History

Thursday, December 4, 2008 5:00 AM CST

Today I found this report on a new piece of research which Leukaemia Research is funding. It is to do with mercaptopurine, which all those who have children with ALL will recognise! Rachel used to call it her pink medicine ...:

This is a continuation of LR funding looking at how children respond to drugs given to them in national clinical trials for ALL. Leukaemia Research has been supporting Dr Lennard’s research into TMPT and 6-MP metabolites since 1996. The results will be used in future trials for childhood cancer.

6-Mercaptopurine (6-MP) is a drug commonly used in maintenance therapy for childhood ALL. It is given to children for a period of between 2-3 years to prevent the leukaemia from returning. Attempts to shorten this period have been unsuccessful and result in higher rates of relapse. This on going study has been investigating how this drug works to control the cancer at an individual level, by looking at how enzymes metabolise the drug.

In the late 1980’s Dr Lennard and team discovered that an enzyme in the liver called thiopurine methyltransferase (TPMT) regulates the metabolism of 6-MP. When the drug is absorbed by the body enzymes break it down into several different components: harmless molecules called methylmetabolites and cancer killing molecules called thioguianine nucleotides. TPMT is responsible for controlling how much of the drug is transformed into cancer killing agents.

Summary

· 6-MP is a drug currently used in maintenance therapy for children with ALL
· Dr Lennard discovered that an enzyme called TMPT is responsible for metabolising this drug
· Children respond differently to the same dosage of 6-MP due to variations in the activity of this enzyme
· “TMPT status” is controlled by common genes, which are inherited.
· This project aims to develop a way of screening individuals for their “TMPT status” so that clinicians are able to tailor 6-MP dosage to suit the individual child.

Now, interestingly, Leukaemia Research have just also agreed to fund an equivalent project in Manchester on PegAsparaginase - that is the extremely painful intra-muscular chemo that, frankly, was the most distressing for Rachel and many of the younger children, because it is a big needle into the big muscle on the thigh, and not only does that look horrific, apparently when the chemo is injected through it is very painful. The little ones soon get the hang of it and start to scream way before they go into the treatment room because they know what's coming, so you end up needing 2 people to hold them down and one to inject. Awful. So if they would reduce this one, it would take away a lot of pain and tears.

Research takes many, many years, and millions and millions of pounds. THANK YOU to everyone who has supported Leukaemia Research in their relentless work.

Sunday, November 23, 2008 12:44 AM CST

Hello it's Rachel here. This is the first time I'm writing in my journal. Did you see the snow today? I did. I made a snowball and so did my sister she even threw one at me.and guess what I fell down the stairs this morning And I got a big scrape down my arm.

OK Rachel's had enough now so I'll finish off! She did indeed tumble all the way down the stairs but happily bounced beautifully! Clinic on Wednesday, but she is so well that I'm sure we'll be in and out in no time. Nothing else to report, things getting very busy here as suddenly November is running out and Christmas isn't very far away!

Thursday, November 13, 2008 2:27 PM CST

All well here, nothing much to report other than that BBC were filming at the girls' school yesterday - Austin and Erin were dancing for them! What excitement! So have a look at Strictly Come Dancing on Saturday night, you might just catch a teeny glimpse of the girls with their school friends!

Wednesday, October 29, 2008 6:59 AM CDT

Just back from a laughter-filled weekend at Center Parcs for half term. Rachel had her MMR the day before we left and wasn't feeling quite right but she didn't let that get in the way! 3 parties this week, more friends visiting at the weekend, the girls are having a whale of a time! Rachel has a few appointments looming, namely hearing test, 3rd appointment with paed neurologist and heart scan, all following up side effects of treatment. But so long as that pesky L word doesn't re-appear, none of that is particularly an issue and we're unspeakably grateful.

Friday, October 17, 2008 2:27 PM CDT

An eventful week with our GMTV appearance and participation in Beefy's latest walk for Leukaemia Research! See photo update, and maybe even the GMTV clip is still on the website if you missed it. What an exciting experience, one we will all remember for a very long time.

Thursday, October 9, 2008 5:47 AM CDT

Hello everyone - sorry the updates are not as frequent these days, but clearly it is a good thing. We are all fine, and looking forward to walking with Beefy next week in Stratford - for those of you who have sponsored us, THANK YOU XX and for those of you who haven't, please help us in our quest to find a cure for this dreaded disease if you possibly can - www.justgiving.org/walkingwithbeefy

Leukaemia Research have never had to turn down a request for funding that they wanted to grant. However, last year, they granted Ł8 million more than they were able to raise, and clearly that cannot continue. For example, they have been working on - ie funding - the MRD test for 20 years now, finally reaching clinical trial in 2003, on the treatment trial that Rachel and all other ALL children in the UK are currently being treated under. It is that test that showed that Rachel was high risk, and her treatment was intensified as a result. The MRD test is proving to be so accurate that its use is being extended to adults now, and the second phase of these clinical trials has just been approved ( at a huge cost). Stem cell research - again, vast amounts of money are being poured in, because there is still such high mortality rate from this last resort procedure (bone marrow/stem cell transplant) - a procedure which all those who relapse potentially face.

Anyway enough of all that - if you can't sponsor us, maybe just switch on GMTV tomorrow morning (Fri) instead..... 6.45 and 8.10am apparently .....!!

Friday, September 5, 2008 11:59 AM CDT

Apologies for not updating a bit sooner but things have been manic here. We have a new au pair, Helene, who is gorgeous but very homesick and anxious because her English is worse than my French. Which is not great. So, we'll see how she gets on - the girls like her, but the main thing is that she is quite happy to walk the nutty dog if I can't manage!

We had a great holiday, everyone couldn't believe how well Rachel looked, especially given that it is 2 years since some of our group had seen her. You can imagine the difference, her weight, her wig ....different child.

Anyway we saw the neurosurgeon today, we are still awaiting an appointment for the neurological assessment. No big deal, she did well in her sats ( achieved a level 3 despite these ongoing issues) so I'm not worried, I just want it pinned down and put to bed. We did have a big blip on holiday when a massive bruise appeared on Rachel's thigh. It is still there, still blue but faded, 10 days on. I am not panicky enough to take her in for a blood test now, but I will get a blood test done at next clinic. Paul and I had a few sleepless nights on holiday over that one.

Will get some photos updated over the weekend.

Wednesday, August 13, 2008 3:54 PM CDT

Clinic today - was mayhem! all well for now, we are on 8 weekly appointments now which is great. In relapse terms, the longer it doesn't come back, the better, so I am very much breathing a sigh of relief that Rachel has ticked off the first year successfully. I met some mums at clinic today who - although I should be the ones giving THEM support, being a bit further down the line - were really supportive. Thank you to Anita and Catherine, and apologies to Catherine....!! I'll be in touch.

We are off on holiday this weekend, can't wait. Away from all the things that put stress into our family lives. Can't beat it.

Just a litle postscript, if any of you read this - Helen W, Pauline and Anne and Alan - you are in my thoughts constantly at the moment xxxx

Sunday, August 3, 2008 4:41 PM CDT

Holiday season now - the girls had a great time in Norfolk for a few days with Granny and Poppa, they were desperate to stay a bit longer especially once their cousins arrived but unfortunately this year that wasn't on the cards...maybe next year! But they're not going short, far from it - we're off to Scotland tomorrow for the week, back for a week and then Corsica for 2 weeks - by the second week there will be about 20 of us together, it'll be mad!

Since I missed Rachel's hospital appointment last week, she's booked in for August 13th. We'll move onto either 6 or 8 week appointments now, being a year since she stopped treatment. I wonder if this is how it will always be, just being thankful that all is well for now. But I have to tell you that it feels wonderful - Rachel is on such good form it makes you feel elated, we are so so lucky to have her. 2 such wonderful, adorable girls, we really are the luckiest parents in the world.

Friday, August 1, 2008 1:15 PM CDT

Ooh, Rachel is on the front page of the Leukaemia Research website this week! V exciting(well, we think so anyway...) have a look! www.lrf.org.uk

Sunday, July 20, 2008 2:13 PM CDT

Nothing much to report, so I thought I'd take the opportunity to educate you a bit about bone marrow transplants. Or stem cell transplants ( bone marrow cells are stem cells, stem cells come in various guises). You may have seen a chap called Adrian Sudbury on the news about a month ago - his bone marrow transplant has failed, and there is nothing more that can be done for him. He is spending his last days petitioning to get the issue of blood, organ and bone marrow donation into the 6th form national curriculum because basically most people in this country who have stem cell transplants are recipients of donor cells from USA or continental europe (mostly Belgium). There are 2 registers in the UK, held by the National Blood Service and Anthony Nolan Trust, and they are both inadequate to meet the needs of those needing BMTs in the UK.

So - firstly, Adrian's petiton can be found via the link on the bottom of the page - please have a look, and sign up. Secondly, his moving blog can be found if you google 'Baldy's Blog' and thirdly, he has just won an award for the essay on Graft vs Host Disease (which affects all bone marrow/stem cell and organ transplant recipients) which I have posted here today - Adrian has given me the all clear to use anything he has written on his blog if it helps 'the cause' .Finally, Leukaemia Research devotes a lot of funding to stem cell (bone marrow) transplants. It is a hideous procedure, but is the treatment of last resort when all else has failed. It is, however, a procedure which saves many lives that would otherwise have been lost, and more research is urgently needed it improve the success rates.

Adrian's GvHD essay:

The dark side of bone marrow transplants
By Adrian Sudbury

I should be dead.

Twelve months ago cancer in my bone marrow came within a fortnight of killing me.
Chemotherapy failed and I had no choice but to undergo a bone marrow transplant.

It was a gruelling process both physically and emotionally. I have never felt so unwell and five weeks in an isolation room at Sheffield’s Royal Hallamshire hospital was mentally crushing.

Thanks to the generosity of a complete stranger, a 30-year-old woman from Germany, I survived leukaemia.

But that survival came at a price.

Bone marrow is the source of red blood cells, which carry oxygen around the body, and the white blood cells that contribute to our immune systems.

The transplant therefore led to some remarkable changes taking place within me.

Firstly, my O blood has now switched to A , matching that of my donor.

Secondly, and more importantly, my donor’s immune system is trying to develop in me.

During a bone marrow transplant drugs are used to turn your immune system off so that the donor’s cells are not rejected by the recipient.

Gradually these drugs are tapered down and for about 60f bone marrow transplant patients they are able to live without daily immunosuppressants.

For the rest, their new immune systems begin to attack their own bodies.

This condition is known as Graft versus Host Disease (GvHD) where the graft refers to the newly ‘engrafted’ bone marrow cells and the host is the patient.

GvHD can be hugely debilitating and consign some sufferers to wheelchairs.

It can attack the lungs, liver, mouth and gut – proving fatal in some cases.

Sufferers, like me, experience skin problems including; thickening, unrelenting itchiness, reddening, soreness and incredible dryness.

The white blood cells directly involved are called lymphocytes.

Cells in the body are able to distinguish themselves from each other by proteins on their surfaces called antigens.

It’s a bit like a uniform. Liver cells carry one type of antigen and skin cells carry another.

Lymphocytes work as part of our immune system by being able to pick out cells with antigens they don’t recognise and destroying them.

Usually these are viruses or bacteria but in my case my new lymphocytes don’t recognise the antigens associated with my skin.

Different people are affected by GvHD in different ways. In some people their new lymphocytes decide to attack their joints causing them to seize up. In others it dries their eyes out; some people suffer terrible problems with their digestive system.

Significant numbers are never cured and some are unable to ever return to work.

Why all this happens and why it affects different people in such a variety of ways remains a mystery.

What it is about the certain organs I have listed that make them so prone to GvHD is also unknown.

Some treatments are available but for many it is a case of management rather than cure.

The first line of defence is steroids.

They work by blocking the receptors on the surface of the lymphocytes thereby stopping them from acting.

This of course causes problems – the most obvious one being that it massively reduces the ability of your immune system.

Infection is the greatest cause of death for patients with GvHD.

Other long-term problems with high-dose steroid treatment include bloating, weight gain, adrenal disorders, cramps, higher risk of diabetes and mental health problems.

They are not great drugs to be on.

The chance of a long-term cure, or improvement in the condition, is offered by a treatment called Extra Corporeal Photopheresis (ECP).

If it sounds suitably confusing and a tad bizarre then good – because it is!

Twice a month I spend three hours attached to something a bit like a dialysis machine.

A needle is placed in my arm and about half a litre of my blood is taken out.

This is then transferred to a bowl which spins out the white blood cells.

These cells are then mixed with a special chemical that is sensitive to UV light.

This mixture next passes into a chamber that resembles a miniature sunbed.

The UV light activates the chemical which in turn begins to kill the lymphocytes.

Blood, along with the damaged and dying lymphocytes, is then returned to my body.

The idea is that somehow this ‘trains’ the new immune system to be more tolerant but more research is required in order to fully understand the mechanisms involved.

GvHD is an unpleasant condition but it is important to remember one crucial and ironic fact.

A small amount will actually help fight off any remaining leukaemia.

If it can be managed it represents my best chance of long-term survival.

Sunday, July 6, 2008 11:01 AM CDT

It was sports day at school this week. Rachel has been so looking forward to it, because it is her first ever sports day - the only other one she was able to attend, she wasn't physically able to take part so she helped out with the scoring. This time, Rachel's teacher gave her 'Star of the Week' award - two teachers came over to me and said they had lumps in their throats to see Rachel running with all her might in the Year 2 race. She of course was oblivious, just having a whale of a time. Isn't this what life is all about.

To the other Smith family, I hope you can go?!!!!

And we are generally looking forward to a good summer. Normal stuff. Yay.

Saturday, June 28, 2008 3:16 AM CDT

All well at the moment in the Smith household - did you Isla's message in the guestbook? When I saw that, I just felt so proud of both my girls. We worked so hard throughout Rachel's illness to make sure that Isla wasn't left out, although clearly with Rachel being centre of focus with all the gifts, a web page, 'wish' outings, newspaper articles etc, it was a constant battle to maintain the equality between the two and to make sure that neither harboured resentment towards the other. It was exhausting, I can tell you, and I know that some people were disapproving when eg I took Isla into hospital overnight, or turned down offers of help for one or the other of the girls, but I was absolutely determined that whatever else the leukaemia had affected, it wouldn't destroy their relationship as well.

Rachel had her MRI scan last week, although we won't have anything on it for a while because the next appointment with the neurologist is in a few months. I am not concerned at all, we'll just run along with this and see where it goes. Her growth is also rather ahead of where she should be, the consultant isn't remotely concerned but again, we'll just keep an eye on that too. Children who have had cranial radiation (Rachel didn’t) sometimes have their wiring completely messed up - but a teeny voice at the back of my paranoid parental mind is saying, Rachel's treatment protocol is a new one, started in 2003, and is the most intensive for first diagnosis so how can they know yet what this cocktail throws up later on.

Finally, we are now starting to feel that we are moving forward a bit. Most of you know that I injured my hand recently, and there is no doubt that it happened as a consequence of my emotional deterioration over the past 2 years -you'll note I didn't say 3, because I was strong in the first year and a half of Rachel's illness. Breakdown, burnout - whatever you want to call it, it has been very obvious that I was suffering - but not to dwell on it, suffice to say that I think the trough has now been negotiated, albeit with the emotional and physical scars to show for it

Wednesday, May 28, 2008 10:48 AM CDT

I found out something today when I checked the Leukaemia Research website, as I routinely do : Leukaemia Research are funding a project to develop a vaccine against leukaemia .....see this link for more info:

http://www.lrf.org.uk/en/1/sciresresben.html

Can you imagine, if they did actually develop a vaccine? But there is more - have a read at this page:

http://www.lrf.org.uk/en/1/scirescl.html

This work is just staggering, and is already why the cure rate for childhood leukaemia stands at over 80%. And improving. I am thrilled that they have now put more details of the research projects on their website, I think it isn't widely recognised how crucial their work is, so it is about time they started to give out this information.

Wednesday, May 28, 2008 10:48 AM CDT

Monday, May 26, 2008 1:32 AM CDT

We went to see the consultant paediatric neurologist on Friday. Basically, as I said in a previous post, Rachel is fine but sometimes she appears to have little 'blocks' with things when she is learning something, or is given an instruction. It only happens occasionally, and is only evident to those working closely with her. To cut a long story short, the neurologist has further referred her to another neurologist, and has booked her in for an MRI scan (head) in a couple of weeks. He said that what I described was quite typical for children who have had such intensive medication, and assured me that I was certainly not paranoid.

So, it isn't a huge deal, she is a very capable little girl, all this will do is give us guidance on how best to help with any cognitive difficulties she may encounter going forward. She remains in rude health otherwise, which is all that matters.

Meanwhile, I am still struggling a bit, although miles stronger than I was last year. People look at Rachel and think it's all fine, but it isn't, frankly - I am a bit of a nervous and emotional wreck! Ninety-five per cent of the time it's fine, but just sometimes I get into a terrible state of mind and then the wheels come flying off. Having said that, I'm definitely getting better bit by bit, and the new job is just what I need to get my confidence and self esteem back. We have said this many times before, but the effects of this disease seep into so many areas of your life, it is very destructive and there is no quick fix.

Wednesday, May 14, 2008 9:57 AM CDT

Haven’t updated for a while – been too busy!! Busy living a normal life, happily doing family things. We have recently added to our little family, in the form of Mr Dazzles, our border collie puppy. Oh, he is sooooo chewy! He badly needs to go to puppy training classes, we are all clueless and he is running riot! He is gorgeous though, and the girls just adore him, as does Paul.

Meanwhile, I am going to work for Leukaemia Research, which I am absolutely delighted about. They are a wonderful charity, and their relentless and dedicated work is now only touching distance away from a cure. I simply cannot wait to do my bit for them. We also were lucky enough last week to be involved in the launch of Sir Ian Botham’s next walk, which is later this year. We will be walking with him for a few miles, so watch this space for updates. I have actually updated the photos at last!! and have updated the links below.

Wednesday, March 26, 2008 4:34 PM CDT

We were away over Easter, skiing in Andorra. All well, we had a lovely break and loads of snow. The girls just eat up every travel experience, it is so funny to see and to hear them discuss it all. They couldn't quite get to grips with Andorra being a country though - as a Spanish speaking country and having flown into Spain (we stayed in Barcelona for one night) they just couldn't get their heads round it!

Rachel has about 8 - 10 bruises on her legs today. I am sure they are all ski-related? but Paul and I exchanged glances at bedtime when we spotted them ..... ahh it is our life now, to be paranoid (sigh).

I will try to post some new photos soon, apologies to those who have put in requests!!

Thursday, March 6, 2008 12:56 AM CST

Clinic yesterday. All is well, our not-so-little Rachel is now 29 kilos, 124.5cm and on the 91st percentile for her age on both height and weight! She is a joy to us all, and we smell the roses every day!

Actually, the truth is, I got myself into a bit of a state yesterday because there is a niggling little thing going on which I noticed over a year ago but both her school teacher and her piano teacher have now independently flagged it. It is – hopefully – nothing too major, but we have all noticed that Rachel sometimes doesn't make simple connections in work she is doing. It seems to be something affecting her short term recall as far as we can make out. Rachel is a clever little clogs at school, always has been, which is why these little lapses, when they happen, are so - well, frankly they are just plain odd to witness. We shall wait and see, the docs are having a chat about it. I suspect Rachel will be having a blood test next clinic just to check no relapse (which is why I hit a state of panic yesterday, but I have reasoned my way out of it now - if they had been concerned, I'd have had the call to take her in by now) but also there may well be some form of testing to check if there has been some damage in the brain. With the sheer length of treatment and volume of chemo over 2 ˝ years, some of the chemo directly circulating the brain via the regular lumbar punctures – and of course the brain seizure that rendered her completely unconscious for 20 minutes or so - learning impairments are a known possible side effect.

I have to stress that we are not panicking about it (now that I have calmed down over the 'R' word...). It is a minor thing: she is still with us and relatively unscathed, nothing else matters, certainly not her future exam performance. If that’s all that she has to face, we’ll take it. With bells on.

Monday, February 18, 2008 12:14 AM CST

Dear Everyone, thank you so much for your good wishes for Rachel's birthday. She had a wonderful day, and is thrilled with her new bike! There is so much I could write here (I did initially write a long entry however decided against posting it), but let me point to 2 things infinitely more important than boring you with the minutiae of a day in the life of our family:

1. PLEASE GIVE BLOOD if you are able. Rachel would not be here today if it wasn't for 15 or so bags of donated blood.

2. Please read Nicole's diary entry of 15th February (http://www.c-h-o-c.org.uk) . Be humbled by the gutsiest, most positive, most selfless person I have ever had the pleasure to encounter in my life.

Thursday, February 7, 2008 3:17 PM CST

Well. What to say. Rachel is just fine, and we seem to be getting back on track, after the 3-year hiatus. 3 years today, as it happens - the anniversary of the day our lives changed. But you know, I hadn't remembered the date at all, until Paul mentioned it this morning. But how vividly I now remember tonight, 3 years ago.

So what was I doing today? I was giving a talk on cancer to 400 16-year olds at a school in Loughborough. As I said, our lives changed on Feb 7th 3 years ago.

Clinic this week was all fine, little miss madam will be on 4-weekly appointments until September, and I will be contacting the GP next week to start Rachel's re-immunisation programme.

Rachel will be 7 next Sunday. How lucky are we.

ps happy 18th birthday loochy!

Thursday, January 17, 2008 2:17 PM CST

Brief entry today: have you seen the news ref the breakthrough in identifying the stem cells which cause ALL? This is Big News, maybe even will give the ability to start looking for ways to prevent the disease occurring? How great is that?? The research was funded by MRC and Leukaemia Research - keep giving these guys your money, they are doing great work and I hope beyond hope that the money raised from the Banana Ball is continuing this work.

In this latest development, they have discovered that pre-cancerous stem cells arise from an abnormal fusion of two genes during the pregnancy, to create a hybrid protein (called TEL AML1). This genetic mistake can set in motion a series of events that cause the cells to become leukaemic.

Not only that, they have identified these rogue cells which themselves may escape the treatment, causing relapse during or after treatment. These cells dictate the disease course and provide the bull's eye to target with new therapies.

Cathy Gilman, Chief Executive of Leukaemia Research will be on Sky tomorrow (Friday) regarding this breakthrough, the significance of this development is just so huge.

Thank you everyone for helping us to support Leukaemia Research xx

Tuesday, January 8, 2008 10:11 PM CST

Well, we’re back – all still tired and jet-lagged (I am writing this at 3am, seems to be the time we are all waking up regardless of how tired) and happy to be home, having had a wonderful few weeks.

We started off in Hong Kong – staying in the Disneyland Hotel, which was a surprise for the children. They were SO surprised when they realised that was where we were heading for when we left the airport, and they couldn’t have been happier. So much so that each time we took them into Hong Kong, they were completely under whelmed and just wanted to get back to Disneyland resort. They swam every day, and thoroughly had a great time there. Then we moved onto Port Douglas, Queensland Australia. It was hot there, our room was on the edge of the massive saltwater pool that meandered around the entire hotel, covering a couple of acres I guess. Clearly, the girls were in heaven with this, and it was so safe, so relaxing for us too. We went on a day trip to the Great Barrier Reef where Isla went snorkelling with Paul, and had a day when we went into the Daintree Forest and went on a boat on the Daintree River to spot crocs. But it was a bit hot for them and they were rather elusive, despite the best efforts of Bruce Belcher and his riverboat!

So after a lovely 5 days in Port Douglas, which we all really enjoyed, we went to Sydney on Christmas Eve. The girls were very excited on the flight, because it was in the evening and they wondered if they might catch a glimpse of Santa as he started his travels. Our room was again huge, and we had the most spectacular view over Sydney Harbour Bridge and the Opera House. Christmas Morning saw great excitement, because Santa had somehow managed to track down Isla and Rachel, and there was a little pile of presents by the window. We had Christmas lunch in our apartment (we had serviced hotel/apartments in Australia, worked a treat), accompanied by Skippy the blow-up kangaroo that had been left by Santa, and then went to Taronga Zoo in the afternoon.

Next day, we were on a lovely boat to watch the start to the Sydney-Hobart yacht race out of Sydney harbour. What an experience - it was absolutely awesome, and definitely Paul’s highlight of the holiday. Words can’t give justice to the experience, it was just amazing.

Then, on to Hawaii. Well, where do I start. The overwhelming generosity of our friends Simon and Lisa, and our new friends Jon and Lynn! made our time there truly unforgettable. Simon took the girls surfing on Waikiki Beach, which they absolutely LOVED and I think he has given them a bit of a taste for it. Our hotel was just fantastic, a beautiful pink room in a pink hotel, which completely thrilled the girls! We were overlooking the beach in the most awesome position with an equally awesome terrace – wow, it doesn’t get much better than that, I assure you. The girls have found some new best friends in Kianna, Lauren and Danielle, and half way through our 6 days there, Isla asked if we could live there! Sadly, Paul said no! Shame……Anyway, we just soaked up the aloha and did a few touristy things like Pearl Harbour, and on our last day, Isla and Paul went to the Sea Life Centre and swam with dolphins. Isla has had a fixation with dolphins since first saw one in Majorca when she was 2(‘dolmy’) so it was a huge thing for her. We then went to Simon and Lisa’s for a farewell breakfast, and that was that – bye bye Hawaii (for now!).

So, on to Los Angeles for our final few days. Celebrity central. Our hotel room was a (huge)2 bedroomed bungalow in a secluded spot in the grounds, next door to the bungalow where John Belushi drew his last breath. It was all rather exciting really, but we sadly didn’t spot any celebs. I rather think it was more due to our lack of recognition rather than the absence of, but there was tight security on the entrance, stopped our taxi and wouldn’t allow him to drop us off until they checked their list of expected guests (clearly, they didn’t recognise us….?!), so I guess someone b.i.g. was staying there, but no idea who. The girls swam in the delightfully warm outdoor pool (where photos are prohibited), and we went to Universal Sudios, Kodak Theatre, did a bit of shopping and took the obligatory tour. And that was it!

I think we all had an experience we will never forget. The girls completely took it in their stride – they swam everywhere we went, and were eagerly interested in every flight we took. Rachel attracted the most amazing attention throughout the whole trip. People stopped us in the street, in shops, restaurants, airports, to tell us how beautiful she was and to stroke her hair. It was universal in Asia, but was also the case in every place we visited. One American in Hawaii approached me and said, “Ok, tell me, just how many modelling contracts does your daughter have?” Another Asian couple in Stanley (Hong Kong) actually took a photograph of her as we passed on an escalator (bit freaky, that one, we kept a tighter hold of both of them after that). It was quite amazing – even walking down Sunset Boulevard on our first day, a woman passed us and then turned back to say, “ Your children are so beautiful!” So, I guess I realise that Rachel is back to how she was before, the weight gain that stayed with her for the whole 2 ˝ years has finally gone, and our gorgeous little girls is back. To stay, fingers crossed.

Today (Wednesday) is clinic. We had a few things with Rachel that caused a minor panic, mainly that she was complaining of sore feet for the first week or 2. But I think it was just game playing really, because she knows that if her feet hurt we pay attention. So once I told her that if her feet continued to hurt, she would need a blood test when we got back, and miraculously she never mentioned it again. I will ask Dr Madi today, and I suspect he will do a blood test anyway, just to compare against the last one and hopefully be sure. But she is on fine form and looks great. Roll on 2008.

Finally, for those of you who have maybe visited Nicole's page in the past, she has had her story published. I have put the link to Amazon below if any of you are inspired to buy her book - she truly is in the catergory of 'inspirational.'

Saturday, December 15, 2007 5:32 AM CST

Firstly, Happy Christmas to everyone - I'm afraid we have run out of time to get the Christmas cards done before we leave for our holiday today. And on that note, Rachel has been sick 3 times this morning, I'm sure it's just a tummy bug but we could do without it on this day, of all days!! Hopefully we'll get to Heathrow/Hong Kong without incident.......

So, apologies for not getting our Christmas cards out this year. This trip feels like real closure, with 2008 being a new start. We hope so, anyway.

Merry Christmas and Happy New Year to everyone, out hearts have been so warmed through the last 3 years or so with the unbelievable support from all of you x

Tuesday, November 27, 2007 3:36 PM CST

Well, it was Rachel's Great Banana Ball at Rushton Hall (www.rushtonhall.com) at the weekend, our thank you to Leukaemia Research for their part in helping Rachel hopefully beat this disease. I think it is safe to say that it was a great success: we raised in excess of Ł50,000 which truly is way beyond my most optimistic hopes. We only managed that total because of the generosity of our friends, both in donating prizes and from those who bought them, many at way above the odds but they went ahead anyway, knowing that the money was going to the best of causes. The support we had from the Leukaemia Research team was also fantastic, and played no small part in the satisfying result of our mutual efforts.

I will post a final number when we have it, it may not be for a week or so. But is feels like a very fulfilling closing of the leukaemia chapter of our lives. We hope it is a one-chapter book? Who knows.

Meanwhile, Rachel has a bad cold/cough - she hasn't had this since she was 2!!She was off school today, but it is a normal childhood illness. yay.

Thursday, November 15, 2007 4:35 PM CST

Well, here we are, 3 months after Rachel's treatment has finished. In a funny way, everything has changed since her treatment ended, but nothing has changed. We are still the same little family, Rachel is still our gorgeous little girl, and our lives are moving forward - and leukaemia is still part of our lives.

2 weeks ago, Rachel all of a sudden had 3 (4?) bruises on her legs. In an instant, we reverted back into panic mode: the bruises were quite large, very blue, and not really in the 'normal' places. They were on her inner knee and thighs. That night, I was immediately transported into the 'relapse' world, where a stem cell transplant (with 40 per cent mortality on the procedure alone) was the most likely next step. It was astonishing how quickly, and how vividly, the nightmare scenarios returned. Night sweats and nightmares, I had them for 1 night before I gave myself a severe talking to, and snapped myself out of it. Paul had a couple of phone calls as a result of my musings on the matter, and he convinced himself that I was hiding something from him, and he had a further 24 hours of the nightmares before I reassured him that I was not worried, I had just had a panicky reaction that I had subsequently reasoned my way out of. Nevertheless, mmmmmm not a good experience. We had to wait a week for Rachel's clinic appointment (if more bruises had appeared we would not have waited for clinic, we would have taken her straight back to Ward 27, there is an open door there for Rachel if we are ever worried), which was on Wednesday, and they gave her a thorough check plus blood tests, and so far, so good. If there had been an adverse blood result we would have heard by now.

Relapse within 3 months of finishing treatment would have been extremely bad news. The longer you remain in remission, the better your chances are - is how I understand it. Anyway, we just relish every day at the moment, Rachel is back to her gorgeous, cheeky, rewarding self, and we are so thankful for that. Meanwhile, Rachel's Great Banana Ball at Rushton Hall on November 24th, is starting to look AMAZING! We have an impressive array of auction items, from Olympic shirts from Steve Redgrave, to Rugby World Cup items, to Harry Potter signed memorabilia, to villas, oil paintings and celebrity doodles in our auction - we hope to raise a lot of money for Leukaemia Research which, without doubt, is the charity which has changed the outcomes for leukaemia patients over the past 20 years.

Meanwhile, we went to the Caribbean for half term, an amazing holiday, and we are looking forward to some more travels over the Christmas holidays. It has been a busy few months, but we are relishing every moment. I have also agreed to start work in January for Macmillan, which I am really excited about - I feel so anxious to be out there, doing my bit, and what better way than to work for a charity like Macmillan.

Rachel has made her 4th front page this week! In the Melton Times, click on the link below - hopefully, this is Rachel's last ever newspaper article.

Thursday, September 27, 2007 2:00 PM CDT

Hi everyone, I thought I would put in a new journal update, to let you know how things are going in our new life of 'normal.'

Rachel is truly sparkling. She is definitely back to the pre-leukaemia Rachel, full of laughter and mischief - and winding up her big sister. I asked her today if she felt 'better' now that she isn't taking and medicine, and she said no, she doesn't feel any different. Clearly, by her demeanor, she DOES, but she just isn't actively aware of it. She has mild eczema around her mouth, and a few spots on her face, both of which are completely common after children stop treatment: their immune system just hasn't a clue what's going on, and it gets a bit over-exuberant. It will take maybe 6 months to settle down, perhaps longer. So we have hydrocortizone cream for that, and I have to chase up the GP for her 'flu jab.

Today I received notification of Rachel's appointment at Glenfield, the local cardiac hospital. I felt mildly emotional as I read it, as it is a reminder that she may encounter various health issues in the future, even if the dreaded 'L' word does not re-emerge. My beautiful girl, it is so good to have her back.

I also want to say that I have been very touched by the messages, be it face to face, by email or left on Rachel's guestbook, by parents of more recently diagnosed children also suffering from ALL. If, in some way, this journal can ease another family's journey, it is like a little notch on the credit side, millimetre by millimetre claiming back the awfulness that Rachel has endured over the past 2 years, in her completely un-self-centred, stoic and determined way. (Unlike her mother, whose composure over the past year especially has been conspicuously missing.....). So a huge thank you to those people I don't know personally, but who have strengthened me immeasurably by the knowledge that Rachel's experience is in some way helping. We are all in this together xxx

Wednesday, August 22, 2007 6:41 AM CDT

Today's clinic visit was all about 'what next' for Rachel. Dr Madi said that there is a moderately good chance that Rachel's leukaemia will not return. In our eyes, 'moderate' means exactly that: in the middle. Low - moderate - high. 33.3 to 66.6 per cent that it will return/won't return. Or, 50-50. So that is where we are, flip a coin. We are hopeful for the future, relieved Rachel has got through her treatment, thrilled that Rachel is able to have a 'normal' childhood again, for now at least. But not celebratory, no champagne corks, just fingers and toes crossed that she won't have to go through it again.

Clinic appointments are every 4 weeks in the first year, every 8 weeks in the second year, every 12 weeks in the 3rd year. Then, annual for life, assuming it hasn't come back. Relapse is most likely in the first 3 years after finishing treatment. If she is still disease-free in 3 years, the annual follow-up care moves to another clinic, the Late Effects clinic. Doxorubicin can cause damage to the heart wall/lining, so Glenfield will operate a follow-up care programme which will most likely be annual scans, or if her heart is in good shape might be only 3-yearly checks. In 6 months Rachel will get re-immunised against the usual childhood stuff, until then she is still slightly less robust than 'normal' children, but whilst we have open access to ward 27 for things like chicken pox/measles etc, where they will actively treat those diseases, the run of the mill coughs/infections will be dealt with by the GP. Skin is more sensitive, so sun protection is extremely important.

That just about covers today's appointment. Rachel is in sparkling form, and both girls are very excited about going to Greece on Sunday. I guess updates will be few and far between now, since a diary of normal daily life is not terribly interesting and certainly not very educational about the disease! which was one of the 2 reasons I started this journal. So I will leave you with this for now:
1. Rachel would not have survived without however many pints of blood (and platelets) she received at diagnosis, and in the first year of treatment. If you are able to give blood, it is really pathetic if you haven't bothered to actually do it. There are no justifiable reasons to give as excuse.
2. Please give to research charities like Leukaemia Research, Cancer Research, Heart Foundation, etc etc because charitably funded research is what is making the difference in the survival rates of life-threatening diseases like leukaemia.

Thank you to all of you for being with us on this journey.

Thursday, August 16, 2007 4:36 PM CDT

We are home! Rachel doesn’t have a wig any more, and she doesn’t have a Hickman line. We have our old Rachel back.

Paul and I have had a very emotional day today, both shedding private tears at various points throughout the day. Even tonight as I write this, the tears are barely containable as Rachel starts the next phase, which hopefully – please, let it be so – marks the beginning of the end of her relationship with this sneaky little disease.

We were in hospital this morning at 8am, Isla and myself also nil by mouth to keep Rachel company. So it was a bit of an ordeal for all of us that Rachel did not go down to theatre until 4pm. Even Bethany, who was on the emergency list to get a replacement Hickman line, went in ahead of Rachel, who was on the planned list! A nice surprise was awaiting us, though, with David Fell being her anaesthetist – David plays tennis with us at Queniborough, and is a very familiar face, so I knew he would look after her. (Rachel has had 26 general anaesthetics in the last 2 1/2 years : for her last 3 ga's, Rachel has had laryngospasms, which is where her larynx closes during anaesthesia; clearly it’s not ideal and causes a bit of added anxiety to the anxious parents waiting for news!)

When Rachel came out of theatre, she had been sick which is a first, but otherwise ok. She wasn’t happy though, in a bit of discomfort with the wound and also she spotted the cannula in her hand, which she knew would be coming out later. Frankly, she just looked extremely cross and a little bit sorry for herself. But, she dealt with it, and I can honestly say that she has coped with today much better than I had feared. She is on good form now, as I said at the top, 2 ˝ years on, we have our old Rachel back.

Thank you to everyone who has called, emailed, texted, or left messages on Rachel’s guestbook yesterday and today, it has been a big day for us for sure, and your kindness and concern has touched us hugely. So what is next? Well, oral chemo continues until Tuesday August 21st. Clinic appointment on Wed August 22nd with Dr Madi to discuss 'what happens next' ie immunisations, follow-up care etc. And a few good holidays to look forward to over the next 4 or 5 months.

Wednesday, August 15, 2007 6:24 AM CDT

Well, tomorrow is the Big Day. Whilst she is still on oral chemo for another - week? not sure precisely, tomorrow is starting to feel like The End. Without a Hickman line, without the wig, visually she will be 'normal' again. I wonder if it will feel like an anti-climax? Today, I am beginning to feel quite emotional, and I have been in a reflective mood. I'm very aware of the strain that we have endured in our lives over the past 2 1/2 years, and how that has taken its toll on our little family, and on our relationships with extended family and friends too. Many of you have astounded us with your constancy and understanding, whilst others have surprised us with their apparent lack of compassion. But we also know that it is impossible for any of you - fellow sufferers and carers excepted of course - to comprehend just how profoundly this disease affects almost every aspect of your life.

But back to tomorrow - Rachel really seems to have come to terms with losing the wig. We will know by this time tomorrow if that is indeed the case, but she'll have had a little gift from Daddy to help ease her through it! Not the puppy! that will have to wait until after we finish our travels in January. Meanwhile, the Hickman line has all but packed up anyway. When the nurse came today, the red line would flush slowly but wouldn't bleed back, although the white one - the smaller of the 2 lumen - bled beautifully. It has lasted a full 2 years, which is amazing really, considering the first one lasted 7 months before a bug called pseudomonis decided to make its permanent home there, resulting in the line having to come out.

More over the next day or so.

Friday, August 10, 2007 4:37 PM CDT

Well, the end is definitely in sight now. At least, the end for now, because we just don't know what lies ahead. However, the end-of-treatment examination of the bone marrow and spinal fluid was done on Thursday, and assuming those results show that Rachel remains in remission, her Hickman line comes out on Thursday next week, August 16th. We then have a clinic appointment with her consultant, Dr Madi, to discuss what happens next.

So, what does happen next? We will continue to have a clinic appointment every 4 weeks, where they will take a blood sample and review her progress. The downside is, she will be giving blood via cannula as opposed to the 'easy' route of giving blood via Hickman line which is what Rachel has been doing for the past 2 1/2 years. Once her blood levels have achieved 'normal' levels, which I believe will take up to 6 months, she will then start on a regime of re-immunisation from scratch. Reading between the lines, I think it means that Rachel will catch any and every little bug going, just like a baby does, until her immune system builds up. But, I'm not sure if that is right or not, I don't really know what to expect.That is what Dr Madi will be telling us on August 22nd I guess! All I know for now is that nothing really has changed, but I am expecting that sometime soon I will start to panic - the medication (chemo) is a huge safety blanket which has kept the leukaemia at bay. What we don't know is, will the leukaemia return when we stop the meds. So, whilst the panic has not yet set in, I know it will at some point. Waiting, will let you know ....

Wednesday, August 1, 2007 3:46 PM CDT

Bloods today are massive, after the LAST EVER (we hope) STEROIDS! Neuts 5 point something, Hb 11.9, it is an odd time but I feel as if I am in limbo, waiting for my panic/terror to kick in. But as it stands at the moment, I feel nothing other than surprise at my lack of emotion. We are merely ticking off the days, and the treatments, in these last weeks of the protocol. A week tomorrow, last lp/bma (last ga, ward 27). 2 weeks tomorrow, removal of Hickman line(last ga, main theatre). And of course, the Wig. Rachel seems ok with it all, she's not saying much, and looks neither excited nor remotely anxious when it is discussed.

Grandma and Grandpa arrive from Scotland tomorrow, and cousins Amy and Craig are visiting on Saturday, so both girls are very excited, they don't get to see them that often.

Wednesday, July 25, 2007 10:56 AM CDT

A short update today, because suddenly life is SO busy! Mainly because we have a lot of things planned for the holidays, but of course the main event is the removal of Rachel's Hickman line - physical proof that she really has finished her treatment. As most of you will know, that happens on August 16th. Last diagnostic bone marrow aspirate and lumbar puncture is August 9th (the day after we see Joseph and the Amazing Technicolour Dreamcoat), and her last IV chemo (vinc) was TODAY!!! Which also means that Steroidgirl will be visiting us this weekend for the last time.

We had a lovely week away, despite finding that we had inadvertantly run out of medication so we had to pop into St George's Tooting to get some more prescribed. Unfortunately whilst we were there, the rains hit, the hospital flooded and all the consultants were in emergency contingency meetings as the hospital went into crisis alert status! So we left them to it and hotfooted it to Brighton (gorgeous brand new children's hospital) where they had the 6MP(mercaptopurine) ready for collection (thanks to Tanya for sorting it out, and Laurie for collecting it). All completely our fault for not attending to the medication requirements properly whilst we were away. The next problem occurred yesterday when we tried to take bloods. I usually flush the line once per week, and bloods get taken once per week, but last week we did not access the line at all. So it effectively packed up - clogged, well and truly. Long story short, one lumen freed up yesterday but the other was rock solid. At clinic today, Rachel B worked on it for about 10 mins, and she got it unclogged with a bit of force that neither I nor the community nurse dared try! She told me to keep an eye on her for the next few hours, but since her neuts are at 1.9 this week, I didn't feel too anxious. However, her temp stayed relatively stable for the following few hours so all appears well.

That's all for now - still on 100 per cent dosage, she's tolerating it all really well.

One more thing - Jemima is at the stage of treatment where she is needing regular transfusions. This is a reminder to me to say PLEASE GIVE BLOOD. THERE IS NO EXCUSE FOR ALL YOU HEALTHY ADULTS OUT THERE NOT TO DO IT.

Thursday, July 12, 2007 2:58 PM CDT

A quick update: firstly, as hoped, Dr Madi has said that we don't have to get bloods next week whilst we are in Norfolk/London/Ditchling. Basically, her bloods have been quite stable, she has been neutropaenic only twice this year, and with neuts currently at 1.78, he is quite happy to remain on 100 percent dosage until we return. I think the subtext is that he knows we will recognise if anything looks amiss, and will take appropriate action.

Regarding her Hickman line, I have taped it up so it won't come unclamped. But unfortunately, I have taped it up so well that I can't see it, so I am worried that it is unclamped under the tape!! Can't win.

There is a sweet article in the Melton Times this week, see the link at the bottom. Apparently it is on the front page ( that makes a total of 3 front pages in Rachel's celebrity illness career, what a star!) but Isla has been cut out of the photo yet again! Bless!

Finally, I managed to get Rachel to allow me to wash her hair tonight. Oh, how it has grown - and, best of all, she kept sneaking a look at herself in the mirror, I think she was quite pleased with what she saw. HURRAH! this is really good news because she is increasingly anxious about the wig being consigned to history in a few weeks. The community play specialist, Rosemary, has hit a brick wall with her, that little monkey Rachel has led her along but at the point where she has to make a committment to take off the wig, she is immoveable. We have one final session, so I think we might, just might, get the result that we want which is that Rachel is happy and confident enough to let the wig go. Fingers crossed.

Tuesday, July 10, 2007 4:50 PM CDT

Well, this week's news is that Rachel lost a tooth! She was chewing on a drumstick sweet, and there it was, an upper left molar! Hmm, that would be, let's see, 3 to 4 years early? The bad news is, firstly, parts of the roots are still in her gum ( an infection risk?) and secondly, the tooth next to it is wobbly too. In truth, I am not overly worried because we already know that her second teeth are growing in early, but I will just make sure we keep an eye on what happens next, and take her back to the dentist if necessary. She was pleased with her Ł2 from the tooth fairy, though ...!

Rachel's Hickman line is now coming unclamped almost daily, which is not satisfactory because it means that I have to flush it each time, and it is not great to be accessing the line so frequently (again, infection risk). I am not sure what the solution might be, but I will ask tomorrow if an extra clamp can be put on the line. Thankfully she is not neutropaenic very often these days, so it is less potentially dangerous, but it is nevertheless not ideal. Otherwise she is very well, even going on bike rides with Paul and Isla. Our village is perched on rather a large, if picturesque, hill, which means that it takes quite a bit of puff to go anywhere on your bike! School breaks up on Friday, then we have a few treats coming up over the holidays. I need to sort out a few logistical issues, whereby I will need to arrange for her weekly bloods to be taken elsewhere when we are not at home. Next week I suspect we'll go to King's Lynn QE hospital, although if her bloods are high they might let her skip a week which would be good. If neuts are around 1 point something they won't allow it, we'll see.

One more IV vinc to go - July 25th
One more lp/bma to go - Aug 9th
Hickman line out - Aug 16th
Chemo ends - w/c Aug 23rd
Wig gets thrown away - with the Hickman line!

well that's the plan .....

Monday, July 2, 2007 9:26 AM CDT

This week has seen Rachel struggle a bit with a few things. She had vincristine on Wednesday and started 5 days on the dreaded dexamethasone (of course still on daily mercaptopurine, weekly methorexate, and antibiotics each weekend).

Firstly, her hair: you may remember that Rosemary (from the children’s community team) has been coming for the past 2 months, to help her with self confidence/self image/etc, to try to help her cope without a wig. However, Rachel has been saying for the past week that she doesn’t want Rosemary to come any more, and that culminated in a full-blown anxiety attack on Thursday. She refused to see Rosemary alone, and was clinging tightly to me, crying, for the first 15 minutes, and effectively we had to abandon the session. She then fell asleep for 2 hours on the sofa, and on waking she again clung to me, again crying and literally she would not let go – I was supposed to be going out to a school governor meeting but I couldn’t leave her, she was in such a state.

Secondly, her mobility: the vinc causes leg pain, and generally she needs to be wheeled around if we are walking any distance. We (me plus girls) were in London at the weekend, and Saturday was supposed to be a fun day in central London, the main focus being to see Shrek in Leicester Square in the afternoon. However, it quickly became clear that she wasn’t able to walk more than a hundred yards or so – and it hadn’t occurred to me to bring the buggy! It was raining heavily, extremely busy, and I just couldn’t carry her, she is too heavy. So I took them round to the National Portrait Gallery (REALLY exciting for the children…!!), borrowed a wheelchair, and wheeled her around for an hour or so whilst we waited for Shrek to start. She managed to walk back to Leicester Square, but couldn’t walk up the stairs. I can’t believe I didn’t take the buggy – I guess she has been so well generally, and we are focussing on ‘the end’ and not the ongoing realities of her treatment, and hence it just hadn't occurred to me that she would need it. We haven’t really been anywhere recently, within a few days of the vincristine, that has required her to be on her feet for any length of time. The effect seems to wear off after a few days, so even by Monday her feet/legs are much better. Chemo effects are typically cumulative: whilst Rachel has tolerated the treatment very well, she has nevertheless been on the most intensive treatment any child with ALL can receive, and this does not come without cost.

Now for a much happier topic. The girls’ school reports were sent home this week. Let me read some of Rachel’s:

“It has been a pleasure to have taught Rachel this year. She brings sunshine into the classroom every day. It does not matter what life has thrown at Rachel, she just gets on with it without any complaint. It has been humbling to have her in the classroom on afternoons when she has spent the morning in hospital having intensive medical treatment. This little girl’s strong character has made her into the determined person we know today. Her studies have not suffered in the slightest and she …has a natural ability for learning. She has a very close circle of friends and the class care very much about her.”

Rachel made some comments of her own, and one is as follows:
“I want to get better at : racing becuase I am not very good I will practise nearly evry day.” (I left in the spelling/grammar mistakes!!)
She then drew a picture of herself running “in the racing track”
This bit made me cry, because of course it is the medication (mainly the vincristine), which has affected her feet and legs, and quite probably some of the damage is permanent.

But more than anything, little Rachel is the most wonderful little girl, we are so proud of her.

Wednesday, June 27, 2007 7:30 AM CDT

Today was the penultimate clinic appointment on Rachel's treatment protocol. Of course, this does not mean that she will have only one more clinic appointment: sadly, far from it. She will continue to attend clinic once per month for between 6 months and a year, then it will be 3-monthly appointments, then 6 monthly, then annually for the rest of her life I believe. Also next year will be filled with the entire childhood immunisation programme, so she will have more needles next year than ever.

Meanwhile, back to today, IV vincristine and she starts on the oral dexamethasone for 5 days. We also had a late night visit to Ward 27 this week, because on Tuesday night as she was putting on her pyjamas, I noticed that her entry site (Hickman line)was red and crusty. When I touched it, it has hot and she flinched, so I called the ward for advice. Since her neutrophils had been 1.1 and 1.1 for the previous 2 weeks, and she was on 100 per cent chemo, the chances were that she was neutopaenic, in which case an infected Hickman line becomes a problem. So, we were told to come into hospital. I packed a bag for both of us, and in we went. To cut a long-ish story short, they took bloods and her neutophils were 2.9!!!! WCC 4.6 from 2.1 and 1.9 the previous 2 weeks! So we went home again (but by this time it was after 1am ...). Her bloods today have come down a bit, WCC at 3.something and neuts at 2.3, but what has happened goes something like this: when the body is fighting an infection/etc, the immune system (ie white blood cells) rallies to fight it off. So the white cell count (WCC) goes up. Neutrophils are white blood cells, specifically they are the infection-busters, and the neutrophil count tends to follow the WCC. SO - my amatuer analysis is that there was indeed something going on, but her immune system worked as a normal immune system, and it resolved whatever it was without outside help. YIPPEE!!!

I had a long chat with Doctor Madi today in clinic, Rachel having gone out of the room. It is probably the longest chat I have had with him in the 2 1/2 years, and it was a delight, he is such a clever, ethical man. He referred to Rachel's chances as 'moderately good' which of course was a reference to her high MRD situation. He also said that should she relapse, they had a moderately good chance to overcome the disease again. I have to say that that is precisely how we are approaching it - we know that she is high risk, but we know that treatment is continually improving. I wish she was low risk, but she isn't and there is nothing any of us can do about that. So, he said, go off and have your nice holiday - LITTLE DOES HE KNOW!!!!! - and try not to worry. To some of you that my sound glib, but it doesn't at all sound glib to me. We only have one life each, and one ought to make the most of it. We have said since the very beginning that we are thankful that Rachel 'only' has leukaemia: we have always known it could be so, so much worse. If you doubt me, just ask Polly if she agrees or not (I don't have to ask ....)

So, where was I - last clinic appointment on July 25th, last diagnostic bma/lp on August 9th, Hickman line out on August 16th. The wig will go at that point too. Rachel remains completely traumatised at the prospect of not having the wig/cap to hide behind. If you think I am exaggerating on that point, ask Geoff and Angela because they witnessed it on Monday night when Paul tried to get Rachel's cap off. She was screaming and hyperventilating, she was in such a state over it. Meanwhile, Rachel saw Jemima's new wig today - ooooh, it is GORGEOUS!!! and was obviously giving her some food for thought .....!

Wednesday, June 20, 2007 4:14 PM CDT

Neutrophils still 1.1 - so still on the full chemo next week. I guess I lost my bet with myself from last week! but her white cell count has fallen, which often leads the neutrophil count, so I'll be astonished if she's not neutropaenic by next week. Little Miss Rachel is on wonderful form at the moment, and as many of you have mentioned, she looks much older in the new photos. Clearly, she looks a lot better without that wig! but I think we may be stuck with that until her Hickman line comes out (hopefully) in August.

Regarding the Children Fighting Cancer series, I have been moved to tears (sobs!) both weeks so far. Whilst I think it is an accurate representation, I also have been a little disappointed because I have felt that they have skipped over the issues a little, leaving the viewer to fill in some gaps, or make connections, themselves. But, it is only a 40 minute programme, it would be impossible to walk us through the issues slowly, and would not make for good TV, so I shall have to reign in my slight frustration and be thankful that the BBC have devoted 4 programmes to leukaemia. One thing I will say after watching the first 2 programmes, however, is that I am feeling that we are getting closer and closer to a cure. I hope so. Once Rachel is (hopefully) signed off, and our lives have (hopefully) returned to rather more normal lives, we shall be doing some more fundraising for Leukaemia Research Fund to do our bit to help make that happen.

Sunday, June 17, 2007 4:44 PM CDT

I just want to remind everyone about the BBC documentary, 'Children Fighting Cancer' on Tuesday at 10.35pm. It is all to do with children who have leukaemia, specifically Acute Lymphoblastic Leukaemia, each programme looking at different children, different aspects of the disease and a spread of the issues they face in their fight. Last week's programme was quite shocking, I defy anyone watching it not to have been struggling to hold back the tears. Whilst I have no doubt that the subsequent programmes will be harrowing - especially for those of us who have children of our own fighting with leukaemia - I think they presented the most shocking story on the first programme. But I urge you to watch it, because part of my intention when I started this journal 2 years ago, was to help de-mystify the disease and the treatment, and to help educate friends and family on the realities of Rachel's - and of course now Jemima's - situation.

There are links on the Leukaemia Research website (see links below) with more details (they sponsored the programme).

Don't forget to check out the latest photos.

Saturday, June 16, 2007 6:10 AM CDT

I am updating today to show you and to tell you about the beautiful quilt Rachel received from Quilts 4 Leukaemia last weekend. Please look at the new photographs to see just how exquisite, how special this quilt is. Each block has been individually made by a different person, and as you will see from the photographs, the contributors come from around the globe. Clare, who lives in France, is the quiltmaker who has taken on the challenge to 'wrap the world with love' with her red and white quilts, representative of the blood cells. As I said to her, gestures - gifts - like this are so uplifting, and make much more of a difference to families in our situation than Clare and her helpers probably realise. THANK YOU to all of you for this special gift, and be assured that Rachel is thrilled, she sleeps with it every night on her bed (and actually is curled under it on the sofa at the moment, watching Willy Wonka!).

Thursday, June 14, 2007 11:15 AM CDT

Oh, where to start with this update. Today, we had the devastating news that this dreaded disease has struck again. Not Rachel, but the daughter of our friends Polly and James. We had the INCREDIBLE situation this morning where, as Rachel was wheeled out of theatre on Ward 27, having had her last LP for IT MTX (chemo), Jemima went in for her first bone marrow aspirate. So ironic, so poignant. As my brother-in-law remarked, what on earth is going on when he sees his niece go in for her final LP with his god-daughter on the next bed going into the same theatre for her first. (Actually they didn't do an LP on Jemima because the firm diagnosis wasn't available).

So, not sure what to write really. It is a double edged sword, to be aware of what lies ahead. But we are SO there for James and Polly and the girls, we'll do whatever we can to support them. It is the least we can do, they have always been there for us - have a look back on Rachel's journal and you will see messages from Emily and Jemima. Too ironic for words. We still have the cards that the girls did for Rachel when she was diagnosed, I have to say I am finding it so surreal. It just doesn't feel possible.

So. Here we are. Rachel is great! So was Jemima today, I think Rachel being there helped, especially when they both came out of theatre and we showed Jemima what was under Rachel's plaster - ehm, a pinprick mark and that was it!! (Bit disappointing !!) Rachel's bloods are fine, her marrow seems to be working again
so her HB is 11.6, neuts at 1.1 so still on 100 per cent chemo this week but my Ł5 says she'll be neutropaenic next week and will be off chemo.

Meanwhile, thoughts tonight are with James, Polly, Jemima and Emily.

Monday, June 11, 2007 3:47 PM CDT

2 things: firstly, if you can bear it, there is a new series on BBC tomorrow night (Tuesday) at 10.35pm, following nine children and their families as they battle with childhood leukaemia. Get the tissues ready.

Secondly, for those in the Melton area, the Cancer Research shop in the centre of Melton has been completely re-vamped, into a fab gift/card shop which carries a lot of the same stuff as Paperchase, the difference being that every penny of profit goes to - cancer research of course. Please support the shop if you can, it has some really good stuff (and I am VERY fussy! so it must be good).

OK I'll do a thirdly and fourthly : Rachel has her last IT MTX on Thursday; PLEASE GIVE BLOOD!!!

Will update on Friday.

Saturday, June 9, 2007 4:50 PM CDT

Rachel was helping me in the kitchen today (Saturday). As I often say to both my girls, I said to her, "I am the luckiest Mummy in the world to have a daughter like you." To which she replied, " You're not SO lucky, Mummy." When I asked her why she thought I wasn't so lucky, she said - and I promise you, this is the exact words she used - " Well, to have a child with leukaemia...." .....she actually referred to herself as 'a child.'

Oh, how to rip a mother's heart out in one easy lesson. I have been crying on and off all day. How can she possibly be so wise, so perceptive, at aged 6? What on earth is going through her mind? The psychological effects of this disease are beyond my comprehension. She really is a special little girl, she doesn't deserve this. As if anyone does.

Her bloods are up this week but not as much as maybe I would have thought after the steroids. So my guess is that by next week she will be neutropaenic, just in time to go in for her LP/IT MTX. The (weekly) oral MTX would be omitted if neutropaenic, not sure about the intra-thecal MTX though, I suspect it goes ahead regardless. She is due into hospital on Thursday, which means bloods on Wednesday this week, so we'll see what happens. Last LP though, bit of a milestone.

Meanwhile, yes, life continues to feel like a daily emotional rollercoaster. Thank you - THANK YOU SO MUCH, you know who you are! - to those who have either left messages here, or who have been in touch via email or phone since my last update. And apologies for having adopted some kind of shock treatment, I just needed to point out that our lives are not exactly normal, haven't been for over 2 years now, and I was getting a bit fed up of being expected to make excuses/apologies. I'm afraid I just don't have the energy.

Wednesday, May 30, 2007 2:20 PM CDT

Well, we're getting closer to the end of Rachel's treatment, and it feels a bit surreal. She has her last LP (for intra-thecal methotrexate) on June 12th, her final bone marrow aspirate(BMA)/MRD has been re-scheduled to August 9th and her Hickman line will come out somewhere around August 23rd. At clinic today, Dr Madi was quite happy to bring the BMA forward, because it is merely a final test of the marrow, and taking it 2 weeks earlier is not going to show a different result. We have to wait for the bone marrow results before the line will come out , and of course the line will only come out if the marrow is clear. He will not interfere with the drugs regime in any way doing this - she remains on treatment (ie oral chemo/steroids/antibiotics) as planned, ending w/c August 20th, but it means that we can hopefully get her line out before she goes back to school. I think it is psychologically extremely important for Rachel to start her new school year free of leukaemia, and free of any the evidence of her illness. No Hickman line, no wig! no drugs - a new Rachel. So fingers crossed that her marrow is clear, which I am confident it will be, even though it is over a year since the last one.

Otherwise, despite the weather! the girls had a lovely bank holiday weekend in Norfolk with Granny and Poppa. Paul and I popped off to Tuscany for a few days which was a lovely break for us, too.

I have always tried to make this journal about Rachel and her illness, not about us. But maybe I should be telling a more full story about what happens when your child is diagnosed with such a disease. The psychological effects on Paul and I have been immense, and whilst Paul probably struggled a bit more in the first year, the pendulum has swung round: as things have got better with Rachel's health in the maintenance phase of treatment, I have crumbled. In fact I think it is probably quite accurate to say that I am half way to a nervous breakdown at the moment. People say to us all the time, "I can't imagine what you have gone through" and I think that is quite right, truly you can't if you haven't been through something like this. It is a really hard thing to do, to watch your child being tortured by medication: to watch her in such pain; to watch her become obese in 6 weeks then vomit it all away again; to sit astride her as she goes into septic shock, vomitting into her oxygen mask, as you hear yourself shouting "stay with us, Rachel, stay with us" ;to watch her lose her hair - twice; to watch her cry when she catches sight of herself in a mirror; to carry her into hospital after she has passed out from a brain seizure, not knowing if she'll be coming back home; to know that the medicine you are giving her might give her all sorts of side effects that would be horrific in themselves. And to know that Rachel just might have to go through it all again. This all takes it's toll, we live with it every day, have done for more than 2 years. Emotional stamina, ability to control emotions - it is a constant struggle. On speaking to a lot of people who have been in the same situation, either as sufferer or as carer, tears and anger are bubbling barely below the surface. For instance, I know someone - an extremely intelligent, well-educated chap - who stole a chicken from a supermarket because he just could not handle the fact the shop assistant wasn't doing her job! Ridiculous behaviour but I COMPLETELY understand his uncontrollable and irrational anger, I have it all the time!! As do many others, I have discovered. Another Mum told me recently that she did have a nervous breakdown as her child went onto maintenance. (Her daughter is now nearly 3 years off treatment, things are looking good for her). These things are completely normal for people in our situation, it is a very odd thing to observe the changes in yourself, but a comfort to know that actually we're just plain old normal.

Anyway, we're doing just fine, really - we are very lucky to have people around us who DO understand, and who support us unconditionally and with compassion.

And - we had a FAB weekend in Tuscany!!!! Life is good.

Thursday, May 24, 2007 10:22 AM CDT

Short message today - neuts at 1.3 so still falling but still on full chemo for the next week. Finish date is 21st August, which is actually rather inconvenient because the Hickman line doesn't come out until 2 weeks after the final BMA/LP on the 21st, which means that Rachel will be back at school for a week, then back into hospital to get the line out. I would much prefer that Rachel started her new school year with a clear slate, ie no treatment, no wig! and no Hickman line. The reason for waiting 2 weeks is that they want to make sure that the final bone marrow is clear before removing the line. Part of it is a bit of superstition ie not wanting to tempt fate. So, I am not sure what to do, ie whether to request that the line comes out early, which is perfectly possible. Paul and I will have a think over the next few weeks, we just want to do the best we possibly can to help Rachel's rehabilitation into the world of 'being normal.'

Sunday, May 20, 2007 12:25 AM CDT

We've had a 'different' week in the Smith household, with Paul being in China and Isla doing her SATS. Both came through the week with flying colours - Paul's business is going from strength to strength, and Isla sailed through at level 3 (KS1), as we knew she would. It knocked her back a little bit, though, because for the first time she encountered things she couldn't actually do. That hadn't occurred to me beforehand - until now, all of her testing has been done on things she has learned, whereas the level 3 sats pushes towards things they haven't yet learned, and it took her by surprise.

I had a bit of work to do, too, this week, presenting a parent's view on the issues facing us, and our prioritisation of those issues, when our child is diagnosed with cancer. There will be more on this in due course, but the basic story is that the implementation of NICE guidelines is now focussing on paediatric oncology, so the NHS trusts are having to address the issues. AS I said, more on this in future, but I welcomed the invitation to participate in the process on behalf of the parents in East Midlands.

As for Rachel, well, she is sparkling. Neutrophils this week were 1.6, so still on full chemo but we'll see what happens this next week. She is doing really well, and we just can't believe that it is only 3 months until she finishes treatment. Neither can she, it is not something she can relate to at all.

Wednesday, May 9, 2007 3:31 PM CDT

Rachel's bloods huge this week after 2 weeks off chemo and a week on half dose. Neuts at 7!!!!! eek! she is on sparkling form. Not so much else to report really - they are enjoying their tennis on sunday mornings, piano lessons not quite so much!!! and they just love school. Rachel hasn't done so much ballet recently, because of extended Easter holidays and bank holidays , but she adores it, particularly I think because it is the one thing that she has to herself, ie Isla doesn't do it any more.

Like many families everywhere we are quite shattered by the events in Portugal. For a variety of reasons, it all feels extremely close to home; we seem to have many threads connecting us to the McCann family and it is another one of those times when I can't help but feel relief that Rachel 'only' has leukaemia. It could be so much worse. It also reminds me vividly of the first week of Rachel's diagnosis, also a week before her 4th birthday. I know how we felt at that time, and I also know how much we appreciated, and gained strength from, the love and support from our family and friends, but also from strangers. With that in mind, I just want to point out that there is an email address for people to send messages of support to the family if they feel so inclined: it is mccannfamily@markwarner.co.uk and I believe they are able to access the emails directly.

Otherwise, it seems a long time since I nagged people to GIVE BLOOD!!!!! I do it every 3 months, I would do it more if I could. Please don't put it off, just do it.

That's about all folks. The girls are gorgeous and loving as ever, we are so lucky.

Wednesday, May 2, 2007 6:59 AM CDT

Rachel’s bloods are back up today so she is back on her chemo but on 50 per cent dose. Steroids starting today too, so we’ll have Little Miss Grumpy back for the bank holiday weekend. We don’t have much planned, but we do so much running around that it is lovely to be at home together for a few days, especially if the weather is good.

The visit to the dentist was interesting – he scratched his head for a few moments, and said that he really had no good explanation as to why Rachel had a wobbly molar, and he wanted to x-ray it to get a better look at what was going on. The x-ray revealed that Rachel’s second teeth are well on their way, 4 years early!! Of course the natural reaction is to question whether it is the chemo/steroids/etc that has caused this early development. However, if anything, children being treated for leukaemia tend to suffer from inhibited growth, not accelerated growth. So it is very unusual, but the only worry is that her little mouth won’t be big enough for these huge adult teeth growing in at age 6. She’s quite big for her age (today at clinic she was measured at 118.5cm), which is helpful, but our lovely dentist will monitor her progress closely.

We have 3 more clinic appointments, at end May, end June and end July. Then ‘end of treatment’ will be w/c 20 August, where they do a diagnostic lumbar puncture and a bone marrow aspirate for analysis and MRD testing. Assuming all is clear, her Hickman line will come out 2 weeks later. We need to have a think about summer holiday plans but we have such nice trips planned for later in the year that at this point in time we’re not going to get too stressed about if/where we have a summer holiday.

Thursday, April 26, 2007 6:42 AM CDT

Apologies for the lack of updates since we got back from skiing. I came back with a cricked neck (result of trying to stifle a sneeze…!) which made sitting at the pc to do emails/updates uncomfortable to say the least. So I didn’t do any! The girls came back with a virus (temperature/sickness/headache/diahorrea), which resulted in Isla being off school all week, but Rachel seemed to cope with it a bit better and only missed 1 day. She had a temperature of 37.7 on holiday, but after a sleep (and a panicky call to Ward 27!) she bounced straight back, albeit with severe diahorrea which lingered for probably 5 days. She is fine now although has been neutropaenic for the second week in succession now (neuts at 0.36 this week, 0.49 last week). These bloods are probably just saying that the neutrophils have all been used up to fight the virus. So we just need to remain vigilant whilst she’s neutropaenic but, being off chemo completely, she is in terrific form. One thing which is ‘concerning’ is that she is losing one of her back teeth. Whilst she has lost her front teeth, all are growing back beautifully and she’s just a bit ahead of the game. However, the back tooth is less easily explained. Fortunately both girls are booked in for their regular check-up tomorrow anyway, so I can ask the question then.

Oh lots of things going on at the moment. Planning some lovely holiday for later in the year, more of that in due course. In light of that, we’re selling Minnie because she has done her job over the past 2 years, and I am sure our neighbours will be delighted not to have the motorhome spoiling their view any more! Meanwhile, the girls LOVED skiing, they did really well and wanted to stay another week! Isla even said that she preferred the ski holiday to the summer holidays in Greece! But I think she is just a little girl who lives for the moment...! Our hotel was on the piste, literally! which meant that the girls didn't have to carry skis at all, they were able to ski to and from the deck, and when the lifts closed they played on the piste, sledging and making snow-things. It couldn't have been better, and both the snow and sun were perfect. It was a bit slushy in the afternoon, but the children couldn't ski all day anyway so it was never an issue.

I am hearing that there are moves afoot to consolidate the paediatric oncology departments in the East Midlands, whisper being that Ward 27 may close and the service be moved to Nottingham, which will cover the East Midlands region. Nottingham currently doesn’t even have a children’s cancer ward. What is going ON? Good old Labour, huh? It is a nonsense. Health service is cracking at the seams, with the government pouring money into reorganisations/management/consultant pay, and taking it away from the service on the ground. They won’t even pay for cleaners in the hospitals, and they wonder why there’s a problem with cleanliness in hospitals. The children’s community service - which has been responsible for allowing Rachel to be at school much more than we could have hoped: when her bloods are taken; when she’s on IV antibiotics; when on some of the IV chemo (cytarabine, 8 rounds of 4 consecutive days on the first year) which was done at home – are working on 60taffing levels because they are NOT ALLOWED to get cover for maternity leave, and not allowed to replace staff if someone leaves. IE it is a COST issue. Grrrrrrrrrrrrrrrrrrrrrr.

OK rant over. The sun is out, in 4 months Rachel will have finished her treatment.

Thursday, April 5, 2007 1:02 PM CDT

We had a few days in London earlier this week, and the girls were very happy being 'on tour' seeing friends and cousins. I went to a Cancer Research UK fundraiser on Monday night, which was really wonderful ('Art for Life' at Christie's), and we went to the Science Museum on Tuesday.
The girls are getting excited about their ski holiday now, but the sunny weather is causing a bit of confusion regarding what to pack in their suitcase! All of a sudden, snow and skiing seems a world away, when there are summer dresses to consider! However, they have thoroughly enjoyed their ski lessons and they are excited at seeing Ollie and Ella, especially since it is Ollie's birthday whilst we're away. They're also a bit worried about the Easter Bunny finding them in Meribel on Sunday. I feel fairly confident that the Easter Bunny will not let them down...!!

Otherwise, Rachel is back on steroids and the shadows under her eyes tonight already bear witness to this. She finishes the 5 days on Sunday night, so at least when she wakes up on Monday morning she will be feeling much better, albeit that the flight on Sunday is likely to be tortuous for us all. Her bloods remain good so she is on 100% chemo for 2 weeks now, since we can't get bloods done next week. So, here's hoping for a successful and uneventful week.

The community play therapy person came to see us today. She will work with Rachel over the next few months on self image, to try to help her get rid of the wig. Rachel's hair is thick, long(ish) and curly, but she still will not be seen without her wig by anyone other than Paul, Isla and myself. I am doubtful it will make a difference but I am keen to try anything that might help. We know Rosemary from early days in Ward 27 which definitely gives her a head start. (sigh).

Sunday, April 1, 2007 3:25 AM CDT

Recently, Lucia (she often leaves messages in Rachel's guestbook, she also has ALL) sent through a photograph of a funny blister on her arm. It looked like a burn, and it blistered over etc, just as you would expect from a burn, but she knew she hadn't actually burnt herself. It turned out that it was a splash of vincristine. I found it quite shocking, because it is one thing knowing that these drugs are 'vicious' but it is quite another when you see physical evidence of how acutely toxic they are. At clinic, Lucia, and Rachel, and all ALL children on maintenance, get their monthly IV vincristine - but I think vinc is widely used in treating many types of cancer too.

With the girls having now broken up for Easter, we have a busy few weeks ahead. We are popping down to London for a couple of days (leaving poor Daddy at home!) to see cousins/godparents. Then it is clinic on Wednesday, and on Thursday, Rosemary from the community play team is coming out to see Rachel for the first of a series of visits to work on her self-image, to help her get rid of the wig. I'll try anything! Rachel now has an absolute mop of curly hair. Unfortunately it kindof sticks straight out and up! The girls also have a final couple of ski lessons before we go away next Sunday. I'll update again before then.

Friday, March 23, 2007 7:51 AM CDT

All went well yesterday with the IT MTX. Rachel wasn't going into a proper sleep so they had to give her extra anaesthetic, which meant that she didn't wake up as quickly. Normally she is back at school by the time their lunch hour is over at 1pm, but this time she wasn't back until 2pm but she still wanted to go. A few days ago, she asked me what happened when she had her 'sleepy medicine.' This is the first time she has ever asked me, and she was perfectly satisfied with my reply that they put medicine into her back. They all have a chuckle at Rachel when she goes in, because she is the only child who comes in for the general anaesthetics who is wearing her school uniform - ie no-one else goes back to school afterwards. Whatta girl!

Can't think of anything else to report at the moment. She's still on 100hemo this week, although we don't give her the weekly mtx (oral chemo) this week because she has had the intra-thecal mtx yesterday.

Friday, March 16, 2007 9:26 AM CDT

After the steroids, Rachel's bloods continue to be high. The penultimate IT MTX (for which she has a general anaesthetic) is next Thursday, March 22nd. Usually she wakes up feeling extremely hungry, and once discharged, goes straight back to school in the afternoon.

The girls went off to school today wearing their red noses and various bits of non-school attire! We have lots of nice things planned over the next few weeks, starting this weekend with a visit to 'Mary Poppins' and some London sights they have been learning about in history.

Wednesday, March 7, 2007 2:36 PM CST

Bloods up again today, with neuts at 2.3, hb at 11.3 Rachel seems to be tolerating the chemo much better than she was a few months ago. This isn't sinister in any way, although my personal feeling is that I am happier knowing that the chemo is killing off as many blood cells as possible. However, the flip side is that her bone marrow appears to be working beautifully, producing nice and healthy blood. Who knows what's really happening in there, certainly not me, but as those of you who have children with cancer will know, it is a constant and inescapable mind game.

She is due another lumber puncture for intra-thecal chemo in 2 weeks. The penultimate ITMTX before her treatment ends! We saw a girl today in clinic, who has been 2 full years off treatment and is still free of leukaemia. She's on 3-monthly check-ups, and hoping to be moved to 6-monthly check-ups soon, having now passed the 5 year 'event free survival' marker (ie 5 years from first getting into remission). This is where we hope Rachel will be in 3 years' time.

Sunday, March 4, 2007 11:22 AM CST

The visit to the wig-maker on Thursday went much I could have predicted. Rachel completely clammed up, she just climbed onto my knee, clung to me and would not speak. I had to take her out of the room, and ask her in private what she wanted to do. Unfortunately, she just wanted to go home! Well, as I said, her reaction is no great surprise. However, I will continue to talk to her about it, and she may come round. Or she may not! The problem, is, Rachel is just such a determined little lady, and when she makes her mind up about something it is not so easy to change it.

Meanwhile, Isla, Paul and myself have had truly hideous colds over the past week. Rachel, however, has thus far managed to avoid catching it, and I wonder if the antibiotics she is on for 2 days per week (for 2 1/2 years...) is helping keep it at bay. It is clinic week this week so it is reassuring to know that her bloods will get a boost with the steroids.

The girls had their third ski lesson on Friday. They are thoroughly enjoying them, and it bodes well for our ski trip in April. Another couple of lessons and they'll be learning to turn, which will be a good base for them to start from for their week in ski school. Isla does as she is told, and is doing well, whilst Rachel slightly ignores what she is being told and points her skis straight downhill .......just like her father, goes as fast as she can and doesn't worry too much about how she's going to stop!

Wednesday, February 28, 2007 9:31 AM CST

Rachel's bloods have rather interestingly crept up in the past week despite being on 100% chemo. So, she remains on 100% for the next week, ahead of the next clinic appointment on Wednesday March 7th. All is well after a busy February and a few little bugs in the household (both gastric and heavy cold).

Meanwhile the local newpsapers have been following up on her progress, with 2 photographers coming out to see her in the past week. The Melton Times isn't out until tomorrow, but here is the link for the Leicester Mercury article:
http://www.leicestermercury.co.uk/displayNode.jsp?nodeId=132407&command=displayContent&sourceNode=132390&contentPK=16718157&moduleName=InternalSearch&formname=sidebarsearch
- which we have had to hide from her because she doesn't yet know she is going to see a chap about her hair tomorrow! I think she will be horrified when she finds out, but hopefully interested to see what her options are. I will let you know!

Wednesday, February 21, 2007 4:06 PM CST

Bloods ok, Rachel remains on 100% chemo and is very well. She seems to have grown at least another centimetre in the last 2 weeks! I really like it that she gets weighed and measured at clinic once a month! She was 116cm tall and weighed 24.7 kg on Feb 7th, which was exactly 1 cm taller than the previous month although the weight was more or less the same. Next clinic appointment is on March 7th.
Not much else to report this week, little Miss is too busy with writing thank-you letters to get into too much mischief.

Sunday, February 18, 2007 7:01 AM CST

Well, Rachel is now 6 years old and 1 day! She is very pleased with herself, and is insisting on keeping the bit on her birthday cake that says 'Rachel' until all the rest has gone! Yesterday's party went very well, although Paul was a bit peeved that he only got through about one third of the games he had planned! We were both exhausted, though - it is tough, having sole charge of 20 excited 5/6 year olds! Rachel had a wonderful time, though, which is the only important thing. She had been hyper-excited in the days leading up to her birthday, but when Paul remarked that she had been in hospital on both previous birthday, I suddenly realised that she probably can't remember her last birthday outside hospital. It's moments like that, which catch you unawares, and the emotions just surge up, but you have to beat them back down again and carry on without further reference. Poor Rachel, but she just does not complain, ever.

Meanwhile, her Hickman line has become unclamped 3 times this week. Fortunately I can flush the line at home, avoiding a trip into hospital, but it isn’t ideal because of the increased risk of infection in the line. I have also finally called the charity called Little Princess (www.littleprincess.org.uk) to ask about the possibility of hair extensions for Rachel. They were wonderfully helpful, and I am taking Rachel to meet their chap on March 1st. She doesn’t know anything about it, so please, make sure no-one gives the game away. I know that if I tell her in advance she will refuse to go, because the thought of anyone seeing her without her cap is too terrifying for her. But if we just turn up, she will deal with it better, without any anxiety in advance. Even hairpieces might interest her, since her hair is now long enough for that to be an option.

Finally, a huge THANK YOU to everyone who sent Rachel birthday wishes yesterday, be it cards, ecards, phone calls, presents or whatever. You all helped to make her birthday very special for all of us.

Wednesday, February 14, 2007 3:36 PM CST

We had a terrible night with Rachel last night but the good news is, it is a ‘normal’ illness and because her bloods are good, her body dealt with it as any of us would. She was violently sick about 9.30pm, and that continued until about 1am. I didn’t bother giving her her chemo, she would only have vomited it up. She dealt with it brilliantly, didn’t get upset, just knew she had tummy ache and was being sick, but she kept drinking water. She has been a bit wobbly today, but no temperature and nothing that particularly concerns me. No chemo again tonight, because her tummy will be tender, but hopefully back to normal tomorrow.

Meanwhile, the entertainer we had booked for her party on Saturday has cancelled because he has bronchitis. She is really disappointed, we had a few tears tonight - but won’t accept a replacement other than Daddy! So poor Paul is now having to entertain 23 6 year-olds on Saturday afternoon! Lucky Daddy!!

We went to see Cats today as the half term treat. It was really fantastic. I have to confess to having seen it 3 times before (although it was never a particular favourite of mine?!) but I enjoyed it SO much more today than before. I think it was a combination of being with children who were much more in awe of the proceedings, and also the theatre being smaller than the Covent Garden one, which meant that the cast of cats interacted with the audience much more – or so it seemed – and the girls were thrilled.

I could say so much more about a whole host of things – but I will restrain myself with this: what on EARTH are the government doing, reducing the blood banks from 12 to 3? WHY? It makes me feel sick - anyone who has received a blood transfusion will know that they probably would not be here today without it. What if they can’t get blood to the right place in time? What is happening to the NHS? Ward 27 has been closed for a couple of days this week, and the staff farmed out to other wards. When Rachel got sick last night, I didn’t have anyone to call. Had I been seriously worried about her, all I could have done was call 999, knowing the ward was closed. This is all because of budget cuts – after April, this situation probably won’t happen because it is the start of a new financial year. It frightens me. I hope Gordon Brown finds himself in the same situation if his son becomes unwell in the middle of the night. At a weekend. Last time Rachel was admitted (neutropaenic) with central line sepsis, no-one was taking her obs. Well, I was on top of it – but no-one else on the ward seemed to realise how critical she was. Because of a ban on overtime and bank (i.e. temp) staff, the ward were barred from employing the experienced staff they relied on – instead, they had to take on senior staff from other wards who were inexperienced in paediatric oncology, and who were in tears before they came on duty because they KNEW they were not equipped to deal with these critical care patients. Scary. And I know we are getting really good care from LRI compared to some of the really scary stories I hear from other parents.

Well, enough of that – Rachel is great, we are so thankful, and she’ll be 6 on Saturday. How good is that?

Wednesday, February 7, 2007 3:35 PM CST

Excitement is building in the Smith household, with Rachel’s birthday in 10 days. Of course, this means that the anniversary of her leukaemia journey is also looming – it will be 2 years ago on Sunday, to be precise. She can’t remember not having leukaemia now, other than the odd memory of an occasion pre-leukaemia, but even those memories are not associated with being healthy and disease-free.

In clinic today, there was another little girl, aged 11, who was diagnosed with ALL a few weeks after Rachel, and who has been on the same treatment protocol. Today she was sporting a broken arm, which happened on Sunday: the family went ten pin bowling, and as she took her arm back, preparing to roll the ball down the lane, her wrist snapped. Just like that. Prolonged use of steroids is the cause, and it looks like she will have to stop taking steroids for the remainder of her treatment. The side effects of the treatment, as I have frequently said, are numerous and, frankly, pretty scary. We just don’t think about it, and instead our coping mechanism is to focus on ‘today.’ In reality, we are just thankful that Rachel has made it to the 2-year mark – now there are just 27 weeks of treatment left, but 3 years before we can think about ‘cure.’

So back to today: her bloods are fine so she is back on full dosage of chemo with steroids starting today for 5 days. Rachel is on such good form at the moment is it is fantastic, and she has so far managed to avoid all of the illnesses doing the rounds at school at the moment. So much so that we have had the confidence to book a ski holiday at Easter! Although I must double check with the consultant that it is ok to go because I forgot to ask him today. I just cannot wait to see Isla and Rachel on the slopes, they will both absolutely love it!

Wednesday, January 31, 2007 10:49 AM CST

Neuts slowly dropping (1.1 today) and hb rising (12 now - 'normal' levels) so Rachel is back on the full dose. I guess that means that by next week her bloods will be flat, but it is clinic on Wednesday so she'll be back on the steroids. Oh it comes round quickly! She's very well at the moment, and is very much looking forward to her birthday in a few weeks. Which means it is almost 2 years since her diagnosis. And only 28 weeks to go.

Wednesday, January 24, 2007 10:36 AM CST

This weeks chemo remains at 75% of full dose - whilst the bloods have fallen from last week, they have not crashed. With neuts at 1.28 (from about 5 or so last week after the steroids), it seems that 75% is doing the job, insofar as the drop has been quite significant, implying that if she had been on 100% she might have been neutropaenic and hence off chemo completely for a week. By keeping her on 75% the aim is to get more chemo into her overall, rather than see-sawing each week. This is bearing in mind her overall dosage has recently gone up because she is a growing girl!

Today's snowfall caused huge excitment chez nous. The girls dashed back upstairs to get dressed so they could go outside and make a snowman - before breakfast!! NOT the normal morning behaviour, I assure you! Sadly most of it has gone now, but the heavy skies I can see might mean another fall overnight, although it is not forecast.

Keep warm, everyone!

Thursday, January 18, 2007 2:58 PM CST

Rachel's bloods are huge this week, but she's only on 75 per cent chemo, as they want to avoid a quick up followed by a quick down. Steroids artificially boost the bloods, so when 3 lots of chemo are given at once (vnc/mtx/6mp) it can cause them to crash, which is what has been happening over the past few months. So, we increase gradually and hopefully we get more chemo into her. And the leuky stuff gets well and truly ZAPPED. We hope.

Paul is away for a few days, skiing. The girls said tonight, 'It's not the same when daddy's not here' which is absolutely right - especially with the wind howling round our house at night! I hate it when he's away too, he makes us all feel safe when he's here, and a bit vulnerable when he's not. Awww. Meanwhile, I nearly got stuck in London today, facing the prospect of not getting home tonight for my girls was horrible. But thank you H&J for looking after me and my girlies today!xx

Wednesday, January 10, 2007 5:33 AM CST

Bloods back up again this week after a week on zero chemo. However, because the bloods have been so volatile recently, she's just on 50% this week, to reintroduce the oral chemo gently. She had IV chemo today, and starts on the steroids tonight. All in all, Rachel is tolerating the treatment very well - it's quite common for the children to have to stop bits of the treatment by this stage because of side effects. Most cancers have treatment lasting for months, not years as is the case with leukaemia, and it seems to be that the sheer length of time these poisons are being pumped in, increases the risk of any of a myriad of side effects, affecting joints, internal organs, goodness knows what. For example, prolonged use of steroids can cause avascular necrosis, so as soon as Rachel starts to complain of hip pain, or shoulder pain, we'll whisk her in to be checked over. But, as I said, she seems to be tolerating it all fairly well for now.

Not much else to report, really. The girls are happily back at school and are growing steadily in every way. When I took Rachel back to school this morning after clinic, Isla came out to meet her and took her by the hand into the classroom. She is becoming such a grown-up little girl, and she does so love her little sister. Meanwhile Rachel is now 116cm, having grown 1 cm since last month (she gets weighed and measured each month at clinic, to monitor growth and drug dosage) and gone up a shoe size since last term. The 2 year anniversary of her diagnosis is in a few weeks - which feels both like a lifetime ago and only a moment ago. But we're glad to be here.

Wednesday, January 3, 2007 8:28 AM CST

Well, Rachel's bloods are extremely upsy-downy at the moment! Neuts back to 0.3 which means firstly no chemo, and secondly be vigilant re coughs/colds etc. I am so glad this has happened after our New Year break, because there were bugs galore amongst the children we spent New Year with. As it was, we all had a carefree, lovely time.

So, school tomorrow for the girlies - they are in a dilemma insofar as they are both excited to be going back but equally they know that the past few weeks have been filled with lots of fun and treats, so they realise that is coming to an abrupt end with the start of school!

Happy New Year everyone.

Thursday, December 28, 2006 3:46 PM CST

Well, the girls have had a wonderful Christmas. Santa managed to get down the chimney with lots of pressies for them - Rachel was awake at 5am and was very funny, firstly edging round the top of the stairs, looking down to see if she could maybe see anything, and then being very noisy, ensuring that the rest of us were awake. We spent Christmas Day with Paul's family, and on Boxing Day flew to Scotland to visit my family. Hence the children have been thoroughly spoiled, but they have been gracious and appreciative with it, not greedy, which is lovely. New Year sees us in Devon with friends (both girls' godparents and families) so that will also be a lovely few days.

Meanwhile, Rachel remains well. Her bloods are great so she is back on 100% chemo this week. Next clinic is Jan 13th so we have 2 weeks of sparkling Rachel before we get Steroid Girl back .....life on maintenance is so much less of a rollercoaster than the first half of the treatment, and it is difficult for me to write anything more gripping than updates which could more or less reflect everyone's family life. Which is a relief of course.

This time last year, we really wanted to get 2005 over and done with, with lots of horrid things having happened over the year. We looked forward to 2006 with a real sense of optimism and positivity, and to a huge extent that is exactly the kind of year we have had. We can ask no more of 2007. I hope to be writing this update next year with Rachel free of disease, free of treatment, free of her Hickman line, and free of that blessed wig! Happy New Year.

Sunday, December 24, 2006 4:11 PM CST

Christmas Eve, and the girls are SO excited! They went to bed at 6.45pm, of course haven't been able to sleep. It is now 10.10pm - Isla is wide awake and getting upset that if she doesn't get to sleep, Santa won't come! Rachel seems to have dropped off now hopefully, having been awake 15 mins ago.

So all is well here, Happy Christmas everyone!

Wednesday, December 20, 2006 12:18 AM CST

Well, here we are with a few days to go until Christmas. We had a wonderful few days at Disney Paris - actually, if truth be told it was a few days of stress-max for Mum + Dad with steroidgirl doing her best to be awkward when the opportunity presented. Big sister Isla was stoical in the face of such obtusity from her much loved little sis, and we got through it with a lovely video diary. Seriously, though, the girls had a wonderful time, meeting all the characters and going on the best rides time after time, courtesy of this magic little blue badge. It seems to me that Disney as a whole embraces people with disabilities, ensuring superb facilities and access to all rides, and welcoming the disabled as priority patrons rather than inconvenient customers. But the blue badge is one step beyond that - it is a VIP pass only issued to children with life-threatening conditions (ie 'merely' 'disabled' doesn't qualify...) and as such these children are truly treated as VIPs. It is amazing, and so touching, one one sense it reminds you just how ill your child actually is. What I mean is, Rachel's illness is part of our normal family life now - we have lost the sense of shock. So it is, in a way, very odd when she gets treated like a sick child - which clearly she IS, but which we don't consciously act upon on a day to day basis.

Moving on - blood results today show that Rachel's bloods have stayed steady this week, having been on 75% chemo this past week. So, with her LP (IT MTX) tomorrow, and with Christmas looming, they have left her on 75% to hopefully avoid a dip over Christmas, and we'll see what next week's bloods show. We'll be in hospital by 8.30am tomorrow for most of the day but judging by the local papers we seem to have missed all the celebrity Christmas visits to the childrens' wards. Oh well, can't have it all, all of the time?!!

Thursday, December 14, 2006 3:07 AM CST

All is well, Rachel's bloods are back to 'expected' levels this week, and with clinic yesterday that means steroids again for 5 days. She's only on 75% chemo to be on the safe side, because there are so many bugs around at the moment. With so much going on over the next few weeks, we don't want her bloods too low. Lumbar puncture (for IT MTX) was due on Dec 26th, but we have brought it forward to Dec 21st (next Thursday).

We're off to Disneyland Paris tomorrow which is VERY exciting, it really will mark the start of Christmas. Tonight is the school production, Rachel is a kangaroo! and Isla is a rainbow I think (she's not telling....). Theme is Christmas around the world, in case you were wondering..! They are missing tomorrow's performance, of course - I know they will be a bit upset, but we're just hoping that the excitement and surprise at going to Disney will outweigh their disappointment!

Tuesday, December 5, 2006 8:16 AM CST

Rachel made front page of the Leicester Mercury yesterday! (Well, the Rutland and County edition, P13 on the City edition). The story was the Ride for Rachel, and there was a lovely photograph of Rachel on her bike. We went to Belvoir Castle yesterday, to officially 'hand over the cheque' to Macmillan, the Duchess of Rutland having kindly offered Belvoir Castle as the venue. We had one photographer turn up! but the Duchess is currently being shadowed by a camera team who are filming 'Diary of a Duchess' for USA television - so the event was filmed for that programme. Paul and Martin were interviewed as was Rachel Herrick, the MacMillan fundraising manager for our area. The programme will be going out to 95 million viewers apparently, in the autumn next year. It was all very exciting! Check out the photos, I've posted some from yesterday.

Otherwise all is calm and quiet on the Rachel front....ah, famous last words, huh?! More specifially, my sister and family were staying with us this weekend, and no sooner were they home on Sunday night than Craig developed shingles....eek! But it is not airborne like chicken pox, and Rachel has retained some chicken pox immunity in her blood anyway, so hopefully it won't be a problem. SO DON'T WORRY, CHRISTINE!!!

Wednesday, November 29, 2006 6:49 AM CST

Well, 2 weeks with no chemo followed by the blood-boosting steroids, Rachel's blood counts are huge today. Neuts 5.3, white cell count 7, platelets 238, Hb 10.3 - marginally bar Hb, these are 'healthy person' counts and probably the highest they have been since pre-leukaemia. However, she is now back on 100hemo so it won't last long! but that's good, we need the chemo to be zapping any remaining leukaemic cells floating around her body.

Yesterday was the echocardiogram, and all seems well, so that is a good tick to have in the box. Apart from Rachel's heart murmer (which gets loud when her heart is working hard eg 2 weeks ago), chemotherapy potentially damages internal organs, including the heart, so an annual heart scan is on the cards for the foreseeable future at least.

Friday sees Isla's 7th birthday, so the excitement is gathering in our house. Yesterday, after hospital, Rachel wanted to buy a present for Isla so we went shopping for a pressie and a cake, which Rachel chose. It was so sweet, they really love each other - Isla keeps hugging Rachel and telling her how cute she is, which is starting to get on Rachel's nerves a bit!

Wednesday, November 22, 2006 5:50 AM CST

It seems that Rachel had 2 bugs, a different one in each lumen - no wonder she was so unwell last week! But the teicoplanin seems to have zapped them both, since negative cultures have already come back. More cultures were taken today just to be sure, but it all looks fine. Wish us luck with steroid girl over the next week, she's probably going to feel quite grotty, having been off all chemo for 2 weeks now. 3 lots of chemo today ( IV vinc, oral methotrexate and mercaptopurine)plus starting the steroids, she will feel a difference.

Monday, November 20, 2006 4:56 PM CST

All is well with Rachel at the moment. The community nurse is coming out each day to administer the IV teicoplanin, and on Wednesday Rachel is due in clinic where she will start up on steroids and chemo again, and they will take bloods from her Hickman line to see if there is anything still lurking there. Results by Friday, general rule is, no news is good news. Meanwhile, being off chemo for 2 weeks now is starting to show - ie she is SO happy and cheeky and bouncy this week, it is lovely. The steroids and chemo on Wednesday will put an abrupt halt to that happy behaviour, but it is great while it lasts.

When You Wish Upon A Star are desperately trying to raise funds to pay for this year's extra flight to Lapland in December. For some of these children, it will be their last Christmas. If any of you out there are vaguely thinking about charity donations at Christmas, this is a great charity to consider. Better still, get a team together to do their 'Santa Run' and gather some sponsorship - 10th Dec in Edinburgh, 17th Dec in Nottingham. See the link below.

Meanwhile we have been having an art exhibition at home for the past week. We've got about Ł250 for Leukaemia Research (we have about Ł75 for the Lapland charity too, not from art exhibition though). 4th December is the date we are finally handing over the balance to MacMillan from this year's Ride for Rachel - formal handover at Belvoir Castle, hopefully with a few press there to take snaps of a giant sized cheque! Will post a photo if we get one.

Thursday, November 16, 2006 7:20 AM CST

Well, things are looking much brighter today. Antibiotics were changed to second line antibiotics yesterday afternoon (teicoplanin and ceftazidime), and clearly these have been working better. The extreme temperature spikes have disappeared,