel to get a secure home at least gives us a firm base for dealing with whatever else we may have to. To do that & because of the way the private rental market is, we are most likely going to have to rely on the local council to house us. This obviously doesn't give us the same choices as if renting privately but it helps manage costs and it will be more secure in the long run (as we found out when our last home was put up for sale by the landlord).

Treatment problems & peoples kindness

The phase of treatment Charlotte started at the end of February is called 'Maintenance', and actually lasts till the end of her treatment in August 2013. The idea in the first few weeks & months is to establish a level of the daily & weekly oral chemo drugs that do their job as far as the Leukaemia is concerned but at a level that leaves her with some immunity. This is usually done by building up to a maximum dose but if necessary reducing to short of that if that's what Charlotte's body tolerates. Unfortunately we haven't been able to do this yet with Charlotte after more than 4 months, because it does suppress her immunity, she has become unwell several times, after each time she's ill her neutraphil (immunity) count is nearly wiped out completely, so her chemo is stopped. We wait for it to build back to a certain level, then re-start the chemo, then she's ill...and the viscous circle continues. She's missed more weeks of chemo than she's actually had chemo. The Consultants have started to question whether something is wrong, which is obviously is a bit of a worry when they start to think like that. But so far Charlotte's chemo, tests & bone marrow have done what they're supposed to, her last bone marrow biopsy in April showed her still in remission so for now its being put down to bad luck.

Last Friday Charlotte had her latest chemo via lumbar puncture at Southampton. She has to stay led down flat for an hour after the drug has been put in, of which the first half of that she's normally still asleep from the General Anaesthetic. She has to be starved from the night before, so usually children are ravenous when they wake, and Charlotte was for the first dozen procedures. However, she then realised that when the GA drug goes in her IV line, she can taste it in her throat, and she doesn't like the taste. So now she feels sick at the thought of what is coming, and when she wakes afterwards she still feels sick, won't eat & eventually is sick a few times. This has happened about the last 10 times now, and turns what should be a short morning at the hospital into a day long ordeal. If we leave the hospital too early she's sick in the car on the way home, which is a 25 mile journey on motorway & dual carriageway. So last week we tried something new. She was given a particular sedative beforehand, this made her forget about feeling sick and at first seem to have worked as she was talkative when she woke & ate a little. However, after a couple of hours she was sick at the hospital & then sick twice more in the car on the way home. So apart from making it better for her before she went in, it just delayed the inevitable. She soon picks up the next day though, and she tucked into a Full English Breakfast at Sainsbury's the next morning.

Whilst we were at Southampton we noticed that the exit site of Charlotte's central line looked sore, they decided to give her some antibiotics to bring home, only to change their mind 2 hours later and said "lets see what happens"...what happened was we ended up at Poole Hospital for 4.5 hours Saturday night to get the problem looked at again, to have it confirmed that it did need treatment. After a dose of IV antibiotics we came home with a 7 day course of another antibiotic and had to go back Sunday evening for it to be re-checked and another dose of IV, plus an extra trip to oncology clinic Wednesday at Poole for our consultant to check it. The redness & discharge has gone but there is still a swelling just above the exit wound, so we have to keep an eye on that and check it settles. The staff really annoyed me at Poole Saturday night making comments that Charlotte was very well & had no temperature, I heard a nurse say this on the phone, and then add, "although to be fair, she does have a painful swelling". It really annoyed me, I don't go to the hospital unless we have to, and in fact our consultant says the slightest concern I take her in, even if she's got no temperature. When she came in the room, I advised her that Charlotte was actually admitted with a very nasty infection of her line site in April, she had no temperature, was very well in herself & the bloods didn't even show any sign of infection....you only knew by looking at it!

Charlotte fundraising activity has been in the paper a number of times, which led to a local business JB Precious Metals raising funds from a Gold Buying Event and presenting those to Charlotte, along with the gift of a new bike from the owners personally. I explained to them at the outset that we weren't raising funds for us but to give something back to Charity to help children with cancer. They insisted they didn't want to give to the Charity, they wanted to support Charlotte personally. I was blown away by their kindness it is a wonderful gesture they have made and will make a real difference to us.

Halfway there, online friends & why pray?

Its been quite a while since I've actually written anything on here about Charlotte, her treatment and her journey. The main reason has been that since the 3rd week of March we've been in & out of hospital so many times with infections & illnesses, and Charlotte even broke her arm in the middle of it all as well. Its been totally stressful at times & certainly exhausting. We have managed a couple of spells of 3 weeks home, which were so good to get.

But now we're in week 56 of treatment, 13 months & 1 week after diagnosis, and now a month before Charlotte's 5th Birthday. This week is exactly halfway in Charlotte's 112 week chemo schedule. The 2nd half is a lot easier than the 1st in that the drugs are not as harsh side effect wise, and all being well (which it hasn't yet!), we should only visit hospital fortnightly, although bloods are still being checked every week. She should be having oral chemo daily with a 2nd oral chemo drug once a week. So far she's only managed to have these less than half of the weeks as her neutraphil (immunity) count has been too low. If its too low her drugs are stopped to allow her bone marrow to pick up again. Unfortunately the chemo kills good cells as well as bad. Her hair is growing back lovely now, to the point of needing a proper shampoo, to which she screamed the house down the first time, but it had been 9 months since she had hair, and thats a long time in Charlotte's life at her age. I asked whilst we were in hospital on one occassion about the future and the 'relapse' question. Our Consultant said its very rare to relapse at this stage of treatment now, but its a long road ahead before we have the all clear. Recently on Twitter someone I met prayed for Charlotte while we we're both online. She asked me about healing and I explained that I believe she'll be healed but the Dr's will just carry on treatment until the end, and we only know its worked if she doesn't relapse. This lady, who I won't name prayed for Charlotte to be healed, and as she did she said tears were rolling down her face and she had this immense feeling that Charlotte has already been healed. I was blown away, and will never forget that moment.

I've been undergoing ton's of tests and at one point my GP thought I may have Lupus. I'm glad to say that I haven't, but am now faced with further tests & Consultants to get to the cause of the problems. I have low iron & ferritin levels in my blood, altho am not anaemic, I also have a high ESR, which is an indication of inflammation, and shouldn't be at the level it is in someone of my age...but we don't know where, these things may or may not be linked. But I've had a colonscopy & MRI of my bowel to rule out anything wrong in my digestive system, so think its now down to Rheumatology? To be honest I just want to be 100% well again & have the energy I'm used to having. When we had a 3 week period of 2 x 5 day hospital stays, daily hospital visits every day except one and a fall downstairs resulting in a broken arm for Charlotte, I was completely exhausted and really struggling. Thankfully we had a couple of better weeks & I could pick up again before the next admission!

During the last couple of months I have been overwhelmed by everyones support for our fundraising, have met some wonderful people on Twitter & Facebook. Charlotte's been in the Bournemouth Echo a number of times recently and one business even got in touch and want to give something to Charlotte (even tho thats not what we're fundraising for).

I've missed so much of Church & house group being in hospital, and yet I've now met so many other Christians online and have been able to share so much and receive so much encouragement. I've started a Prayer Ministry on Facebook called Pray for Kids with Cancer UK. As I've found more & more children with cancer on FB in the last few months something struck me about the difference between the UK & the USA. Many parents have a FB page for their child, I noticed that a high % of the USA ones were called "Pray for Jo" etc, whereas in the UK its "Jo's Journey" or "Help Jo" & it gives the impression that the Americans are more religious than us in the UK. I accept its impossible to really know what someones beliefs are but I could see Uk people asking at time for prayers, vibes etc for their child. So I decided to set up this page and proactively tell people I'm praying for particular children and ask for people to also pray with me. The page now has 55 likes and has regular comments, with 2 families asking for prayers for their child. It is so encouraging and I pray that this will continue and touch peoples lives in a way that they become aware of God being there with them. Children suffering is always one of the hardest issues when you come to faith, my heart has felt so sad so many times recently as children have lost their fight, and I think about the fact that God knew their life from before they were conceived to their last breath, so that must be what he had planned for them, to be here just such a short time & go through so much...as I say, the hardest question to answer, but then I see children who although they weren't here for long have inspired so many peope in so many different ways.

Charlotte's diagnosis has completely changed the course of my life, it's made me cut the last ties with my old life as a non-believer, its enabled me to share my faith in way I wouldn't have done before and strengthened it....and now new doors are opening.

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