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Wednesday, July 14, 2010 4:34 PM CDT

Today was clinic with Dr Madi, the amazing, clever senior consultant who has delivered above average (compared with UK average) results for children with leukaemia in the Leicestershire area. He said: from now, you go to the 'late effects' clinic. This came as a bit of a bombshell, since it means that Rachel really is being discharged from the 'look out for leukaemia returning' clinic. There were a few tears today, a real 'omg it's really over' moment.

Meanwhile, I'm still doing 'stuff' for Leukaemia & Lymphoma Research, and for East Midlands childrens cancer services. Please get in touch if you want to get involved, or if you need information and/or support.

Thursday, April 1, 2010 3:46 PM CDT

Is it really over?

This week (ish) marks the '5 year remission' date. In theory, this means that Rachel is as 'at risk' of having leukaemia as the rest of the population. We had her at A&E a few weeks ago, bit of a short term panic. The docs gave her the full MOT 'given her history' and all was well.

I think it actually might be over now, and we might be able to go back to being a normal family. I know a lot of you might wonder what on earth I'm talking about, but those in our situation will know exactly what I mean. Our lives will never be the same - we have much more of a 'seize the day' mentality now, and I'm pretty sure we have a much closer relationship with our children than would otherwise have been the case. We also will always do whatever we can for Leukaemia & Lymphoma Research, because those people who lost THEIR child over the past 50 year years have given us our children back through their relentless fundraising to find a cure so that other families won't suffer as they have. We can never pay them back, but we can take the baton from them, thank them and reassure them that their dedication to 'the cause' has been a glorious success.

Sunday, February 7, 2010 2:42 PM CST

We have now reached the 5 year anniversary of Rachel's diagnosis. In about 7 weeks, it will be the 5 year anniversary of her remission from leukaemia. Our beautiful girl is a source of constant joy.

Sunday, January 24, 2010 12:10 AM CST

Leukaemia Research have changed their name to Leukaemia and Lymphoma Research. They aren't doing anything different, but people affected by lymphoma don't really realise that the UK charity which is dedicated to finding cures and improving treatment for lymphoma, is, in fact, Leukaemia Research. A few facts:

1. Leukaemia is the most common childhood cancer
2. Lymphoma is a blood cancer, just like leukaemia
3. Lymphoma is the blood cancer most prevalent in the under 35 age group
4. Blood cancer is the disease reponsible for most deaths in the under 35 age group in the UK
5. Myeloma is the blood cancer which mostly affects the over 50 age group.
6. Leukaemia and Lymphoma Research is dedicated to finding cures and improving treatments for all blood cancers and related blood disorders.
7. Only 3 in 10 adults survive a blood cancer diagnosis. Yes, that's right - 3 in 10 adults.

Anyway this isn't a party political broadcast on behalf of Leukaemia and Lymphoma Research. As I have always tried to do with this blog, I am just sharing what I have learned along the way. Most of you reading this will hopefully have learned at least one thing you didn't know already, which in itself makes my efforts worthwhile.

Wednesday, January 20, 2010 11:14 AM CST

Royal Garden Hotel in London are supporting Leukaemia Research in 2010, and have offered this to supporters:

London’s Royal Garden Hotel is offering a special £50 room rate to help celebrate our 50th Anniversary. The 5* luxury hotel in Kensington is offering Superior rooms at this incredible price, providing that guests donate a minimum of £10 to Leukaemia Research. This represents a saving of up to 80ff their normal rates.

To take advantage of this offer all you need to do is sign up for the Royal Garden Hotel e-newsletter at www.royalgardenhotel.co.uk and on the 26th Jan you will be sent details on how to book.

The offer is valid for stays between 26th January - 28th February 2010*, but you must book before 5 o'clock on Friday 29th January 2010 and the offer is only available online.

* Terms and conditions apply. Subject to availability. Maximum stay of one night. The additional £10.00 will be added to your bill upon checkout. Price excludes VAT and breakfast

Booking Period: 26th January at 12.00 - 29th Jan at 17.00.
Stay Period: 26th January - 28th February 2010
Not applicable on Sat 13th February 2010

If you need a hotel in London during that time, it would be great if you could support Leukaemia Research at the same time. Meanwhile, look out for an announcement on Friday ...

Tuesday, November 10, 2009 5:17 PM CST

Hi I just thought I would add a new update. No particular reason, all remains well here. They are both on great form, and Isla is ready to take on the world as her 10th birthday approaches. Rachel, on the other hand, is still very needy, insofar as as long as I am with her, she is happy, but if I'm not around, she gets very anxious. If anyone feels like leaving a guestbook message, please do - it is really only me these days who checks, but every time there's a new message it makes my day!!

I ought to post some new photos, will do it soon, promise!

Monday, September 21, 2009 9:28 AM CDT

It has been a while since I updated, so I thought I would share an update from Rachel's treatment trial.

There have been some preliminary results from the trial, which was called UK ALL 2003-2009. The most pertinent is that the 'cure' rate for the low risk (low MRD) children has been 99%.

High risk isn't so clear, because they have had to extend that part of the trial for an extra year (SUBJECT TO FUNDING !!! yay Leukaemia Research!) due to low uptake on the high risk randomisation. You may remember that Rachel was high risk (high MRD) and her treatment protocol was increased as a result. The indications are that high risk is coming in at around the 90% survival mark.

These results correspond with other similar trials overseas, and the long and the short of it is that low risk ALL looks curable, albeit with a long treatment time (3 1/2 years for boys, 2 1/2 years for girls). High risk isn't too far behind, but with a more vicious treatment regime.

I can speak with authority when I say that research into ALL is as vigorous as ever, because the treatments are still incredibly barbaric and need to be improved, albeit that they are curing most of the children now.

On a final note, I want to draw your attention to the last comment I made on the journal, regarding mishaps? I knew I was tempting fate as I wrote it - Isla fell on her head on the last day. Knocked unconscious; nose bleed; vomitting; slurred speech; memory loss. For the first hour, the symptoms became progressively worse, as did our fears ( it was 2 weeks after Natasha Richardson's accident). She was stretchered off the mountain on the back of a skidoo, with oxygen. The ambulance was waiting at the bottom, and the doctor RAN out to meet the ambulance at the medical centre.

All ended fine, clearly, but a tricky 24 hours. I will not be tempting fate with my words again.

Oh, and Rachel is now on 12 week appointments at the oncology clinic! (I nearly did it again there by giving an estimation, but I can't do that...)

Monday, March 30, 2009 6:42 AM CDT

I think I will probably completely wind down the entries on this site now because truly, there is nothing to report other than that Rachel sees the consultant once per 8 weeks. Other than that, life is pretty normal. I am continuing my work for Leukaemia Research because I believe in what they are doing - which is researching leukaemia, lymphoma, myeloma and all the horrid blood cancers - a very specialised area, and only the best of projects are given the funding, which means the results are the best they can possibly be. If anything I am a bit too passionate in my work! no surprise there, huh?!

Anyway I am aways here to support those still going through their journey, please don't hesitate to get in touch even if it is only for a good old moan - sometimes that is great therapy.

We are off skiing over Easter (again! what a treat) so fingers crossed for a good week without mishap!

Monday, February 23, 2009 9:05 AM CST

Rachel's 8th birthday last week, and given that she was diagnosed the week before her 4th birthday, and spent the subsequent 2 birthdays in hospital - well, I am sure I don't have to spell out our thoughts and feelings at this time. Other than to say how fortunate we are.

I continue to get lovely messages from all sorts of people - Jo, your email was uplifting, and Helen, thank you for leaving a message in the guestbook, I still look at Jesson's site for your news and think of you all x.

There is ongoing discussion regarding NICE's recommended closure of the children's cancer services at Leicester Royal Infirmary, in favour of moving all care to Nottingham based on the numbers game. It was in the local press recently. The service provided at Leicester Royal Infirmary is superb from many aspects, and whilst there is a commitment to retain the leukaemia care at Leicester for now, only moving the solid tumour cancers, it is nevertheless (a) not ideal and (b) slightly worrying that it may perhaps be the first step towards total closure, which no-one can know at this stage because it is driven at government level, and things change with the politics. I just wanted to mention it in case anyone isn't aware that it is happening. I am not intending to get involved in this debate, but I have been keeping up with developments.

Sunday, January 11, 2009 12:48 AM CST

Happy New Year everyone. We went to Disney Florida over the holidays, a long-awaited trip, given that we had decided to take the children in 2005 and those plans went on long term hold when Rachel was diagnosed. What a wonderful holiday we had - beautiful weather, and 10 days of theme parks, lazing by the pool and bargain shopping! A perfect mix! So it is back to the mayhem of normal life, interspersed of course with Rachel's ongoing hospital appointments. Thursday last week was paed neuro psychologist, the start of psychometric testing to see if there is indeed some kind of cognitive impairment as I suspect (or confirmation that I am just being ridiculous and paranoid). Monday is her annual heart scan, and 2 weeks later is clinic, followed by the next neuro session when Rachel will undergo a few hours of testing. I have to say that I do not find these various hospital visits a burden. Instead, I find them a real reassurance that Rachel is still being properly looked after, and both Paul and I approach them with an expectation that all will be well, and look forward to receiving confirmation that that is indeed the case. Whilst a good approach for sure, I'm not sure it prepares us well in the event that something unexpected does arise, but heyho, all is well for now and that is just fine by us.

Friday, December 19, 2008 3:25 PM CST

A lovely friend of mine sent me this report, on the UK ALL 2003/2009 which is the treatment trial that Rachel, and all ALL children have been treated on (with exceptions) since 2003. This is a groundbreaking trial, funded by Leukaemia Research - so accurate that not only will it become standard treatment for all leukaemia patients (children), it is being extended to all adult ALL patients too.
Basically, this report is saying that for children with high MRD (Rachel, Josh, Ben, Lucy, Jemima .....many others .....) the randomisation to Reg C is showing that the relapse rate is much lower than previously. It's a bit technical, but stick with it ....

Thank you, Leukaemia Research, for saving our child's life.....
"
Robert J Cutting1*, Sue Richards2*, Jeremy Hancock3*, Nicholas Goulden4*, Christopher D Mitchell5* and Ajay J. Vora6
1Department of Haematology, Sheffield Children's NHS Foundation Trust, Sheffield, United Kingdom
2Ctsu, University of Oxford, Oxford, United Kingdom
3Bristol Genetics Laboratory, Bristol MRD Group, Bristol, United Kingdom
4GOSH, London
=0 A5Department of Paediatric20Oncology, John Radcliffe Hospital, Oxford, United Kingdom
6Dept. of Pediatric Hematology, The Children's Hospital, Sheffield, United Kingdom
The BFM group (Blood Nov 2007; 110a: 585) has reported that monitoring of post-consolidation MRD kinetics identifies a very high risk (MRD VHR) group of children with ALL, who might benefit from novel therapy and first remission allogeneic transplantation. We have compared the effect of consolidation regimen on post-remission MRD kinetics using a standardised quality controlled RQ-PCR assay of Ig and TCR patient specific rearrangements with a reproducible quantitative range of 10-4 in an attempt to identify a MRD VHR group, similar to that reported by the BFM.
UKALL 2003 is a randomised trial testing whether treatment can be stratified by MRD at weeks 4 and 11 in children and young adults (up to age 25 years) with ALL from the UK and Ireland. Initially, patients are stratified by NCI criteria, cytogenetics and early morphological marrow response to receive three (Regimen A) or four (Regimen B, additional daunorubicin) drug induction. Patients with MRD >10-4 at end of induction (EOI) (MRD High Risk) are randomised to continue previously assigned therapy (regimen A or B) or receive the more intensive regimen C. The regimens are of escalating intensity (A¡úC) an d include either CCG modified BFM (A), standard BFM (B) or augmented BFM (C) consolidation, the latter containing pegyla ted-asparaginase (Peg-ASP; Oncospar, Medac UK, 1000 units/m2 i.m. days 16 and 44) and vincristine (1.5mg/m2 i.v. days 16, 23, 44, 51) in addition to standard BFM consolidation. Only patients with high risk cytogenetics or day 28 BM3 marrow are eligible for CR1 transplant.
Of the134 patients with MRD > 10-4 at EOI, 101 were MRD negative, and 33 had detectable disease post-consolidation therapy (16 low MRD positive; <5x10-4, 17 high MRD positive; >5x10-4). Patients who received augmented BFM consolidation had more rapid clearance of MRD (Neg = 85%, low pos =7%, high pos =8%) than those who received CCG modified or standard BFM consolidation (Neg 65%, low pos =17%, high pos =17%) at week 11 ¨C 15 of treatment (P=0.03 independent of age and white cell count). With median follow-up of 27 months, ten patients have relapsed, 7 in the negative group (3 year relapse Free Survival [RFS] 91.2% se=3.5) 1 in the low positive group (RFS 92.9% se = 6.9) and 2 in the high positive group (RFS 85.7% se = 9.4). The latter two were recipients of the lower intensity Regimens A (isolated CNS relapse) and B (isolated marrow relapse). The small numbers of post-consolidation high-positive patients do not permit us to identify a VHR group with a worse outcome than those patients with lower MRD levels. However, the early relapse risk (<15% at 3 ye ars) for such patients appears to be much lower than that reported by the BFM group (>50% at 3 years). Differe nces in treatment protocol before and after consolidation may account for this disparity.
In patients treated on the current UK childhood ALL protocol, we are unable to identify a VHR group on the basis of post-consolidation MRD. Augmented BFM consolidation obtains more rapid clearance of MRD than other regimens which, with longer follow-up, might be expected to translate into a better EFS.
Disclosures: No relevant conflicts of interest to declare.

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 £8 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

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?

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 ½ 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 ½ 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 £50,000 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 ½ 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 £2 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 £5 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 £250 for Leukaemia Research (we have about £75 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, and whilst her temperature is gently rising in between doses, it is not a concern. So much so that we can go home after her 3rd ‘loading’ dose this afternoon! The community team will come out to administer the 24-hourly IV antibiotics at home for the next 6 days, and we’ll come into clinic next Wednesday for the final dose and for her IV vinc (chemo) and they can take some final blood cultures which hopefully will be clear. I think we’re pretty lucky to be going home, the other parents can’t believe it! I think that the reason Rachel is being discharged is a combination of us having been through this a few times before, we know the drill ie we know what to look out for, plus the community team support. Basically our consultant is placing a bit of trust in us – he did give me the choice of whether to stay or not.

There are twin 18-month old boys in the ward at the moment, newly diagnosed with ALL. That’s pretty unlucky, to say the least. The parents also have a 4 year old and a 3 year old at home. Nightmare.

So Rachel’s bloods are on their way up. Neuts have recovered from a big fat zero to 0.3, which is very good but still neutropaenic and vulnerable. No chemo again this week though, and in fact even the steroids have been delayed until next week. I will quite probably not send her to school for the rest of the week but if she is eager to go I might speak to the school – I KNOW they will look after her. Meanwhile, Rachel has been attending the hospital school yesterday and today.

Wednesday, November 15, 2006 5:17 AM CST

Morning update: Rachel was spiking high temperatures overnight (38.7 at 9pm, 38.3 at 5am) which means the antibiotics are not yet doing anything, and regular doses of paracetemol are bringing her temperature down, but as it wears off, the temperature rises again. My guess is that they will change the antibiotics tomorrow, and we’ll be here at least until the weekend. But it is a guess; we’ll know more tomorrow when the lab should have some results from the blood cultures.

Meanwhile, Rachel is attending the hospital school! Which is a schoolroom attached to the ward – obviously the Ward 27 children are immuno-suppressed so can’t mingle with other children. Speaking of immuno-suppressed, Rachel’s neutrophil count is currently 0.0. They’ve all been used up to fight whatever it is that is in her system I guess.

Whilst I luckily can pick up the wireless connection here, the bad news is that almost all vaguely useful sites (like hotmail for example) are fire-walled. This is of course hugely disappointing! But at least I can update the caring bridge site so you’ll probably be getting 2 updates per day whilst I’m here! (For those who are wondering what is going on, see the previous journal update).

Tuesday, November 14, 2006 2:09 PM CST

Rachel has been struggling a bit all week with night-time temperatures, and generally being a bit 'off.' However, nothing to get too worried about until I received a call from Miss Elkington (Rachel's teacher) at 11am today. She told me that Rachel had a temperature of 37 (high, but not panicking yet..) and she was shivering (EEEEEEK!).Big alarm bells were ringing, since her line had been accessed this morning by the community nurse, taking the weekly bloods as normal - clearly, there was a bug in the line that had been pumped into Rachel's bloodstream and was now wreaking a bit of havoc.

So, I hot-footed to school and picked her up. By the time we got to hospital, she was floppy, her temperature was 38.8 and her heart rate was 151. She was immediately hooked up to fluids, and given IV antibiotics and oral paracetemol, Within the hour she had visibly improved, and within 2 hours she was more or less back to her old self, still a bit hot but generally much better.

These episodes are quite scary, because the deterioration is rapid - as is the recovery, with the right medical help. So, we are here until Thursday pm, and thereafter it depends how the bug has reacted. We may be out then, or she may be here for 2 weeks, we just wait to see what happends. But fingers crossed it'll be zapped with the gentomycin (didn't do spell check, sorry!!).

Will update again tomorrow night, but meanwhile Miss Elkington and Gaddesby School, THANK YOU. And the friends who picked up my various pieces today, THANK YOU TOO! Auntie Nicola is picking up the 'art exhibition' breach, THANK YOU TOO!

Wednesday, November 8, 2006 7:02 AM CST

Rachel's bloods have taken a further dive, so no chemo for madam for the next week. We just have to take care with her, try to keep her away from coughs and colds until her neutrophils recover ( they are 0.3 today). We are all going for a flu jab next week, which really does help take a bit of the worry away, let's just hope for a steady temperature between now and then.

Other than that, we're starting to plan for Christmas. The girls have both written a list for Santa, to include every TV ad they see ......! (They might be in for a shock..)

Sunday, November 5, 2006 4:23 PM CST

There is a girl called Nicole who signs Rachel's guestbook often - for those of you who haven't yet had a look at her website, here is the web address below. And if you ever feel sorry for yourself, or a bit depressed, go to Nicole's website. She will uplift you, she is one amazing girl......

http://www.c-h-o-c.org.uk

Rachel's fine, by the way, nothing to report. Hair growing, wig still firmly sur la tete.

Wednesday, November 1, 2006 10:45 AM CST

Forgot to say that the tooth fairy visited both Rachel and Isla last week. Rachel now has 3 of her front 4 teeth missing on the top, 2 out of 4 on the bottom - if she lost all four on top I might begin to worry that it is related to the chemo, but thankfully one top and one bottom tooth/teeth are showing signs of popping through sometime soon. Also forgot to say that we ended up in hopsital last week on the Isle of Wight. No, not with Rachel this time - Paul managed to slice the top of his finger almost clean off (nice) after Minnie had a close encounter with a log/branch sticking out of the roadside. (long story, not without a few I-told-you-so moments...).

As for this week's bloods, white cells are dropping with neutrophils at 0.7 so madam is on 50% chemo this week. Her appetite is dropping off now THANK GOODNESS.

Sunday, October 29, 2006 2:43 PM CST

Back from half term break, we popped over to the Isle of Wight via New Forest and generally had a lovely break. Both girls were on fine form, Rachel's bloods are huge again after her steroids so she had loads of energy - and a HUGE appetite all week which is still lingering. She would just eat and eat and eat if we let her, the unfortunate thing being that she loves all the things that are bad eg coca cola, chips, crisps, sausages .....nightmare. Thank goodness for school starting tomorrow, it'll take her mind off the food.

Rachel plus Isla and Scarlett had a lovely time opening the Christmas Card shop in Melton Mowbray a week ago. It seems weird to think she did it last year - ie a whole year ago. Doesn't time pass so quickly? We are beginning to plan things we might do next year, as we become tentatively more optimistic about Rachel's general health. She is still on treatment until August next year, but the dramas that peppered last year have all but disappeared, which is giving us the confidence to think about eg skiing. We are still restricted to mainland Europe until her treatment ends, and we must be confident that should she take a turn for the worse, we can quickly get her to a hospital. But we can work with that, she has not been hospitalised since she has been on maintenance, which is just wonderful.

Currently, the great excitement in the household has moved on to Hallowe'en. Pumpkins have been given scary faces and are outside the front door, the house is covered in stuck-on (by cellotape, hand-drawn)spiders, witches, more pumpkin faces, and we had practice trick-or-treating this afternoon. Joy.

Wednesday, October 18, 2006 9:03 AM CDT

The STV piece went out last night, you can see it on their website :
http://www.stv.tv/news/Campaign_to_help_youngsters_get_dream_tr

and click on the 'Lapland video report'

Otherwise, tomorrow is the harvest assembly at school, which generally brings a tear to my eyes. Half term on Friday, and on Saturday, Rachel is opening the charity Christmas Card shop in Melton Mowbray again this year. 85p of every pound spent goes directly to the charity specified on the card - unlike the paltry few pence which high street shops typically return to the charities on their so-called charity cards. There are about 30 or so charities to choose from, it is a really good place to buy your cards, to be contributing to the right places rather than adding to the profits of the retailers. I'll put the (temporary shop)address on my next update after half term.

We may go away for a few days over half term in Minnie. Not sure where yet. And we need to work out how to get bloods done if we're away, although steroids boost the counts so she'll almost certainly be on 100%. IV vincristine today and steroids now for 5 days, hopefully the weekend's activities will keep little miss from getting too grumpy. Bloods are still ok (neuts at 1.4, hb 11) so on 100% chemo.

Tuesday, October 17, 2006 4:32 PM CDT

The STV piece went out tonight, you can see it on their website :
http://www.stv.tv/news/Campaign_to_help_youngsters_get_dream_tr

and click on the 'Lapland video report'

Wednesday, October 11, 2006 5:16 PM CDT

Bloods still high (hb 12.6, neuts 2.5, that sort of thing....) so 100% chemo again. Rachel is very well indeed, really thriving at school and generally all is steady. A friend gave Rachel a little goody bag this week, which contained hair clips amongst other things. When Rachel opened the bag, she gathered the hairclips together, tipped her cap back and started to put the hairclips in her hair. We were sitting in the car at the time, waiting for Isla to finish her piano lesson -essentially a 'public' place. It is a big step forward, thanks, Julie, for the helping hand. I think the next step might be to take Shirley's suggestion up (see recent guest book entry) and pay a visit to Claire's Accessories!

Thursday, October 5, 2006 5:32 PM CDT

Bloods good, still on 100% chemo, not much to report. Rachel was in hospital today for her 3-monthly intra-thecal methotrexate, which went smoothly as ever.

STV were here yesterday, to do the Lapland piece - it was quite exciting for all of us! (Thanks, Nichola and Steve). Leukaemia Research, having said we can't walk with Ian Botham 'cos he walks too fast for little Rach!(he's doing his big sponsored walk at the moment and is due in Leicester next Friday), invited us to meet him at the press call. Much to Paul's disappointment, we declined, on the basis that if we had a huge cheque for Leukaemia Research to hand over, then fair enough, and if it was Noddy, then that would probably do it for Rachel. But otherwise, couldn't see the point really. It was extremely kind of them to offer the opportunity though.

I've updated the photos so do have a look. And don't forget the 'When You Wish Upon A Star' Santa Runs in Edinburgh, Yok and Nottingham - see the link below, dates are now up.

Wednesday, September 27, 2006 2:55 PM CDT

After the steroids, Rachel's bloods are huge again - hb over 11, neuts over 2 - these are practically levels of a normal person!! Gradually, she is beginning to lose weight. Each month on the steroids, she is getting less 'round' than the previous month, and I can see glimpses of the beautiful little elfin face coming back. I WILL do some more photos soon, I promise!!!! I know I have been neglectful for months now....

STV (Scottish Television) are coming to do an interview next week with Rachel, as a follow up to the Lapland trip in December. Last year, Scottish children had to fly from East Midlands which meant that they had to travel the night before, and stay over in East Midlands airport the night after. This would be tricky enough for a healthy child, but imagine how much of an ordeal those travel arrangements would be for disabled children? So, this year, When You Wish Upon A Star are launching an appeal to raise money to take Sottish children to see 'the real Santa' departing from Scotland. For many children, like us last year, it is impossible to stray far from hospital, let alone go overseas or even travel on public transport because of the risk of infection from fellow travellers, particularly on an aeroplane where everyone is breathing recycled air. Recycled germs. But this Lapland trip makes the impossible possible, a chartered aircraft filled with medics, paramedics, carers, immuno-suppressed children and suddenly, a trip to the magical wonderland to meet Santa is not only possible, but really happening!

http://www.thesantarun.org.uk/choose.html

The fund raising is being done for this trip via the Santa Run in Edinburgh on December 10th 2006. It will be a MASSIVE event, just you wait and see! Have a look at the link above and see if you recognise anyone?!! But if you think you can get involved in York, Nottingham or Edinburgh, either getting a team to participate or volunteering as a helper on the day, it could not be for a more worthy cause. They need about £60,000 to make it happen. For many children, this trip is literally the best day of their short lives.

Wednesday, September 20, 2006 6:40 AM CDT

Back on 100% chemo this week, with neuts at 1.3 and all other counts fine. This being clinic week, it means Rachel starts 5 days on steroids today, and she had her vinc this morning. It means that I'll have to have the buggy with us wherever we go for the next few days, as you know by now the combination of vinc and steroids means that Rachel won't be able to walk far because of pain in her legs/feet. And of course she's likely to be little Miss Grumpy. But that's ok.

And now to the chaps doing the RAID - at the halfway point, they were on schedule, with Mr Barton 20 minutes ahead of the others after completing the highest peak! The 100 hours was ending at lunchtime today and word on the street is that they have all finished with about 1/2 hour to spare. A few aches and pains here and there (I think Steve had a fall?)but essentially all in one piece. Congratulations on a fabulous achievement!

Meanwhile the four have raised an additional £4k+ for Macmillan as it currently stands, but I am sure the total will end up higher. Thank you to those who have so generously given already, I am touched at some of the names I see on the list of sponsors, I won't name names but you give again and again, thank you so much for supporting Rachel, for supporting the riders and for helping cancer sufferers everywhere.

Wednesday, September 13, 2006 7:59 AM CDT

Oh it is lovely to be back in a routine! Children are back at school, delighted to be back with their friends and doing all sorts of exciting new things. Paul is still hugely busy at work, but hopefully that will ease a bit in a few weeks and we can plan something nice for the girls at half term.

As expected, Rachel's bloods this week have soared after her week off chemo, so it is back on this week. I have been told 50o I have asked to re-check with Dr Madi - usually it would be back on 100ith neuts >2 as they are today. Maybe it is because she had a week off chemo, a week on 50and then a week off again ie the week on 50as enough to crash the counts so they may be being cautious because of that. 'Tis a complex issue, this chemotherapy business. Privately, I believe that waking Rachel a few hours after she has gone to bed, to give her her chemo, as I have been having to do for the past few months, has increased the effectiveness. (ie you have to give it on an empty stomach, so min 1 hour after food, and especially min 1 hour between milk products). I just think her stomach has been more 'empty' hence the chemo more effective. I have raised the question with clinic today, the peripheral issues being: is it more likely to make her feel sick; might the stomach lining be affected if stomach is totally empty.

Rachel's Uncle Martin and along with our friends Steve Barton, Nick Shirley and Matt Wheeler leave tomorrow for another bike ride, this time the RAID for Rachel which is 450 miles traversing 18 Pyrenean mountain cols in max 100 hours(the highest being the renowned Col De Tourmalet at 2115m). They are hoping to add more funds for Macmillan Cancer Care, please see the link below for details of where to sponsor them. Be generous, Macmillan is such a crucial lifeline for families facing cancer.
THANK YOU, MARTIN, NICK, MATT AND STEVE, GOOD LUCK! AND LOOK AFTER MINNIE!!!!

Wednesday, September 6, 2006 4:58 PM CDT

Bloods have fallen today, neuts at 0.45 so 0% chemo for the next week (silent hurrah). I gave blood on Sunday at Mountsorrel. And those are the two most important things in our week I guess? Things are calming down a bit in the Smith household, as we get our lives back on an orderly track after the summer holidays. I have ordered a new replacement wig for Rachel as it has become clear that she will not be parting company with a wig in the near future. What a shame, part of me is wondering if something has been said which has caused this increased sensitivity, but I don't see how that could have happened. Anyway, cant think of anything else to report so that's all for now.

Friday, September 1, 2006 8:40 AM CDT

Got home last night after a lovely week in Greece. Rachel was on 50% chemo, and I didn't access her line at all whilst we were away, to minimise the chance of any mishaps! I flushed the line early this morning, ahead of the nurse coming to take bloods, so that if there was anything untoward, I would be with her to spot the signs and get her straight to hospital. As it was, all was fine, and she went back to school this morning, where the nurse was waiting for her.

Unfortunately we could not entice Rachel to go without her wig. It is obviously something that hurts her enormously, not having lovely hair like she used to, and it is very upsetting to watch her distress when we remove her wig, even if we only removed the hair and let her still wear the cap. She absolutely hates her short hair. So, we have to go with it, and accept her decision. I cannot traumatise her over this issue, things are hard enough for her as it is. The problem is, however, that it will take about 2 years for her hair to be long again, curly hair taking much longer to grow long than straight hair. We will have to think of strategies to ease her into it, not sure yet what these strategies could possibly be, though! All ideas welcomed! but at the end of the day it is a confidence issue, and Rachel is a naturally shy little girl - but of course she knows that she got a lot of attention from her long curly hair, and also because of the wig she now wears. Maybe a less attractive wig is the way forward? We'll let her hair grow for a few months and then have another go.

Wednesday, August 23, 2006 3:46 PM CDT

Rach is back on the daily chemo, albeit half dose in recognition that we need her counts to remain high when we are out of the country for a week. So that's fine. And we'llfind out next week if she has managed to ditch the wig......!

Thursday, August 17, 2006 4:53 PM CDT

This is only a day after the last entry, so please check the previous journal entry if you missed it.

Today Rachel is getting a bit tearful - her feet hurt from yesterday's vincristine (IV chemo) and the dex (steroid) is starting to get her down. So, we'll have a few days where we will all have to work a bit harder to keep things on a level, and by Tuesday or maybe Wednesday, 'Rachel' will be coming back to us. She is front-toothless, hence lisping, and sweet as you like at the moment, with her short curly hair. She is growing a bit too, now at 112cm.

Some not so good stuff has been happening to fellow leukaemia sufferers recently, I can't help but feel a bond with them but at the same time of course want to keep Rachel and Isla away from those realities. Rachel's reality is that she is likely to relapse, but we hope that her increased treatment might prevent it. So whilst she is doing really well at the moment, I cannot say I am confident that it is under control. I can only say that we are hopeful, and if we are really lucky, she might finish this treatment next August and maybe will not have to face this beast again. Meanwhile, our thoughts and prayers are with those who are having really tough fights as I type this. On that note, we saw Bethany at clinic yesterday - she looked just GREAT!
(Worldwide search is now on for a bone marrow donor for Bethany, who has relapsed aged 8, after initial diagnosis aged 3, like Rachel. Please, please, please, give blood and register to be a bone marrow donor, did you know that a bone marrow transplant is a bag of what looks like blood, administered to the recipient in exactly the same manner as a blood transfusion? It is much less of a Big Deal than maybe you think. PLEASE GET ON THE BONE MARROW REGISTER, IT IS REALLY EASY AND YOU MIGHT SAVE SOMEONE'S LIFE. The national bone marrow register accepts people until age 43, then you are on the register until age 60. when you give blood, you will be offered a thumb-prick test to go on it, IT IS THAT SIMPLE. Please, please, please do it.)

Wednesday, August 16, 2006 7:58 AM CDT

Neutrophils today at 0.4, so no oral chemo for a week to let Rachel's counts come up. And if we are REALLY lucky, she'll be off the chemo whilst we are away too! Certainly they won't put her on 100% next week even if her counts are back up - which they should be, courtesy of the 5 days of steroids starting today. She had her IV vinc today as normal. She also had a chest xray - Rachel has had a cough for about 3 months or so. It disappeared for a few weeks but then came back again. Could be a virus/successive viruses (yes, that IS the correct plural of virus....!!), could be asthma? We have also been sent home with an inhaler. If the xray shows up anything, I'll get a call, but it is very reassuring to know that the wonderful Dr Madi is covering all bases. I spoke to another Mum at clinic this morning, whose son was diagnosed aged 4. He is now 8, he finished maintenance chemotherapy in June this year (boys have one extra year of treatment, essentially because the disease often reappears in the testes, which act as a haven site for the leukaemia). She said that when his treatment ended, she realised that it was not 'over.' Initial monthly check-ups progress to (all being well) annual checks for life, regular ongoing checks on heart because one of the drugs can damage the heart, another drug affects the kidneys......and so on. We know it is with us for life, we realised it very early on.

Otherwise, Rachel is well apart from me knocking out her (very wobbly) front tooth this morning. Both gone now, she is excited at the prospect of returning to school with the most teeth gone in her class! As for her hair, it is curly and growing nicely, but she is still wearing the cap/wig. She has agreed, however, that the wig/cap will not be coming to Greece with us, so I am thrilled to have her agreement on it. It will allow her some sense of control over the decision, which will make the transition much easier for her than if she was resisting it. So, on our return, you will see the new Rachel, without teeth! without wig. (We hope!!).

Wednesday, August 9, 2006 8:13 AM CDT

Rachel’s bloods have fallen a bit, neuts at 0.8, all other counts lower but ok. Still on 100% chemo this week, without question she will extremely neutropenic by next week. My guess is she will be off chemo for the week before we go on holiday. She’ll be starting steroids then, a week early (because of the holiday) which will boost her counts, so we’ll just have to play it by ear – meanwhile if she becomes unwell this week, I have to let the consultant know and fairly certainly he’ll reduce or stop the chemo. Additionally, her feet are still giving her a bit of pain, so we’ll get that checked next week at clinic too. Sometimes the children on Regimen C can lose reflex action because of this peripheral neuropathy (caused by the high dosage of vincristine) – this side effect is permanent, being irreversible nerve damage, so it is important to keep tabs on it. We saw the physio last summer a few times, when Rachel’s foot was starting to drag, and she was given some exercises and they reduced the vincristine at that time. However, altering the dosage now is not really an option, she needs IV vinc once a month, it is a crucial part of the maintenance chemo. When it comes down to it, there’s not much they can do – and I’d rather have a limping daughter who has beaten leukaemia, than the alternative.

Meanwhile, Bethany’s family are continuing to search for a bone marrow donor:

http://www.leicestermercury.co.uk/displayNode.jsp?nodeId=132407&command=displayContent&sourceNode=132390&contentPK=15095711&moduleName=InternalSearch&formname=sidebarsearch
(sorry can't create a link in this section, you have to copy-paste)

How many of you who are reading this have not yet given blood, and yet are perfectly eligible? Do you feel a little bit ashamed? Rachel has received something like 11 pints of blood, without it she would not have survived. Bethany continues to need blood to keep her alive until a bone marrow donor is found. It is now a global search because no match has been found in UK and Europe, because of her unusual tissue type. The national blood service also have a bone marrow service. When you give blood, if you tick the box for bone marrow donation, they do a pinprick test and THAT IS IT – you are on the register from that point, and they'll send you a little blue plastic card a few weeks later. Upper age limit to register is 43, with Anthony Nolan Trust it is 40, in both cases once you are on the register you are on it until age 60. Please, please, PLEASE read Bethany’s story, this is what would be happening to Rachel if the new MRD test hadn’t been available, and still might. To recap previous journal entries, Rachel's treatment trial, funded by Leukaemia Research and started in 2003, is based around MRD and is proving to be a very important and significant trial, with 100% of relapses being from 'high MRD' patients, 0% relapse rate from 'low MRD' patients. PLEASE GIVE BLOOD AND GET ON THAT BONE MARROW REGISTER. Alternatively, be ashamed of yourself if you haven't even tried.

Sunday, July 30, 2006 4:19 PM CDT

Little Miss Grumpy finishes steroids tomorrow thank goodness. She's like my little shadow, but Isla helps a lot by being understanding beyond her years.
We managed to pop down to Norfolk for 36 hours this weekend. We had a lovely time, the girls were thrilled to be out on the boat, as was Paul! and we managed an hour or 2 on the beach, Rachel paddling and Isla swimming. However, I had come away with only her medication, ie without all the back-up kit like syringes etc, and as luck would have it, her clamp (ie clamp on the Hickman line) came undone. The effect of this is that blood can seep into the line and clot, so you have to flush the line quite quickly to ensure it doesn't block. So, a quick call to Ward 27, the wonderfully pragmatic Laura called QEH in Kings Lynn, who agreed to hand over the necessary kit to me. Which was a huge relief because it meant Rachel didn't have a trip to hospital. I collected all the necessary bits and pieces from the very helpful children's ward, took it back to the house and flushed her line. An hour round trip for me (and Geoff, who insisted on taking me, thank you!!) and 2 minutes inconvenience for Rachel. Brilliant. But the lesson being, even if it is only 36 hours, NEVER go away from home without ALL the kit!

Thursday, July 27, 2006 6:04 AM CDT

We had a super few days away, split between Dartmouth with Auntie Nicola, Uncle Edward, Hattie, Max and Tilly, and in Minnie. All in well except that I forgot about clinic yesterday! oops but we went straight into hospital yesterday afternoon for assessment, bloods and IV vincristine. That means the steroids also started yesterday, and our delightfully happy and smiley Rachel has already turned into tired, whingy, let's-annoy-Isla-as-much-as-possible, Rachel. The weather doesn't help much, being so humid and exhausting anyway.She's just told me she's too tired to do anything except shopping! Aren't we all!!!

Thursday, July 20, 2006 1:58 PM CDT

OK, where do I start. I have such a lot to say, about various things. Let's start with Rachel's health : she is great, neutrophils still above 1.0 so she is still on 100% of her chemo. I expect she will dip below 1 fairly soon, ie she will then be neutropenic, very vulnerable again to any infection or virus, and her chemo will subsequently be reduced. But until that happens, she's on great form and getting full dosage of medication. But I must stress, she is still immuno-suppressed and much less robust than healthy children, despite appearances. Which means we are still relying on friends and family to be vigilant, and alert us to any infections or viruses she may be exposed to, so that we can take avoidance action!

Last weekend, Rachel, partnered by (the older and more experienced) Miss Emily Sellicks, won her first ever tennis tournament. The really lovely thing is, Paul won it in 1983! (Aged 14!!!!!!!!) which was thrilling for Rachel, to win not only a trophy but one which her Daddy won when he was little. ( well, not QUITE so little as Rach and Emily!)And she is so THRILLED that Emily was her partner.

We have also decided to take the plunge and book our week in Greece at the end of August, with Craig,Laurie, Ollie and Clemmie. The girls are thrilled, and we'll have to see how Rachel deals with it. We desperately want her to ditch her cap/wig, but her confidence seems to have been shot completely. There will come a point where we will have to do the 'cruel to be kind' scene, which she doesn't deserve, but which she now needs. It's pretty hard to make happen, but it's necessary now, to re-integrate her into normality.

As for the fund-raising event last weekend for Leukaemia Research, this raised iro £5,800 but that's not a final total. Here is an overview of the event, and may I say now, a HUGE THANK YOU TO KATE AND MIKE FOSTER-SMITH, AND LINDA GANT AND ALL WHO CONTRIBUTED TO SATURDAY'S EVENT. Here is an overview from Kate :

"There were seventeen open gardens, all of which had some lovely comments from the people visiting them. One of the most touching moments during the afternoon was when a young lad of about fourteen walked into our garden on his own and said to me, 'I am drinking a coke at the moment but I'd like to donated 50p for a squash as it is for a very good cause.'

The evening 'do' was a resounding success. We had around 130 guests at one point, and I was getting a little worried that we would not have enough food! but I have say that the pig roast was the biggest I have ever seen. The entertainment for the evening was a live band called Quattro based in Birmingham who provided their services free of charge and even insisted on paying for their own tickets as well. We had two girls fron a professional dance school perform a couple of routines (one of which was Linda's daughter Lisa), and they were hugely entertaining. The Auction was excellent as the items donated were incredibly generous, the auctioneer for the evening was Mr Ian Southall who was also very entertaining. The raffle was a resounding success once again all the prizes donated were really worth trying for. Once everything was out, the was the band really whooped it up and people were boogying and dancing everywhere. I have to say that the atmosphere was absolutely fantastic it was so buzzing with enjoyment, people did not want to go home. Another little fund raiser that went on during the evening unbeknown to me was this really cute little boy encouraged by his parents went round with his cap and raised £150 on his own everyone just wanted to give in one way shape or form."

Kate, Mike, THANK YOU. Leukaemia Research is undoubtedly the charity closest to our hearts. Truly, we cannot thank you enough. We do not know if our daughter is cured or not, we won't know for many years.

As for Rachel's front tooth, it is well and truly out. I had to pull it out (eugh, it was not quite ready!!! but she made me do it, she didn't cry) because it was soooo wobbly and Rachel was determined it was coming out. Meanwhile, Isla's arm is still not great, she still needs a sling and isn't able to do tennis/swimming, it's still causing a bit of discomfort. But, we're off for a few days in Minnie, will not be in touch with a computer so don't worry if emails etc not replied to.

Thursday, July 20, 2006 1:12 PM CDT

OK, where do I start. I have such a lot to say, about various things. Let's start with Rachel's health : she is great, neutrophils still above 1.0 so she is still on 100% of her chemo. I expect she will dip below 1 fairly soon, ie she will then be neutropenic, very vulnerable again to any infection or virus, and her chemo will subsequently be reduced. But until that happens, she's on great form and getting full dosage of medication. But I must stress, she is still immuno-suppressed and much less robust than healthy children, despite appearances. Which means we are still relying on friends and family to be vigilant, and alert us to any infections or viruses she may be exposed to, so that we can take avoidance action!

Last weekend, Rachel, partnered by (the older and more experienced) Miss Emily Sellicks, won her first ever tennis tournament. The really lovely thing is, Paul won it in 1983! (Aged 14!!!!!!!!) which was thrilling for Rachel, to win not only a trophy but one which her Daddy won when he was little. ( well, not QUITE so little as Rach and Emily!)And she is so THRILLED that Emily was her partner.

We have also decided to take the plunge and book our week in Greece at the end of August, with Craig,Laurie, Ollie and Clemmie. The girls are thrilled, and we'll have to see how Rachel deals with it. We desperately want her to ditch her cap/wig, but her confidence seems to have been shot completely. There will come a point where we will have to do the 'cruel to be kind' scene, which she doesn't deserve, but which she now needs. It's pretty hard to make happen, but it's necessary now, to re-integrate her into normality.

As for the fund-raising event last weekend for Leukaemia Research, this raised iro £5,800 but that's not a final total. Here is an overview of the event, and may I say now, a HUGE THANK YOU TO KATE AND MIKE FOSTER-SMITH, AND LINDA GANT AND ALL WHO CONTRIBUTED TO SATURDAY'S EVENT. Here is an overview from Kate :

"There were seventeen open gardens, all of which had some lovely comments from the people visiting them. One of the most touching moments during the afternoon was when a young lad of about fourteen walked into our garden on his own and said to me, 'I am drinking a coke at the moment but I'd like to donated 50p for a squash as it is for a very good cause.'

The evening 'do' was a resounding success. We had around 130 guests at one point, and I was getting a little worried that we would not have enough food! but I have say that the pig roast was the biggest I have ever seen. The entertainment for the evening was a live band called Quattro based in Birmingham who provided their services free of charge and even insisted on paying for their own tickets as well. We had two girls fron a professional dance school perform a couple of routines (one of which was Linda's daughter Lisa), and they were hugely entertaining. The Auction was excellent as the items donated were incredibly generous, the auctioneer for the evening was Mr Ian Southall who was also very entertaining. The raffle was a resounding success once again all the prizes donated were really worth trying for. Once everything was out, the was the band really whooped it up and people were boogying and dancing everywhere. I have to say that the atmosphere was absolutely fantastic it was so buzzing with enjoyment, people did not want to go home. Another little fund raiser that went on during the evening unbeknown to me was this really cute little boy encouraged by his parents went round with his cap and raised £150 on his own everyone just wanted to give in one way shape or form."

Kate, Mike, THANK YOU. Leukaemia Research is undoubtedly the charity closest to our hearts. Truly, we cannot thank you enough. We do not know if our daughter is cured or not, we won't know for many years.

And what else to say? Not sure really. Next update, next week.

Monday, July 17, 2006 12:11 AM CDT

Well, since the last journal update, we have been in a whirlwind of activity. Isla ended up at hospital after sports day at school last week, but fortunately only a sprained arm, not broken. Amazing Great Children's Party was ok but not as gentle as we though it might be. Tennis tournament weekend saw Rachel win her first ever trophy!!!!, and the open gardens event for Leukaemia Research was a huge success, even though I was unable to attend (Paul took the girls along). I will fill in the details later in the week, with photos, but just wanted to do a quick update. Rach is great, still on 100% of chemo but counts are falling. Hair is gorgeous but she wants 'proper' hair before she'll ditch the cap/wig .....

Tuesday, July 11, 2006 4:19 PM CDT

Rachel was in hospital today for her intra-thecal MTX which is a general anaesthetic for chemo into her spinal fluid - this is a preventative therapy because cancer in the blood can spill over into the brain, so it is routine to have this preventative treatment. (Quick info for those who haven't been following Rachel's treatment since we started the website). She generally recovers from these ga's incredibly well, and tonight we met a doctor who blinked in admiration at her robustness this evening after today's treatment! In fact, she went to school straight from hospital, then to a friend's house to play/for tea, and then we all went to a 'car show' in the evening!!

I had an odd day though - the play specialist in the childrens oncology ward hasnt seen Rachel for a few months, so Rachel was telling her about Disneyland Paris. The first thing she said was, "Daddy cried when he saw Sleeping Beauty's castle" - which was of course completely true, and the tears just came. I couldn't believe that was the first thing she said. Then about 15 minutes later, another leukaemia Mum told me about a friend who had been at Rachel and Isla's ballet show, she had seen Rachel's Hickman line and her wig and promptly took her child home, because her little girl had a cold, and since Mum was a GP and spotted Rachel's vulnerability, she took her child away from Rachel to protect her, without me ever knowing. So that made me cry. And then I went to the supermarket - on the front page of the Leicester Mercury today was Bethany, who was just like Rachel ie diagnosed with ALL aged 3, relapsed this year aged 8, is now desperately searching for a bone marrow donor because that is her best hope of cure. They can't find one in Europe, she has a rare tissue type, so the search is now worldwide. I was standing in the supermarket just sobbing by this stage.
So now here we go again : PLEASE, PLEASE REGISTER TO BE A BONE MARROW DONOR. OVER 40, IT IS MORE TRICKY TO REGISTER ALTHOUGH ONCE REGISTERED YOU ARE OK UNTIL AGED 60. DO IT NOW!!!!!!! Just think if it was your daughter, your son, your sister or your brother - what would you give to save their life? Giving your bone marrow is free. And you can save a life - what else will you ever achieve in your life that can surpass that?
You can register either via the Anthony Nolan Trust website, but you can also register when you give blood, which is the national blood/bone marrow register.
www.anthonynolan.org.uk
www.blood.co.uk

And whilst I'm at it, Rachel has had approximately 12 blood transfusions to keep her alive since she was diagnosed last year. If you are reading this and don't have a good excuse not to be a blood donor, please take a moment to think about it. As I said, there will be nothing in your life that will ever be more worthwhile than saving someone's life. GIVE BLOOD. IT COSTS NOTHING. IT WILL - WILL - HELP SAVE SOMEONE'S LIFE.

Friday, July 7, 2006 6:13 AM CDT

Rachel has been off the steroids since Monday, and is back on super form. Her blood counts are all high (after the steroids), so still on 100% chemo. She's due in hospital on Tuesday for intra-thecal MTX, so that's a general anaesthetic but she's hoping to be back at school so she can take part in the 'Pirate Assembly' which is clearly a a very exciting event?!

Next Thursday is also the Amazing Great Children's Party in Battersea, which we are all very excited about (we are all going). Let's hope the thunderstorms have disappeared by then.

Sunday, July 2, 2006 5:15 PM CDT

ENT clinic put Rachel through various tests, upshot is, all is absolutely fine, with the recommendation that when she is neutropenic, she has prophylactic antibiotics to pre-empt any ear infection. Fine, no problem with that, thankful to have some kind of all-clear on something!! She is on the dexamethasone at the moment, and is struggling to be parted from me for more than 5 minutes. The thing that really takes us by surprise is how her eyes change shape. They get black rings within 12 hours, and then the lower lids droop, which of course changes her whole appearance even before you take into account the 'moon' face. Then for 3 weeks, those effects recede, and we get beautiful elfin faced Rachel for a few days, and then the cycle starts again.
Both girls had tennis this morning, which they love, but Rachel's feet were sore by the end. It is the vincristine and dexamethasone causing it, but she'll be ok in a day or 2.
Other than that, we had the school end of term reports. Rache has missed 25% of her school year, which is more than I had thought. But she is doing well despite the illness and the absences, in the top half it seems, and her teacher has written a note to say what a pleasure she has been to teach. What more can you ask? Made me shed a(nother) tear. What a girl.

Wednesday, June 28, 2006 9:41 AM CDT

This weeks bloods falling but still ok, Hb 10, neuts 1.1, so she is still on 100% maintenance chemo and starts steroids today for 5 days. Get ready for the mood swings! She has also put on 1kg since last month, grown 1cm (111 1/2cm now) and her bottom tooth is hanging on by a thread. Hair is very Kylie-esque, looks gorgeous, but she just will not take that cap off! ENT clinic tomorrow, will update again at the weekend.

Wednesday, June 21, 2006 2:53 PM CDT

Rachel's line worked beautifully this week, now that I have dutifully resumed flushing duties! Bloods are still high so she remains on 100f chemo. Clinic next week -it's once a month, just for the consultant to check her over and for her to get the monthly IV chemo (vincristine) - and also the ENT clinic to check out her recurring ear infections.

Today Rachel's teacher remarked at how brighter she has been over the past few weeks. She laughed and said Rachel had even been cracking a few jokes! It's lovely that other people (who didn't know her before she was ill) are now noticing the change in Rachel, she really is coming back to her old self now that she is on maintenance.

Thursday, June 15, 2006 9:09 AM CDT

The drug worked beautifully on Rachel's line, and she remains on 100f chemo. It is a shame in a way because any valid excuse to get rid of the line and get a port instead, I would jump at. However, it would mean a 2 hour op for Rachel so of course I could never 'make' it happen just for convenience. Shame, though! But she remains well, happy and the Disney trip is almost a distant memory now - apart from the photograph album that comes everywhere with us at the moment!
This weekend we are off to be with my family for the weekend, to celebrate my parents' golden wedding anniversary (which is actually today). I have also had a letter in from the ENT clinic, for Rachel to have her ear checked out just in case there is an underlying problem whichis making her prone to these ear infections when she gets a cold. Her appointment is for the end of the month, the day after her next oncology clinic appointment.

And that's about it for news at the moment! No news is good news as far as I'm concerned!

Tuesday, June 13, 2006 3:40 PM CDT

20,000 hits on Rachel's site, who'd have thought it?

Today, Rachel's Hickman line wasn't playing. We couldn't get anything out of it at all, so had to go into hospital this evening to try again, but no luck. So, uracinase is in her line (drug to dissolve any clots) for 24 hours, and it's back into hospital tomorrow after school. We have to get bloods then whether via line or via cannula. Will update again tomorrow night - if line conks out, it's a relatively big deal in our new scheme of things, but not all bad. But, uracinase has worked beautifully in the past so fingers crossed.

Tuesday, June 6, 2006 1:35 PM CDT

Well, firstly, there were no dramas. I normally flush Rachel's line once per week, but didn't do it whilst we were away just for safety. Not being on chemo for the week was great, and we delayed the steroids (dexamethasone) until Sunday night in order to keep Rachel in good spirits. Whilst Rachel still has a cough and a bit of a runny nose, the earache has gone, and Rachel's consultant has referred her to the ENT consultant just to make sure there is nothing awry in her ear, since this is the 3rd time we have had the same pattern.

And so to Disneyland Paris. Well, if any of you have been to Disneyland anywhere, I guarantee you that you will not have had a better, more magical, more emotional visit than the visit we have just completed. On the Dover-Calais ferry, Rachel got a bit sea-sick. She just felt rotten (as I did) - a bit headachy, a bit nauseous. Unknown to me, Paul was going into a bit of a decline about this - we have had so many setbacks when planning mini-breaks like this, that it is difficult not to worry that it will all go horribly wrong. Bear in mind we planned to take the children to Disney (Florida) in 2005 before Rachel had been diagnosed. Then, when her protocol was increased, we booked a trip (Disneyland Paris) before the really heavy chemo, but had to cancel. As we approached the Disney site, Paul was saying to the girls, "Can you see anything yet??!" and then all of a sudden he pulled into the side of the road. He just broke down, it had been such a long, arduous journey to actually get to this point, that the poignancy was too much to bear for him. So I took over, and we finally drove into Disneyland.

There is so much to tell you that I don't know where to start. Rachel had a 'blue badge' that is only issued to children with life threatening illnesses and only available via certain charities. We had travelled on the Christian Lewis Trust program, which gave us passes, reduced hotel rates for 2 nights and the precious Blue Badge (www.childrens-cancer-care.org.uk). This blue badge not only allowed the whole family to avoid any queue, anywhere in the Disney complex, including restaurants like Planet Hollywood, but it ensured that Rachel was treated as royalty wherever she went. Any Disney character, who would be surrounded by hoards of children, would immediately leave the crowd and come over to Rachel, cuddle her, single her out for attention. Hence her autograph book is FULL ! Mrs Incredible was just gorgeous to her, but all of the characters - Chicken Little, Donald, Mickey, Minnie, Ariel, Mary Poppins, you name it - blew her kisses from the parade, or came over and cuddled her. The pinnacle was the Disney Princesses experience - Cinderella and Belle were going to their allotted signing spot to relieve Snow White and Sleeping Beauty of their meet'n'greet duties when they were mobbed by children (as always) but they spotted Rachel. Cinderella took Rachel (wearing her Sleeping Beuaty dress) by the hand, Belle took Isla (wearing Belle dress) by the hand, and they marched proudly down from the Sleeping Beauty Castle to the signing point, followed by the 2 minders and hoards of youngsters. Once they reached the meet'n'greet point, all 4 Disney princesses surrounded Rachel and Isla for a photograph. It's hard to do it justice, but it was the most magical moment for them. As for Paul and I, we were both in tears at the sheer joy on our daughters' faces. They truly will never forget it, nor will we.

Meanwhile, the blue badge meant that, despite 90 minute queues for the biggest attractions, Rachel (and Isla, Paul and myself!) did not have to queue at all and managed Thunder Mountain 9 times, Peter Pan 9 times, It's A Small World only twice??! and the cars ride in Discoveryland about 12 times!!! Rachel's very favourite was Thunder Mountain but we had to leave Honey I Shrunk The Audience because she was too scared...!!! awwww. What can I say? Both girls had a wonderful time, more magical than they or us could have dared hope. Thank you, Christian Lewis Trust. And it's like I keep telling you all, Rachel's illness has brought so much joy alongside all the pain. The sheer elation, the poignancy, the raw emotion, it is nature's trick/payback for all the pain.

I will post photographs tonight if possible, if not, I'll do it tomorrow so please do have a look.

Wednesday, May 31, 2006 8:15 AM CDT

Rachel's bloods have fallen again, the main event being that her neutrophils have fallen to 0.2. This means that her chemo is stopped until next week, to allow her bloods to recover. Now, this is all well and good, until you factor in that we are travelling to Eurodisney tomorrow......eeek! We could just do without the extra worry - last Friday night, Rachel woke crying in the middle of the night with ear-ache. This is a pattern we have seen before - she gets a cold, it drops into a cough, then she gets ear-ache, then she ends up in hospital on IV antibiotics. So, Rachel has been on oral antibiotics since Saturday, to try to nip it in the bud. Her temperature has been stable throughout and she has been extrememly well in herself. But the crux of the issue is, as it turns out we could not have picked a worse time to travel. We shall just have to ensure that we keep her well rested and wrapped in cotton wool, and hopefully we will avoid an emergency dash to a Paris hospital...! Typical. It is a shame, because it will just take the edge off the trip for Paul and I, because we will be that little bit more anxious than otherwise. I blame myself, for being worried a few weeks ago that her counts were remaining too high!!!

Anyway, wish us luck, and let's hope we can have an uneventful break, and one that the girls will remember for all the RIGHT reasons!

Wednesday, May 24, 2006 5:04 PM CDT

Rachel's neutrophils have dropped to 0.68, so chemo has been reduced to 50I am very pleased, because as I indicated last week, I needed to be reassured that the chemo was actually doing what it was supposed to. Unfortunately it now means that Rachel is neutropenic, and we have to be a bit extra careful with her again until her counts improve. But having said that, both girls are on great form, and are looking forward to next week's half term break. We are hoping to take them to Eurodisney, so fingers crossed we'll be able to. I could have done without Isla's passport being out-of-date, though .......to say that has caused me a bit of stress over the past 24 hours would be understating the situation somewhat...!

Today, Paul's dad held a charity golf day to raise funds to buy equipment for the children's oncology ward at Leicester Royal Infirmary, where Rachel is being treated. It was a hugely successful day, and with the generous help from all taking part, he has raised in excess of £4,000 to buy much-needed syringe drivers for the daycare unit. A huge thank you to everyone, the support for the event has been phenomenal, and it is a tribute to Geoff that he has had such a wonderful response from his friends and golfing buddies.

Wednesday, May 17, 2006 1:16 PM CDT

Rachel's bloods this week are still showing high counts - neuts 1.3, hb over 10, WCC and platelets all fine, so she is still on 100% . Part of me is 'concerned' that the chemo isn't having enough effect, and I shall raise this with our consultant at the next clinic appointment in 2 weeks. Relapse during maintenance is rare, statistically about 10%, and the next bone marrow aspirate is not until the end of the maintenance treatment, in August 2007, so there are no reassuring little markers from now on to focus on. The upside of course is that Rachel remains extrememly well, and we hope this at least continues. Each week, when she has the oral MTX (methotrexate), she has very bad, painful diahorrea for about 24 hours. Once a month, the IV vincristine noticeably knocks her physically, she asks for her buggy for a few days. But other than that, she is laughing again. I had forgotten Rachel's raucous laugh, and now that it is returning, it feels very noticeable by its absence over the past year. That makes me a bit sad, but we are where we are, and we have to focus on what is ahead, not on what has passed before. So, I hope those of you who have not yet met the real Rachel, will do so in the coming year. She is truly a wonderful little girl, we are so lucky.

Thursday, May 11, 2006 5:26 AM CDT

Another week rolls by and the money is still rolling in for the Ride for Rachel. Click on the link below and, as I've said before, be amazed! We have another few things popping up over the next few weeks for various charities, let me tell you about the call I got from a friend yesterday; her son is 6 in a few weeks, she has about 35 children coming to his party. Her little boy has agreed that when they invite his friends to his party, they will be asked to give money for When You Wish Upon A Star instead of presents. She'll keep 10% of the donations back to give him a proper present from all his friends. Isn't that amazing? Thank you, Kate, and Joe is such a little star for being so happy to agree to help other sick children.

Meanwhile, Rachel remains on 100% of her oral chemo. If/when her blood counts drop, we will be instructed to administer 75%/50% accordingly. Her appetite is fine now, and she hasn't put on any additional weight after this lot of steroids. All remains steady, long may it continue.

Sunday, May 7, 2006 4:40 PM CDT

Rachel's 5 days on steroids has been very different this time. She has not had much of an appetite which is so unusual compared to previous spells on dexamethasone. She also has a bit of diarrhoea which I just need to check out - the pattern of side effects is not what I would have expected, and I need to know what I should be looking out for eg if she's not eating, should we be doing extra bloods to check for toxicity in liver/kidneys. She has been very tired this week but I suddenly understand that the first week in each 4-week cycle is much, much heavier than the other 3 weeks. One thing has come to my attention, which is the oral chemo she now has daily. On Lucia's site (she sometimes leaves messages on Rachel's guestbook, Lucia has ALL like Rachel and is on maintenance, but she is 15 so can describe how it all feels..) she says that the taste in her mouth from the mercaptopurine is just yuck, horribly metallic. Whilst I have noticed Rachel's tastes change over the past year (particularly chocolate, she just dislikes chocolate now), it has not affected her overall appetite, insofar as she has always found a food that she likes. It is quite possible that the extended time on mercaptopurine is now really kicking in, making a lot of food taste horrid. The problem is, at 5 years old she can't describe how she feels. Actually, she doesn't want to discuss it at all. But, really, these things are minor, compared to the pre-maintenance treatment and everything is generally calm and happy in the Smith household.

Wednesday, May 3, 2006 6:10 AM CDT

I am leaving the Ride for Rachel journal entry in below, but just wanted to say 2 things - firstly, note the tshirt prices below, I got the prices wrong it would seem! But more importantly, at clinic today Dr Madi confirmed that Rachel's bone marrow results were absolutely, completely and firmly in remission. This bone marrow result is effectively the result of a year on intense treatment, 1 year and 4 months of maintenance now to sweep up any rogue leukaemic cells floating around in Rachel's blood. It is extremely reassuring news, and a definite, if not overly exuberant, 'whoopee' is in order.

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Well, I think it is fair to say that the Ride for Rachel was a success. The cyclists rode 101 miles (although some rode 121 miles by mistake ........) in way faster times than anticipated. The first finishers were 1 1/2 hours quicker than they should have been!!!! How does that happen??! Almost everyone cycled in the manner of 'personal best' times, maybe it was the anticipation, the determination to complete the task, the motivation of raising funds for a wonderful charity or even simply the desire to demonstrate support for our little Rachel. Whatever the reason, it was humbling and not a little emotional, as all who were there can testify. £48,000 raised for Macmillan but all sponsorship is not yet in, so keep checking the link below for latest total. There is also some money raised from the evening event for Wishes4Kids, a Leicestershire charity, once the final numbers are added up I will put the total on here. I felt like I was in a bit of a daze for most of the weekend, for 2 days most of my energies were spent just trying not to cry. Mostly I managed it but of course Paul and I attempting to cobble together a speech and thank everyone was just too overwhelming for words, and I know there wasn't a dry eye amongst the 200+ who were there in the evening for the after-event hog roast. (Sorry about that, everyone....!) I think Martin might do a close-of-event newsletter, if so I will post it on here also. Won't be for a few weeks, though, since it can't happen until finances are all settled up. Photos will be posted on the photos section hopefully by tomorrow night, they may change regularly since we have so many, so do keep checking.

And Rachel? Took it in her stride, had a wonderful weekend with her extended family and friends, as did Isla. We hadn't really explained to her just how much of a focus she was, because she is a shy little girl at heart and she would have been too fazed. This is the end of her first month on maintenance, and whilst she is neutropenic at the moment, she is still very well in herself and full of life and energy. I think many people who hadn't yet met Rachel were surprised at how healthy she looks, and of course the wig/cap hides her lack of hair. Which, incidentally, is gently and steadily growing. Another couple of weeks and she will look great! More bloods tomorrow and clinic on Wednesday, I will be able to have a good chat with her consultant Dr Madi and hopefully get the results from her recent bone marrow aspirate. Which hopefully will be the right results, fingers crossed.

Finally, we have some Ride for Rachel tshirts still for sale. Rachel drew the picture of her on her bike (complete with teddy bear on the back!), and our lovely friend Emma Trayner got tshirts designed and made. £8 adults, £5 childrens, if you are even half-tempted please buy one, it will help our final total if we sell them all. If you don't have any other means of contacting us, just leave a message on the guestbook here and I'll get back to you.

Sorry - THIS is the 'finally' part - THANK YOU WITH BALLOONS, BELLS ON AND A LOUDSPEAKER SHOUTING IT FROM THE ROOFTOPS.......a huge, heartfelt 'thank you' to all the riders and all the sponsors for making this event so special and so successful. This was a family event, many families having 3 generations present and taking part, making it particularly poignant. Thank you to all the riders for the last 5 miles, many of whom were small children who had never cycled on a road before, let alone for 5 miles. What a wonderful sight that was, riders old, young and all in between. Thank you to all the helpers, many of whom just mucked in without being asked or seeking thanks, in the true spirit of a charity event. Martin, I hope you are suitably proud, you should be.

Monday, May 1, 2006 1:08 PM CDT

Well, I think it is fair to say that the Ride for Rachel was a success. The cyclists rode 101 miles (although some rode 121 miles by mistake ........) in way faster times than anticipated. The first finishers were 1 1/2 hours quicker than they should have been!!!! How does that happen??! Almost everyone cycled in the manner of 'personal best' times, maybe it was the anticipation, the determination to complete the task, the motivation of raising funds for a wonderful charity or even simply the desire to demonstrate support for our little Rachel. Whatever the reason, it was humbling and not a little emotional, as all who were there can testify. £48,000 raised for Macmillan but all sponsorship is not yet in, so keep checking the link below for latest total. There is also some money raised from the evening event for Wishes4Kids, a Leicestershire charity, once the final numbers are added up I will put the total on here. I felt like I was in a bit of a daze for most of the weekend, for 2 days most of my energies were spent just trying not to cry. Mostly I managed it but of course Paul and I attempting to cobble together a speech and thank everyone was just too overwhelming for words, and I know there wasn't a dry eye amongst the 200+ who were there in the evening for the after-event hog roast. (Sorry about that, everyone....!) I think Martin might do a close-of-event newsletter, if so I will post it on here also. Won't be for a few weeks, though, since it can't happen until finances are all settled up. Photos will be posted on the photos section hopefully by tomorrow night, they may change regularly since we have so many, so do keep checking.

And Rachel? Took it in her stride, had a wonderful weekend with her extended family and friends, as did Isla. We hadn't really explained to her just how much of a focus she was, because she is a shy little girl at heart and she would have been too fazed. This is the end of her first month on maintenance, and whilst she is neutropenic at the moment, she is still very well in herself and full of life and energy. I think many people who hadn't yet met Rachel were surprised at how healthy she looks, and of course the wig/cap hides her lack of hair. Which, incidentally, is gently and steadily growing. Another couple of weeks and she will look great! More bloods tomorrow and clinic on Wednesday, I will be able to have a good chat with her consultant Dr Madi and hopefully get the results from her recent bone marrow aspirate. Which hopefully will be the right results, fingers crossed.

Finally, we have some Ride for Rachel tshirts still for sale. Rachel drew the picture of her on her bike (complete with teddy bear on the back!), and our lovely friend Emma Trayner got tshirts designed and made. £4 adults, £3 childrens, if you are even half-tempted please buy one, it will help our final total if we sell them all. If you don't have any other means of contacting us, just leave a message on the guestbook here and I'll get back to you.

Sorry - THIS is the 'finally' part - THANK YOU WITH BALLOONS, BELLS ON AND A LOUDSPEAKER SHOUTING IT FROM THE ROOFTOPS.......a huge, heartfelt 'thank you' to all the riders and all the sponsors for making this event so special and so successful. This was a family event, many families having 3 generations present and taking part, making it particularly poignant. Thank you to all the riders for the last 5 miles, many of whom were small children who had never cycled on a road before, let alone for 5 miles. What a wonderful sight that was, riders old, young and all in between. Thank you to all the helpers, many of whom just mucked in without being asked or seeking thanks, in the true spirit of a charity event. Martin, I hope you are suitably proud, you should be.

Tuesday, April 25, 2006 1:31 PM CDT

I have posted a photo of the Scottish Ride for Rachel riders, they said it was a wonderful experience, the weather was kind and they have raised an as yet unconfirmed total for Leukaemia Research, but iro £1100 which is just fantastic, THANK YOU so much. My friend Hector just called me out of the blue earlier this year to say they wanted to do this, it is support from friends like that that has so warmed our hearts since Rachel's diagnosis. And of course a happy coincidence that we could link his event to Martin's event this coming weekend.

As for Ride for Rachel Mark II this coming weekend, I will just say again, click on the link below and be amazed at the monies raised so far. We have family flying in from Vail to do the ride, a family friend coming from Hawaii to do it. Our friends in Canada are always with us in spirit and I know that a surprise appearance would be just typical - but unlikely since Uncle John suddenly lost his fight with cancer last weekend. Our thoughts are with the Purkis family - our Canadian family - at such a sad time. It makes it even more poignant that all of you are helping families coping with cancer by supporting our Ride for Rachel this weekend.

Rachel is extremely well at the moment, still has a bit of weight to lose after the steroids a few weeks ago. Her weight will most probably yoyo each month now, 1 weeks weight gain, 3 weeks to lose it, and so on. (sigh). But, if it is helping rid her body of cancer, so be it, I don't care. She LOVED her party on Friday, was very poised and in control. Haven't posted a photo yet, will get round to it....!

Thursday, April 20, 2006 3:33 PM CDT

Today's little procedure went well, Rachel is fine and the consultant said the bone marrow came out easily - diseased marrow is sticky, in the past they have had to tug and dig a bit to get it out, so I am feeling happy at his comment. I also read the 2005 review of Rachel's trial (ie her treatment) - it says, of low MRD children, 0% have relapsed since the beginning of the trial. This means that the MRD appears to be a very precise measure. Rachel, you may remember, was measured as 'high MRD' at day 28 of her treatment, meaning that she had a high probability of relapsing in the future, therefore she was randomised onto the highest treatment protocol. Some children are randomised on the minimum regime. We were thankful at the time that she was getting maximum treatment, as time goes on and we learn more, we are unspeakably thankful that she has had the maximum treatment, giving her the best chance of a 'cure' on the initial treatment for the disease. There are so many children we see who have relapsed, it is just not possible to think that Rachel is in the clear, we know the risks, we see it around us. But, she is doing well, we hope that today's procedure will confirm she is still on the right path to recovery. Can I just say at this point that Leukaemia Research have funded this MRD research which is proving to be so pivotal in the treatment of childhood leukaemia. It looks possible that when this trial has ended, if the results continue to be so conclusive, that the NHS will take over the further MRD research - however, this trial ends in 2009, until which time the Leukaemia Research Fund continue to fund it.

Meanwhile, have you seen the Ride for Rachel total to date? Look at the link and be amazed ......
And, GOOD LUCK HECTOR AND FRIENDS FOR TOMORROW'S RIDE FOR RACHEL IN SCOTLAND, RAISING FUNDS FOR LEUKAEMIA RESEARCH.

Tomorrow is also a Big Day for Rachel - last year, she was admitted to hospital the week before her 4th birthday. Her birthday party obviously had to be cancelled, and this year, her birthday fell in the middle of the final intensification block. I knew she would not be well enough to plan a party, so I told her at the time that she could have a party when she was a bit better. Tomorrow is that day - the entertainer who was booked for her last year, is coming tomorrow to do her 5th birthday party. I know he will do her proud, he has called several times over the past year to check on her progress which is so touching. She is very excited, thank god we made it here.

Thursday, April 20, 2006 2:48 PM CDT

Today's little procedure went well, Rachel is fine and the consultant said the bone marrow came out easily - diseased marrow is sticky, in the past they have had to tug and dig a bit to get it out, so I am feeling happy at his comment. I also read the 2005 review of Rachel's trial (ie her treatment) - it says, of low MRD children, 0ave relapsed since the beginning of the trial. This means that the MRD appears to be a very precise measure. Rachel, you may remember, was measured as 'high MRD' at day 28 of her treatment, meaning that she had a high probability of relapsing in the future, therefore she was randomised onto the highest treatment protocol. Some children are randomised on the minimum regime. We were thankful at the time that she was getting maximum treatment, as time goes on and we learn more, we are unspeakably thankful that she has had the maximum treatment, giving her the best chance of a 'cure' on the initial treatment for the disease. There are so many children we see who have relapsed, it is just not possible to think that Rachel is in the clear, we know the risks, we see it around us. But, she is doing well, we hope that today's procedure will confirm she is still on the right path to recovery. Can I just say at this point that Leukaemia Research have funded this MRD research which is proving to be so pivotal in the treatment of childhood leukaemia. It looks possible that when this trial has ended, if the results continue to be so conclusive, that the NHS will take over the further MRD research - however, this trial ends in 2009, until which time the Leukaemia Research Fund continue to fund it.

Meanwhile, have you seen the Ride for Rachel total to date? Look at the link and be amazed ......
And, GOOD LUCK HECTOR AND FRIENDS FOR TOMORROW'S RIDE FOR RACHEL IN SCOTLAND, RAISING FUNDS FOR LEUKAEMIA RESEARCH.

Tomorrow is also a Big Day for Rachel - last year, she was admitted to hospital the week before her 4th birthday. Her birthday party obviously had to be cancelled, and this year, her birthday fell in the middle of the final intensification block. I knew she would not be well enough to plan a party, so I told her at the time that she could have a party when she was a bit better. Tomorrow is that day - the entertainer who was booked for her last year, is coming tomorrow to do her 5th birthday party. I know he will do her proud, he has called several times over the past year to check on her progress which is so touching. She is very excited, thank god we made it here.

Saturday, April 15, 2006 9:36 AM CDT

A quick update today - not that I have anything new to say. Rachel is on superb form, she and Isla have spent the week laughing and playing together beautifully, just enjoying the school holidays. Rachel fell off her bike yesterday, hurt her arm, finger and has an impressive bump on her forehead - but she was straight back on her bike again today, and she came running in, laughing, to show me the blood on her knee, having fallen off again! She's not a girl to let things get the better of her! She is due in hospital on Thursday for some IT chemo and a bone marrow aspirate, so I am keen to get that out of the way. Isla will come into hospital with us. I am now flushing her Hickman line at home once a week, to keep it in working order ie to prevent it clogging up to the point where we can't get any blood from it.

Other than that, the first of the fundraising events this month is next week with the Scottish Ride for Rachel taking place on April 21st from Inverness to Kilmacolm. My old friend Hector Dickson is raising money for Leukaemia Research by doing this 210 mile ride with a few friends, one of whom had childhood cancer himself 30 years ago. If you want to help their fundraising efforts, the web page is
www.justgiving.com/3d
and if you see them ride past you at any point with their Ride for Rachel tshirts, be sure to give them a big cheer!They will be updating their progress each day on the website, since the ride will be completed over 2 or 3 days.

Incidently, I updated the photos last week, but forgot to mention it in the journal.

Tuesday, April 11, 2006 1:19 PM CDT

Now that the 5 days on steroids are over, Rachel is coming back to us. Even after 5 days, her tummy is noticeably large and her face has the look of the moon again. She had to be handled with care over the weekend and refused to be parted from me, but so long as we were able to satisfy her not-always-reasonable demands, it was fine. So, this is how it will be for the next year and a quarter, I know the precise dates when she will be on the steroids, so social engagements will have to be managed accordingly. Which is fine, we can handle that.

*Warning - do not read the next 2 paragraphs if you are feeling a bit down, sad or depressed. Or if you are a child, since it might be a bit upsetting*
I have had a few waves of anxiety over the past week, for several reasons. This is not the forum for me to write about how we feel, this website is about Rachel, her illness and her treatment, and how she is coping with it. However, now and again I do feel that I want to tell everyone how it really is for Paul and I. Rachel and Isla are gloriously unburdened with the realities of a diagnosis like leukaemia, thank goodness, but perhaps despite appearances, it is never far from our minds. Another little boy from ward 27 died last week, very suddenly and of course devastatingly for his family. For most of us, death touches our lives as we lose elderly relatives. This is no longer the case for us, and other families like us. Somehow, seeing these children die makes death both MORE frightening because it is really happening to children we know, and not just as a freak isolated incident. But it also makes it LESS frightening because we know it IS all around us. Somehow it's clear that death is natural, we can try to do our best to prevent it, but it is there lying in wait for us all - maybe sooner, maybe later.

Undoubtedly, we use an enormous amount of energy every day in keeping our fears and anxieties under control. Mostly we manage it, sometimes I don't manage it and can spend a few days being tearful and emotional before I get it all under control again. The worst thing is, you never quite know when the emotions are going to gain control over you - it can hit you in the most banal and inconvenient of moments. It definitely kicks in in a negative way when stress levels are high ..... emotions get out of control very quickly because there are no 'reserves' to be a buffer.

Anyway - despite what I have written above, we are in a good place at the moment. Rachel is fine and she has another bone marrow aspirate next week, so we hope - expect - to hear that she remains firmly in remission. Actually, I am now thinking I shouldn't have written the above, in case it frightens anyone who reads Rachel's page to be cheered up! So, I am going to put a warning note ahead of the paragraph!

ON A VERY CHEERY NOTE .........Each time we go to London, Rachel asks when she can go to visit the Queen. So, whilst of course we always try to explain that the Queen doesn't have time to meet everyone, it's not so easy to explain to Rachel why it simply is not possible. Rachel also believes that when she grows up she will be a princess - not a nurse, doctor, vet, dancer, artist, actress, teacher or anything else. A princess. I do not know if these two are interlinked in some way. However, I do feel obliged to try to get her to meet the Queen if that's what she wants! So, if anyone out there has any ideas ....?!!

Friday, April 7, 2006 7:37 AM CDT

Whilst Rachel started maintenance on Wednesday with IV vincristine, she hasn't had any oral chemo this week because she is still neutropenic with neuts at 0.5. Every week now, she will have bloods done on a Tuesday and the oral chemo will be prescribed according to her blood levels. So she is on 0% this week, next week could be 100%, or more, or less. Meanwhile the dexamethasone is affecting her already. She has black circles around her eyes again (this happens within hours of taking it), she is more tired, more hungry and just a little bit grumpier than usual. But it is only for 5 days. Isla cricked her neck at swimming yesterday! so I had two little girls feeling very sorry for themselves last night, so much so they were both in bed by 7pm, and happy to be there. (7.30 is normal bedtime, usually with a bit of stretching it out until 7.45). Both bright little buttons this morning, though, excited about the Easter assembly at school, excited about breaking up for Easter holidays today, and excited about a trip to London for the weekend! I'll try to get some new photos up next week.

Tuesday, April 4, 2006 11:06 AM CDT

OK all change again - the hospital has just called to say could we please attend clinic tomorrow. Essentially what has happened is, the consultant has decided that there is little point in delaying another week, since firstly her blood counts are all significantly up other than the neutrophils, which will clearly follow (her white cell count has leapt up since last week: neutrophils are a type of white blood cell and will follow the white cell count up). Secondly, the advantage of maintenance is that each week when the blood results are analysed, they adjust the daily oral chemo dosage to compensate for low counts. So, we go ahead tomorrow, presumably on 50% or some reduction from the 100% dosage of oral chemo (mercaptopurine).

Tomorrow's chemo will be IV vincristine, oral mercaptopurine plus dexamethasone (steroid) for 5 days. The mercaptopurine is daily now for the next 71 weeks, end date is looking like 21st August 2007. Assuming she remains in remission of course. Maintenance is a reduction in the therapy that has saved her life. I view this now as the first steps towards being 'on her own,' and hence there is a little bit of fear that it - 'it' being the leukaemia of course - might come back. But be clear, it's not a view that it might come back, it's just a completely normal, underlying, tiny bit of anxiety which will always be with us and which we will always have to manage.

Monday, April 3, 2006 2:13 PM CDT

Bloods from today show Rachel's neutrophils at 0.33, so completely consistent to form, Rachel will have to wait another week before starting on maintenance. All other counts are raised, though, it's just a case of the neutrophils catching up. We are planning a trip to London for a christening this weekend, and now that Rachel will be drug-free, she will be much better humour than if she had started the dreaded steroids this week. (5 days in every month during maintenance, Rachel will be back on the steroids). However, assuming she starts next Wednesday, it means that over Easter weekend she'll not be on such good form. Heyho, you win some, you lose some.

Not much else to report. Dare I say it, all is well and 'normal' in the Smith household this week .......

Wednesday, March 29, 2006 11:04 AM CST

Panic over, both children are fine today. Rachel still has a cough but her temperature is only slightly raised so hopefully she is on the mend. Phew. As for Isla - well, she had a headache this morning! but is fine now. Phew, again.

Meanwhile, momentum is building for the forthcoming Ride for Rachel. Funds raised now amount to over £15k and the fund-raising is by no means over, far from it. We chose Macmillan as the main charity for this ride because it is a charity which touches many people's lives, be it through financial assistance when cancer touches their family and incomes are affected, or be it the practical assistance like we have had from our children's Macmillan nurse in getting supplies at home, filling in forms etc etc, or be it the palliative care which is so, so needed in the darkest of times. So, thank you all of you who have supported. We just want to do our bit, we don't take Rachel's treatment and related support for granted.

Tuesday, March 28, 2006 3:37 PM CST

I kept Rachel off school today - DEFINITELY the right decision as tonight her temperature has been touching 38.0 - on and off, and not above. And lower depending on which thermometer you use! So I am banking on the lower one being right!! Hopefully it will ease off, I am checking every half hour, mostly it is reading between 37.3 - 37.8. If it goes above 38 I will take her in, but meanwhile I am happy that even when I get a reading of 38, it doesn't stay there and it hasn't yet read 38 twice in a row, or even under both arms at the same time!
Even as I am writing this, I know how desperate it sounds! I really don't want Rachel to be admitted to hospital with a cold at this stage if we can possibly avoid it.

Meanwhile, Isla banged her head on her way to bed tonight, knocked herself out and of course has a bit of a headache. So we have had a few hours of worrying over her too, tonight, but she seems ok, hasn't been sick and whilst she says she feels a little bit dizzy, she appears fine.

Pass the whisky someone please ......

Monday, March 27, 2006 11:40 AM CST

Bloods today show neutrophils at 0.2, so there will be no progression to 'maintenance' this week! Hb at 8.8 also means a slight risk that she will need another transfusion, but hopefully not. And the final piece of today's news is that Rachel has developed a cold which is currently giving her a temperature of 37.5..........and we all know by now what that means!! I will continue to monitor her temperature this evening, she says she feels 'cold on the inside but hot on the outside' which isn't so good, but we'll see.

Sunday, March 26, 2006 12:21 AM CST

I got back today from a few days' skiing. Paul was looking after Isla and Rachel for a few days, not without incident as he ended up in A&E and in Ward 27 on Thursday night with them! It appears that both girls had been in the fields at their school, and suffered some kind of allergic reaction which caused redness and painful swelling in their hands. Interestingly, Isla had it more severely than Rachel - of course, she has a more robust immune system, more white cells to rally round in anger at whatever it was that was causing the reaction. They all had a night away in Minnie last night, and met me at the airport today. Poor Paul is wiped out, the girls had a great few days though! I also had a great few days away, although I am very glad to be home.

I will update in a day or so. Going forward, I suspect that I may not have too much to say from week to week, if all goes to plan. However, I just want to say again how AMAZED Paul and I are at Rachel's hair. It is definitely growing back dark and curly. How on earth does that happen?????!!! I will of course post some new photos once it grows enough - it is only a millimetre in length at the moment, but clearly curving!!!!!

Tuesday, March 21, 2006 3:40 PM CST

Well, I was completely wrong - the uracinase? (drug which dissolves blood clots) - worked a treat, and Rachel's line bled beautifully this evening. Tomorrow she gets some vincristine through the line, and that marks the end of her main treatment. Just great news. So when her hair grows back, it should be back for good. Maintenance will start when her blood counts are back up, and then it is 60 weeks on the following:
daily oral chemo (mercaptopurine)
weekly bloods to monitor levels
monthly IV chemo (vincristine)
3-monthly intrathecal chemo (methotrexate)
5 days per month steroids (dexamethasone)
2 days per week antibiotics (co-trimoxazole)

So, still on significant medication, but the aim is to keep her stable, so the dosage will be altered accordingly. She will not have the highs and lows of the past year, and whilst she will still be immuno-suppressed, it will be at a much less extreme level. Bring it on.

Monday, March 20, 2006 3:34 PM CST

Nurse came to take bloods today(at school), but the Hickman line wasn't playing. So we went into hospital this evening, again no luck, absolutely nothing was coming, so they have given Rachel a drug I can say but can't spell! just in case it might help break up any clotting at the end of her line. Personally I can't see this working, since the issue is not that the line is blocking because of clotting, it is that the vein wall is sealing the internal end of the line so that when you draw back on the syringe to get blood out, it is sealed. But when you put something in - heparin/chemo/saline flush - it is perfectly fine. The line has been like this for many months, but we have never failed to get anything out before. So, we wait for 24 hours and try again tomorrow evening. If we don't have any success, I think it might mean 'line out.'

Aside from the Hickman line being difficult, Rachel is well. She did manage to inhale some spaghetti tonight which really frightened her, she properly choked! She won't do that again in a hurry....!!! But she's fine now, just a little learning experience for her!

The children at Gaddesby School have been doing the 'Children's Marathon Challenge' today, which is a fund-raising activity jointly for the school and for Children with Leukaemia. Isla read 26 poems, and Rachel's class, being little, did various activities together - they sang 26 songs throughout the day, made 26 sandpies in the sand pit, drew 26 pictures, can't remember any more. The theme is obviously the marathon, hence the '26' of everything. What a lovely thing for them to do. Children with Leukaemia (www.leukaemia.org) hold 'The Amazing Great Children's Party' every year in London, at London Zoo I think, so hopefully Rachel will be there this year.

Wednesday, March 15, 2006 7:56 AM CST

New blood on Monday, back to school on Tuesday, only 3 more doses of chemo (vincristine and PegAsparaginese today, vincristine next wednesday) and Little Miss Rachel moves onto maintenance. She is on great form, she was a bit anxious about going back to school on Tuesday, a little clingy (understandably), but that has already worn off. Her hair is starting to grow back, and HUGELY disappointingly it is dark!!! How can that be??? Brown curly hair, loses it, blond straight hair grows back, loses it, now dark hair is growing back!!!!! It looks a shade darker than her original hair, and it is way too early to tell if it looks straight or curly. She wants it back how it was though, always has.

Not much else to report. Since my last journal entry I have looked into the issue of cord blood a little further. Basically, it seems that donating cord blood is not possible in the UK, unless you already have a sick child who might need it, in which case the NHS will facilitate the procedure. There are 4 hospitals in the UK who routinely approach expectant mothers to donate cord blood, but otherwise the only way to save it is to do it privately for your own personal use. The implication is that these 4 hospitals gather and store enough cord blood to satisfy the needs for both research and transplant. Recipients of cord blood for stem cell transplants will be matched via an international co-operation between all participating bodies who have cord blood banks, hence the reason the 2 children on Ward 27 receiving their cord blood stem cells from USA and Belgium respectively. It is interesting, and I suspect in 20 years it will be a very different story insofar as cord blood will be being collected and stored much more routinely for a variety of purposes.

Friday, March 10, 2006 10:48 AM CST

OK before I go any further, I would like you all to please click on this link:
http://www.easyjet.com/EN/About/charity.html
Actually you have to copy/paste it because this section doesn't facilitate a link ....... basically EasyJet have nominated Anthony Nolan Trust as their Charity of the Year, and by clicking on the link they will pay 25p to the charity. This is the bone marrow charity, I have also put the link in my 'links' section below so you can just click on it there. Please do it, it will cost you nothing.

Rachel remains well, although her haemoglobin is 8.1 and falling. So she is going in on Monday for a blood transfusion which will perk her up nicely in time to go back to school on Tuesday! She has been at school for about 2 weeks in total since Christmas, so she really needs to be back, not least of all because I can see that her confidence has gone. She'll be fine once she gets back to school though, and I have absolutely no doubt that we have done precisely the right thing in keeping her off school during this final piece of intensive chemotherapy.

Meanwhile the ballet show is going swimmingly! The children are so loving it, what a super experience for them even though I have let them stay for the finale one night only (last night - finished at 10pm!!!!!!!). They just don't have the stamina to cope with any more.

One final thing for all you pregnant ladies out there - bone marrow transplants are effectively the therapy of last resort for children who have not responded to chemo. CORD BLOOD IS USED FOR STEM CELL TRANSPLANTS FOR YOUNG CHILDREN -PLEASE THINK LONG AND HARD ABOUT SAVING CORD BLOOD, WHICH IS EFFECTIVELY A WASTE PRODUCT WHEN YOU GIVE BIRTH. The problem is, in this country we are not yet set up so that this happens routinely. The cord blood bank is in Belgium, and 2 children on ward 27 have recently had stem cell transplants with cord blood - 1 came from USA, the other is coming from Belgium. The mother of the child who is having the Belgium-sourced cord blood actually had a baby in October and saved cord blood but it was not a match for her 6-year-old daughter so it went to the cord blood bank in Belgium. PLEASE THINK ABOUT IT, LITTLE SALLY AGED 2 IN WARD 27 AT THE MOMENT IS ALIVE AND RECOVERING FROM HER TRANSPLANT BECAUSE OF A CORD BLOOD DONOR.

Friday, March 10, 2006 8:49 AM CST

Rachel remains well, although her haemoglobin is 8.1 and falling. So she is going in on Monday for a blood transfusion which will perk her up nicely in time to go back to school on Tuesday! She has been at school for about 2 weeks in total since Christmas, so she really needs to be back, not least of all because I can see that her confidence has gone. She'll be fine once she gets back to school though, and I have absolutely no doubt that we have done precisely the right thing in keeping her off school during this final piece of intensive chemotherapy.

Meanwhile the ballet show is going swimmingly! The children are so loving it, what a super experience for them even though I have let them stay for the finale one night only (last night - finished at 10pm!!!!!!!). They just don't have the stamina to cope with any more.

One final thing for all you pregnant ladies out there - bone marrow transplants are effectively the therapy of last resort for children who have not responded to chemo. CORD BLOOD IS USED FOR STEM CELL TRANSPLANTS FOR YOUNG CHILDREN -PLEASE THINK LONG AND HARD ABOUT SAVING CORD BLOOD, WHICH IS EFFECTIVELY A WASTE PRODUCT WHEN YOU GIVE BIRTH. The problem is, in this country we are not yet set up so that this happens routinely. The cord blood bank is in Belgium, and 2 children on ward 27 have recently had stem cell transplants with cord blood - 1 came from USA, the other is coming from Belgium. The mother of the child who is having the Belgium-sourced cord blood actually had a baby in October and saved cord blood but it was not a match for her 6-year-old daughter so it went to the cord blood bank in Belgium. PLEASE THINK ABOUT IT, LITTLE SALLY AGED 2 IN WARD 27 AT THE MOMENT IS ALIVE AND RECOVERING FROM HER TRANSPLANT BECAUSE OF A CORD BLOOD DONOR.

Monday, March 6, 2006 3:49 PM CST

This week brings a general anaesthetic tomorrow (Tuesday) for intra-thecal chemo, and 4 days of IV chemo at home plus another week of oral chemo administered at home. Same as last week but without the cyclophosphamide. Rachel continues to be extremely well but she is still off school in an attempt to preserve her well-being. By next week, the effects of the intensive chemo will be showing, she is likely to have increasingly less energy but as I said, we are trying to keep on top of it by keeping her off school: we had too many unscheduled hospital visits last month for my liking.

This week also brings the ballet show - 180 children including Isla and Rachel, 4 consecutive nights Wed-Sat - it is so exciting for both girls. Rachel would not be able to do it if she was at school, but as it is, she can manage a couple of hours in the evenings, and it is a wonderfully uplifting experience for both of them. Isla is a lemon and Rachel is an orange. Awwwwwwwwww, not a dry eye etc etc....Actually, I must mention, proceeds are going to Leukaemia Research. I was taken quite by surprise when the principal, Janice Spence, told me. I find gestures like that so incredibly touching, I have never met Jan and yet she had no hesitation in becoming part of our wonderful circle of friends and family who have so actively supported Rachel and us since her diagnosis a year ago. Increasingly I just know that our lives are so much richer now than before. What a gift to Rachel, to know that she is so loved by so many people.

Wednesday, March 1, 2006 6:49 AM CST

Full day in hospital yesterday, all fine although Rachel has been sick this morning as a result of the cyclophosphamide. I simply didn't give her the anti-nausea medicine quickly enough this morning, but she is fine now. Nurse was here this morning and for the next 3 mornings, to administer the cytarabine, but there shouldn't be any more nausea. Rachel is also having oral chemo daily for 2 weeks, again which should not make her feel unwell - until such a point as her bloods are low again. Meanwhile she is still on wonderful form, an absolute joy. I think to protect that wellbeing, I'll keep her off school for the next few weeks. I can't see the point of risking her catching something at school when she only has 4 weeks of the heavy stuff to go.

There was a little girl called Jessica in hospital yesterday. She is the same age as Rachel, with the same disease, but is a year ahead in her treatment. She has a port, rather than a Hickman line, so yesterday when Jessica was having her vincristine into the port, Rachel watched. There was clearly absolutely no discomfort, Jessica was completely disinterested in what was being done to her, but Rachel is still not quite convinced. I will keep gently chipping away, to make her feel more comfortable with it. It would make such a huge difference to her quality of life for the next year and a half that I want to give her every chance to have it, but I won't do it against her will.

Monday, February 27, 2006 2:46 PM CST

Rachel's blood counts are ok to start the final 4 weeks of intensive treatment tomorrow. Great news, we just want to crack on with her treatment. She is back to her old self at the moment - bright, happy, full of life. By tomorrow night she won't be feeling so good, and she won't be great for the next few weeks. The chemo on this part affects the Hb, so she is likely to need blood transfusions. But, as we keep saying, if her blood is being so effectively killed off, it surely means the cancer cells are being killed off.

I've kept her off school all last week and today. We'll see how she is by the end of the week, but I had a call today from the school (who are so pro-active, they are fantastic) to say that chicken pox has appeared in the pre-schoolers who join Rachel's Reception class at times during the week. I need to have a think and a chat with the Macmillan nurse to see what the best course of action is, but Rachel has barely missed any school until now, she has done supremely well. Now, being the final intensive block, my inclination is to think that it is not worth further risking her health at this point. We'll see, I haven't thought it through fully yet. But it could mean that she won't be back at school for several weeks.

Tuesday, February 21, 2006 3:17 PM CST

Rachel's antibiotics were changed today, back to teicoplanin which is 24-hourly. Hence she was allowed home this evening which is great. There are a few niggly little things going on with her, it gets quite complicated to explain but the main story is, we still don't know about her line, this second course of teicoplanin is another attempt to get rid of the bug. Cultures taken every few days will give the answer in due course, and in the meantime we hope she doesn't spike any temperatures again like she was doing last week. The temperature spikes were probably due to the developing cold/cough, but she has been stable since Sunday, which is why she has been allowed home. Meanwhile, her bloods are still too low to progress in the block, so we'll try again on Monday with a view to starting on Tuesday.

She is in good spirits again now. Her hair has totally gone again, and she is starting to lose the weight she put on in January with the steroids. The pushchair has been in use again since the turn of the year, she just isn't able to walk very far but that's fine, we can cope with that.

Sunday, February 19, 2006 1:24 PM CST

Very quick update: we left for Brighton midday Thursday. Rachel was admitted to Brighton Sick Children's hospital on Thursday night 10pm - neuts at 0.18 and temp of 38.7 means febrile neutropenia, and industrial strength IV antibiotics every 8 hours. She was discharged from there today at about 2pm and is now in Leicester Royal Infirmary for the next few days. As am I, I have just popped home (leaving Paul/Isla/Rachel at LRI) to have a shower and get change of clothes for the next few days. Looks like her Hickman line has been invaded by some very territorial bugs, so it will probably have to come out. Will know more tomorrow. Meanwhile, she had a great birthday because she was allowed out between lunchtime and tea-time, so she had a lovely party at Ollie's house, and was really spoilt by Laurie, Craig, Kerrie and Sadie - thank you so much for making her birthday special.

Wednesday, February 15, 2006 7:28 AM CST

With Rachel's blood counts being too low to progress on the treatment, I have just heard that the blood cultures taken on Monday and Wednesday have both come back negative, hence we are able to go away tomorrow as hoped, albeit with a visit to Brighton Hospital on Friday for the final teicoplanin dose. But that's no problem. The bigger problem is how to hide Rachel's new bike somewhere in Minnie for 24 hours so that she can have a proper birthday surprise on Friday morning!! ( for the uninitiated, 'Minnie' is our campervan...). We decided not to have a party on her birthday this year, since she was still in the middle of intensive treatment. Instead, she can have a party once she is settled on maintenance.

Will update again on Monday, when we have blood results (for starting treatment or not on Tuesday).

Monday, February 13, 2006 2:22 PM CST

Rachel's blood count has plummetted, so there will be no hospital tomorrow, and we will try again next Monday, with a view to starting the final part of intensive treatment on Tuesday next week. Great news is, no chemo for Rachel over half term and her birthday which is on Friday. Bad news is, she is on 24 hourly IV Teicoplanin (antibiotic) for the line infection, which means we are still tied to nursing care on a daily basis. It will still be possible to get away for a few days, but it means I have to put in place some community care wherever we are going. I have the drugs here, but I cannot administer them through her Hickman line. However it is perfectly possible to make the arrangements, so that is what I will be trying to do tomorrow, so that we can all get away for a few days. Having said all of that, the situation could yet change. More blood cultures were taken today, we'll see in 48 hours if anything develops. If her line continues to grow a bug, it means that the teicoplanin isn't working, and they will have to change the treatment. So we'll see what Wednesday brings before we can make any firm arrangements.

Meanwhile Rachel is on great form again. She is a bit chubby after the steroids, but the appetite is slowly getting more normal, and once she starts the next chemo she will have little interest in food, so the distended stomach will hopefully go back to more normal proportions. I have to keep reminding myself that we are lucky that Rachel has continued to have good nutritional intake. Most children with leukaemia have the opposite problem, ending up with ng tubes and the associated knock on problems of inadequate nutrition. Rachel has done really well so far, and she alone is creating the hope that we all have for a complete recovery, she so deserves it.

Friday, February 10, 2006 4:03 PM CST

On Wednesday evening's sudden outing to hospital, they took bloods and blood cultures. This afternoon, I had a call to say that the cultures had been growing, and could I bring Rachel in. So, straight from school we went in to hospital for the 3rd time this week, and she had some IV antibiotics which will be every 12 hours for the first 48 hours, and then every 24 hours. So, she has an infection in her Hickman line, last time it was 2 weeks in hospital culminating in her old line being removed and a new line inserted in the opposite side of her chest. This time is appears a bit less dramatic, but we'll see if the antibiotics work or not. Each time they take bloods they culture them with the antibiotics Rachel is being treated with. That way, they can see if the antibiotics are killing the bug or not. If they are not working they try another antibiotic, and culture that too. And so on. Last time, after something like 7 antibiotics (industrial strength antibiotics....), the bug was still there so they had to remove the line, it was the only option left. So we'll see. Fingers crossed. Rachel remains fairly well, though, well enough to want to be at school today. I think maybe the antibiotics she is already on (for the tummy bug) have eased the effects of the line infection somewhat.

Meanwhile, last night at Debbie and Carl's house, they had a little house sale in aid of Leukaemia Research and raised £505! isn't that great? I'll post it on justgiving.com/thesmithys when I get a chance, but tomorrow we have to be in hospital both in the morning and evening with a ballet rehearsal thrown in in the middle of the day. So apologies to those involved, I promise I will properly update last night's fundraising on the justgiving.com site when I have time to do it justice.

Thursday, February 9, 2006 2:16 AM CST

Popped back into hospital last night - at 6pm, Rachel suddenly had a bad headache, that started off at her forehead. Half an hour later, it seemed to have moved to the side of her head, but by then she wasn't talking, and her temperature was slightly raised. Paul came home, and she was just totally ignoring him, at which point we were increasingly concerned because that was not unlike how she was when she had the seizure during the summer. I called hospital, they said to bring her in, but by the time we got there she was starting to perk up. Within an hour, she was all but back to normal albeit still with a slight headache. She is fine this morning. It might just have been a bad headache, nothing more than that, although it has never happened before. It was a worrying hour or 2, but, thankfully, all seems well. She is in the middle of her final intensive block of chemo, plus the tummy bug , so her system is being rather pummelled at the moment. Not exactly a surprise, I guess, that she got a headache - wouldn't we all?

Tuesday, February 7, 2006 10:50 AM CST

ahhhh, forgot to add, Rachel was discharged this afternoon .......only a little 24 hour stay this time to help her on her way ......

Tuesday, February 7, 2006 9:03 AM CST

Rachel was admitted yesterday afternoon, because the tummy thing just wasn't shifting, and despite Rachel's best efforts, it was starting to show in her bloods that she was becoming dehydrated. She's been on fluids (drip) overnight, plus oral antibiotics, and hopefully this should help turn the corner for her. It is just the way it is for immuno-suppressed children, they simply need a bit more help to cope with routine illnesses.

Rather poignantly, she drew a picture of herself today in hospital as having straight hair. I asked who it was, and she said 'Rachel.' So now even her own image of herself is changing, precisely one year after she was first admitted to hospital. I knew then that I was losing my little girl, that she would never be the same again, and it still shocks me how prophetic that feeling was. Firstly, how it physically changed her forever, but also how it has profoundly changed all of us. Once again, I read something (from an adult leukaemia sufferer who is doing ok so far)which I quote,
"If I had to choose between never having leukaemia or having battled leukaemia and getting the opportunity to have life experiences like this one - it would be a no-brainer :)"
OK, he has survived thus far, but what is it about life-threatening illnesses that teach us humility and appreciation of life? You hear it again and again, Geoff Thomas said it the day after his Sports Personality of the Year award, Michael J Fox said it in his autobiography, Christopher Reeve was quted with those sentiments.... does it take true adversity in life before you can find real happiness? Maybe, just maybe, especially if you haven't been acqainted with adversity thus far in your life.

Saturday, February 4, 2006 9:01 AM CST

Rachel did a great job yesterday afternoon, with the threat of hospital looming over her. Once she understood why she had to drink lots, each time she was sick she asked for more water! Wise child ..... it did the trick, and today she is much better, although subdued. Paul and I are secretly pleased that she couldn't eat yesterday, isn't that awful? But she eats so much when she's on the steroids. Her appetite is back today, and she has no more chemo until 14th Feb, but that is count-dependent so there may be a delay until her neutrophils get up to 0.75. I hope there is a delay, because it is both half term and her birthday that week, so it would be nice for her to be feeling better, not having had chemo for a few weeks. We can maybe get away either to Norfolk or in Minnie.

Friday, February 3, 2006 7:01 AM CST

Tummy bug is getting worse, it's now coming out both ends and she can't even keep water down, it comes out one end or the other within minutes. If she can't keep anything down by late afternoon, I'll have to take her into hospital. Basically, the hydration is a big issue because there is the added chemo factor, ie she has chemo in her system which is toxic to kidneys, so it is pretty important to keep fluid intake up. Fingers crossed it will settle before we have to think about hospital.

Thursday, February 2, 2006 4:25 PM CST

Chemo yesterday, and back on the steroids for a week, Rachel is a bit on the tired and grumpy side, but otherwise fine. She was up all night last night with exploding bottom syndrome, a bug or virus, so I took a stool sample in today, and if there is anything to really worry about I would have heard by now. So, a couple of days off school won't do her any harm, she slept for a couple of hours today, and maybe it will help her through this week of steroids. It is amazing how black her eyes go as soon as she starts the steroids - the black circles appear around her eyes within hours, and it does change her appearance. Her hair is also starting to thin. She hasn't noticed, and we will not mention anything in front of her unless it becomes so obvious she will have noticed herself. At this point it is starting to look a bit patchy, that's all. I am still holding out a little hope that it won't all fall out, but I know it is wishful rather than realistic.

1 Year anniversary of her admission to Leicester Royal Infirmary is on Monday. Feels like leukaemia has always been in our lives. Still, her birthday this year will be a happier event than last year. Probably as emotional, though.

Tuesday, January 31, 2006 3:12 PM CST

Rachel is due next chemo tomorrow (doxorubicin and vincristine), along with starting another week on dexamethasone. I am dreading this now, because her appetite is just insatiable at the moment. She is piling on the weight very quickly, and we have now 10 days of that to look forward to. It is very difficult to refuse a desperate child who is crying for more food, although I try to give her small portions each time,and try to give her lowest calorie things possible. Tonight for dinner, she had 4 slices of pizza, a few pieces of carrot, 1/2 an apple, a jammy dodger, a marshmallow, 2 plates of prawns, 5 chicken nuggets, and 2 helpings of risotto. And she has been off the dex for a week. She will wake up hungry, this morning she wanted a bacon roll with extra bacon on the side. Bacon and ham are big favourites, the salty taste seems to be a craving for those on chemotherapy in general. She has put on 4lbs since she started this block a few weeks ago (quite a lot when you only weigh 3 stones), and more to come for sure.
Well, at least she hasn't had to have an ng tube (nasal-gastric feeding tube) as most of the other children on the ward have needed.

Friday, January 27, 2006 8:21 AM CST

Rachel's temperature last night reached 37.5, but clearly she is fighting off the cold, and by midnight it had eased back below 37 again. Fine this morning, just keeping vigilant.

I gave blood today. To my surprise, I felt quite emotional. Oh, those needles aren't nice! It really makes you empathise with what these children go through day in, day out. I also went on the NHS bone marrow register (upper age 44) and have a leaflet to enquire further about platelet transfusions. www.blood.co.uk is the website, please think about giving blood if you are able.

Thursday, January 26, 2006 6:50 AM CST

Rachel finished steroids on Tuesday night, and this morning she is back to her normal happy self. She had more IV chemo yesterday, after we picked her up from school at midday - she was very flushed, her temperature was slightly raised, but she's fine, she just has the beginnings of a cold. So, we just need to make sure she takes it extra-easy until it settles. Temperature still a little bit up today (36.5), and in fact her neuts are 6.9 and white blood cells well over 200. This indicates that her immume system is responding to fight off the virus, and hopefully it will win! If it doesn't, she'll need some assistance.

Otherwise, next chemo on Wednesday, plus steroids again for a week. This time, her food fetish is prawns, apparently she doesn't like lasagne any more (not surprised, she ate lasagne every day for about 3 months...). She wants prawns for every meal at the moment, every day, although obviously I don't let her have them for breakfast and she can't have them in her packed lunch (not refrigerated) so she has them as soon as she gets home, and again at tea. Weird. But she has been less manic, which is a relief.

Saturday, January 21, 2006 3:27 PM CST

Rachel has not been quite her usual bubbly self for the past day or 2. She is extremely tired - although absolutely insistent that she wants to do full days at school! - and very attached to Mummy. Even at home, all she wants to do is sit on my knee and be cuddled. She went to bed at 6pm tonight ("when can I go to bed, Mummy" - she is SUCH a good girl, asking so politely when clearly all she wants to do is curl up and go to sleep) after not a hugely tiring day, but an emotional hour or so at the cinema watching 'Lassie' obviously took its toll! She also needs to buggy at the moment, she just doesn't have the energy to walk more than a few yards. So, the heavy chemo this week and the steroids have had an immediate and visible effect. Next chemo is on Wednesday, when her bloods will also be done, but if she continues to be so tired I may take her in before then to get her bloods done, just to make sure all is well. She will probably need blood transfusions over the next few weeks, this delayed intensification block affected her haemoglobin when she had it last time. (It is only when the haemoglobin falls below 8 that the children are transfused - the other blood counts are left to recover themselves, with the exception of platelets which are given only if absolutely necessary for clotting).

So, we shall see how the next week progresses. I would prefer she did half days at school, but if she is happier being at school then I shall not stop her. The purple wig has died, buried in the bin without ceremony tonight. It saw her through a tough 4 months, a real success but it has turned into a matted rug! After a bit of persuasion over the past 2 weeks, today she agreed to move onto wig number 2, the blond braids - which suit her beautifully and actually this wig is the same colour as her new hair. Of course, she will lose all her hair over the next 2-3 weeks, and who knows what will grow back next!

Friday, January 20, 2006 5:40 AM CST

The steroid effects are starting to kick in. Last night, Rachel's eyes were ringed in black, and she was extrememly tired - but still managed to eat almost a whole chicken for dinner!!!! I have given an extra lunchbox to the teacher for her, in case she gets hungry at school. The sickness has worn off already (from wednesday's doxorubicin) which is great. After school today we'll pop into hospital for the pegAsparaginase. We have to stay an hour afterwards to cover any adverse reactions, but she has generally been ok with this drug.

Happy weekend all!

Wednesday, January 18, 2006 12:11 AM CST

IV vincristine and doxorubicin today, with IV anti-nausea medication and oral steroids, the dreaded dexamethasone. So Rachel will be experiencing the concurrent delights of nausea and extreme hunger over the next few weeks! We have a good supply of oral anti-nausea medicine at home, it works extremely well IF you keep ahead of the game. Let it go 5 minutes too long, and it gets messy....but in the past I have been told off for giving it too frequently, so it is a fine balance. Friday is the painful intra-muscular chemo, PegAsparaginase, the penultimate dose of PegA in the entire treatment.

I had a very general conversation with the senior oncology nurse, who said that once she has settled on maintenance, we could realistically think about going overseas. Of course, the main obstacle will be insurance - for the rest of her life, Rachel will have this problem I guess. We have to wait a few months to see how her body behaves on maintenance, and of course the other issue is her Hickman line. I would dearly like to swap her Hickman line for a port once this block is over, although I do not want surgery for the sake of it. But, 15 months on maintenance, Rachel could have a much more normal existence during that time if she didn't have the line.

Monday, January 16, 2006 2:19 PM CST

Well, tomorrow Rachel starts the final intensive block, which will take her through the 1 year anniversary of her diagnosis. The horror of her illness is now no longer with us, the leukaemia is such a total part of our lives now that there is no shock, nor is there dread at what lies ahead. We are just praying that Rachel will get through the treatment successfully, and that there will be no relapse. And if there is, we all carry on as we are now, all helping Rachel fight the disease as she is fighting it now, with determination, stoicism and a disregard for the obstacles in her way. It both feels as if this year has gone in a flash, and as if it has always been this way. Truly, I have no strong memories of Rachel as she was, just how she is now. The old photographs are of a different child. The thing is, I knew that a year ago, I knew that she would change very quickly, rather than just grow into different stages as normal children grow, and that was partly why it was so difficult to accept.

Anyway, her bloods today are sky high, she is on super form ready for tomorrow's intra-thecal methotrexate. Her protocol is on http://rum.ctsu.ox.ac.uk/projects/ukall2003/regimenc.xls

and she is starting Delayed Intensification II which will last probably 10 weeks - it is an 8 week block, but there is a break in the middle to allow her bloods to recover before starting week 5 of the 8 weeks. Last time she had a 2 week delay before her counts came up. So, once that is finished, it is maintenance for 60 weeks hurrah. I work out that her chemo finally finishes in July 2007. All we hope for between now and then is that she remains in remission. And in the meantime we will try to make sure her life is as 'normal' as it can possibly be. With as many treats as we can pack in, of course! For both our wonderful girls.

Yesterday saw the second warm-up ride for the Ride for Rachel. It was a real success, even the Duchess of Rutland popped in to show support, complete with a whip-round from her house guests at the castle this weekend! The local press were there to record the event, Rachel is becoming a regular in the local newspapers these days. But the support of friends and family is unyielding, thank you all.

Wednesday, January 11, 2006 8:19 AM CST

Well, believe it or not, Rachel's neutrophils have fallen further, to 0.49 today, which means that she will not start the block tomorrow. Instead, we try again on Monday with a view to starting on Tuesday. It just shows how long-lasting the effects of the chemo are - her last chemo was on Boxing Day and even then it was only vincristine, ie they didn't give her the methotrexate because her counts were too low then.

The one thing I am now disappointed about, is that she is now likely to be suffering from the effects of her steriods on her birthday. You may recall that the steroids make her grumpy, unreasonable, antisocial, depressed and EXTREMELY hungry. With that in mind, we'll have to give her birthday schedule some thought (it's the last day of her half term holiday).

Monday, January 9, 2006 4:48 PM CST

Neutrophils are 0.73, so no hospital tomorrow (Thursday) for Rachel, instead it is bloods again on Wednesday with a view to starting on Thursday. Nothing else to report, the girls are both thoroughly enjoying being back at school, and they are especially excited about getting the Oranges and Lemons costumes today for their ballet show......in March/April? not sure when, but I will DEFINITELY be posting a photo when it happens......!

Thursday, January 5, 2006 2:42 PM CST

Bloods from yesterday are neuts 0.55 (up from 0.4 last week), everything else fine. So, bloods on Monday need to show neuts at 0.75 or above to start, I expect they will be above there. All else is well, the girls are very happy to be back at school, and back into a routine. Paul and I also seem to be much more optimistic, with the last intensive block about to start and the prospect of Rachel being on maintenance almost here. It seems unbelievable, when she was diagnosed last February, maintenance seemed such an eternity away. We have lost out little baby girl, though, she was still such a sweet cuddly toddler, and now she has grown up so much, I wish we could have her back as she was this time last year.

Sunday, January 1, 2006 12:37 AM CST

Happy New Year! We certainly hope it will be a happier year than 2005 has been, not only for us but for all our friends and family too, many of whom have had tough times this year too.

Rachel is currently on 2 weeks of recovery, the final delayed intensification block being scheduled to start on Jan 10th. Bloods to be taken on 3rd Jan at home and 9th Jan at school, and her bloods need to show neutrophils >0.75 and platelets >75 to start on 10th. If they are not, we wait until they have recovered to those levels. With Rachel, she hasn't had any problem with platelet levels since the first week of treatment, it is just her neuts which have held her back throughout. She remains well, but we are being very careful not to let her overdo it. Her hair is gorgeous at the moment, blond, short and fluffy, but she will lose this when she starts the intensification block. It is the doxorubicin which clears all the hair very quickly, eyebrows and eyelashes too, and she has 3 doses of that in January, 3 weeks on the run. She knows she will lose her hair again, which is probably why she is still refusing to be seen in public without the wig. It blew off yesterday, and she cried for 20 minutes, so she still obviously feels hugely sensitive about it. Shame, she looks so CUTE at the moment!

Monday, December 26, 2005 1:17 PM CST

Today was the final dose in this block. Rachel's neutrophils have dropped to 0.4, so the scheduled methotrexate was omitted, and she only had vincristine today. I am quite relieved, it means that she is less likely to unwell over New Year so although not quite in the clear yet, I am hopeful we will manage to see out the festive period without incident. Her counts are still dropping, and she still has the cough/cold, but the additional oral antibiotic (in addition to the regular antibiotic she takes each Sat/Sun)seems to have done the trick.

Rachel now has 2 clear weeks to allow her bloods to recover, and is scheduled to start the next, and final, intensification block on January 10th. Her blood counts have to be at the required level, last time she had a 1 week delay (ie beyond the scheduled 2 week recovery period)but of course she was hospitalised during that 2 week recovery period - for 2 weeks, as it happens - with a line infection.

Once this last block is finished, she moves on to 'Maintenance' for 60 weeks. Maintenance is:
oral chemo daily (mercaptopurine at home);
IV chemo monthly (vincristine, hospital);
IT chemo every 3 months (methotrexate, under general anaesthetic);
Steriods 5 days per month (dexamethasone);
antibiotics 2 days per week (septrin).
Not exactly light medication! but a lot lighter than currently, and whilst still immuno-suppressed and therefore vulnerable,she will be less likely to become unwell than has been the case. But as you know, Rachel has been very robust during this year, she has done extremely well to keep going with only 4 unscheduled stays in hospital since her treatment began, 3 of which were only for 2 or 3 days

I will probably next update the journal when she is about to commence the final block, unless anything untoward happens. Meanwhile, GOOD RIDDANCE to 2005.......

Friday, December 23, 2005 11:13 AM CST

Been in hospital most of today with Rachel and Isla, for Rachel's assessment ahead of chemo on Monday. Basically, her cough/cold has taken a turn for the worse, she is now crying because of ear pain. Temperature got to 37.7 when we were there, having been 36.1 this morning, and we have had this precise scenario before, when the temperature very quickly soared to 39.5. So, we were facing a minimum 48 hour stay in hospital at 3pm this afternoon. However, her blood results came back at 3.30pm, and she is NOT neutropenic, so the consultant was happy for us to control her temperature with calpol and come home with oral antibiotics. If the situation worsens we will take her back to hospital. For those who haven't read previous journal entries re neutrophils, these white cells effectively are the immune system, when the neut count is >1, she has some ability to fight illness, when <1, she needs help to cope with any illness she might have. 2 weeks ago, her neuts were as low as 0.06, today's neuts are 1.4 but will be falling because of last week's chemo. My guess is we are still 50-50 for Christmas Day in hospital, which is a lot better than where we were earlier today.
Meanwhile, sponsored Christmas carols in the pub on Christmas Eve, for CLIC Cancer Care (Caring for Children with Cancer), please come along. Hopefully we will be there too!

Monday, December 19, 2005 2:34 PM CST

Well, now that the excitement of Lapland has passed and we have all caught up on our sleep, we're now looking forward to a quiet Christmas at home. Hopefully! Isla has a heavy cold and cough, Rachel is showing signs of the same and bearing in mind she had chemo on Friday and Saturday, once that starts to affect her blood counts we just have to hope that she can deal with it. Otherwise, Christmas in hospital is still a possibility. She is due assessment on Friday 23rd, with final chemo in this block on Monday 26th.

Meanwhile, Scottish Television showed the Lapland story today, if you are not yet thoroughly bored by it, here is the link to their story: http://scotlandtoday.scottishtv.co.uk/content/default.asp?page=s1_2_2&newsid=9916&newsType=
3 bits featuring us:Isla doing a snow angel; Mum and Rachel interview; Rachel and Isla on the only 2 pink sledges in the forest, pulled along by Mum and Dad.

Friday, December 16, 2005 1:11 PM CST

Lapland - where to start - probably at the end. After a 4am start, we finally came through the departures at East Midlands Airport at about 11pm. Rachel had kept going at full pelt until about 1/2 hour before we landed, and after that she had absolutely nothing left. So, we had to put her in a wheelchair. Meanwhile, Isla was sick as we landed, was also exhausted, so we popped her in a wheelchair too. As we came through the doors, the scene waiting to meet us was just overwhelming - actually, it was beautiful. There was a choir (band?) of young adults singing Santa Claus is Coming to Town with accompaniment,mikes, lights,the works. The press (both TV and newspapers, who had been with us all day) were waiting, having all disembarked first to get in position, along with Barbara, founder of the When You Wish Upon A Star charity, who had massive Christmas bags for all the children. And to cap it, everyone who was waiting outside the departure area, APPLAUDED the children as they came out. It was so emotional, magical, overwhelming, after such an emotional and magical day. The tears were flowing as you can maybe imagine, although I had 2 different emotions, one of which was slight embarassment that our perfectly healthy number 1 daughter had somehow managed to milk the sympathy vote too!!!! (So if you see Isla in a wheelchair on Central News, don't panic!). What a way to end the day.

Photos will be on tonight. We went to the forest to do husky sleigh rides, reindeer sleigh rides, skidous, sledges, that sort of thing. Then back to Rovaniemi, the capital of Lapland, for lunch and Santa, who came into the hotel with Rudolph, although Rudolph then waited outside the front door for photo opportunities. Then Santa's helper proposed to one of Santa's elves, which was an unexpected tearjerking moment for us all!! and then we went to the Santa village, which is over the line into the Arctic Circle, and whilst the village is a tourist snare for sure, the environs are extremely well done and there are many slides, snowmen etc for the children to get excited about. Basically all the children wanted to do was get in the snow - not just our girls, all the children, because of course most of them cannot travel to ski resorts etc (us included of course, we cannot leave the country during this treatment) and they have never, may never again in their lives, see snow like that.

Magical moment? The 2 Down's children on the trip, their complete and extrovert joy when they met Santa.

Back to normality, Rachel had vincristine today, but her blood results (taken 9am)were not available until 4pm for the methotrexate decision, by which time we had had to leave to get Rachel to school, since she was absolutely determined to be there on the last day of term. As it happens, her blood counts have recovered very well, which means she has to have the mtx so we will take her into hospital again tomorrow (Saturday). We are next in on Dec 23rd, with final chemo in this block on 26th Dec.

Tuesday, December 13, 2005 3:35 PM CST

Firstly, apologies to those who check in most days for news - we seem to have reached a point where once or twice a week is sufficient to keep up to date with Rachel's progress. I think this is a good thing! Today, Rachel had a general anaesthetic for her now monthly lumbar puncture for intra-thecal methotrexate (this will be 3-monthly when she is on maintenance next year). All went well, she ate solidly for about 1 hour after she awakened from the anaesthetic, but whereas she normally wakes in good humour, she was Little Miss Grumpy today. However, all is well apart from she is complaining of a sore back, and indeed there is bruising and swelling around the site of the lumbar puncture. A bit of calpol has taken the pain away, I am sure she will be ok tomorrow.

My upsetting news of the day is that one of the children on the ward, diagnosed with leukaemia only in September, has 24% blasts (ie leukaemic blasts in her marrow) after her second block of chemo which means she has to go to bone marrow transplant. (Remission means less than 5% blasts in the marrow, Rachel has maintained remission thus far through her treatment, Emily achieved <5% after the first block of chemo but it came back quickly). Bone marrow transplant is torrid for the recipient, it sounds quite glib but believe me, what Rachel has gone through this year is peanuts compared to a bmt. To give you a further idea of what families endure with childhood cancer, Emily's mum was 7 months pregnant when she was diagnosed, was wheeled from the paediatric oncology ward to maternity to have her baby, and wheeled back with the new baby next day. Mum and baby effectively live on the paediatric oncology ward, and will do so until they go to Birmingham for the bmt in (probably) February.

Back to Rachel - two mouth ulcers appeared on her upper lip this weekend, but no sooner had they appeared than they started to heal. So, I had a look in her mouth - she had 2 pinprick ulcers on each inside cheek, but where she had lost her two bottom teeth had split into a huge raw ulcerated wound. She did not complain until I spotted it, and she said 'It stings a bit, Mummy' - I'll bet! But the big ulcers have healed a bit, the pinprick ones are still there so the docs will have another look on Friday morning before they decide whether to give her the scheduled dose of IV methotrexate (the chemo drug which causes this ulceration, or mucositis). Basically, she has a mild-to-moderate dose of mucositis but she is also very neutropenic with neuts at 0.09 so I think it is unlikely she will have the mtx on Friday anyway. She is due mtx and vincristine on Friday, but we have to go in early am Friday for bloods and assessment before they decide whether to give mtx or not.

Finally, a very exciting development today - When you Wish Upon A Star, the charity who is taking Rachel and myself to Lapland on Thursday, called today to say, would Isla and Paul like to come along too?!! How hugely exciting, Paul is beside himself!! Isla doesn't know yet, we will tell her maybe tomorrow night or on Thursday morning. Basically, the flight is for sick children, and inevitably there would always be children too sick to travel. So, we are lucky that the charity called us and invited us to take the spare places - when Rachel was first invited, her first response was, 'can Isla come too?' to which of course we had to say 'no.' Isla has dealt with it all marvellously, never complaining - because of course she must be devastated but she has accepted it - so it will be wonderful to be able to go as a family together. I will DEFINITELY post some photographs on the website when we return. But Central News will be covering it, so I guess it will be shown probably Friday?

Friday, December 9, 2005 4:42 AM CST

Another week almost done, and no dramas yet, just how I like it! Next chemo is on Tuesday, intra-thecal MTX which means a general anaesthetic for a lumbar puncture so Rachel and I will be in hospital most of the day. The nurse will come to school on Monday morning to take bloods in preparation , and whilst we are in on Tuesday the doc will do an assessment ahead of her IV MTX and vincristine on Friday 16th. Since this week's dose of IV MTX was omitted due to Rachel being neutropenic, I anticipate that next week's dose will go ahead. The final dose in this block is due on Dec 26th.

Blood came relatively easily out of the line this week, the 'position' which worked was Rachel lying flat on her back with arms extended over her head. So, fingers crossed that will work on Monday because if if doesn't, it means a trip into hospital to get it via a cannula if all else fails.

Each Christmas Eve, we have sponsored carol singing in the village pub for charity, organised by the our church warden, Brian Piper. This year, with Rachel in mind, Brian has nominated CLIC Sargent, which is a charity 'Caring for Children with Cancer' - visit the website www.clicsargent.org.uk or even better, pop into South Croxton on Christmas Eve, sing a few carols and put some money in the tin for a very worthy cause.

Tuesday, December 6, 2005 2:59 PM CST

Rachel's cold has receded, and she is generally well. However, her neutrophil count from yesterday's bloods is 0.06 !!!! Yikes!!! So, the scheduled methotrexate today was omitted, she only had the vincristine (which makes her feet ache) and will have pegAsparaginase tomorrow. The extremely low neutrophil count means she is particularly prone to infection etc, but there is only so much you can do without putting her in a protective bubble. It is her determination and zest for life that has kept her so well thus far, so I refuse to start treating her like an invalid now. Not easy, though.

Not much else to report - Paul's awful tummy thing is on the mend and the rest of the family seem to have escaped it. Christmas things are starting to take front stage, so it is really nice for the children at the moment. Isla is being so amazingly understanding about Rachel going to Lapland next week (with When You Wish Upon A Star children's charity) whilst she is not, which just makes you want to weep, she is being so strong. Ahh this disease affects all sorts of dynamics, it is a constant battle to do the best we can to keep our children balanced.

Sunday, December 4, 2005 2:27 PM CST

Rachel is due in hospital tomorrow for bloods and assessment, ahead of IV vincristine and IV methotrexate on Tuesday. The MTX is scheduled to be an increased dose, but it depends on her assessment tomorrow. She has a cold - I tried to keep her off school last week for at least half days, but she would not have it - so whilst she seems to have avoided the horrid coughs that were going around her class, she has picked up a cold which sent her temperature up last night to 37.5 (had me worried enough to pack a bag for hospital), but she was back to normal this morning. So, we'll se how that develops, I don't know whether it will affect the decision on Tuesday's chemo. The last 2 doses of vincristine have made her feet sore, but it only lasted a day or two on each occasion which is fine. She is also due chemo on Wednesday, intra-muscular PegAsparaginase which is painful and she now goes into a bit of a decline when she knows she's having it.

So, my concerns at the moment are: how will her cold develop, and will they get blood out her line tomorrow. Lower on my list of concerns is hoping that she won't get the horrid nasty bug that Paul has had for the past 5 days! Fever and exploding diarhorrea would be less than a good thing for Rachel - but by the time we realised what was going on, it was too late to ship Paul out for a few days. We have now effectively isolated him! but we just have to hope that the rest of us didn't catch it before that.

Finally, it was the Ward 27 Christmas party today - it was really great, 2 entertainers and 2 face painters, and a room full of children who are ALL immuno-suppressed so I could relax and let Rachel and Isla enjoy themselves freely! They had a great time, what a super party for the children and their families. (Paul was banned.....).

Saturday, November 26, 2005 12:10 AM CST

We all had our flu jabs this afternoon. Rachel and Isla both went into a bit of a panic when they saw the needle but it was over in a flash, Isla cried because she saw Rachel crying, and Rachel cried because the intra-muscular chemo she gets is very painful, and she assumed this would be the same. In retrospect, I chose completely the wrong order to do it - Paul and I should have probably gone first. Oh, well.

But the big news this week is, Rachel has lost her first tooth! Very exciting indeed, but very bad timing - this block of chemo is likely to cause her mouth to break out into sores. If she already has an open wound, it is more likely to become infected, or indeed to worsen. However, as we stand it is fine, the chemo went ahead today (IV MTX and vincristine) although she wasn't great for an hour or so afterwards. She was complaining of sore feet (a known side effect of the vincristine) and was very quiet and clingy. But after she had lunch, and with the threat of having to return to hospital, she got over whatever it was as quickly as it came on.

So, a week free of hospital this week, Rachel's next chemo is in 10 days, with bloods and assessment done a day in advance. The Hickman line is not easily giving out blood, and the possibility of having a new line was tentatively raised today. However, since I am keen for her to have a port fitted when she moves onto maintenance in the spring, I don't really feel like furthering any discussions on a new line at the moment. Her line works beautifully for drugs going in, it just struggles to give any blood out. This is probably because the end is sitting against the wall of the vein, so when you flush through it, it pushes the vein away from the end of the line and there isn't a problem. However, when you put the syringe on the end and try to draw blood back through the line, it is probably pulling the wall of the vein over the end of the line, closing it off. On Friday we tried for 20 minutes, and finally we got just about enough blood. But if it won't give, they have to take peripheral blood ie via a cannula, which the children all become pretty resistant to after a while, Rachel included.
(The idea of a port is so that Rachel doesn't have tubes coming out of her chest and hanging in a bag round her neck, which is what the Hickman line is. A port sits just under the skin, so there is nothing external, and it has to be needled each time, but since it is the same spot each time, scar tissue forms so it is much less painful than a cannula or injection. It would mean that she would be more 'normal' and could swim etc. The problem is that she is currently having too much medication, she needs a double lumen line ie 2 lines to inject drugs, fluids blood or platelets if necessary, the port only has one access point which is not enough for children on Rachel's treatment programme).

Tuesday, November 22, 2005 5:16 AM CST

Nothing much to report. Rachel's great, we're all fine because she's fine, feels a bit like the calm before the storm, but no signs of any storm on the horizon so ...? We're all having our flu jabs on Saturday afternoon, no idea if Rachel can have it or not but she's in hospital both on Thursday (assessment) and Saturday (IV MTX and VCR) so I'll have the answer by then.

Thursday, November 17, 2005 3:33 PM CST

Rachel has had 3 consecutive days of chemo this week. 3 different chemo drugs, 3 different ways of administering (IV, IT and intra-muscular) and one of the drugs twice. So 4 doses in all. She is fine, but a bit tired today and her appetite has gone. She slept for over an hour in the afternoon, and she has had some anti-nausea medication tonight (she had some IV anti-nausea yesterday) - she didn't eat much lunch and it was the thought of dinner which made her ask for the anti-sickness medicine! Hopefully this won't last too long, unlike many of the children on the ward, Rachel has retained her appetite pretty well throughout. Her next chemo is Sat 26th, which is vincristine and an increased dose of methotrexate depending on what her bloods do after 10 days of brewing the chemo she's had this week.

Meanwhile, we all have to have flu jabs, since Rachel is an 'at risk' patient. ( I am guessing that it is not a 'live' vaccine, since all the families on the ward have to have it). Another interesting little episode when we were in hospital yesterday was that Rachel had a sore finger, caused by splinters she picked up from the shed in the school playground. Innocuous in itself, but as Rachel's blood counts start to plummet from this week's intensive chemo, it is very possible that her finger could become a problem. The doctors had a good look yesterday, another look today, antibiotics are not required yet but I have been instructed to remain vigilant. Infection really is the enemy of these immuno-suppressed children.

Sunday, November 13, 2005 11:53 AM CST

I took Rachel into LRI today for bloods since the community team ('Diana Children's Community Service' - all charitably funded) couldn't come out on Monday. Blood counts were all up, neutrophils are 1.4 so we are GO for Tuesday, to start the next block 'Escalating Capizzi II' which will last 8 weeks. The bad news is, this is a repeat of the block which during the summer gave Rachel (a) a brain seizure 2 1/2 weeks into treatment (b) ended with a line infection, pretty nasty insofar as she went into septic shock (not unlike the brain seizure experience, from my perspective) and had to have her Hickman line removed and replaced after 2 weeks of intensive antibiotics which didn't get rid of the infection.

So, it is with mixed feelings of relief and anxiety that we take Rachel into hospital on Tuesday to commence this block. This is also the block where the IV MTX (methotrexate) is given 'to toxicity' ie they increase the dosage until either her soft mucus membranes start to ulcerate or her bloods show toxicity. Last time, her bloods showed the toxicity before her outward physical symptoms appeared, which was a huge relief - having witnessed some children on Ward 27 with mouth ulcers like you would not believe (nasal gastric tube becomes essential, they just can't eat or drink - in fact, struggle to speak, their mouths are so swollen and bloody and sore), and sore bottoms which make them scream in pain to the extent that other parents on the ward listening are reduced to tears - please pray that the same happens this time, that her bloods show the toxicity before the physical.

There is so much I could go on to say, things like 2-year-old Sally is going to Birmingham tomorrow to have her stem cell transplant. Bone marrow and stem cell (inc cord cells from newborns umbilical cord) donors are so urgently needed for these children. I am giving blood in a few weeks, and have started the ball rolling for bone marrow donation. Also, have a look a the links, specifically Ride for Rachel - we have about 50 riders doing this 100 mile bike ride to raise funds for Macmillan and probably Leukaemia Research too if we surpass initial fundraising expectations. It is a very odd feeling, this compulsive need to repay those people who are keeping Rache alive.

As we currently stand, Rachel is in such fantastic spirits, it is just staggering. Her hair is growing back, (it'll come out again though)and it is that soft, newborn downy fuzz, so sweet and still blond for sure. Her eyelashes and eyebrows are growing back too, which makes her look much more normal. We all feel good at the moment. It is quite amazing how the correlation works, we are so happy and optimistic when Rachel is well, and so worried and pessimistic when she is not so good. We haven't even used the buggy for many weeks, her feet and legs don't hurt so much and her energy levels have been fine.

So, 2 heavy blocks to go, and then 'Maintenance' for 60 weeks. Maintenance consists of:
1.oral chemo daily (mercaptopurine);
2.IV chemo monthly (vincristine),
3.IT chemo every 3 months (methotrexate);
4.antibiotics 2 days per week (co-trimoxazole);
5.steroids 5 days per month (dexamethasone).
as well as the bloods/bone marrow aspirates/MRD tests throughout the 60 weeks.
That is hugely less than currently, and her hair will grow back and appearances will get back to 'normal' during that period.

Wednesday, November 9, 2005 3:07 PM CST

Today's bloods are showed Rachel's neutrophils at 0.34, still too low to start the next block. Her white blood cell count is up, though, which means her neutrophils will quickly follow higher. We'll try again on Monday, with a view to starting on Tuesday. On a more immediate note, one of our friends' children has developed chicken pox, which is slightly worrying since the children all played together last weekend. However, we're not in panic mode since (a) it was all outdoor play in the rain, and (b)Rachel has retained some immunity since developing leukaemia. So, we'll wait and see but she'd have to be pretty unlucky to catch it. If she does show signs, I will take her straight to hospital, and she'd be given IV anti-viral drugs, to help her body fight the virus. But as I said, we're not in panic mode about it.

Tonight was the first Christmas party of the season, courtesy of When You Wish Upon A Star. It was lovely because Isla got to go too, and meet the 'real' Santa who is over from Lapland to do a series of parties for the charity. There were a lot of familiar faces there, from Ward 27, and a few missing faces too, ones who are currently too poorly to attend. And other children with different illnesses, all with their families. It all seemed so normal.

Monday, November 7, 2005 10:18 AM CST

Rachel and Isla are back at school today, having spent much of last week at home because of a virus doing the rounds in Isla's class. I am glad I kept them off, simply because Rachel is in great form and I really don't want to jeopardise her current good health. The community nurse will take bloods on Wednesday morning, and we will find out by late afternoon whether her neutrophils have recovered enough to start the next block on Thursday. My feeling is that they will be fine, but there are no certainties.

Also on Wednesday is the 'When You Wish Upon A Star' children's Chrismas party at the Space Centre in Leicester. This is the charity which organises the Lapland trips for sick children each year, Rachel is going on Dec 15th. The 'real' Santa is coming from Lapland for the day, so the girls (they are both going to the party) are understandably very excited.

Wednesday, November 2, 2005 2:01 PM CST

Todays blood results show that Rachel is still neutropenic, ie her neutrophils are <1, at 0.3, which is too low to start the next block. We will try again in a week, with a view to starting on Nov 10th. Her hb has started to rise, so no more blood transfusions required at the moment.

There is some kind of virus going round Isla's class at school at the moment, in the form of an as yet unidentified rash. The teachers and parents have been incredible (thank you) , they advised me the moment they realised there was a virus going round, and whilst the children concerned remain well apart from having a rash (as yet unidentified but bearing some similarities to German measles) their parents have kept them off school. However, it is our issue, I don't want parents keeping their children away from school just because of Rachel, if they wouldn't otherwise be doing that, albeit that we are hugely grateful for their consideration. So, I collected both children at lunchtime today, and will keep them off school until the end of the week. Rachel is so well at the moment, I want to protect that, and of course she is particularly vulnerable, being neutropenic. I will get an update from the school at the end of the week, and we'll make a decision about next week.

Sunday, October 30, 2005 4:20 PM CST

Not too much to say, other than that despite her low blood counts, Rachel is on absolutely cracking form, what a girl she is. She will start her next 8-week block as soon as her blood counts are up (neutrophils >0.75, platelets >75),which I estimate will be in about 2 weeks' time, if her previous form stays true. We had a bit of a scare this week, when we realised that Rachel had been in v close contact with friends who had just had the MMR jab - this is a live vaccination, which has implications for Rachel insofar as she has to keep away from live vaccinations. However, after the initial panic, I have accepted that this is not anything to get overly worried about, they ('they' being the medical staff) are more worried about live polio, not MMR. But I couldn't really get to the bottom of the blanket 'keep away from live vaccinations' advice if it only applies to some live vaccinations and not others. But, err on the side of caution is the rule we of course abide by.

Meanwhile, Ride for Rachel is gaining momentum, 38 confirmed riders doing the 101 miles so far!! Newsletter number 1 will be out soon!

Wednesday, October 26, 2005 4:37 PM CDT

Rachel had the last dose of chemo (vincristine) in this block today. She is absolutely fine, but her blood counts have fallen sharply, most notably her neutrophils are 0.18, which means she is currently extremely vulnerable to infections. So, I won't be going too far from her side over the next week or so, and the chances are she will need another blood transfusion next week. I think it will be at least 2 weeks, probably a little longer, before her counts have recovered enough to start the next block (escalating capizzi II), which will take her through until Christmas.

Meanwhile, the Ride for Rachel has gathered surprising momentum already! We are putting together a newsletter, and I'll find a way to access it from this page, possibly even posting it on the intro message. (I say 'we' but it is Martin who has done everything, egged on by the slightly bewildered Team Rachel....!).See the link below.

Tuesday, October 25, 2005 2:59 PM CDT

Tomorrow, Rachel has her last chemo in this 8 week 'Delayed Intensification' block. She remains extremely well, most noticeably since her blood transfusion 2 weeks ago, and is in just terrific form. Long may it continue. She is due to start her next 8-week block on Nov 1st, but it is dependent on her blood counts. Since she has been delayed each time there has been a count-dependent start, I am fairly confident that it will be the same this time. Bloods will be taken on Monday morning, results should be available mid-afternoon - assuming, of course, they have resolved the issues which caused me such angst 4 weeks ago.

Meanwhile, many of you will have received an email from Martin, inviting your involvement in the Ride for Rachel, taking place on April 29th next year. Please see the link at the bottom of the page, which will take you to the justgiving.com website, which has the broad details. I will update latest news on this page as it happens, alongside Rachel's updates. Martin (Paul's brother) cooked up the idea and is organising the event, and together we decided that Macmillan Cancer Relief was a worthy beneficiary, Nick (Shirley) having already done his bit for Leukaemia Research, aided of course by Harriet and Sinead's individual events, to a total of approaching £10k. Jason Whowell and Barney Leaf also have raised money for When You Wish Upon A Star and Anthony Nolan Trust. Whilst Paul and I have been extremely grateful for the emotional and practical help from our children's Macmillan nurse, we are also full of admiration for the crucially important work that the organisation does for families and patients in worse situations than ours. And believe me, there are many, many families who will be relying heavily on their Macmillan nurse to get them through from one day to the next.

Finally, the grand opening of the 'cards for good causes' shop in Melton Mowbray was a big success. Rachel froze a little when it came to the crunch, but hey, she's 4, and she's allowed to! Photo duly in the photos section, and will be in the Melton Times this week.

Friday, October 21, 2005 11:41 AM CDT

The girls have had a lovely week in Minnie. After heading for Blackpool at the beginning of the week, we came back to Leicester for Rachel's chemo on Wednesday (vincristine and Asparaginese). We headed off again on Wednesday night to the Cotswolds, which was a great relief for Paul and I after Blackpool..! We did have a few highlights in Blackpool, though: Robbie Williams was recording a video late one night in one of the arcades, so there was great excitment although we didn't actually hang around to see the action. The next day we had to go to Blackpool Victoria hospital because the clamp on Rachel's Hickman line became undone - I didn't have any kit with me (!) so she had to go to the nearest childrens unit to have it flushed. Thankfully, Blackpool had a childrens unit, otherwise if it had been Manchester we would probably have cut our losses and come home a day early. As for the Cotswolds, both girls had the stabilisers off the bicycles, and they spent most of Thursday and Friday perfecting their techniques! I will upload new photos tonight/tomorrow.

Rachel is on really good form at the moment, clearly this week she was benefitting from a daily afternoon sleep. Tomorrow, Rachel has been invited to open a shop in Melton Mowbray - 'cards for good causes' outlets open throughout the country at this time of the year, selling charity christmas cards etc for a broad range of charities. So, Rachel, Isla and Rachel's school friend Alicia will be doing their bit tomorrow in front of the photographers! They have been practising their lines ("I declare this shop OPEN")in big voices, so we'll see how it turns out!

Saturday, October 15, 2005 6:41 AM CDT

Half term this week, so we are going off in Minnie for a few days. We're taking the children to Blackpool to see the illuminations, and will potter around maybe Cheshire or Derbyshire. We have to be back for hospital on Wednesday, Rachel is due vincristine and PegAsparaginese (the nasty one in the leg). She has been completely back to her old self this week, she has lost most of the latest weight gain and the blood transfusion on Tuesday has just made her full of energy. So much for my intentions of reducing her school hours this week! The girls are both very excited today, preparing Minnie for departure! so here's hoping we have a good few days.

Tuesday, October 11, 2005 3:13 PM CDT

Today was intra-thecal day, so general anaesthetic for lumbar puncture, methotrexate (MTX) into her csf(cerebral spinal fluid), which is routine preventative chemo to stop the leukaemia spilling over into her brain.
When we arrived at hospital, the consultant said hello, and ran over yesterday's blood results, unfortunately her Hb (haemoglobin) was 7.8 which meant she needed a blood transfusion. I had forgotten that this block of drugs had affected her Hb last time around so this caught me a bit unawares and I wasn't terribly prepared to be in for the extra 6 hours...?!! Not to worry, new blood means Rachel is as bright as bright can be for a few days, which is just great. PLUG TIME AGAIN - PLEASE, PLEASE GIVE BLOOD IF YOU ARE ABLE, BLOOD DONORS HAVE KEPT RACHEL ALIVE. Even better, while you're at it, register to be a bone marrow donor - if you want to see a real life recording of a bone marrow transplant, have a look at www.miltcentral.com: this is the website of a 34 year old chap who was diagnosed with ALL (same as Rachel) almost a year ago, and he photographed or video-ed every procedure he went through. The bone marrow transplant was just a bag of donor bone marrow which looked like blood, was transpanted via a drip, and the donor bone marrow takes 21 days to find its way to the new host bone marrow. Amazing.

Anyway - GIVE BLOOD AND BE A BONE MARROW DONOR - if you possibly can. Meanwhile, Rachel has IV chemo for the next 4 days, but her infection has gone: the blood cultures taken at the end of her course of IV antibiotics was negative, yippee. And she is just on terrific form. Yippee again, we'll take that whilst it's going. Isla is struggling a bit though, is suddenly very aware of me spending much more time with Rachel than with her. It's pretty unavoidable when Rachel needs treatment, but I am trying to devise strategies to take care of it.

Sunday, October 9, 2005 5:27 AM CDT

After a week on IV antibiotics, and 5 consecutive days of chemo, Rachel continutes to amaze us all with her energy and bright outlook on life. She insisted on going to school this week, so I let her go half days only. I am not sure if I'll get away with that next week, but she is in hospital on Tuesday for another IT (chemo into spinal fluid), so maybe full day Monday, hospital Tuesday, half days for the rest of the week? She has another 5 days of chemo next week Tues-Sat, and the effects are cumulative, so I'll just see how she gets on. (She is also on daily oral chemo at the moment).

Meanwhile, I can't believe it is October already. Only 2 more big blocks after this one, and then she is on maintenance! Wow. Stray strands of hair have started to pop through, and they look as blond as Isla's ......maybe I'm dreaming, but I am now very curious to see what grows back! Any re-growth at the moment will be zapped again by the chemo she had last week (cyclophosphamide), and the chemo she will have in the next block (escalating capizzi II, the drug is doxorubicin). I think her hair will be starting to grow properly again maybe in April? So the purple wig is here for a while yet......!Actually, it is great, it suits her and she is wearing it much more easily now. Yesterday, she even took it off for a few moments in front of some friends, which she just couldn't bring herself to do even a week ago.

Wednesday, October 5, 2005 4:36 PM CDT

Ahh, just when I was getting a bit complacent, Rachel caught me by surprise by vomitting in the middle of the night. Ahh, I had been sure that the IV anti-nausea would have lasted until morning! Poor thing. I think I have decided that she won't be going to school at all this week, and we'll have a think about next week. My current feeling is that she needs to rest at home, simply because she is on so much medication over the next 2 weeks.

Meanwhile, I have to tell you that Nick's efforts in the triathlon (total now over £8k, thanks JD!)have resulted in an invitation for Nick to the Leukaemia Research Fund annual awards dinner, and an invitation for Rachel to the Harrods Christmas Children's Party! Isn't that amazing? So, a huge, huge thank you again to all who supported Nick - and Sinead(£1200, LRF), Harriet girls(£566, LRF), Barney (Anthony Nolan Trust, £515) and Jason (When You Wish Upon A Star - don't know total, Rachel going to Lapland with this charity on Dec 15th). Not to forget Poppa Geoff, whose (substantial!we think!!) donation to Cancer Research is yielding a trip to Bonny Scotland next year! Enjoy!

Tuesday, October 4, 2005 3:44 PM CDT

So, we are home tonight, Rachel having started the next block today with both IV and IT (into spine) chemo. She is well, but doesn't realise that it is only because she has had IV anti-nausea medication along with her chemo this afternoon...! So, when she wakes up tomorrow morning, my guess is she won't feel quite so chirpy! Poor thing. But I have a big supply of anti-nausea medication because she now has 4 days of cytarabine, which makes her very sick, and again next week. I think I may have her at school only half days until this part is over, bearing in mind that she is also on daily oral chemo and 3 different antibiotics for (a) earache which kicked off the temperature spike at the weekend (b) her blood cultures have grown a bug (c) she is on preventative antibiotics every weekend for 2 years anyway.

It's good to be back on track with her chemo. I find the delays very frustrating, and I need to be focussing on something positive. For instance, I am questioning why her Hb levels have dropped to 8.9 when she hasn't had any chemo for almost 4 weeks: does that mean the leukaemia is kicking in as soon as the drugs are withdrawn? It probably doesn't mean that, but I don't know for sure, no-one does at this stage, and as a mother you just cannot help it that these worries creep up on you. So I need her to keep moving forward. She will probably need a few blood transfusions over the next month, I seem to remember that when she had these drugs last time it was the Hb levels that suffered, and she needed frequent transfusions.

She picked up her new wig today - baseball cap with blond braids. She hasn't had the courage to try it on yet though -at lunchtime we went to the restaurant, and I inadvertantly knocked her hat off. She scrabbled to get it back on, and blushed profusely, even though there was no-one around that she knew in any way, it was all strangers. I am really surprised at how sensitive she is to people seeing her bald head. At 4 years old I guess I hadn't anticipated this very developed sense of self/ego/how others see you.

Meanwhile, Isla has been displaying some classic signs of separation anxiety, so I need to be aware and anticipate it a bit better than I have done recently. She has been so good since Rachel's diagnosis, I can't let her down just because she is trying so hard to deal with it herself - she is only 5 years old after all.

Monday, October 3, 2005 1:27 AM CDT

Rachel was allowed home yesterday, on the basis that we go back in each day for IV antibiotics every 24hours. Basically, it means they are happy that the infection seems under control, and we live close enough to do the daily trip to hospital. The slight fly in the ointment is Tuesday, when they will make a decision in the morning whether Rachel is well enough to have a general anaesthetic (to resume her chemo treatment now that her blood counts are ok). So, we'll go in late this afternoon and stay in hospital overnight, and hopefully they will proceed with her treatment tomorrow.

Meanwhile, I am now wondering about continuing to send Rachel to school over the winter. If catching a cold means that she ends up in hospital a few weeks later, I'm not sure that being at school over the most intensive phase of her treatment is a good idea. Or, maybe once she gets a cold, I keep her off school until it has gone, maybe it's getting eg ear infection on top of a cold that tips the balance. Or maybe half days only, so that she doesn't get tired ie has more energy to deal with it. No right answer with this, I guess, I just have to make best judgement and see how it goes.

Saturday, October 1, 2005 12:34 AM CDT

The cold/cough Rachel has been struggling with over the past few weeks has now progressed into something a bit more concerning. With a temperature peaking at 38.7 today (about 102), pulse rate 166 (v high)and blood pressure showing a mean of 50 (v low),she has been admitted to hospital, and is on IV antibiotics and fluids. Not sure how long she will be in, the antibiotics she has been given initially do not seem to have made much difference, so my guess is she'll be in hospital until at least Tuesday.

The ward is absolutely packed, the staff are stretched to the limit it seems. And 2 of the best nurses on the ward have resigned, due to leave at the end of October, so it will only get worse. Good old under-resourced NHS.

Thursday, September 29, 2005 3:14 AM CDT

Well, the short story is, Rachel's bloods are ok to start the next 4-week block today, but she'll start on Tuesday instead of today(general anaesthetic for lumbar puncture in the morning, and then 4 hours on a drip in the afternoon), because being told at 9pm on Monday evening is not adequate notice.

The long story is, this is the 3rd time in 9 days that the blood results have not been processed in time (by haemotology). Last Monday I was finally told at 10 minutes past midnight that they still didn't have the results, and could we come into hospital by 8am so that they could take more bloods. When we got there, they took more bloods but then 1/2 hour later the original blood results appeared, her neutrophils were too low and we had to go home again - Rachel having had to be nil by mouth until that point, Paul having been late for work to take Isla to school and me having had to make alternative arrangements for Isla's after-school care which I then had to cancel. Monday of this week, bloods taken again at 9am, at 7pm I informed the nursing staff that if I hadn't heard by 8pm, I was making the decision not to proceed - which, as you can imagine, didn't go down too well. I had a call at 7.30pm to say her neutrophils were still not high enough to proceed. So, when effectively the same thing happened for the 3rd time in a row yesterday, I was less than happy. Sadly, I did expect the nurses to jump to attention when I called the ward, and when they didn't, that was when all remnants of humour left me. The ward can cope when quiet, but they are extrememly busy and under-resourced, so 'non-urgent' cases (there are children who need much more urgent attention ....) like Rachel are not at the top of the priority list. But my priority is Rachel, and if she goes to bed happy and wakes up to be told no breakfast, no school, instead it is hospital for a general anaesthetic in the morning and a drip for the afternoon, it is not fair on her, I need to prepare her for what's ahead, not disorientate her further.

Anway, that is my rant over with......she has a bit of a cough, a bit of a cold and earache which is all hanging around for a few weeks now, but apart from that she is on good form. It's me that currently needs therapy.

Sunday, September 25, 2005 2:21 PM CDT

We were down in Surrey this weekend to support Nick Shirley in the Xtreme Terrain Triathlon. He was raising money for Leukaemia Research, and has been training incredibly hard over the past 6 months. The rigorous nature of this triathlon should not be underestimated - 1.5km lake swim, 26k bike ride (mountain biking for much of it) over extreme terrain, at some points Nick had to carry the bike, the hills were so steep. The run was also off road, on the army training grounds which has also seen some James Bond film action in its time.

Nick was holding his own after the swim and the bike ride, but when he started off on his run, I simply could not believe my eyes - he ran as a banana! It is so overwhelming that, having trained SO hard for this event so that he could do the best he possibly could, Nick forfeited the chance to achieve his best performance in order to display his committment to the cause in hand, and to give his supporters something back. It was a humbling display of friendship. He was the ONLY runner to put cause before personal satisfaction, the other runners, the marshals, they simply could not believe their eyes, triathletes just don't DO fancy dress. So much so that people sought him out afterwards, to give him sponsorship.

So, thank you everyone who who sponsored Nick, and thank you to everyone who came to support. And an extra thank you to those who did both. Please have a look at his website to see the final total, it is currently at c£7k. A special thank you to Dom Baldwin: you took our, and the Shirleys, breath away. As, of course, did Nick.
XXXXXXXX

Photos will appear on the website by tomorrow.

Tuesday, September 20, 2005 3:22 PM CDT

Rachel's neutrophil count was too low to start the next part of this block today (0.1 yikes!! lowest yet) so we will try again next Monday, with a view to maybe starting on Tuesday.

We had a visitor to the house this afternoon, catching Rachel without a hat/wig, however, when we went into the playroom, she had put her blanket over her head. Such is her anxiety about people seeing her without hair. I guess Rachel's hair was always such a big thing, the source of the huge attention she attracted even from strangers walking down the street, wherever we happened to be - it makes losing her hair all the more painful, and somehow all the more cruel.

So, don't expect an update before the weekend. We are going to support Nick Shirley this weekend (link below), and will be in Camberley, in Minnie (the camper van) at 'the cafe' (apparently in the thick of where it is all happening at the triathlon) so if any of you go along to support, you will easily find us. We have some Leukaemia Research balloons/flags which will be attached to the aforementioned Minnie, you won't miss us.

Sunday, September 18, 2005 2:16 PM CDT

It has been a difficult week for Rachel. Her hair loss has upset her terribly, although as each day passes, the sensitivity is lessening. She is worried about doing PE at school, because she'll have to take her hat (ie wig) off in order to change into her gym kit, and she is not yet ready to do that. I haven't worked out how to play that one, maybe she can skip PE this week. Her worry is that children will laugh and be unkind to her - fair enough, most won't but the odd one will at some point over the next few months, no matter how much we all try to protect her. I have found it difficult watching her struggle so much this week, it just breaks my heart. She has dealt with all the treatment, the pain, the changes in her life with such stoicism, that to watch her struggle with this now is just so sad. And of course, she now looks like an extremely ill child - not only the hair, but the dark-ringed eyes, the moon face and huge belly caused by the high-dose steroids. No more steroids until December, and the next phase has 2 weeks of drugs that make her sick, so she should lose the weight again fairly quickly.

She is due to start the second half of this intensive block on Tuesday, but it is count-dependent, so the community nurse will go to her school on Monday morning to take bloods, and we will find out in the afternoon if she continues treatment on Tuesday or not. She has had delays each time her treatment has been contingent on blood results, so I don't really expect anything different this time.

Wednesday, September 14, 2005 11:54 AM CDT

Good news regarding Rachel's latest bone marrow results. As some of you may know (and some of you may have missed, because I was trying to downplay it on last week's journal entry), Rachel's bone marrow from 3 weeks ago was sent back for a second opinion - the implication being of course that she had relapsed. The second -expert- opinion has confirmed that Rachel is still firmly in remission, there is no doubt about it. The consultant was very clear on that, indeed it is exactly as he had believed, and whilst of course we have had an extrememly worrying week, it is a difficult call between holding back information and keeping us fully informed. Of course we would rather be kept fully informed, but we realise that what goes hand in hand with it is the possibility of increased anxiety when we have situations like this.

So, big sigh of relief all round, and back to blood results, waiting to see if Rachel will be able to start the second phase of this block on Tuesday. We will find out on Monday. Meanwhile, she is still traumatised by her total hair loss, and is finding it difficult to mix with people, even finding it hard to take her hat off in front of us. Part of the sensitivity will be due to the steroids, so having finished those yesterday, the effects will be wearing off by tomorrow. And of course given time she will become accustomed to how she looks. We saw the wig person at the hospital today, and to my surprise, Rachel immediately chose the 'baseball cap with hair attached' version, straight, long, purple - yes auberginey purpley colour! - hair. And the same version in blond braids!!! So much for my anxiety over the availability of a curly wig for her!

Tuesday, September 13, 2005 1:43 AM CDT

All remaining hair finally parted company with Rachel's head this morning. It's made her quite emotional, and she has had a hat on all morning at home. So I think no school today, it's a traumatic enough morning for her, without having to face all the people at school too.

On a more cheerful note, Harriet (Phillips) and her friends raised £566 for Leukaemia Research at the house sales. How fantastic, a huge THANK YOU to everyone who participated and who went along and supported. I can't believe the support from our friends, I wonder what the Team Rachel will raise over time. The running total so far is circa £7,700 for Leukaemia Research(Harriet, Sinead and Nick), £515 for Anthony Nolan Trust (Barney) and as yet unkown for When You Wish Upon A Star (Jason).

Saturday, September 10, 2005 4:17 AM CDT

Not much to report. Rachel's moods are very unpredictable, due to the steroids, and she generally wants to be around people she is familiar with. The way to deal with it is to go along with her whims, however unreasonable, but I draw the line at allowing her to get away with horrid behaviour to others, albeit that I know she's not quite in control of her actions. Food - particularly lasagne and hot dogs -remains a mild obsession, dinner is being planned before breakfast, that sort of thing, but it's not out of control.

Rachel has an appointment with the wig person at LRI on Wednesday, ahead of the clinic appointment. Cancer patients are allowed 2 wigs on the NHS, but I hadn't raised the subject. However, when we were in recently, one of the girls on the ward had a wig, and Rachel and Isla's eyes almost popped out when she put it on! Isla asked if Rachel could have one, and of course I said yes, so that was that, plan in motion. When I called to make the appointment, the lady was dismissive when I said Rachel wanted a curly wig. 'Oh no, we don't do curly' was the response. I wonder, are there only blonde wigs available for asian people? I was pretty irritated. So, I had to then search on the internet for curly children's wigs, only to find that she/NHS wasn't being unfair, it seems there isn't such a thing. So, we'll see what happens on Wednesday.

Wednesday, September 7, 2005 3:43 PM CDT

Today Rachel had her 3rd dose of doxorubicin and vincristine in this block. IV anti-nausea is given at the same time, and it has usually worked without Rachel requiring any oral top-up at home. All her counts will fall, with about a 7 day delay, so from now until 19th Sept, no more chemo until this lot does its worst. On Monday Sept 19th, we'll pop into LRI to get Rachel's bloods done, to determine whether she will continue the block on the Tuesday, or whether there will be a delay. Meanwhile, her cough has descended into her chest, but the doctors were happy that nothing untoward was happening, so I will just continue to keep an eye on her.

Update on the fund raising situation. Please have a look at Sinead's site, link below. She has raised about £1,100 for Leukaemia Research, including a £400 donation from National Grid. Isn't that just fantastic? Thank you so much to Sinead, Mark, Pixie, Sophia, Jemima and Eloise, and everyone who supported their efforts - Rachel's plight is so 'real' for everyone, and Paul and I are so incredibly touched by such generous response, generous both in pocket and in heart. THANK YOU ALL SO MUCH.......we know that if anyone can touch people's hearts, our little Rachel can, and your response bears it out.
As for Nick Shirley - visit his website also if you have a moment, and if you are in the Camerley area on 24th September, think about going to support - I'll update nearer the time.

Finally for today, Rachel's bone marrow results from 2 weeks ago have been sent away for a second opinion. I won't go into the details, no point in scare-mongering, but let's face it, it would be better to hear 'she's still firmly in remission' than to hear that the results have gone back for another look. We'll hear the latest when we go to clinic next Wednesday, and fingers crossed the 'second opinion' tells us what we are desperate to hear. The consultant says that relapse at this stage would be extremely rare, and he is not overly concerned, so we shouldn't be either. If the second opinion confirms the first result, then the situation will require some more attention. Nothing we can do, and the consultant is being very straight with us. These guys deliver bad news all the time as part of their daily job, they don't hold back if there is something to be said. So, we wait.

Tuesday, September 6, 2005 3:06 PM CDT

Well, all is rather normal at the moment in the Smith household. Both girls are at school, and we are fitting in Rachel's treatment with as little disruption to school routine as possible. She is fine, no more tired than any child doing full days at school for the first time. She was keen to do ballet, which is fine, but when she went along on Monday it was immediately obvious that she was struggling with her mobility. However, she refuses to let that stop her, and whilst on the one hand it is exactly the positive mental attitude that will beat this disease, I have be careful not to let her overdo it for a host of reasons central to her wellbeing. For instance, if the vincristine (a chemo drug she is having in this block) is causing sore feet/limp ('peripheral neuropathy'), it can actually cause permanent nerve damage if not monitored closely, so I will make sure the doctors have a look at her feet tomorrow.

Rachel is due some IV (intravenous) chemo tomorrow, so I will pick her up after school as I did last week, and head straight to hospital with both girls. She will also have bloods done and a doctor will assess her. She is due to start another week of steroids tomorrow, which I am dreading because she has put on a bit of weight again from the steroids 2 weeks ago, and the obsession with her next meal has not yet worn off.

The chemo tomorrow is the last for 2 weeks, and whilst she is due to start the second half of this block on Tuesday Sept 20th, it is count-dependent ie her neutrophils have to be above .75, and her platelets have to be above 75. So, I will not know until bloods are taken on Monday 19th, if she continues treatment as planned on 20th or if there will be a delay. So, those of you to whom I am saying 'I'm not sure yet when Rachel is due treatment' - that's why. My guess is that there will be a delay, but you just never can tell.

Wednesday, August 31, 2005 3:22 PM CDT

Rachel's first day at school went smoothly enough - she was a bit nervous, and I was just about managing to hold it together. However, she didn't want to take her hat off when we went inside, and that completely set me off. I had to leave her with Paul for a few moments whilst I gathered myself together - my heart sank when she wouldn't take her hat off, because it showed how strongly she was aware that she is different from the other children, and she didn't want to draw attention to it. But, she didn't flinch, she just sat down at the table and played with the play-doh, and that was that!

We picked both children up at normal time, and headed into hospital, where Rachel was due bloods, weekly assessment and 2 chemo drugs. She has also been complaining of a sore mouth and bottom, so she has been prescribed antibiotics to help this. Actually, she said to me that 'her bottom was sore when she went to the toilet today,but she didn't cry'. How brave of her, she has been in tears over the past few days because her bottom hurts, she obviously has some ulceration there, and there is an ulcer visible at the back of her mouth. We left hospital after 7pm, so it has been a long day for both children today.

I have mostly written this journal with the focus on Rachel, not on Paul and I. Consequently, you - correctly - get the picture of a strong, resilient little girl, who is dealing with what life has thrown at her in a stoical and courageous way. But it took me a while to understand why people keep remarking how strong we are, how we are coping marvellously, when in fact, it is Rachel that is coping so amazingly well. (And Isla deserves a mention here, too ... she's been so accepting of most things, with little complaint).Paul and I have no choice in this, we are just doing our best for our little family - but if I wrote a parallel journal about our feelings, and the moments when we struggle to cope, you would see a different side. I guess I wanted to mention this, because I don't want to mislead you about how we are coping. This is a painful and exhausting time, and often all we want to do is 'go to ground.'Anyway, I want to say again how humbled we are by everyone's concern and understanding, thank you all so much, we are so strengthened by your support.

Tuesday, August 30, 2005 2:45 AM CDT

This morning, no sooner had Rachel finished her 2 rounds of bacon sandwiches, she asked for some toast and what was she having for lunch. Oh, and add a pint of milk to her consumption this morning. IT'S ONLY 9AM! That's what the dexamethasone does. Thank goodness her last dose is today - it has taken 5 days for the appetite to kick in, although she has been more tired for several days now. Her moods are very fragile, and you can see the insistent, anxious, slightly compulsive edge to her - we had to cancel a few outings over the weekend, because she didn't want to see anyone. However, I can honestly say that none of this is a surprise, and hopefully we have dealt with it in a way which has eased her stress.

It's her first day at school tomorrow. We'll play it by ear, there is a balance between her not quite being up to it, and it being a distraction to help her through the day. Whilst she is off the dexamethasone today, she is due some strong chemo tomorrow (vincristine and doxorubicin). The plan is to let her have all day at school, and then we'll pick the girls up and take them both into hospital. I think it will be quite emotional for Paul and I, though - it's not going to be quite the 'first day at school' we would have wished for our daughter, but without doubt we'll never forget it. We'll post a photo later in the week.

Wednesday, August 24, 2005 11:40 AM CDT

Things should settle down a little bit now, hopefully. Rachel's new line is fine, and she has started on the next block 'Delayed Intensification 1' which is an 8 week block due to finish on 17th October. As the name suggests, this is an intensive block, the first of 2 intensive blocks, designed to really knock the remaining leukaemia for six. She is fairly likely to be hospitalised at some point during this block, and will quite possibly need some more blood transfusions if her haemoglobin drops below 8. She is due IV chemo in hospital next Wednesday, which is her first day at school, but I'll take her to school on her first morning, and then to hospital in the afternoon. I don't want her to miss out on 'first day at school' if I can help it.

After this block, it is a repeat of the previous block, and then a second delayed intensification, which takes us to early February. Then, assuming she remains in remission, she'll be on maintenance for 60 weeks, which is chemo once a month. Bring it on....

Monday, August 22, 2005 3:05 PM CDT

Rachel went into theatre at 4pm, and came out at 5.45pm with a new Hickman line, in the same position as before (exiting just under her arm to the front) but now on the right hand side. She was a bit woozy, had a bit of a temperature for a while, but when she ate something he felt much better, and is now right as rain. The exit wound from the old Hickman line has healed beautifully, and is much smaller than I expected it to be.

We seriously thought about a port instead of a Hickman line, but, being on Regimen C, her treatment is quite intense until the end of January. Some drugs require fluids concurrently, and she will most likely need transfusions. Rachel has a double lumen line, meaning there are 2 lines to cope with this high volume of IV activity, whereas a port only allows a single point of entry. If the line needs replaced again in 5 or 6 months, when she is (hopefully)on maintenance (chemo once every 4 weeks), then a port would make more sense.
(A Hickman line is outside the skin, 2 dangling lines that hang in a bag around the neck. You have to treat the line with extreme care/caution, eg can't get it wet, danger of pulling. A port sits under the skin, a tube directly into a main vein but each time you access it, you do so with a needle, like a normal cannula. As scar tissue grows, there is no longer pain when sticking the needle in, but it allows a much more normal existence in between treatment.)

We had a bit of too-ing and fro-ing with her blood counts. Bloods from the cannula earlier today showed all counts significantly up, apart from neutrophils which were way down, 0.3. This meant that she was unable to start the next block of chemo tomorrow as planned (because each block is count-dependent), however I questioned it because her neuts were 1.1 when she had her line out 10 days ago, and counts 'should' have been rising because she hadn't had chemo for a couple of weeks. So, when she came out of theatre, more bloods were taken and the results were phoned through at about 8.30pm - with neutrophils at 1.7!! We had our coats on to go home, but we took them off again and we are in overnight as per the original plan. So, intrathecal chemo tomorrow, plus bone marrow aspirate and MRD, Wednesday is IV chemo including a new drug she hasn't had before (Doxorubicin, which will remove all remnants of hair still remaining), Friday is the nasty one in the leg, PegAsparaginese, and she starts the dex (dexamethasone, the steroid) on Wednesday.

Sunday, August 21, 2005 3:47 AM CDT

Back home today, because Rachel is due to give bloods ahead of her op tomorrow.

We had a fantastic week in 'Minnie' (the campervan). The weather was fab for most of the week, so there was lots of beach and swimming, which of course was just perfect, and something that we couldn't have contemplated a week earlier. Rachel has been just so well, and not having the line in has been so liberating for her - and for us. It does make you wonder whether a port-a-cath might be better for her - it does the same as a Hickman line, but lies under the skin, meaning that you still have to prick the skin to administer IV drugs, and for bloods. Is the additional pain worth the freedom? Hard to say, for a 4 year old. We weren't given a choice anyway, but I might just ask the question ahead of tomorrow.

So, Monday is the op to insert a new Hickman Line. Tuesday sees the start of her next block of chemo 'Delayed Intensification 1' which means ga/lumbar punture on Tuesday, and more chemo on Wednesday and Thursday. We will be in hospital overnight on Monday night, but hopefully she will be out Tuesday, all being well, and in as a day patient on Wednesday and Thursday. She is also back on the steriod on Tuesday for a week, then off it for a week, and back on it again for week 3 of this block. I'm not looking forward to it, it changes her character as well as the physical impacts, but maybe only being a week at a time, it won't be as awful as before.

Thursday, August 11, 2005 3:55 PM CDT

Rachel's Hickman line came out today. She went down to main theatre about 3pm, and it only took 10 minutes or so to remove it. The operation to insert a new line is scheduled for a week on Monday. But the big news is, all the doctors have confirmed that it is ok for her to swim next week, once the wound has healed over (ie not weeping). So when you see Rachel's face light up at the prospect of being able to go swimming next week, it isn't so bad after all.

We are still not entirely sure where we are going next week, but we are all very happy at the thought of having an adventure in our new camper van! Don't expect any updates next week - take no news as very good news!

Wednesday, August 10, 2005 8:20 AM CDT

Today we were given the news that the antibiotics haven't worked. Which means that tomorrow, Rachel will go to the main theatre to have her line taken out. It's a bit disappointing, but there we have it. She'll have IV antibiotics for 24 hours afterwards via a cannula, and then they will leave it a week, so that we can have a break, and on the following Monday, she will go back to main theatre to have a new line inserted. I think she will then be in hospital for a few days, since she is due to start her 'delayed intensification' block on the Tuesday.

One slight blessing is that, not having a line to infect, she will be able to go on the beach next week, and if her wound heals sufficiently, it may even be possible for her to swim! It would absolutely thrill her if she could swim, so fingers crossed it can happen, because she won't be doing it again for at least 2 years.

Monday, August 8, 2005 1:34 PM CDT

The 3rd version of antibiotics, in action since Friday, seems to be doing the trick. Rachel is no longer spiking higher temperatures, which gives us hope that the bugs are now being dealt with effectively. As I may have said in an earlier update, the consequence of not eradicating the line infection, is losing the line, which is not desirable for a host of reasons: more surgery; more scars; more wounds to heal;chance of new line not working effectively;chance of infection in new line;risk of puncturing lung during surgery.

Rachel's bloods have also indicated a dowturn in her albumin since being admitted 8 days ago - definition of albumin as follows:"The main protein in human blood and the key to the regulation of the osmotic pressure of blood." Basically, she isn't eating well enough, needs to increase her protein intake. This isn't surprising because, since being admitted to hospital, Rachel was only eating white bread/toast and crisps. So, a visit from the dietician, along with a star chart, has induced a most amazing change in her eating habits over the past few days. She has not asked for crisps ONCE since the dietician told her that crisps were bad for her. She has tried so hard to eat meat at each mealtime, although not quite so hard to eat the vegetables....! She has also tried to eat a banana and a golden delicious ("because they're delicious") each day, so that she can get her sticker, despite it obviously being a struggle for her. I know I keep saying it, but this girl is one in a million.

The other rather good result we had today is that the consultant agreed to a short delay before starting the 'delayed intensification' block, currently due to start on Thursday August 18th. That is in the middle of our holiday week, and whilst we cannot go far, we all really need a week of quality time together. Rachel will still need to have bloods done during the week, but we can make arrangements to have this done at a hospital local to where we are - 'a hospital' meaning one of the 22 cancer hospitals around the UK who know the procedure. This is easy to do (once we plan an itinerary), so we are hopeful of (a) Rachel being discharged on Friday, and (b) having a week free of complications. Then Rachel will start her intensive block (8 weeks) the following week.

Finally, Isla has gone to Norfolk with Granny and Poppa for the remainder of the week. It is an enormous help to us all, Isla is so excited, Paul and I are so relieved to have a bit of pressure removed, and Rachel is happy with the arrangement, having Paul and I all to herself for the rest of the week.

Saturday, August 6, 2005 3:30 PM CDT

Rachel's antibiotics were changed again yesterday (Friday), because they found another bug ('they' being microbioloy)in addition to the pseudomonis bacteria identified during the week. So she is on the 3rd version of antibiotics, a 7 day course with effect yesterday. 4 times a day (midnight,6am,midday,6pm)so we are now targetting being allowed home on Friday. We haven't had the microbiology response regarding the stool samples from Thursday, so we are still in isolation in cubicle 3, but we should have some news on Monday. Meanwhile, it means that we are allowed out of the ward to go for walks, meals etc, but we aren't allowed into the kitchen/playroom on the ward in case anyone else picks up a bug that Rachel 'might' have. Ie it is probably a bad dose of diarhhoea caused by the antibiotics but the doctors can't take chances. It is absolutely right, the ward is populated by children with suppressed immune systems, and it could be disastrous to spread anything around.

Not sure what else to say, really: Rachel has been lucky not to have had infections before now, and if she is hospitalised for 2 weeks out of 4 months, actually, that's not bad at all. OK, Tuesday wasn't good, but she's through it now, and Paul and I have learned some things from it. We are so much more appreciative of how quickly things can develop, and hence we understand why we have been advised not to stray far from the hospital until she moves onto the 'maintenance' phase, currently due to start early Feb but inevitably there will be delays, so maybe March/early April next year. Whilst the chemo is all daycare based, it is an almost certainty that there will be other periods of hospitalisation over the next few months.

Thursday, August 4, 2005 5:13 PM CDT

Well, today brings a new situation - Rachel is in isolation at the end of the ward, in cubicle number 3 (which actually isn't a bad deal, it's the only en-suite in the place....)as a result of the extremely bad diarhhoea which has developed. It could be simply a result of the antibiotic cocktails she has been 'enjoying' over the past 3 days, but if it is another bug/virus, it is pretty important that it doesn't spread to the rest of the ward. Hence the isolation: it means no playroom for Rachel, and no kitchen for the grown-ups. The upside is, the nurses are happy to fetch and carry for coffees/food/toys/whatever, but it isn't much fun not being allowed over the threshold. Stool samples have gone to (I assume) microbiology, so we'll see what turns up in a day or so.

Paul is in hospital with Rachel tonight, I am back in hospital with her tomorrow for the next few nights. Meanwhile, I had a letter from the Anthony Nolan Trust to say thank you for Barney Leaf's sponsorship, which raised £515. Harriet (Phillips) and Sophie (Parker/Iliffe) with some others are doing some fund raising in Battersea for Leukaemia Research this month. I shall post details next week. Our amazing little girl is providing some fantastic inspiration to our friends. She is worth it.

Wednesday, August 3, 2005 3:14 PM CDT

Rachel is back on track, with adjusted antibiotics to deal with the specific bug in her line, identified this morning by microbiology department as pseudomonis? This is usually found in and around the body but not usually lurking in a Hickman line! I am told it is a sticky sort of bacteria, ie takes a bit of shifting, so she will probably be in hospital for the next 7 days as from today. They need to make a concentrated effort to shift it, not to leave anything to chance by letting her home, for instance.... (If the line isn't cleansed, the alternative is losing/replacing the line - a surgical procedure carrying it's own risks/recovery, ie not an option at this stage).

I have to say, last night was quite upsetting for us all, Rachel included. The consultant this morning even referred to the episode as 'scary.' Today Rachel was quite subdued, and very reluctant to let the nurses administer any medication via her line, which is a first. She was clearly tired, and anxious in case it might happen again. However the line has now had a few lots of antibiotics and some chemo through it, so I think she is more confident now that the events of last night won't recur each time the line is used.

Regarding the chemo, her neutrophils have fallen to 0.7, so the IV MTX due today was omitted as per the protocol (if neuts <0.75, the MTX is omitted). So, whilst this is good news re her general well-being for the next few weeks, it isn't great because (a) that means 2/5 doses of chemo in this block have been omitted (b) she is more likely to be starting the next block on schedule. The latter is bad news because it is in the middle of the week Paul has off work, and we were hoping to go away that week. I had been hoping that she might be delayed in starting the block, firstly because of the holiday but secondly, I really wanted her to have her first day at school on August 31st with hair. I am guessing the outcome, but she will have a new (for her) chemo drug in the next block, which is a serious lose-your-hair drug. She has lasted unbelievably well, but it's on its last legs. Oh well. I shall post an updated photo soon.

Tuesday, August 2, 2005 3:47 PM CDT

Today started off well. Rachel was in good form, so much so that we 'got out' for a few hours in the middle of the day. However, things went downhill rapidly around 6pm, when Rachel started to cry and shiver - the antibiotics were pumped into the second of the 2 lumen on her Hickman line, and lo and behold, it was very quickly obvious where the bugs were. We instantly got a dose of some Holby City dialogue: tachycardic;septic shock - she was shaking violently by this stage, felt very cold but in fact had a rapidly rising temperature. She kept rolling her eyes and trying to sleep (which we didn't allow to happen),and was put on oxygen, but then she vomitted into the mask and all over the bed/her/me. To be honest, the sequence of events is a bit of a blur, but the nurses kept telling us not to worry, this was not an unusual consequence of a line infection - of course they could see how anxious we were and whilst we were trying to calm and comfort Rachel, they were trying to do the same for Paul and I.

The episode took about an hour from start to finish, I guess. Once she was sick she seemed a bit better, although her pulse was still hitting above 170 each time she stirred, 150 when dozing. She had a big dose of calpol, and then some more antibiotics - into the non-infected line! - and she is ok now. However, the antibiotics are being stepped up and I fear that any hopes of getting out before the weekend have now been dashed. I think the course is now 7-10 days (they were talking about 5 - 7 days this morning), I believe it may be every 8 hours, 2 1/2 hours to administer each dose intravenously, meaning that there wouldn't be much point in being anywhere else other than right here in ward 27. The doctors will make some decisions tomorrow when they see her, including the chemo she is due to have tomorrow. My understanding is that it will go ahead as per the protocol but I really don't know for sure. Tomorrow's chemo is the last dose of this block.

Tonight's experience shows exactly why we have been advised not to stray far from the hospital. Her condition deteriorated so incredibly quickly, and it can happen at any time when she is on such intense medication (ie chemo) and her blood counts are so low.

Monday, August 1, 2005 3:43 PM CDT

Rachel is back in hospital today. We came in this morning, for bloods and an assessment ahead of her chemo due on Wednesday. About 1 hour after we left hospital, Rachel became unwell, she was complaining of sore feet, she felt sick, and she was cold. When we got home, I took her temperature, which was 37.1, but I noticed that she had goosepimples and she asked for another blanket to keep warm. Since her normal temperature sits at around 35.4, I thought that there might be something brewing but when I called the hospital, they said to bring her straight in, not to wait for the 38.5 - being hot and feeling cold is a sure sign that things are cooking. By the time I had got an overnight bag together, dropped Isla off with Paul and got to the hospital, her temperature was 39.0 and she wasn't a well little girl. Calpol and IV antibiotics quickly worked their magic and she is now bright and breezy, although you can see the tell-tale dark rings circling her eyes.

So, we are in hospital until at least Thursday morning. When she will be allowed home will depend on (a) what the blood cultures grow (b) how she is by then. The antibiotics are a 5 or 7 day course, but it is possible to complete the course via oral medication at home, if she is well enough. It appears that it is a line infection, ie when her Hickman line was accessed this morning, some bug may have gotten into her line somehow. The blood cultures will confirm this, or discount it.

Sunday, July 24, 2005 4:23 AM CDT

In again today, for IV Methotrexate and IV vincristine. The methotrexate dose is reduced by 20%, because they omitted the previous dose. I am very glad that the toxicity was reached via low blood counts rather than via the mucositis, because it would have been extremely unpleasant for Rachel. Only one more dose after this, on August 3rd, and that is this block finished. Next, a 2 week delay to allow recovery, and then the next 8-week block 'Delayed Intensification 1' which includes the dreaded dexamethasone (steroid).

Meanwhile, Sinead Furber and her family are doing a bike ride for Leukaemia Reasearch. I can't believe just how much Rachel's illness has touched our friends - Jason Whowell, Barney Leaf, Nick Shirley and now the Furbers all raising sponsorship to help Rachel. We must be the luckiest family in the world to have such support from our friends. Both Nick and Sinead's link are at the bottom of the page.

Wednesday, July 20, 2005 3:13 PM CDT

Rachel is in hospital tomorrow, for a lumbar puncture (general anaesthetic for intra-thecal MTX) and assessment for the IV chemo on Sunday. Her limp is pretty bad (side effect of vincristine), she is even hopping on her good foot now, but she refuses to admit it hurts. So I guess the physio will see her tomorrow after her op. But she is on great form, thinning on top but still the happiest, smiliest child you could hope to meet. Breaks my heart every day.

Sunday, July 17, 2005 3:15 PM CDT

After Thursday's vincristine, Rachel's limp has returned. It's not bad, it is just something we have to keep tabs on, and it is interesting (and probably significant) that it has re-appeared so quickly after the chemo was administered. She also has quite bad diarhhoea, and is complaining of a sore bottom, plus what I would call quite acute tummy ache, although she hasn't been sick. These are expected side effects of the methotrexate, so I am now thinking 'thank goodness' that her scheduled dose on Thursday was omitted. (These doctors know what they are doing ...!)She still refuses to let these discomforts slow her down, though, and she has had another action-packed weekend despite our efforts to try to keep her activities a bit more low key. She is due in hospital on Thursday for a lumbar puncture, and her next IV vincristine and IV Methotrexate is scheduled for next Sunday, so we'll see how things progress. The doctors will check her over before her general anaesthetic on Thursday, to decide what chemo will go ahead on Sunday.

Thursday, July 14, 2005 2:10 PM CDT

Rachel didn't get her methotrexate today, only her vincristine (both chemo drugs). The reason she didn't get the MTX was that she is neutropenic, and this drug is so toxic that giving it to her with her counts so low would make her unwell (and hospitalised), and that is not the idea - the idea is to administer 'to toxicity' so this is one measure of toxic. So, this dose is omitted, and we just carry on with the block as normal, tomorrow being PegAsparaginese (the painful one in her leg) and the next MTX in 10 days time. She also has intra-thecal MTX (ie via lumbar puncture) next Thursday, which means a general anaesthetic.

She was very sick tonight at bed-time, having been complaining of acute stomach ache for the previous half hour. I think it might have been a combination of the heat and the chemo, but I'll keep a close eye on her tonight just in case. Ususally she knows when she is about to be sick, but this took her (and me!) by surprise. As I said, we are in again tomorrow anyway, so she'll get checked over then.

Wednesday, July 13, 2005 7:56 AM CDT

Went to hospital for Rachel's assessment yesterday, ahead of her scheduled chemo tomorrow (Thursday) and Friday. Tomorrow is IV vincristine and IV methotrexate, which is the one they will continue to increase the dosage 'to toxicity.' She is fine, her liver is now palpable though not enlarged (ie it is not as gooey as a normal liver, hence the doctors can feel it - at least that is how I understand it) so they will go ahead with the increased dosage. Her mouth is fine, too, since we started on the mouth care regime to help prevent ulcers etc.

Rachel's hair has started to fall out again. It is amazing she has held onto it this long, but I think in a few weeks it will be all but gone. Just in time for her to start on the dexamethasone again...!! (that is the steroid which caused the horrendous weight gain at the beginning).

Monday, July 4, 2005 3:36 PM CDT

Rachel is back home today. She had some kind of seizure yesterday, no-one is sure quite what or why. One thing I am sure of, it scared us witless yesterday. I was terrified it was a brain haemorrhage and that we wouldn't be bringing her home again.

Paul spent much of the day in hospital waiting for the verdicts from the neurologists. Basically, they have said that since she has clinically completely recovered, and there is no apparent explanation, they will not do a scan unless it, or something similar, happens again. Meanwhile, one of the drugs she is on can make the blood clot, so the oncologists want a final check on the clotting on Wednesday morning. Otherwise, all the blood and urine tests were clear, and they went ahead with her chemotherapy today.

We just have to take this as a warning, I guess, The regime she is now on will make her unwell for sure, so we have been told to keep a low threshold ie as soon as she appears vaguely not herself, we are to take her straight to hospital. Also, we need to make sure that Rachel's activities go at Rachel's pace - she has been so well, and is such a little fighter, always determined to keep up with everyone else, that for normality's sake we have allowed her to do that. We just need to be a bit more prepared to make a fuss about what's best for her than we have been.

Sunday, July 3, 2005 10:56 AM CDT

Rachel is back in hospital today. She had been quiet all morning, and then she started to be a bit distracted, not responding when we spoke to her. This then progressed into her mumbling incoherently, and then she was sick - she just stood motionless, being sick. After we had changed her clothes, she suddenly put both hands to her head, and started shouting 'hurry up, Mummy, hurry up!' I didn't know what she meant, I thought maybe she was going to be sick again, but then she started to cry, and we just got into the car and drove straight to the hospital, leaving Isla with our friends without so much as a glance. She was moaning and half crying by this point, and then she fell asleep. I have to say, this episode was pretty scary, in a world where almost the worst has happened to our daughter, imagining other 'worst' scenarios comes easily. She has now recovered from whatever the turn was. Her test results (blood/urine) are all normal, so as it stands we don't know what it was, or what may have caused it. She is staying in overnight, and is due her next chemotherapy tomorrow, although the consultant may decide to delay it as a result of what has happened today. A decision will be made in the morning.

It could have been that she just overdid things this weekend, or she may have been dehydrated (she is on fluids in hospital today). Or it could be some drug side effect. Or, who knows. But it is a reminder that, whilst Rachel really does look well, and fights to keep up with everything that is going on, her health is very fragile.

Wednesday, June 29, 2005 7:40 AM CDT

We still haven't spoken to the consultant about Rachel's bone marrow results. I am taking the view that it must be ok, because an unexpected result would have prompted at least a call. When Rachel is in for her assessment on Friday, I can ask then.

Meanwhile, she has some ulcers in her mouth already. She couldn't eat her banana at break-time this morning, and I had a look in her mouth. I could easily see 2 ulcers so I didn't bother to look any closer, there will be more lurking. Since this phase is supposed to be 'escalating' I am unsure what happens now, since this has happened within days of the first dose. Meanwhile, stocking up on the tomato soup and banana milk .....

Sunday, June 26, 2005 8:22 AM CDT

Yesterday's visit to hospital was fine, Rachel had her intra-muscular chemo (PegAsparaginase) with a few tears - giving her calpol beforehand definitely takes the edge off - but it was over in seconds. We also got some mouth care bits and pieces, to try to minimise the mucositis (sore mouth) which will develop from the IV MTX (methotrexate)in this block.

Rachel is fine, although she was sick yesterday (so is back on the anti-nausea medication), her appetite has disappeared again, she is limping and is noticeably more tired. The consultant said there is a 50-50 chance she will be hopitalised at some point over the next month, either because of the mucositis or with an infection because of her immuno-suppression during this stage. Meanwhile, we haven't had the bone marrow results from Thursday: we could just do with having a lovely result, but as I said before, we are aware that it is as likely to be a bad result as a good one. We should hear Monday or Tuesday.

The next hospital appointment is Friday, for an assessment on her reaction to the first dose. Various aspects are monitored, and blood will be taken on Thursday to aid Friday's assessment. They are looking out for mucositis and liver function, as well as monitoring the peripheral neuropathy (her sore feet). Vincristine and MTX doses will be altered or omitted if she worsens, but of course we want to keep the chemo as strong as possible, because we want her to have the best chance to beat this disease.

Friday, June 24, 2005 3:54 PM CDT

Today was IV vincristine and IV methotrexate. The vincristine is the drug that causes the peripheral neuropathy, and the methotrexate is the drug which causes mucositis (breakdown of soft wet cells eg inside mouth/intestine). So all in all, not a pleasant day for Rachel, not that she realises it. The peripheral neuropathy is a concern, because loss of mobility can be permanent if left unchecked. So, her IV vincristine went ahead only after being checked out by one of the doctors and a physio, who agreed that, whilst she was limping and there is obviously some loss of function in both feet, it is not yet severe enough to reduce or omit the chemotherapy. From now onwards, she will be assessed before each dose. If the pain or mobility worsens, the dosage may be reduced or omitted. Meanwhile, I have some exercises for her (feet) to do twice a day, and pain relief has been prescribed.

Tomorrow, she has the painful chemo: PegAsparaginese into her leg, and she know it is coming so I have promised her a visit to the Disney shop afterwards. And do you know what she said? "Can Isla come too?" Oh she so loves her sister. And then she said' I want Isla in the room with me' ie the treatment room, when she has her injection.

I should also have the results of the bone marrow aspirate tomorrow. This is pretty crucial, if she is to relapse, this is when we know. Fingers crossed. But I have seen a lot of people in the ward being devastated after various results, I am getting used to the idea that bad news comes as often as good news, so I am anxious to know this result.

Thursday, June 23, 2005 7:32 AM CDT

Rachel's little op today went well, we are back into hospital tomorrow for IV vincristine and IV methotrexate, which will just be pushes into her Hickman line, and will take an hour or so.

The bad news is that Rachel's sore feet from Monday has developed into a full-blown limp. The doctors had a look at it today, and she'll see the physio tomorrow. It is called peripheral neuropathy, and is a common side effect of vincristine. The side effects are cumulative, which is why it has taken a while to show, but now that she is having more vincristine, it probably won't go away for some time. Meanwhile, you have to be careful about the painkillers, because eg ibuprofen affects platelet levels, codeine can cause constipation (as does vincristine so you don't want to prescribe both at the same time) and paracetamol does something else which I can't quite remember. So I'm giving her calpol today, and they will work out what best to give her and let me know tomorrow.

Wednesday, June 22, 2005 12:15 AM CDT

So, another fairly fraught day in the Smith household! (Seems to be directly proportional to the weather).

Isla's rash this morning was looking, well, worrying. So I took her the GP, and between the GP and the practice nurse, given Rachel's condition they couldn't guarantee it wasn't chicken pox, although (a) Isla has had it before (b) she didn't have the normal accompanying symptoms (c) the rash was concentrated on her face almost exclusively. So, I called the hospital, they had a confab about it, and they concluded that since (a) it didn't quite sound like chicken pox (b) Rachel has retained some immunity despite her immuno-suppressed state, they said don't worry, but remain vigilant in case any spots appear on Rachel. In the event that spots do appear, Rachel would be given a series of injections (cyclo-something I think) to prevent a 'bad' case of chicken pox (which could be life-threatening, as I understand it).

Meanwhile, the MacMillan nurse came out today to take more bloods, and ...guess what? Her blood counts have soared, neutrophils now 1.4, Hb 10.6 , white blood cells and Platelets up massively too.

We are so relieved to be back on track, with Rachel's counts in a good position to deal with what's ahead. So, tomorrow she will have a general anaesthetic so they can take some bone marrow, and give her some intrathecal chemotherapy (ie into the spinal fluid). As previously mentioned, some bone marrow will be sent away for the MRD testing, but we will not be informed of the results. Nor will the doctors treating her: from now onwards, her treatment is as per the protocol unless the bone marrow under the microscope indicates a problem.

Meanwhile, our friends are just being so amazing as ever - thank you all for your guestbook messages, you make us smile and give us such encouragement, really, you have no idea how much it means to us. On the activity front, Nick Shirley is gathering fabulous sponsorship for Leukaemia Research (link below), Jason Whowell is running for the 'When You Wish Upon a Star' charity, which has granted Rachel a wish - she is going to visit (the 'real') Santa in Lapland on Dec 15th - and Barney Leaf was 'Running for Rachel' this weekend just past, in aid of the Anthony Nolan Trust(www.anthonynolan.org.uk), which saves so many lives: we don't yet know if Rachel will need a bone marrow transplant, but the high MRD reading makes it more likely than the original prognosis suggested. These charities really do make a difference, whether it is directly saving a life via research breakthroughs, or whether it is to give the children a memory they will savour for their whole lives, whether they overcome their disease or not. So especially to Nick, Jason and Barney, we are so grateful, we can't thank you enough. If any of you suddenly think 'Oops, I should have given to Barney/Jason/Nick' it is not too late, go for it.

Tuesday, June 21, 2005 4:00 PM CDT

A difficult day in the Smith household today. Firstly, the 'heat rash' that Isla developed yesterday had worsened this morning, leading to a new amateur diagnosis of post-viral rash. For Isla, no problem, yes she hasn't quite been on top form over the past few days, but on the understanding that post-viral means the worst is over, we're not too concerned. Of course, it sent me into a semi-blind panic over the implications for Rachel. Not only that, bearing in mind I have had irrational thoughts since Sunday night about her falling blood counts indicating a relapse, when I picked her up today from pre-school, she complained of sore feet. Sore feet were Rachel's main symptoms of leukaemia, pre-diagnosis. Whilst sore feet/limbs are also a known side effect of the chemo, she hasn't had any chemo for 4 weeks now, and she hasn't complained of sore feet since March/early April. So my mild panic became full-blown blind panic today. I called the hospital, and the consultants discussed my concerns at the (weekly?) patient planning meeting this afternoon. Basically, they remained unconcerned, and were happy to wait for tomorrow's blood results, and take it from there. Makes sense, and I feel happier to have aired my concerns. I do not believe that her counts will be adequate to start on Thursday, but no-one can predict it, certainly not me in my emotionally-skewed corner.

Meanwhile, I have been taking Rachel's temperature every hour, and there doesn't seem to be a problem, she is 36.0, a little higher than her normal, but it is hot outside! I shall be vigilant for the next few days, and fingers crossed she won't take on whatever virus Isla has had.

I feel exhausted, as if I have had a very stressful 18-hour day at the office. Meanwhile, Rachel is happy as Larry! So, I have subjected both Paul and I to this panic today, by virtue of an overactive imagination/worry mechanism. There really is no point, I need to learn to be better at taking things as they come, not anticipating the possibilities and needlessly increasing our anxiety.

I'll update again tomorrow night when we have the blood results.

Sunday, June 19, 2005 4:39 PM CDT

Ten to eleven Sunday night, and the hospital have just phoned to say that from the blood taken this afternoon, Rachel's counts have fallen again, neuts now at 0.4 (from 0.5), they need to be 0.75. Hb has also fallen, to 9.2 (from 9.6). White blood cells and platelets are up. This is just bizarre - she is so amazingly well and full of energy that it's hard to imagine the weird stuff going on in her blood. So, bloods again on Wednesday, targetting Thursday start. I'm going to keep her calm and well rested between now and Wednesday, I haven't a clue if that makes any difference but I am just trying to be logical in my thinking that if she conserves her energy generally, it might focus more of her energy on the blood counts recovering.

Patience is not a virtue I was blessed with.

Monday, June 13, 2005 11:39 AM CDT

Bloods taken today show that Rachel's neutrophils still haven't recovered to the required level, so we are on hold now for a further week. Neutrophils are at 0.5, they need to be at 0.75 to progress to the next block of treatment. Disappointing, but there we have it. We'll try again a week today.

I have changed the photos again today, finally having the courage to show you a little of what the steroids did to her.

Monday, June 13, 2005 11:34 AM CDT

Bloods taken today show that Rachel's neutrophils still haven't recovered to the required level, so we are on hold now for a further week. Neutrophils are at 0.5, they need to be at 0.75 to progress to the next block of treatment. Disappointing, but there we have it. We'll try again a week today.

Monday, June 13, 2005 11:34 AM CDT

Bloods taken today show that Rachel's neutrophils still haven't recovered to the required level, so we are on hold now for a further week. Neutrophils are at 0.5, they need to be at 0.75 to progress to the next block of treatment. Disappointing, but there we have it. We'll try again a week today.

Tuesday, June 7, 2005 4:36 PM CDT

It looks as if those drugs are doing something on the inside, even if it doesn't look like it on the outside. Rachel's blood counts have dropped, specifically her neutrophil count, which needs to be at least 0.75 to move onto the next block of treatment scheduled to start on Thursday. Bloods from Tuesday last week had neuts at 0.5, and today's bloods are showing a slight fall to 0.4, which means that she can't start the next block. It is so frustrating, because she appears so well, but this is exactly what happened at this stage last time, and it was 10 days or so before the counts improved resulting in a full 2 week delay.
She can only start the next block ('Escalating Capizzi 1') on a Tuesday or Thursday, because day 1 is intrathecal MTX (IT/intrathecal is lumbar puncture) and bone marrow aspirate, which means a general anaesthetic, and these procedures are carried out in the mini operating theatre on the ward on Tuesdays and Thursdays only. So, we'll try again with bloods on Monday with a view to starting on Tuesday next week.

As I explained in the previous journal entry, Rachel now has 32 weeks of intensive chemotherapy, split into 4 blocks as follows: escalating capizzi 1/delayed intensification 1/escalating capizzi 2/delayed intensification 2. The end date was 18th January 2006, when she would move onto 'maintenance' - the provisional end date was 4th January before the 2 week delay last time. This delay means that date is pushed back to Jan 23rd 2006 at the earliest, so you can see why the delays are frustrating. It is a near certainty that there will be more delays, especially bearing in mind that Rachel is likely to be unwell at various stages over the next 4 blocks, since all 4 are more intensive that the 8 week block she has just finished.

Sunday, June 5, 2005 4:28 PM CDT

Well, Rachel has had a break from chemo for a week and a half, and she is on terrific form. Her energy levels are good, and her appetite is fine - she even ate some chocolate this weekend, the first for months. She also almost looks like the old Rachel, although the double chin is still there, and her hairline has receded an inch. And her eyebrows have all but gone. And eyelashes. On second thoughts, maybe she doesn't look like she did before the medication started. I would just love her to lose the double chin, I worry that it will be there forever.

She starts the next 8 week block on Thursday, assuming her blood counts are ok on Wednesday. Neutrophils have to be above 0.75, platelets above 75. Last week her platelets were ok but the neutrophils were 0.5, but they should have recovered from there in the absence of further chemo. The 8 week block is the first of 4 intensive 8 week blocks, the second two being a repeat of the first two. So, the next 32 weeks may give Rachel some challenges, we just don't know how well she will be.

We discovered on Wednesday that we will not be given any further results from the remaining MRD tests that Rachel will have. As you know, Rachel's treatment is part of a national trial(UKALL2003), the trial lasting for around 6 years. The MRD (Minimal Residual Disease) test is new in the UK treatment protocol, and is only tested as part of this trial: if you opt out of the trial and go on the standard treatment protocol, MRD is not considered, or even tested for, at all. The rationale is, if a child tests positive for MRD, that child will be randomised onto a minimum or maximum treatment protocol. Once on that protocol, the child will stay there for the duration of the treatment assuming no relapse during the treatment, and only at the end of the trial will the statisticians give the verdict on whether high risk relapse children (ie high MRD) do in fact benefit from a more intensive treatment protocol or if future relapse appears unrelated to the strength of treatment. Rachel, of course, is on the maximum protocol within the trial.

In a way, it might be a good thing that we don't live from one result to the next: whilst it would be a massive relief to be told that Rachel was now 'low MRD' by the same token it would be increasingly devastating to be told each time that she was still high MRD. So now we just carry on rather blindly, waiting for her treatment to progress. The next 32 weeks will be heavy, and hopefully her bone marrow tests will show complete remission. When she moves onto maintenance next year, it is time to cross your fingers and pray that the disease doesn't return once the drugs are reduced. And then the next stage is when she is signed off in 2007, and the drugs are removed completely - will it come back when the drugs are removed? Will it come back before then? Has it gone now, never to return? The uncertainty is difficult to live with - it is mentally exhausting to constantly suppress these inescapable fears.

Friday, May 27, 2005 2:33 PM CDT

So, vincristine (chemo) and new blood yesterday, Rachel was just bouncing off the walls last night! It really is hilarious, she was just SO full of life/chat/cheek/song/you name it! She literally ran out of the hospital - usually she is in the pram or I have to carry her - and she was just singing to herself all the way home in the car, totally happy and contented. It wears off very quickly though, whilst she is well today, she is just 'normal' well, rather than 'hyper' well. So we have nothing other than bloods and weekly check up for 2 weeks, until Thursday June 9th, which is the next LP (lumbar puncture) also incorporating the bone marrow and MRD tests. The MRD result will take 10 days - 2 weeks to come back, and that is what we need to be good: bad news on that is a significant setback in her long term prognosis. Just to dwell a bit on the MRD bit for now - Minimal Residual Disease is something that they ( 'they' being the medical profession I guess) don't know much about, other than that previous trials, in Europe I think, have shown that a high level of MRD is a powerful indicator that the patient will relapse. They don't know how to treat it, they don't know if increasing the chemotherapy will affect the probability of relapse, and this is the trial that Rachel is participating in. She was randomised onto the strongest treatment protocol when diagnosed 'high MRD' - some children are of course randomised onto the minimum treatment path. We are so thankful that Rachel is on the maximum chemo, since layman's logic says that stronger treatment will have a greater effect on destroying MRD than if she had remained on the minimum medication. I think the trial ends in 2009, so it will be years before we know the outcome.

A weird realisation hit me yesterday. Rachel doesn't actually 'have leukaemia' at the moment - she is in remission, and the bad stuff she has to endure is all from the medication, not the from disease itself. So any discomfort/pain/etc she experiences now is purely from the treatment, trying to ensure the disease doesn't return. I'm not sure if that provides me with reassuance, or with horror that we are inflicting it upon her. Poor Rachel, she is such a little star. She refused to wear a hat today ( it was very hot, she doesn't have too much hair on the top/forehead bit) because I wasn't wearing one!! So, shopping trip this weekend to get ME stocked up on hats/bandanas to keep her company over the summer!

Wednesday, May 25, 2005 11:15 AM CDT

I spent most of the weekend taking Rachel's temperature, worrying if the runny nose that appeared on Friday was going to develop into anything. Whilst her temperature edged up to 36.5, it never got beyond that and now she still has a runny nose but I am unconcerned! Basically, the last time she had a runny nose and was neutropenic, she ended up with a spiking temperature and started vomitting, so I had to get Nicky (neighbour) to come round pdq to baby-sit Isla and we hot-footed it into hospital, to come out 4 days later. Hence my concern when a runny nose appears.

With hb level of 8.4 from the blood taken last Thursday, I was expecting that another transfusion was on the cards. The chemotherapy can take a few weeks to work through to blood counts, and it was about this stage in the last mini-block that her counts fell sharply. So, the community nurse came yesterday to take bloods, but I had a call from the hospital yesterday evening to say that Rachel's 'unit number' wasn't on the blood bottles so the lab refused to process the results! So, another visit from the community nurse today, and indeed when I spoke to the hospital this afternoon, her Hb had dropped to 7.7 so she will have a transfusion tomorrow. Her neutrophils are 0.3 which is extremely low, meaning she is particularly susceptible to infection, so I shall remain vigilant for any sign of her temperature going up. Actually it suits well to be in hospital tomorrow, because Rachel has another chemo appointment - vincristine into her Hickman line - so it has worked out ok.

In terms of signs that she might need a transfusion, I was aware that at 8.4 and dropping, it was a probability, and so I was looking for signs. She definitely appeared a little paler on Monday ( although probably only to me, not to anyone else particularly), and also on Monday and Tuesday she was being a bit of a pain! ie she was being a bit awkward and tearful, a sure sign that she was not quite herself. So new blood for the weekend: great, she'll be bouncing around, full of someone else's energy!!! we should all do some of that!!

Friday, May 20, 2005 4:26 PM CDT

Bloods from yesterday show Hb at 8.4 which means Rachel will almost certainly need another transfusion within a few days. I'll arrange with the community nurses to come on Monday or Tuesday, and I'll prepare to be in hospital on Tuesday or Wednesday. It usually takes about 4-5 hours, which leaves it a bit tight to still be able to pick Isla up from school, but I always try to manage it that way if I can, to keep some consistency for Isla. Rachel is also due into hospital on Thursday for one chemo dose (vincristine), and then she has a 1 week break to allow her blood counts to recover. Then we start the really nasty stuff: 4 x 8 week blocks of more intensive treatment than she has been having for the past 2 months. Which takes us up to Christmas.

I found it quite shocking, the first few times Rachel had to have a blood transfusion. Now I am a little bit shocked at how casually we accept it - she will without doubt need regular blood transfusions throughout her treatment. Yes, I'm doing it again - please, please think about giving blood if you don't do so already. There is a link at the bottom of the page. There is boy on the ward who has ALL like Rachel, but he relapsed a year after his treatment ended and now needs a bone marrow transplant. His Mum told me yesterday that they have found SIX matches for him, which I find amazing. These are unrelated donors, isn't it fantastic?

Monday, May 16, 2005 8:48 AM CDT

Since Rachel's latest transfusion on Thursday, she has been bouncing around, full of energy and good humour. We had to pop into hospital last night unexpectedly, because at 6pm I noticed that the clamp on her Hickman line had become undone. This means that blood can seep into the line and will clot, which can cause all sorts of problems, so it has to be flushed and re-clamped immediately. I will ask our McMillan nurse, Marie, to teach me how to do it so that if it happens again, I can do it at home and it won't be so much of a drama. For sure, we have the kit here to do it, it's just the expertise that is missing.

Meanwhile, the cytarabine's for this block are finished, we now have PegAsparaginase and vincristine on Thursday at hospital, and vincristine again the following Thursday. That will mark the end of this block, and she will have a 1 week break to allow her blood counts to recover before starting the next block. Although she was sick on Friday night, her nausea hasn't been as bad this time. Possibly they build up some tolerance to it, I don't know. Meanwhile, her blood counts (taken yesterday) are fine, thanks to the transfusion last week, but they can fall very quickly after the chemo she has just had, so they'll check it again on Thursday.

Wednesday, May 11, 2005 5:15 PM CDT

More bloods today, and whilst Rachel still appears extremely well, the hospital called this evening to say that her counts have fallen and she needs another blood transfusion tomorrow (Thurs). So, we'll be in hospital most of tomorrow I guess. Nothing much else to say, really - we just feel like we are playing a waiting game until the next bone marrow/MRD in 4 weeks' time. Funny how the chemo regime seems to have become the normal routine in our life now.

Tuesday, May 10, 2005 3:02 PM CDT

Well, the visit to Belvoir Castle yesterday was a huge success. Emma and David were so kind, and had really made an effort to make it a special day for Rachel. It was an absolute thrill for her. The girls were served by the butler, they bounced on the extremely grand and beautiful four-poster in one of the guest bedrooms and they were driven in the Duke's 1908 Renault - Rachel sang Chitty Chitty Bang Bang the whole way!! She had an amazing time, as did Isla.

I'm popping into the hospital with Rachel tomorrow, just to pick up the chemo for this week which will be administered at home by the community nurses. Whilst we are there, one of the doctors will do a quick review : once per week Rachel has to have some bloods taken, and has to be seen by a doctor for a check-up. So, whilst she can be treated at home some of the time, she still has to come to hospital once per week for the duration of her treatment, either to clinic or to the ward. She remains well, although her appetite is slightly off, but nothing really to report. The next big event is in 4 weeks' time, when the next MRD test is due. We will have to wait 2 weeks for the results, and I can tell you I am already anxious. Another 'high MRD' result will be just too awful to contemplate.

Friday, May 6, 2005 3:46 PM CDT

Thankfully having now resumed the treatment, Rachel is continuing to put the rest of us to shame. She has pain in her left foot (think it's a chemo side effect) and has been sick 3 times since wednesday night, but it is as if she just doesn't care. She is just getting on with things, the next thing she is looking forward to is being Princess for a day at Belvoir Castle! Emma, Duchess of Rutland, has so kindly invited Rachel to Belvoir Castle on Monday, to live out her Sleeping Beauty/Rapunzel/Cinderella fantasies, and Rachel - well, she just cannot decide what to wear!!! Thankfully, there won't be a Prince present for her to marry (that was putting the trip in jeopardy, Rachel wasn't keen...) but she just might get to ride in a real carriage with real horses. So, as you can imagine, not much else is being talked about at home at the moment....!

Isn't it fantastic? Truly, so much good comes out of adversity (thank you, Emma, for this), and we are all embracing these joyous moments. It is so difficult to accept that Rachel is unwell - ok, she doesn't look like the old Rachel any more, but her character is absolutely there. I know I keep saying it, but it still seems surreal that she is so ill. Isla had her swimming lesson last night, and when I asked her on the way home if she had enjoyed it, she said ' I don't like it without Rachel, I just wish she was there with me.' Sometimes things hit you unawares, and I struggled with that thought all the way home, because of course it will be 3 years before Rachel can start to swim again (assuming all is well, ie she achieves/sustains full remission after her treatment and can have her Hickman line out).

So, chemo at home this weekend, and I hope to post some photos of Princess Rachel on Monday night. :-))

Wednesday, May 4, 2005 3:05 PM CDT

After a 2 week delay, Rachel started the next mini-phase of her treatment today. We were in hospital for 5 1/2 hours while Rachel had cyclophosphamide and fluids (to protect the kidneys)as a day patient, and we came home with 4 doses of cytarabine (chemo) for the community nurses to administer via Rachel's Hickman line at home. This is done over the next 4 days, 24 hour gap between each dose, and will be repeated on the same days next week. I also came home with mercaptopurine, which is another chemo drug, which is administered orally (by us) daily for the next 2 weeks. I have 2 types of nausea medication for her, since the cytarabine will make her feel nauseaous and she will lose her appetite. However, she is still carrying extra weight from the steroids, so we aren't too worried at this stage about the loss of appetite.

Yesterday evening's outing to see Hi-5 was a big success. The girls sang and danced their hearts out, and when we took them backstage to meet Hi-5 as a special treat, they just could not believe it! Isla was just bursting with a smile bigger than her little face could cope with! but Rachel was a little bit overwhelmed - I mean, you have to understand that they watch Hi-5 every morning, dance in front of the TV : these guys are their HEROES!!! But Rachel struck her chin firmly to her chest and just couldn't speak. Awwwwww. I tried, I really tried, to cajole her into speaking to them, but she just couldn't do it! However, she is so pleased with herself today, she had 'best night of her life!!' Meanwhile Isla informed me that she wants to go and live with Hi-5. Check out the 'photos' section.

Friday, April 29, 2005 3:31 PM CDT

We spent 3 1/2 hours in hospital today, only to find out that Rachel's blood counts had fallen again, and hence her next phase of treatment could not go ahead. It is very disappointing, she is extremely well at the moment and we are just so keen to press on with her treatment. However, nothing we can do, so we intend to have a fun-and-sun-filled, chemotherapy-free bank holiday weekend, capped with a Hi5 concert on tuesday evening for the girls - which they are VERY excited about. (For those of you who don't know who are Hi5, switch on Milkshake at 7am each morning .....).

So, hopefully on Wednesday she can start, which will be a full 2-week delay. Meaning her overall treatment time is extended by 2 weeks - currently she is scheduled to finish treatment in May 2007, a gaspingly long time from now. Just imagine how many delays we may have before the end of her treatment. But I fear the end of her treatment, because of her high-risk-relapse prognosis - what if the leukaemia comes back as soon as the medication stops? So, no point in wishing any of this time away, we need to embrace and enjoy our lives as they are now, as much as we possibly can. And,as I have said before, our girls are delivering joy to us every day, moments that might previously have passed by unnoticed.

Thursday, April 28, 2005 2:54 PM CDT

We have now delayed the next mini-phase of Rachel's treatment for a week. Her blood counts have been low, which is expected because the effects of the chemo drugs take time to work through. However, her temperature spike last wednesday I guess has had an effect too. Tomorrow (Friday) we are going into hospital early, around 8am, so that they can take blood, see what the counts are and hopefully start Rachel on the cyclophosphamide, all being well. Whilst most of the chemo drugs list hair loss as a side effect, cyclophosphamide is a main culprit: it takes about 3-4 weeks to work through to noticeable hair loss, and Rachel's hairline has now lost a clean inch all around. She had her first - and as yet only - cyclophosphamide on March 23rd, and tomorrow is her second dose. By the end of May, I think it will all be gone. Our gorgeous little girl, it is really tough to see the physical changes in her and realise that she will never look like she did on her 4th birthday again.

So. All being well she starts the next mini phase tomorrow, which is cyclophosphamide tomorrow, cytarabine for the following 4 consecutive days, and the following week the same 4 days (sat/sun/mon/tues) on cytarabine. These are given intravenously via her hickman line. The cyclophosphamide basically mashes the kidneys, so Rachel will be on a fluid drip for 1/2 hour before administering the drug, and for 4 hours afterwards, to protect the kidneys. The cytarabine is not so toxic, and is simply administered into her line, and can be done at home by the community nurses. She will also start mercaptopurine (another chemo drug)tomorrow, daily for 2 weeks administered orally by me at home. In addition, she will have antibiotic every sat/sun (for the next 2 years) and will need anti-nausea medication because experience already tells me that the cytarabine will make her sick.

Paul and I are pretty much into the swing of things now, as are the girls in fact. Isla told me this evening that Rachel would be getting lots and lots and lots and lots and lots .....and lots and lots and really lots of presents from Santa this year because she was poorly. I asked her if she minded that Rachel might get more presents, and she didn't pause for thought before she shook her head and said no. Ahh the joy that you can find in times like this, both girls make us proud every day.

Meanwhile our friends continue to amaze us, even though we are being rather silent in our reponses. Thank you, we love reading the guestbook every day and we draw strength from you. xx

Thursday, April 28, 2005 2:54 PM CDT

We have now delayed the next mini-phase of Rachel's treatment for a week. Her blood counts have been low, which is expected because the effects of the chemo drugs take time to work through. However, her temperature spike last wednesday I guess has had an effect too. Tomorrow (Friday) we are going into hospital early, around 8am, so that they can take blood, see what the counts are and hopefully start Rachel on the cyclophosphamide, all being well. Whilst most of the chemo drugs list hair loss as a side effect, cyclophosphamide is a main culprit: it takes about 3-4 weeks to work through to noticeable hair loss, and Rachel's hairline has now lost a clean inch all around. She had her first - and as yet only - cyclophosphamide on March 23rd, and tomorrow is her second dose. By the end of May, I think it will all be gone. Our gorgeous little girl, it is really tough to see the physical changes in her and realise that she will never look like she did on her 4th birthday again.

So. All being well she starts the next mini phase tomorrow, which is cycolphosphamide tomorrow, cytarabine for the following 4 consecutive days, and the following week the same 4 days (sat/sun/mon/tues) on cytarabine. These are given intravenously via her hickman line. The cyclophosphamide basically mashes the kidneys, so Rachel will be on a fluid drip for 1/2 hour before administering the drug, and for 4 hours afterwards, to protect the kidneys. The cytarabine is not so toxic, and is simply administered into her line, and can be done at home by the community nurses. She will also start mercaptopurine tomorrw, daily for 2 weeks administered orally by me at home. She will also have antibiotic every sat/sun (for the next 2 years) and will need anti-nausea medication because experience already tells me that the cytarabine will make her sick.

Paul and I are pretty much into the swing of things now, as are the girls in fact. Isla told me this evening that Rachel would be getting lots and lots and lots and lots and lots .....and lots and lots and really lots of presents from Santa this year because she was poorly. I asked her if she minded that Rachel might get more presents, and she didn't pause for thought before she shook her head and said no. Ahh the joy that you can find in times like this, both girls make us proud every day.

Meanwhile our friends continue to amaze us, even though we are being rather silent in our reponses. Thank you, we love reading the guestbook every day and we draw strength from you. xx

Saturday, April 23, 2005 8:11 AM CDT

We are back home today, having been in hospital since Wednesday evening. Basically, Rachel's temperature had gone above 38, which means she had something brewing. She had had a clear runny nose for 2 days beforehand, then a pain in her ear since the previous evening, and then the temperature started to rise. She was given intravenous antibiotics that evening, and by next morning her temperature had come down, and basically she has been bright as a button ever since. The antibiotics did the trick for sure. So, intravenous antibiotics in hospital for 3 days, and we are home with oral antibiotics for 5 days. Meanwhile, we'll go back to hospital on Monday so she can start the next phase of her chemo, providing her blood counts have continued to improve. She should have started the next phase on Thursday, but she wasn't well enough. Delays are inevitable, but the doctors prefer to crack on with the treatment. ** update: Monday's blood sample showed that her neurophils have dropped again, so Rachel couldn't start the next phase of chemo. Going in on Wednesday for bloods, with a view to starting Thursday if counts have recovered. see http://rum.ctsu.ox.ac.uk/projects/ukall2003/regimenc.xls for her treatment protocol, currently waiting to start sheet named 'consolidation' column G

The doctor said to me on Thursday morning 'Is this the first time she has been febrile neutropenic?' (ie has a temperature whilst neutropenic). In otherwords I guess we have to expect that this will happen sporadically over the next year. However, I will continue to send her to pre-school, because she needs the normality.

Rachel's hair is thinning but still amazingly ok. However, I am steadily stocking up on hats/bandanas etc. She knows she will lose her hair, but I don't think she really believes it. In a way, neither do we.

There was a report published this weekend, which says that social interaction in infancy can be a factor in developing childhood leukaemia, specifically acute lymphoblastic leukaemia which is what Rachel has. Basically they are saying that ALL is an abnormal reaction by the immune system, and that if infants are exposed to lots of bugs/bacteria, their immune system is stronger and they are less likely to have this abnormal reaction. Makes logical sense - both Isla and Rachel have been quite robust during their childhood thus far. Neither child has has been particularly prone to snotty noses/infections/tummy bugs etc whilst they have both had a spread of the normal things you would expect. You can read the report if you click on the lrf link at the bottom of the page.

Wednesday, April 20, 2005 12:47 AM CDT

ahh ... temperature 38.3, we are off to hospital ..... it's 6.50 pm, we may be in for a few hours or a week ......

Wednesday, April 20, 2005 11:28 AM CDT

Rachel was due to start the next 5-week phase of her treatment tomorrow. However, her blood counts are continuing to fall, and the bloods that were taken yesterday are as follows:
Hb : 10.7
Platelets : 135
WBC : 1.3
Neut : 0.3

Basically, although Sunday's blood transfusion has done the trick with the Hb level, she isn't well enough to start the next phase (neutrophils have crashed) so it looks as if she will be given another week to recover, before any further chemo is given. It is disappointing insofar as if there is a delay, it means that the overall treatment is extended (eg 2 years treatment time now becomes 2 years and 1 week). It is likely that there will be a number of delays such as this throughout the year, so I guess an estimate of when her treatment might finish would be something like April/May 2007? But the second year is 'maintenance', so chemo only about once or twice per month.

Also, since yesterday she is complaining of aches and pains, especially earache but also her legs and chest. I'm taking her temperature every couple of hours (through the night as well) but it hasn't risen above 37.5. If she hits 38, we take her straight to hospital. Pains in limbs are expected side effects from the drugs, but the earache might be a virus, which is only sending me into a very mild panic at this stage.

Today, Rachel has eaten 3 cheese and onion crisps, 1 bread stick, a packet of raisins and half a slice of white bread. She has drunk about 4 glasses of water. Milk is now totally off her agenda. I think it is fair to say that her appetite has now swung to the opposite end of the pendulum. She takes a bite of something and spits it out - not only does the chemo make you nauseous, it seems to actually change the taste, and generally food which was a former favourite now tastes horrid. Whilst I am thankful to see the old Rachel returning ( she hasn't looked like 'Rachel' since the steroids), it is a worry if it continues, because I will struggle to see her being fed by NG tube (nasalgastric tube, into stomach via the nose, to administer liquid feed ensuring the patient gets adequate daily calories).

I will find out from Dr Leonard (Rachel's consultant)tomorrow, what is the plan for the next few days.

Friday, April 15, 2005 4:03 PM CDT

Today we were in hospital for Rachel to have some more chemotherapy (vincristine, IV). She also had some bloods done because Tuesday's blood results indicated that her Hb level had fallen and she may require a further blood transfusion. Indeed, late this afternoon I called in for the results, which showed Hb at 7.6 which means she requires a blood transfusion again this weekend. We are taking her in on Sunday morning, it will take a few hours. I guess I am quite surprised that she needs to be transfused again, only 2 weeks after her last transfusion, but I am sure there will be many such surprises over the course of the next 2 years.....hopefully some of them will be really good surprises.

Also today, I changed the dressing on her Hickman line for the first time. First time I had had a good look at the wound - not at all pleasant to see a huge tube coming out of your daughter's chest, with stitches still attached, red-rimmed and crusty. In fact I wasn't happy with the 'crusty' so they took a swab to check for infection. The area is very vulnerable to infection, has to be kept dry. Basically, Isla and Rachel can no longer have a splashy bath-time together, and Rachel will not be able to swim for 3 years because of it.

Meanwhile, Rachel continues to sparkle. She still has a 'moon' face from the vicious steriods, her hair is becoming progressively thinner, but her character is just as uplifting as it ever was. Whilst complaining sporadically of sore feet, sore hands and stomach pains, she just puts it aside and carries on. This, despite a haemoglobin level which would have most of us collapsing if we as much as stood upright. She is a determined, amazing little trouper, we are so proud of her every single day.

Finally, Rachel will get her 5th/6th bag of blood on Sunday. Each of these bags has kept her alive - a sobering thought, thank you, strangers, for keeping our daughter alive for now.

Wednesday, April 13, 2005 9:28 AM CDT

Rachel is still on great form. Having been so disappointed at being unable to take the girls to Eurodisney this week, we popped down to Legoland on Monday for the day, and what a good decision that was. Firstly, the weather was super, which always provides a feelgood factor. And the park was great - Rachel can't be amongst crowds of people whilst she is neutropenic, so queueing is not an option. Hence, we had passes which meant we could go to the front of the queue on each ride, which meant the girls could get round all the rides without too much trouble. Despite her determination and being pushed round all day on her mega-buggy, Rachel was exhausted by 4pm. She fell asleep in the car before we had got out of the car park and slept for 3 hours without stirring.

Blood results from yesterday show that her Hb is now 8.3 which means she may require a further transfusion at the weekend. More blood will be taken on Friday, when we are in hospital for the vincristine (IV chemo). She is still neutropenic, and in fact she didn't go to her pre-school today because there is some sneezing amongst the children there, so better to be on the safe side.

Friday, April 8, 2005 2:13 PM CDT

This afternoon we received Rachel's blood results from yesterday. Her counts have all fallen since last week - being a bit more technical about it, she is 'neutropenic' with neutrophils having nose-dived to 0.63. In otherwords, she is currently extremely vulnerable to infection since neutrophils are the little chaps who attack bacteria. Normal counts for a child of Rachel's age are as follows:
white blood cell count (WCC): 5 to 13
haemoglobin (Hb): 11 to 14
neutrophils (ANC): 1.5 to 8.5
platelets : 143 to 332

Rachel is currently as follows:
WCC : 1.5 (2.8)
Hb : 8.8 (had transfusion last week at 6.7)
ANC : 0.63 (last week 1.1)
platelets : 91 (last week 184)

Basically, whilst leukaemia is cancer of the white blood cells, the chemotherapy can't target 'bits' of the blood, it just zaps eveything. These results seem to indicate that the drugs are doing exactly as they are supposed to do! If her Hb level drops below 8, she will be transfused again, so bloods will be taken at home again on Monday or Tuesday.

The downside is, this means that our grand plans to get away this weekend have been well and truly thwarted. And to be honest, her treatment gets heavier from here until December, as far as I can guage, so I can't see us having another chance to think about it until 2006 (actually, that is what the consultant told us this afternoon). What a shame, Rachel has really been on top form this week, we were so hopeful that we'd be able to get away to have some precious moments together. But, she has had a good week, she has thoroughly enjoyed returning to her pre-school, and has been having a much-needed midday sleep in the car on the way home, all of which has improved her general demeanour.

So, we have a break from chemo for a week, due in next Friday for vincristine (IV) and then another 6 days,when she starts this 4-week cycle again IF her bloods are ok. If they are not, she will not start the next cycle until they are.

Wednesday, April 6, 2005 3:04 PM CDT

Rachel is in really great form at the moment, probably thanks to the new blood she received last week. Which is a good point to give you the ‘Please Give Blood’ plug: Rachel has now received almost 4 pints of blood since she was diagnosed, basically keeping her alive and allowing her to try to fight this disease. She has also received several bags of platelets, which is a blood product. Without platelets the blood doesn’t clot, so she couldn’t have the treatment without it. She’ll be having a lot more transfusions of both over the coming months.

She also went back to her pre-school this week, which is just wonderful. The McMillan nurse went to the pre-school and briefed the staff on do’s and don’ts. They in turn sent out a letter to all the parents telling them that one of the children was undergoing treatment for cancer, and requesting that they inform the school immediately if there has been any contact with measles/chicken pox/shingles. This way, along with vigilance regarding colds etc, the pre-school effectively becomes a controlled environment, allowing Rachel to attend. The McMillan nurse tells me that the rule of thumb is ‘spitting distance for 20 mins’ to be at risk. This same procedure will happen with Gaddesby School in September, assuming Rachel is well enough to start then. However, we realize that her treatment gets heavier from here, and that she is likely to be more unwell as the summer progresses. The way I understand it, side effects from chemo are cumulative. She hasn’t lost her hair yet, but it is getting thin now, and I think in 3 weeks or so it will probably have gone. I hope her ‘moon’ face will have gone by then, too! I am still surprised every time I look at Rachel, she looks so different at the moment.

We are due into hospital again on Friday, for Peg Asparaginase and Vincristine, intra-muscular and intravenous chemo respectively. The first can cause anaphylactic shock, so we have to stay in for 1 hour afterwards (she’s had 2 PegA so far, without incident). Then, Rachel has a break from chemo for 1 week, when she will start the next phase assuming her bloods levels are ok. Because she is so well at the moment, with the 1 week break in treatment we are hoping we might get away for a few days, so we shall wait to see how she is on Saturday, and take it from there. Fingers crossed.

An ongoing thank you for the cards and letters etc, and the GUEST BOOK! you are all amazing, it’s wonderful to have your encouragement with us.

Thursday, March 31, 2005 1:44 PM CST

Rachel had her little op today, no problems there. However, her bloods from tuesday were lost somewhere between the community nurse/Glenfield/LRI( can you believe it) so they had to take some more this morning when we got into hospital.Turned out her haemoglobin level was 6.7 which meant she had to have a blood transfusion today, 1 1/2 bags, however much that is...?! Which probably means she will be bursting with energy tomorrow - don't know whether to be pleased or apprehensive!!

website for her treatment protocol : http://rum.ctsu.ox.ac.uk/projects/ukall2003/regimenc.xls
We are currently on the consolidation phase, week 7. It will probably be double dutch, but the more you look at it, the more you start to understand what it is saying.

Finally, we are astounded at your response to the website - we only set it up on Tuesday! THANK YOU SO MUCH, you have no idea how strengthening it was to come home from hospital tonight to see all your messages XXXXXXXX thank you....

Wednesday, March 30, 2005 2:33 PM CST

Tomorrow, Rachel is in hospital for some treatment - intra-thecal methotrexate. Intrathecal means via lumbar puncture into the cerebrospinal fluid (csf), for which she has a general anaesthetic. She has had one per week since diagnosis. Leukaemia can effect the brain, and at diagnosis the csf is tested to ensure check whether the leukaemia has already crossed the blood-brain barrier. Rachel was clear at diagnosis, so she now has preventative chemotherapy (methotrexate) into the csf. Common side effects of methotrexate:
sore mouth/taste change/diarrhoea/tiredness/weakness/skin changes (darkening)/kidney damage/inflamation of the cornea
less common side effects:
nausea/blurred vision/hair loss/liver/function/allergic/reations (various)/changes to lung tissue
ahh these drugs are just vicious, but hopefully they are being particularly vicious to the naughty little leukaemic cells.
She had bloods done yesterday, haven't had a phone call today so that means that she won't need any transfusion ahead of the ga (general anaesthetic). As her treatment intensifies, it will be more likely that she will need platelet and/or blood transfusions before they can do any ga's. On Friday, she starts 4 consecutive days of cytarabine, administered intravenously by the community nurse at home. Cytarabine - andother chemo drug, side effects as follows:
nausea/diarrhoea/loss of appetite/inflammation of lining of eyelids/increased uric acid production/sore mouth/taste change/hair loss/liver function/weakness/loss of balance/sore hands and feet/skin changes/lung tissue changes/general aching and lethargy/. She is also taking mercaptopurine each day, given at home in liquid form. Side effects as above. She now also takes anti nausea medication twice per day, that is since moving onto regimen C,and has preventative antibiotics 2 days per week.

OK so you get the picture - all of these drugs are likely to make Rachel pretty unwell and give her a severe sense of humour failure. But she is generally in good spirits, and her hair is thinning but hasn't noticeably gone yet. Won't be too long, though.
Today she had a great afternoon with Auntie Nicola and Hattie, Max and Tilly - and of course Isla - today, with surprise appearances by Granny and Poppa, Becky,Jamie and Jo, all of which just made her day!

Tuesday, March 29, 2005 3:47 PM CST

I can't convey to you just what Rachel has been through during the induction phase. She put on 30% of her body weight in 4 weeks, sore hands/feet/back, kept toppling over, depressed, introverted, angry, ravenously hungry every minute of the day. Bruises on both hands and feet from constant stabbing for blood/IV therapy/anaesthetic. Headaches.

Now that she is out of the induction stage, and off the steroids, her weight is coming back down and her appetite has gone. Actually, it has gone totally and she is now on anti-nausea medication so I fear she will go totally the other way. (Apparently one of the drugs makes the soft mucus tissues bleed, so eating becomes very painful and a nasal feeding tube may be neccessary). But she is in better spirits, we have a huge pushchair from the hospital now, which has made things a lot easier. We're at hospital 2-3 times per week, and the community nurses are doing some of the chemotherapy at home.
She now has a Hickman line in, which is a tube coming out of her chest with 2 lumen, for IV therapy, anaesthetising and bloods. She only had it in last Wednesday and isn't phased by it, although it is still hurting her a little bit.

Tuesday, March 29, 2005 3:18 PM CST

I am now playing catch-up for you, with Rachel's situation since her diagnosis. This won't be the most sophisticated web-site you have ever seen but we'll do our best for now. (ie this bit should be in a different section but I don't know how to do it ...!!)

Treatment
*2 years for girls, 3 years for boys.
*3 paths: A, B or C, depending on your clinical prognosis, A being least drugs and C being heaviest.
(Since side effects are basically the worst things about the treatment, the idea is to try to give those patients with a good prognosis less treatment thus minimising the misery during treatment. The idea is that the outcome should be the same eg if you are cured on A, you would have been cured on C but you'll have had a better existence)
*3 stages of treatment: Induction, Consolidation and Maintenance.

Rachel's clinical profile ( age, sex, white blood cell count on diagnosis) gave her a very favourable prognosis. Overall cure rate for ALL runs at around 75-80%, cure being full remission after 2 years, no relapse after 5 years. (I think). Rachel's clinical prognosis put her firmly in the good risk group, hence she was put on A. Great news.

After the induction phase, which is basically a heavy blast of chemo, steroids etc, the target is to be <5% leukaemic blasts in the bone marrow. Rachel, having been somewhere around 98% blasts in her BM on diagnosis, managed to get sub-5% at Day 28. Really great news, staying on Regimen A for now.

25-30% children relapse after apparently being in full remission. Trying to find out why this happens, they now test for Minimal Residual Disease, which is basically using genetic testing techniques to detect latent signs of leukaemia which are invisible under the microscope. Simplistically, it is generally accepted that a high level of MRD is a powerful indicator of future relapse. They are not sure how to treat it, but the current trial is testing whether increasing the Regimen has an effect on the outcome.

On Monday of last week, Rachel's MRD results came back, and it was bad news. She is 'high MRD' and has now been randomised onto Regimen C. As you can imagine, we have been devastated by this. Having come to terms with her diagnosis, we were blindly optimistic that all would be well: she had good clinical prognosis, she is a determined little girl and we hadn't allowed ourselves to consider that the outcome would be anything other than favourable.

Anyway, we are extremely relieved she has been randomised onto Regimen C, even though it means more chemo, more side effects, more hospitalisation, more prone to infections etc etc etc etc. Had she been randomised onto A, we would have been beside ourselves with worry that she wasn't receiving enough, because logically it makes sense that heavier chemo is more likely to address the MRD problem. But if the docs don't know the answer to that, how can we know? ( I'll try to figure out how to organise this site a bit better and get fuller explanations of randomisation/treatment paths etc).

Tuesday, March 29, 2005 2:44 PM CST

Paul and I are writing this to keep our friends and family informed about our gorgeous little daughter. We aim to keep it updated regularly, but it will be on an ad hoc basis, so don’t panic if nothing has been written for a few weeks.

On Monday February 7th, 2005 Rachel was admitted to Leicester Royal Infirmary with suspected Leukaemia. Gradually, over the next few days, we realised that it was a probability rather than a possibility. The diagnosis of Acute Lymphoblastic Leukaemia was delivered to us on Thursday evening, February 10th, and she started treatment on Friday, February 11th, 6 days before her 4th birthday.

Symptoms

For several weeks beforehand, Rachel had become increasing pale, rather tearful and just generally ‘not coping’ with daily life in her normal cheerful, resilient way. She had complained of aching feet, and wanted to be carried if she had to walk more than a few metres. (Unknown to me then, sore feet/legs/limbs is a classic symptom of leukaemia). The other thing that kept popping into my mind was that she had three bruises, one on her forearm, one on her forehead and one on the inside of her knee. All 3 were small in size (no bigger than a 1p coin at most), round in shape, but they had stayed blue for several weeks despite a few days on arnica tablets. This was really playing on my mind: I knew she looked anaemic, I knew the bruises hadn’t behaved as they should, and hence I knew it was probably something blood-related. I considered what was the worst it could be, and I knew the answer to that question, but I didn’t really believe it. Couldn’t even say it to myself.

Diagnosis

Monday
I went to the GP, determined not to be fobbed off, because I knew Rachel was really struggling even if her symptoms appeared rather unspecific. The GP, Dr Slevin (Latham House Medical Centre, Melton Mowbray) was unbelievable. He took one look at her and immediately told me she was ‘extremely anaemic.’ I explained the other symptoms, he had a look at, and a listen to, Rachel and immediately picked up the phone to prepare to have her admitted to LRI . He was very clear in what he said to me: ‘extremely anaemic, heart is racing, there is something else going on there, we need to get her checked out.’ Some GPs never see cases of childhood leukaemia in their entire careers, he was so astute and pro-active, we are so grateful to him.

When he sent us out of the room, I knew what my fears were, but I couldn’t articulate it to myself, or to Paul when I called him from the surgery to say that we were on our way directly to the hospital. That 45 minute car journey from the surgery to the hospital was agony. I both wanted to race there as quickly as possible, because I was so scared for Rachel, but also I wanted to drive as slowly as possible because – well, I wondered if my two daughters would both be in the car with me together ever again. It may sound dramatic, but I knew Rachel was probably seriously ill. So, with Isla and Rachel in the back seats, I drove slowly with tears streaming down my face the whole way there.

Paul was waiting for us when we arrived on the 4th floor and said ‘they’re expecting you!’ which made my heart sink even further, if that were possible. At this point, Paul had no idea at all what they suspected. I hadn’t shared my fears with him, mainly because mothers always fear the worst for their children and part of the duty of a father is to tell the panicking mothers that they are over-reacting! So, when Paul was handed a semi-completed form by the nurse, for him to fill in the missing personal details, the words ‘suspected leukaemia’ hit him like a thunderbolt.

The blood tests were carried out, and we would have to wait several hours for the results. Her symptoms did not seem to be specific enough for anyone to give a view on possibly confirming the suspected diagnosis. However, she had a loud heart murmur, which 3 doctors agreed was a hole in the heart. And maybe leukaemia.

Tuesday
The following day, we saw the oncologist for the first time. He confirmed that blasts had been found in her blood, and that her symptoms were fairly classic for acute lymphoblastic leukaemia. Whilst her couldn’t confirm conclusively without examining her bone marrow, he was fairly certain in his view. So, we were moved to the children’s oncology ward that day, and she was given 2 blood transfusions immediately (Rachel’s haemoglobin count was 4 – v v low).

Wednesday
Heart Scan
We went to Glenfield (cardiac) Hospital on the Wednesday. Rachel, with her new blood, was back with a vengeance! She put on her new fairy wings and fairy skirt (thank you Julie!) and skipped down the corridors waving her wand and flapping her arms, granting wishes to all passers by! It was utterly heart-wrenching, and both Paul and I struggled to keep the tears at bay. But – good news: her heart was structurally sound, and the cardiologist confirmed what the oncologist had intimated: the extra blood being produced (to compensate for the diseased blood) was causing the heart to work extremely hard to pump all this stuff around, and the ‘innocent murmer’ had become a roar. She will have to go back in a year to have it checked out again, but the cardiologist confirmed that it is not unusual for young children to have innocent murmers, and they typically just grow out of it.

Thursday
The theatre lists are typically on a Tuesday and Thursday for the children in Ward 27. After 2 blood transfusions and 2 platelet transfusions, Rachel was fit enough to have a general anaesthetic for her bone marrow aspirate, where they take a sample of the bone marrow to enable diagnosis. And so, later that day, Dr Leonard delivered the bad? good? news that Rachels had Acute Lymphoblastic Leukaemia. Bad for obvious reasons, good, because, of the 4 main types of leukaemia, ALL is the one you really want to have. And good because if your child is going to have any childhood cancer, ALL is as good a prognosis as you’ll get.
So – we were very relieved and happy to receive that diagnosis. Weird concept, to be happy to have you child diagnosed with leukaemia, but unfortunately our reality is now very different from most of you who will be reading this.

Friday
Dr Leonard was keen to start Rachel’s treatment as quickly as possible, rather than wait until the following Tuesday for the normal list at Ward 27. We got a slot in the main theatre, and she started her treatment proper, having already had preparatory treatment (kidney medication, fluids, blood and platelets) for the previous few days.

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