rachel smith's journal

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:
- 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.Excitement
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

Hello 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 29 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. click to see full journal

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