Vicki's Story - Dad's Leukaemia Diary

Is it really that long since my last update?

2012-01-08T21:27:00.002Z

OK, firstly apologies to all those interested in Vicki's progress, it's been over 6 months since my last post, but it many ways that's good news as it means that nothing untoward has happened and that things are progressing nicely doesn't it?

Yes that's exactly what it means. Vicki's hospital visits are down to every other month, and no more blood letting, hurrah! This was starting to get a real bind so it's great to have that behind us.

Christmas has come and gone (sighs) and we're in the Queen's Diamond Jubilee and Olympic year. Vicki is in her 2nd year at Catering college and her progress is excellent. She just needs to square the circle by finding some gainful employment so if anyone out there needs a young enthusiastic chef please let me know! Once she's working I know that she'll probably want to start learning to drive so with this real independance will ensure. Wow, who'd thought that a few years back?

Finally life is starting to geel normal, what ever that is! :-)

Time flies by, life goes on

2011-07-23T17:16:00.003+01:00

OK, so it's been some time since my last post. Much has happened. The most significant issue was a set of blood tests that yielded some strange results. Initially I didn't know what to make of the results. The hospital were sufficiently worried to call Vicki back for further checks and more tests. Naturally I went into panic mode "Oh my God, here we go again" was the general theme of the moment. To make matters worse, just as I got this news, Vicki had left for a weeks holiday, so she wouldn't be able to attend hospital for another 10 days. 10 days of agony and worrying. However as it happened, these tests turned out to be a false alarm. Vicki's consultant said that the test results turned out to have no clinical value as subsequent tests had been in line with their original expectations. Phew. Still, for a short time it brought back all the feelings and emotions that I went through when Vicki was taken ill. Glad that episode is over.

This scare aside, Vicki's finished her first year at Catering College, holidayed in Turkey and Clacton, acquired a pet snake and is now relaxing enjoying the summer holiday doing what teenagers do best... nothing much! I have set her a task of cleaning up and tidying her room, which seems to be taking an inordinate amount of time. Ah well, you are only young once!

The NHS dilemma

2011-03-13T17:55:00.007Z

For the past few years the previous government and the new coalition have talked about the patient being at the centre of the their current NHS ethos and 'choice' being pivotal in moving the service forward. I have three separate first hand experiences with Vicki that illustrate the great challenges that remain ahead.

Story one involves Vicki having some vaccinations. Regular readers of my blog will recall that whilst Vicki is still under the overarching care of her consultant at Leicester Royal, her actual care is taking place at Northampton. The consultant at Leicester wrote to the Northampton consultant asking him to arrange a series of vaccinations for Vicki as her immune system starts to return to normal. The Northampton consultant then writes to our GP to ask them to arrange this. This should be straightforward except that we had changed GPs earlier, so our old GP had written to us in this matter. No problem I thought, I'll simply give a copy of the original letter to our new GP and they would make the necessary arrangements. The nurse at our local surgery asked us for clarification, but I could only say that I had the same information that she had! She said that she needed to know exactly what was needed and that letter from the Leicester consultant wasn't explicit enough. OK, fair enough, but I'm not a medical person so the only course of action that I could see was for the nurse to contact Leicester (the author of the original letter) and seek clarification there. This she did, and here's the first shock; she was told that Vicki was no longer their patient, so they couldn't help. Whilst this is only partially true, isn't it irrelevant as the letter originated from Leicester in the first place? Not to be foxed by this, the nurse then contacted the Northampton consultant who sent her a copy of the same letter that she already had. Now this is where it gets bizarre. Armed with no more information that I'd already presented the nurse with originally, she was now happy to proceed. What a waste of everybody's time that was. Can anyone else see how ridiculous this was?

Story two leads on from this incident. While we we eventually getting Vicki's first batch of vaccinations, I enquired about the HPV vaccination. Vicki had been due to receive this in Year 11, but had been in hospital at the time so missed out. We were advised that we'd need to contact the Young People's Nursing Service to arrange this and they gave me the number to arrange this. So I called them, explained the scenario, and they confirmed that Vicki was eligible and that we should come to their drop in service which is exactly for this kind of thing. I arranged a date for this and was told that the service would be alerted to our visit. When we arrived, some two weeks later, we discovered that they weren't expecting us. No matter, we'd just need to fill some forms in. Then a nurse came down to talk to us, she started telling us that Vicki WASN'T eligible. She asked me who I'd spoken to, which of course I couldn't remember at this point. I asked the nurse how was Vicki supposed to get the HPV and receive the protection that it offered if she wasn't eligible. She just shrugged her shoulders. Very helpful. I pointed out to the nurse that she'd missed the school run of this vaccination due to serious illness and that if she wasn't eligible now and couldn't get the HPV elsewhere, who should I sue should Vicki contract cervical cancer in later life because she'd missed the vaccination. The nurse disappeared for a few minutes muttering to herself and then called Vicki in to receive the vaccination. Whilst I was happy that she was now receiving the vaccine, why the hell did they make a fuss and tell us that she wasn't eligible? Again, am I the only one that thinks that this is mad?

The third and final story is from the local hospital. They left a message on my answerphone the day before Vicki had an appointment and asked me to contact them, By the time I got in from work it was nearly 8 in the evening, so I rang the hospital straight away. They explained that they were very busy and could they postpone Vicki's appointment. To say that I wasn't happy with this was a bit of an understatement; I'd already booked the time off work and had no more leave to take, so I explained this, but they still wanted to cancel the appointment. I said that it wasn't practical to cancel the appointment at this short notice so reluctantly they agreed that Vicki could still come in for her appointment as scheduled, but warned me that we may have to wait a long time due to their workload. I was fine with this. I've spend what feels like half my life waiting around various NHS establishments for numerous reasons so a little extra time wasn't going to make much difference! Now here's the thing. We arrived on time, and were seen and out of the hospital in 2 hours, which is less than normal! So why did they make all this fuss? Damned if I know. For the third time of asking, anyone else think this is mad?

All this happened to one patient in the span of about a month. Either Vicki is very unlucky or there are patient-centric issues that the NHS still needs to address. I'll let you make up your own minds, but none of this made me feel that the patient comes first!

Time flies, normality slowly returns

2011-02-13T15:30:00.004Z

We're now 12 months post treatment, and Vicki continues to attend hospital at monthly intervals for reviews and on-going treatment. She's also embarked upon a series of inoculations to help get her immune system back to full strength so it seems at the moment that we're always at one NHS site or another. Fortunately it's never for anything like the ordeal that she used to endure.

At her last visit to her consultant, he said whilst she will continue to require venesections once a month to reduce the excess iron in her blood, she is, to all intents and purposes, a normal healthy teenager. This is of course marvellous to hear, but as ever, I'm mindful of the fact that we're not out of the woods yet. Another 4 years of checks before we get the all clear, and of course the spectre of the disease returning looms distantly on the horizon. It's quite hard not to panic every time she coughs, or is overly tired, but as time goes by, this slowly subsides.

She's continues to attend college on a catering course and her progress here is good. She's even been talking about working abroad at some stage in the future. Future, did you hear that, she said future. Good to know she has one, 18 months ago, that didn't seem possible.

OMG is it really December?

2010-12-01T19:56:00.003Z

I've just noticed that it's been a while since I've blogged anything. In the time since my last entry, Vicki has started college, and a part time job. Who would've thought it 12 months ago? As the Christmas season approaches I find it hard not to recall the last Christmas which was, to be frank, hell. The experience of 12 months ago rather took the shine off of the festivities and sadly I can't see this time of year with the childlike excitement that I once did. Even though Vicki is so much better now, Christmas, and everything associated with it just takes me straight back to an altogether darker time in my life. Don't get me wrong, I am looking forward to the big day, but perhaps not in the same terms as most of you reading this blog. Last year made me realise how false the whole Christmas thing is, and that's damage that I think will take an awful long time to repair. Last year it was hard with everyone full of seasonal joy while all I wanted to do was cry. Anyone that deviates from the happiness is seen as an Ebenezer, which just served to make me even more miserable last year. This year I've declared my desk at work at Christmas Free Zone, but I'm sure my colleagues will try to permeate my frosty Scrooge-like persona!

The results are in!

2010-08-28T11:07:00.003+01:00

Missing nearly all of Year 11 is not exactly ideal preparation for your GCSEs so it would have been reasonable to expect a meagre return from the 2010 exam season. Far from it, Vicki passed everyone! Well done, I am so, so proud of you. Needing 4 GCSE's E grades to get onto the catering course that Vicki had picked was the target. I am thrilled to tell you that she far exceeded that. With a B in Maths, and a C in General Studies among the highlights, Vicki got double the 112 points needed to gain a place at College.

This is a major milestone, not least because it means she won't have to redo Year 11, and also because it means that she won't have to compromise and do a 'lesser' course. Given the last 12 months, this is a major achievement, and heralds the dawn of a new era for my little princess who will be starting college in just over a weeks time. Yet another event that I thought I may never see. What a summer, who cares about the weather!

I never thought this day would come

2010-08-22T18:22:00.002+01:00

I haven't posted for a while, largely because life has been trotting along as normal, well as normal as it will ever be now. Vicki continues her monthly appointments and all is progressing nicely.

Today is Vicki's 16th birthday. There were some dark times over the last year when I didn't think that she would make it. But make it she has, and fingers crossed the future has many good things contained within it. Next week see the GCSE results published, and this will determine her path at college in September. Having missed almost the whole of Year 11, any results next week will be a great personal achievement. This should start a whole chain of events that will take her on some exciting adventures.

Today will be savoured; 16 is a special birthday, but for us, its so much more than that.

Happy birthday Vicki, I hope you have many, many more ahead of you.

They made us wait but finally it's happened!

2010-06-03T10:46:00.003+01:00

Despite the fact that Vicki's treatment finished in February, it has taken until last Friday for Vicki's Hickman line to be removed. I cannot stress how big a deal this is; it's a significant milestone in her recovery and will now allow her to have a near normal life again.

Vicki continues to progress well, and is gaining in strength all the time. She still needs regular venesections to reduce the iron levels in her blood, but the levels are coming down well. Her immune system is gaining in strength too, and whilst we're some way off normal levels, the improvement is significant.

Vicki's in the middle of her GCSEs at the moment, a stage in her life I thought we might not reach 8 months ago. I can't get my head round the turn around in her life sometimes. It's quite miraculous that she's able to aim for 7 GCSEs at all, so well done her for not letting her education slip too much.

One milestone reached, another looms large on the horizon

2010-05-15T13:10:00.005+01:00

Vicki had an appointment with the Genetics Nurse yesterday to discuss the implications of the Robertsonian Balanced Translocation that she carries. As my own research had already concluded, there are no implication for Vicki's own health, but for any children that she may have later. As with any other 15 year old, this isn't something that she's overly concerned with now, so we'll revisit this when the time come.

Far more pressing and immediate now is Vicki's GCSE exams which start on Monday. Over the next 5 weeks her short term educational future will lie in her own hands. The target is simply 4 GCSEs to get to college, and as she's taking 7 the percentages are looking good. To think that she's able to achieve any GCSEs is pretty amazing considering that she's spend about 2.5 weeks at school this year. So I take my hat off to her determination and resolve. I know she'll do well, I can feel it in my bones, and from I know of her, whatever the outcome, she'll succeed at whatever she chooses to put her mind to.

Good luck Vicki, I'm sure you will get all 7.

Study, study and more study

2010-05-03T22:12:00.004+01:00

Vicki continues to get stronger, and back to her old self. Last week she had her 2nd venesection, and this treatment will continue until her iron levels return to normal, though this could take 18 - 24 months. We're still waiting for her Hickman line to be removed, which we'd hoped to have done by now, but c'est la vie. The week after next we have an appointment with the geneticist so hopefully we'll know more about that side of things.

In the meantime she's got her nose to the grindstone for her GCSEs which take place in in June.

Normality returns, whatever that is!

2010-04-17T11:05:00.004+01:00

This is the biggest break I've had between blog posts. Since my last post, we've started to do some of the normal things that everyone takes for granted. Easter was spent visiting family in Bath. My birthday weekend followed and we spent the day at Woburn Safari Park. I've also returned to work, phasing my return over the coming weeks.

It's hard to realise how much you miss and crave the strict formalities of life until you have to do them after a period of abstinence. Basic things like getting into a routine of getting up, going to work, surviving the trials and tribulations of the working world, returning home to discuss the ludicrousness of it all over dinner, settling down to an evening's banal televisual output, then retiring to bed only to start all over again the following morning is something that had been so lost from my life that I'd forgotten what it is like. I'd forgotten what it feels like to have office banter, in-jokes, put-downs, nick-names and the like. I'd forgotten what it feels like to belong. But more importantly, I'd forgotten how good all this feels.

This week, now my 2nd back to work after a 6 month absence, I've experienced another one of those Stephen Covey Paradigm Shifts. Where once I would return home tired, frustrated, fed up, angry, and desperate for change, I can now see how reassuring all those things really are. I missed 6 months at work, but missed nothing at all. Like an old pair of shoes, thrown to the back of the cupboard, then rediscovered, I found I fitted in like a hand in a glove (or perhaps a foot in a shoe!).

So enough of me, how's Vicki? She continues to make good progress. We're still awaiting a date for the removal of her Hickman line, but she is quite well, and is slowly starting to work her strength back up. Removed from the burden of visits to Leicester we're both much more at ease with the world. We're also still awaiting news from the genetic specialist, but I've been researching this myself, and I'll probably blog some info on this once I've learned a little more.

Talking of returning to normality, it's not escaped my attention that there is a General Election looming. I would ask you all to question any politician that visits you over the next few weeks about their policies on health, and examine them closely.

Bye bye Leicester

2010-03-31T18:23:00.004+01:00

Today is a significant milestone in Vicki's treatment. At long last we've been transferred to the care of our local hospital. You cannot imagine how wonderful that feels. Driving to Leicester was a real drag, especially for the shorter appointments, and after all is said and done, it's a pretty alien world. No offence to the good folk of Leicester, but Leicester holds lots of emotional daemons and some pretty unpleasant memories. If I never saw Leicester again it would be too soon, but I'm sure we'll have to revisit it at some point.

Vicki continues to do well, and today had the first of her 'after' treatments. We're awaiting news of the removal of her Hickman line which should come some hopefully. This will be the next significant milestone. Vicki is quite restricted by this, and of course it presents an constant infection risk.

A mixed bag

2010-03-24T14:43:00.004Z

The news from Leicester was largely good. Vicki is in remission, her blood is clear of Leukaemia. It's important to stress that she's not cured, yet. However Dr Madi said that the chances of a cure are very good. Personally I am a percentage man, but he wouldn't be drawn into figures. OK, I'll accept very good.

A minor niggle that has come out of this is that as a result of volume of blood transfusions that Vicki received, she now has too much iron in her blood. Essentially the way to deal with this is take blood from her. Over the next 6 months, about once a month she'll need about 250ml of blood removed, then the excess iron in her body will be used up making fresh blood. I guess that's what you call payback time. Ah well, easy come, easy go!

Part of the detailed tests that have been done on Vicki include a detailed DNA test. This has revealed that unrelated to the Leukaemia she has a Gene Translocation. I'll spare you the technical explanation (you all have Google) but it means that Vicki, along with her brother, me and her mum, will have to go to see a genetics specialist to discuss what this means in practical terms. To be frank, I've no idea, but we'll cross that bridge when we come to it. The irony of course is that without the Leukaemia we would be none the wiser about this, and living in blissful ignorance, so we're parking this issue as we've no idea what it really means. There is a high possibility that it means nothing, so we'll try not to dwell on this.

Vicki will also have to have a heart scan. This is because the Chemotherapy can affect the heart muscle. She'll also have to go back once a month for a year for regular check ups.

I will of course keep the blog up to date once tests, diagnostics, or any other significant events occur, so as ever, please keep reading.

The day approaches

2010-03-23T10:15:00.002Z

Soon all the waiting will be over. Tomorrow Vicki and I have a date with fate. Fingers crossed we'll get the news we've been craving and we'll find out what's in store next.

As far as Vicki is concerned, she is quite well, and remains quite upbeat. We've spent loads of time catching up on all the school work that she's missed out on. She's still on track for 7 GSCE's which is brilliant considering how much school that she's missed. She has her sights set on her college course and what she needs to achieve to get her place and she's already 25% of the way there. You go girl.

I'll post updates on here as soon as we're back from Leicester.

Late breaking news

2010-03-17T22:06:00.004Z

Vicki and I are back at home. 48 hours of fluids got her back on the straight and narrow, and she's feeling much better in herself. I'd forgotten how ghastly it can be as an in-patient. Vicki was placed on the open ward and unfortunately there was a young patient in at the same time who was quite distressed and her treatment meant that she was often woken during the night, upon which point she'd scream the place down and of course wake everybody else up.

Now I'm not criticising the poor patient or her beleaguered parents, but the ward staff for their handling of this. Knowing that this particular patient acts in this way, they should have moved her to somewhere where the noise can be isolated. By leaving her on the ward she's disturbing all the very ill patients around her. Ample provision exists on the ward to do this, and in fact I've seen over the past 6 months other equally distressed children handled in this way. For some reason on this occasion the well being of the other children seems to have become secondary. It's the accumulation of these type of events which contributes to counter the excellent clinical work carried out at Leicester which seems an awful shame.

Meanwhile back in Leicester for an unplanned visit meant that Vicki and I had no fresh clothes so I had to go shopping to kit us out for the days ahead. Whilst walking back from the city centre I came across 2 chaps and a girl, who were veraciously disagreeing with each other. This became violent, and one of the guys punched the girl in the face. The girl, now somewhat enraged by this random act of senseless violence, picked up a sandwich board and swung it like a cricket bat at the two guys. More fisticuffs followed and then all 3 disappeared as quickly as they had appeared. Right behind where this live episode of Strictly Come Brawling was staged was a local newspaper kiosk, and in front of the kiosk was a billboard will today's lead story on. It read "3 hurt in street fight". Wow, now that's what I call a fast news service, right on the pulse of local events!

It's no joke!

2010-03-16T14:51:00.003Z

Vicki and I have spent the last 2 days back in the delightful world of Ward 27 at Leicester Royal Infirmary. Vicki has been quite poorly since her lumbar puncture and bone marrow aspiration last week. She was nauseous and wasn't eating or drinking, and had developed a bad headache to go along with her lower back pain.

The pain killers that I'd got from the overnight GP service weren't really helping. So Sunday morning, I took her back to our 'home'. We've been there until this afternoon. Many tests were done, many heads were scratched, but as usual no-one tells us anything! Whilst we were waiting to be told nothing, Vicki and I were watching Celebrity Come Dine With Me. One of this weeks celebs was Tom O'Connor. He told a joke that was incredibly apt.

A man rings the hospital and asks "I'm ringing about the man in Ward 8, how is he?" "He's doing really well, he'll be home soon," comes the reply "who is it calling?", the nurse goes on to ask. "Me? I'm the man in Ward 8, nobody tells me anything!"

Sleep, who needs it, it's overrated!

2010-03-12T14:54:00.004Z

Vicki had a bit of a rough night last night. She was in some pain following on from her lumbar puncture and bone marrow yesterday. She couldn't get comfortable, and couldn't get to sleep. None of the painkillers that I had in the house were even touching it. A few phone calls later, I was on the way to the local night-time GP service to get some horse strength pills at about 3:00 this morning!

Fortunately, this did the trick and allowed her to get some sleep, and whilst she's still in pain today, it is easing, so fingers crossed she's through the worst. Hopefully we can both get some sleep tonight!

He waits, that's what he does, tick follows tock follows tick follows tock...

2010-03-11T18:53:00.004Z

Today we reach yet another milestone in Vicki's story. Her end of treatment bone marrow sample and lumbar puncture aspiration. This will tell us whether there are any Leukaemia cells in her blood, and therefore whether the chemotherapy has been successful.

This surgery is done under a general anaesthetic, so Vicki is tired and sore. Not too tired and sore that she couldn't woof down a Nando's this afternoon mind, but too tired and sore to do any school work!

Anyhow, now that's over and done with, the waiting starts. It'll take some time for the results to be known as the sample has to go to Leeds to be analysed. In just under 2 weeks time Vicki has an out-patient appointment where we'll probably find out the result. So the intervening time will pass slow. Real slow. Slower than a slow thing from Slowsville that just decided to take things easy and chillax for bit on a slow and lazy Sunday Summer afternoon with absolutely nothing to do but watch grass grow. Or paint dry. Or... OK, you get the picture. Just like the Guinness advert. But as our Irish black gold making friends used to tell us, good things come to those who wait, so fingers crossed the wait will be worth it. Meanwhile, torture ensues!

On a positive note, Vicki's college interview went well, so she just needs her grades now to pursue her chosen vocation training. Once again, fingers crossed!

A busy week

2010-03-09T18:55:00.003Z

This week has many things planned. The main events from Vicki's point of view are that on Wednesday she has an interview for college and Thursday we have to return to the hospital for what we hope will be her last lumbar puncture and bone marrow samples.

Assuming we get an "all clear" result, the surgeons can plan to remove Vicki's Hickman line. This will be a major event in Vicki's illness as it will remove a major infection risk. Currently the Hickman line stops Vicki being very active for fear of dislodging it, so it will give her a greater degree of freedom too.

We've also had 2 visits to the optician this week, and a visit from the community nurse, so we're starting to re-discover Northamptonshire. I've also been pleasantly surprised that a tank of fuel has lasted over a week for once! First time for six months that I've been able to say that!

Slowly normality returns

2010-03-07T21:41:00.003Z

Friday night bore witness to Vicki's celebratory sleep-over. Much laughter was had, and many secrets were spilled, but discretion being the better part of valour means that I cannot possibly spill the beans. What was said between the four walls of our home stays there. Needless to say, many memories for Vicki, Philippa and Kieren who no doubt will be trading off the stories for some time to come.

Sunday saw my mum come over for Sunday lunch, which Vicki helped me to prepare. In stark contrast to Friday night, I was now quite relaxed about possible spillages on the living room carpet. However this was misplaced as my mum dropped her latte over herself, the settee and, yes you guessed in the carpet. Ah well, no point crying over spilt milk!

Vicki's make over

2010-03-06T15:21:00.010Z

Sometimes you find the best things out of adversity. Today was an example of such a thing. After months of aggressive chemotherapy treatment, Vicki had a make over to make her feel more like a normal teenager again. A fantastic local charity TLC Trust (please give generously)

organised a visit to AJ's Hair & Beauty Salon in Cannon Street Wellingborough where Rosemary organised some pampering.

Vicki had her nails done, a full facial, had her eyebrows done, and her eyelashes too. She then had an amazing transformation from short hair to shoulder length hair. Absolutely brilliant. The timing of this was fabulous as she had 2 friends coming over for a sleepover, yet another sign of normality returning. Seeing her beaming smile shining out after all this attention was such an uplifting joy to behold. I hold my hat off to both TLC and Rosemary's generosity.

TLC are looking to raise their profile and are looking for a celebrity to add some much needed publicity to their cause. If anyone knows of anyone who would like to get involved, please make contact via their web site, or via myself.

To Leicester and back

2010-03-04T22:45:00.003Z

After a long period as an in-patient, yesterday Vicki had her first attendance as an out-patient. This was an altogether different experience. We were in and out of the hospital in less than an hour! We had a consultation with Dr Madi who remains pleased with Vicki's progress. Whilst we're still waiting for Vicki's platelets to return to normal levels, Dr Madi is happy that everything is progressing normally.

However whilst Vicki remains Thrombocytopenic, we're still not sure when she'll have her final Bone Marrow and Lumbar Puncture samples taken. Possibly next week, or the week after. In the mean time, we wait, and continue to try to return to normal.

The first week off the ward

2010-02-26T10:30:00.005Z

Things are starting to settle down now. Just over a week on from Vicki's departure from Ward 27 things are settling down into a pattern. She's seen her close friends, in fact we had a celebration dinner last Saturday and it was lovely to see Vicki enjoying the very simplest of things that most of us take for granted every day. She's pressing on with her school work and we even visited school on Tuesday to pick up some work.

For me personally Wednesday was the highlight of the week, as we finally got to meet Richard Burton, the very kind benefactor whose tireless work to raise money for Leukaemia has enabled him to help us financially. When Vicki was first taken ill, Richard's kind generosity enabled me to get Vicki a laptop which helped her stay in touch with her peer group. Listening to his story of why and how he raises money was moving and heart warming. He is without doubt an unsung hero, who deserves many accolades for the effort he puts into fund raising. Mr Burton, I salute you.

Vicki seems very well in herself. Regular visits from the community nurse check her cell counts. She is due for bone marrow and lumber puncture samples to be taken that will allow her consultant to assess the true value of her treatment. This can't be done until her counts are higher, so although we're delighted to be out of hospital, we're a little bit in no man's land at the moment. Fortunately, after a small dip, her counts are rising, albeit very slowly. Just have to patient, a skill I'm slowly learning!

100 n.o.

2010-02-18T19:32:00.003Z

Today's posting is the 100th blog post. It seems incredible that so much has happened in 100 postings. Today has been a really good day. Vicki's friend Kieren has been round all day and the two of them have been playing Sims 3 most of the time. Kieren also made some pancakes too, and Vicki's been so bright and cheerful. Also, her potassium levels have returned to normal, so that's less drugs to take.

Tomorrow she'll be having a blood test, and this will determine if she's well enough to have her final lumber puncture and bone marrow samples taken. Much will depend on both events, so I will keep the blog up-to-date with progress. So far, so good.

Standing at the gates

2010-02-17T23:46:00.003Z

I never thought today would come. I daren't even dream about what happened today. After 5 months of standing at the gates of hell, today we turned around, closed the gate, and started to look for a way of securing the lock. For those of you who are struggling with today's metaphor and haven't realised, Vicki is home. And when I say home, I don't mean for a short period of leave and respite. I mean for good, as in discharge. No longer an in-patient. No longer a prisoner of the 4th floor of Leicester Royal Infirmary. No longer a soldier of fortune hiding in the Los Angeles underground. Oh no, sorry, hang on, that's the A-Team. What I meant to say was no longer a soldier of fortune being pursued by a army of cancerous leukocytes ruthlessly chasing her down. (You see, the A-Team analogy does work!)

However, despite the euphoria of the occasion, like the A-Team, whilst this time we've won the battle, there are more to come. However, the worst is over. There is one more lumbar puncture and bone marrow sample to be taken. Assuming this is clear, then monthly check-ups. Again assuming these are fine, then a number of years will elapse before we can finally lock the gates, welding the bars, and placing large rocks over the entrance. With Leukaemia though, there are no guarantees, and of course as I mentioned earlier in the year, the treatment itself can be carcinogenic. But for now, let's celebrate the end of phase 1, Operation Remission.

We can almost see the finishing line

2010-02-15T14:47:00.002Z

After a very emotional and tense period, hence the lack of updates on the blog, it seems that we are in touching distance of the end of phase 1 of Vicki's illness. Her 4th and final planned in patient journey is now near the end. As is always the case, we're not being told the actual date that she'll come home, but over the weekend, Dr Madi, the consultant in charge of Paediatric Oncology told us that it will be about another week.

Vicki has started to be weaned off her drugs, and it only seems a matter of time before she's back home where she belongs. As 5 months of hell draws to a close, I'm starting to reflect back on the experience, and I'm sure I'll use the blog to echo my sentiments in the coming week or so. Vicki is quite well in herself, and I had to give her a serious pep talk Sunday because she was letting the world drift over her. She's got so much that she could be doing, and there's so much that she has to be doing, that I couldn't sit and let her fritter her time away, just laying in bed, doing nothing. Especially as she more than well enough to be doing any number of tasks, from watching TV, to playing computer games and of course school work. Being in her GCSE year, it's critical that she at least gets the bare minimum to continue her education in the next academic year.

Yesterday being Valentine's Day, it was no surprise that Andy came up to see her. Not wishing to play gooseberry for 2 hours I made myself scarce! The journey home was full of the usual laughs and jokes, but due to some incredible lateral thought jumps, the laws of copyright and patents prevent me from sharing the details with you. I'm sure once Andy's a household name for producing the thing that I can't discuss, then I'll return to this post and edit it accordingly :)

Education and isolation

2010-02-10T21:50:00.003Z

Vicki continues pretty much as she has. She's still being fed intravenously, and as she's not eating there's no immediate end in sight for this. She is, however, being weaned off the antibiotics. So there is some positive progress. I've also managed to secure her GCSE exam entries, and this is a weight off my mind. If all goes to plan, she should be able to leave school with a healthy compliment of 'O' levels. Yeah, OK, I know they don't call them 'O' levels any more, but that's what they are to me.

I'm quite angry today. For two reasons, one of which I'll leave for tomorrow's entry. Today, I found out that a famous large charity had decided not to make a grant to me to cover some of the big bills that I've had recently. I'm not going to name and shame them, but suffice it to say they advertise on the ticket of making life easier for cancer suffers and the families of cancer sufferers. Another charity have said that they'll decide at their next quarterly meeting. No rush then. So this reality check has made me realise how isolated I am in this whole situation. The charity in question, then went on to say "Is there anything that we can do for you..." I won't share my answer with you as kids read this blog!

My perception before Vicki became ill was that if you had a critically sick child, you would be looked after by all manner of charitable organisations. Whilst I've had some donations from charity, I've raised as much money through my own efforts as any other, which is quite depressing. All the real financial support and assistance that I'd thought would be available is sadly lacking. The charity in question here blamed the credit crunch. Well I'm sorry my daughter has fallen ill at the wrong point in the fiscal cycle. I shall closely examine my charitable contributions in the future. I would urge you to do the same.

The things you learn

2010-02-09T13:12:00.004Z

Vicki feels quite well in herself, all things considered, but is still not really eating normally. We just have to wait until the feeling of sickness subsides and then her appetite will return. The quicker this happens the quicker she'll get off the intravenous feed.

Yesterday Vicki and I spend some 4 hours or so playing Spyro the Dragon. Never thought I'd enjoy such a game as I usually prefer sports simulations, driving, or out and out death and carnage games, but fair dues to Spyro it was quite entertaining. Well, until we got stuck trying to defeat a troll, and then it just got frustrating. Well that's trolls for you.

There's also been a return to visiting, and last night's visitor, Philippa, gave me some real insights into the biological physiology of ducks. I discovered, much to my surprise that ducks have fur, and armpit hair. Now I know scientific understanding can change over the years, so I may be out of date from my school days, but I'm sure ducks have feathers and wings. Maybe I'm wrong. Maybe I've been away from normal life for so long I've missed some important discoveries. Well I'm open to new ideas, so maybe some of you can enlighten me on the latest research in the field of ducks!

Back on the ward again

2010-02-08T22:08:00.004Z

I'm glad to say that Vicki is back on the Children's Oncology Ward after her sojourn to Children's ICU. She's glad to be back, and is doing well. The downside is that it's set her overall recovery back a week. But a week, compared to the rest of her life is no time at all. She's completely lost her appetite however and must face being fed intravenously until she's up to eating normally again. She's also on an endless stream of drugs and saline, so she's pretty much attached to machinery 24 x 7, which is very restrictive. She's been on so much saline I think she's got more salt in her than the Dead Sea, or at least that how it seems! So much so I've decided to rename her NaCl (little joke for the chemists amongst us!)

It's great to have her almost back to normal, not long to go now, I feel we're in touching distance of the finish. Everything is crossed. Very firmly. So much so, it's quite hard to type!

Walls have ears

2010-02-07T14:12:00.003Z

Sometimes the medical staff can forget that they are discussing details about the patient in earshot of them, and their carers. Yesterday, one of the Oncology consultants was discussing whether or not to move Vicki back to the Oncology ward with one of the CICU staff, right outside Vicki's cubicle, with the door open.

This gave us an interesting insight; 24 hours early we were told "You won't stay on CICU any longer than you need to". The overheard conversation suggested that although Vicki was well enough to return to the Oncology ward, the ward sister didn't want her back, as they were too busy. The very same ward sister came down to see Vicki and dismissively said "You don't want to come back just yet, it's much quieter down here." Oh really, and when have you ever tried to sleep in an intensive care ward? On top of that, if she'd actually been thinking about what is best for Vicki, she may have realised that back on the Oncology ward she's got things to do, and can have visitors. On top of that, there are no toilets on the CICU ward (as they expect their patients to be unconscious or of nappy wearing age) so this means having a commode to hand. So not exactly well equipped for a fully conscious teenager.

So although Vicki's getting better, she's really cheesed off at still being in CICU. All very frustrating and so close to the end of her treatment. I was interested to read of the Government's plans to provide 1:1 cancer care if elected. Pity this level of care can't be provided without the bribery required to have it re-elected. From talking to the other parents of the Oncology ward it's clear that children's cancer care is in need of an overhaul. Children, probably more than any other group would be so much better off if they could be treated at home. This is a long way off from where we are now, with Vicki being treated 40 miles from home. I can't see how this gap could be adequately funded, but of course, money aside, the sentiment is positive.

And whilst I'm on my political high horse, what about so called "end of life" care. Palliative medicine is severely underfunded, and Hospices are only about 1/3 funded by the tax payer. I am the only one that thinks relying on charitable donations for 2/3rds of your running costs is scandalous?

Fighting the Infection

2010-02-06T19:20:00.003Z

Vicki remains in Intensive Care, and has finally started to conquer the infection that landed her there. She's been sitting up and chatting, but is very bored, as there is very little to do in a ward which doesn't usually expect its patients to be too aware of their surroundings. It's also very hard to sleep in this ward due to the barrage of machines bleeping at monotonous intervals. Finally today, Vicki came off the dopamine that was helping her hypotension. She seemed to maintain her blood pressure off this drug, so that's something positive. Also she's off the blood products today, so she's not quite so machine dependent today. She does however still have an issue with Potassium and Magnesium deficiencies so she's still being infused with these along with a plethora of antibacterials and anti-fungals. Hopefully she'll soon be back on the Ward to finish her recovery.

Intensive Scare

2010-02-05T10:34:00.002Z

It comes to something when I'm reduced to writing newspaper puns doesn't it? Vicki's taken another downward turn, and last night was admitted to the Children's Intensive Care Unit. Her blood pressure and temperature are going up and down, and are a cause for concern. The medical team are now trying to find out the source of the infection that she has, and why her blood pressure keeps dropping. Needless to say, whilst she's in CICU, she's hooked up to numerous machines to monitor her constantly. Unlike last time, she's conscious, but very tired. That's all I know at the moment, I'll update when I get a chance.

Just when we thought it was safe...

2010-02-04T11:11:00.007Z

Vicki's condition has taken a downward turn. After many weeks of positive improvement, she's acquired an infection, and her temperature is high as a result. Having a severely compromised immune system makes it hard for Vicki's body to deal with in the same way you or I would. As a result, the medical team are closely monitoring her and are administering various antibiotics, anti-fungals, along with paracetamol and intravenous fluids. What isn't helping is that Vicki's cubicle is like a sauna.

Once again, this is where the hospital lets itself down. Whilst on the one hand, the medical team have been brilliant in dealing with this crisis, the facilities team have been less than efficient in coming to rectify the tropical micro climate that they've manufactured in Vicki's room. So desperate is the situation that I had to remove the inner window from the double glazed window to allow some drafts in! But it's a perfect illustration of how the NHS often forgets the very person they are there to help. Someone, somewhere, at some point in the past decided to remove the temperature control from the ward, and place it in the hands of a centrally managed team. This doesn't help patients when it takes many hours to get the temperature to a bearable level. I am finding the heat oppressive and I'm not ill, so God knows how Vicki must be feeling. And of course, whoever made the decision to remove this basic control is probably no longer around to be held to account for their decision. Cold drink anyone, on the rocks?

Back to Bedlam

2010-02-03T13:17:00.004Z

Apologies for the break in updates, things have been going a little mad in the Alex world. A brief summary, first my car was serviced and those nasty people at Renault wanted to remove one upper and one lower limb in exchange for replacing the brakes. Naturally I declined their generous offer and went in search of a better deal, and preferably one that would mean I could keep all 4 of my outer extremities.

As there is no "Compare the Meerkat" web site to compare the prices of garage services I was forced to use that old fashioned combination of Shank's Pony and of all things, a telephone (remember them?). Once this debacle had concluded I'm glad to report that I now have a car that I can safely stop, and that I still have both arms, and both legs. Phew!

The next catastrophe was that my mobile phone decided that it had had enough. The touch screen display, decided to become just a display, rendering the phone of course, pretty useless. Luckily it is still under warranty, but never-the-less it's still a lot of messing about to get it sorted, and a temporary alternative configured. There was also the matter of an important family birthday that needed my undivided attention, so I've not had any time to come on here and blog away. Also the loss of Internet access at the hospital has not helped, as this, along with my lack of a phone have meant I've only been able to access the Internet when I'm at home, so I've had to use the small window of time I have to sort out the more practical things in my life, so time for updates have been few and far between.

Still, forget all this nonsense, I hear you all saying, how is Vicki? Well, she's OK. Her 4th, and hopefully final chemotherapy session has now ended, and we're in the side effects time frame. Her blood counts are low, and her appetite remains suppressed, but otherwise she's not too bad. As ever, she's bored. Now she's through her eye drops ordeal, she's restarted her studies, with the in-house hospital schooling returning. Now is the time she's starting to focus on the next academic year.

As ever, her friends visiting are the highlight of the days. Last night Kieren came and played a football game on the PlayStation 3 with Vicki. Yes, I did a double take too when it happened, but this wasn't some kind of bizarre cheese induced dream, it really happened. My favourite moment was Kieren who having chosen to play as France questioned "why aren't they wearing berets? their costumes should have berets!" Enough said!

Don't tar all teenagers with the same brush

2010-01-24T14:21:00.005Z

Generally, the press give teenagers a hard time. Generally I give teenagers a hard time. From close quarters, I can see that many of them are self centred neurotic individuals, who can't see further than their own egotistical boundaries. But they are not all like that. Vicki's boyfriend Andy and best friend Philippa always restore my faith in the youth of today. Far from the typical chav-like picture of the world painted by most of the media, these two are very wide of that mark.

Whenever they visit Vicki they light up her world. Whenever they visit together, we have an absolute riot. Yesterday was a perfect example of this. To illustrate this point, I want you to imagine the game Shopping Cart Hero. For those that don't know, or can't be bothered to Google it, it's a simple game where you push a shopping cart along, with 'groupies' in the trolley, and you perform tricks to gain points and kudos. Last night, a real-world recreation of this event took place. Andy was pushing the cart, and Philippa was the groupie. We videoed the event for posterity, and as soon as Andy gets his finger out and mails me the 'trolley-cam' shots, I'll be posting it up to YouTube for your general amusement. We think it will become viral of the week out there in Cyberspace.

The journey home was full of laughter. For reasons I'm none to sure of, most of the journey took place with all of us using differing accents, most of which none of us could quite claim to be accurate representations of any part of the world other than in our deranged imaginations. A recurring theme was "Accrington Stanley? Who are they?". "Exactly". Andy's attempts at Scottish always ended up as Welsh. My Russian was Caribbean. Somewhere in the middle Philippa was Hannah Montana. Strange this, as she was trying to sound like she was from Manhattan!

We also came up with loads of pitches for TV shows, so look out Simon Cowell, Ducks on Ice is coming! We were also treated to renditions of various songs in the style of cats, courtesy of the mew-sical talents of Philippa. Imagine if you can, the Star Wars Death March theme, or even Lady Gaga's Poker face being comprised of meows. Perhaps she should have sung "Ground control to ginger tom..." or perhaps something by the Pussy Cat Dolls... who knows.

I so look forward to the next journey with these jokers in my car. They should be on the stage you know, sweeping up!

Encore une fois

2010-01-23T23:04:00.002Z

You may think that lightening doesn't strike twice. You may think that the staff of Ward 27 were actually reading my blog from yesterday and thought, hell yeah, that's how it is. Today, we see exactly the same type of not-really-putting-the-patient-at-the-centre-of-our-thoughts kind of day as we did yesterday.

All our young cancer patient wanted to do today was to go shopping, and who can blame her. She wanted to raid HMV with the remains of her Christmas money, thus ending the recession in one simple act of retail therapy. We made a point of indicating this to the relevant staff late morning. The relevant staff agreed, and a plan was put in force to allow this credit crunch busting, music share increasing event to take place.

However the reality was that Vicki wasn't free from Bob the Drip Stand until just after 4pm. Now allowing Vicki time to then get washed and changed, then spend a little time staring into space as teenagers often do when time is pressed, for us to wait for, and get into one of those strange long multi-seated vehicles that I'm led to believe are called buses, and then for the said passenger conveyance to deliver us safely to the central shopping emporia of Leicester would in all actuality leave her no time to shop!

Not only that, but we discover that her current chemotherapy is 5 days in duration, not 3 as once thought. I get the distinct impression that they're making it up as they go along! Still, all was not lost, as the arrival of Andy and Philippa added some much needed amusement to the day. Full part of this story to follow tomorrow.

So today was the end of Vicki's chemotherapy. Or at least the end of her planned chemotherapy. Hopefully, that will be that, but now of course, the side effect phase, and another 5 days of relentless 2 hourly eye drops. Oh joy!

Keeping your eye on the ball

2010-01-22T13:55:00.005Z

Sometimes I'm still shocked by how the NHS operates, and often misses the important point, that being to consider the patient. We hear a lot in the press about the NHS having to revolve around the patient. Don't see much evidence of it myself. On Monday Vicki had to go to into hospital, for what it turned out, was a review meeting. So a return journey to Leicester. If this had been scheduled for the following day when her chemotherapy started then it would have saved a lot of hassle and expense. During this appointment the Doctor says "oh we could have had this appointment on Tuesday". Really? You don't say. I wouldn't mind, but this isn't the first time this has happened.

Yesterday, when the doctor was doing his rounds, he told us that Vicki's haemoglobin was down and that she would need a blood transfusion. This was around 9:30. Vicki had just started her 4 hour chemotherapy session, so we figured the blood transfusion would take place after lunch. When the infernal machine started bleeping at about 12:30, the nurse says that she'll flush Vicki off, then take some blood to cross match, then get the blood for the transfusion ordered. Fair enough.

She said that she just had a phone call to make and then she'd be back. By the time I left last night at 18:45, she hadn't returned. So this either means no transfusion today, or more likely the transfusion to take place over night. As if having your sleep disturbed every two hours for eye drops wasn't enough. Vicki hates going to sleep whilst attached to "Bob" as she calls the pump, in case she's restless as she sleeps and pulls on her Hickman line and disturbs it. Again, this is reasonable, having already had one pulled out. But no-one seems to take account of this. They are clearly too many plates spinning, too many resources being spread too thin. So don't believe the hype and the sound bites, patient-centric my gluteus maximus!

The home straight?

2010-01-21T13:47:00.005Z

The blog has been silent recently for reasons that I'm not going to expand upon on here. Suffice it to say that a degree of resolution or maybe acceptance has taken place. But in any case, you haven't missed much. Vicki has been 'home' for a little while, and is now embarking on, what we hope will be her final chemotherapy treatment. This is a short, high dosage treatment, which started on Tuesday, and will finish today.

So far this has been uneventful, lets hope that's how it continues. As is always the case, the recovery period will be much longer than the treatment, and we are expecting Vicki to be in hospital for at least 4 weeks.

I believe that we are through the worst, and the end can't come soon enough as the relentless surge of drugs, sleepless nights, and emotional tension has been taking it's toll. I spent a little time at work this week which provided me with a stark contrast to the life I've experienced over the last 4 months. On the one hand, I could see how much I missed the social interaction and routine of working life. But on the other hand, parking at work, yuck! I also realised that I'd lost any concept of time in the way that most of you take for granted. For example, the feeling of Friday's being great, and Monday's being dreadful. The feeling of half way through that you get on a Wednesday lunchtime. All days are the same to me, and when I have to readjust to a normal working routine I will have to spend some time acclimatising.

The tragedy in Haiti makes you realise that however bad you think things are, we're actually incredibly lucky to have the lives that we have. However, the stark reality is that however bad things are in the Caribbean, it's what's in front of you that really affects your life.

It's positive to hear Vicki talking about the future; Exams, college courses, normal stuff. That future will be peppered with fears about whether or not the Leukaemia has returned, or whether any of the carcinogenic side effects of the chemotherapy have raised the ugly head. But we must not live in the shadow of cancer, we must try to file these thoughts away and live life as normally as possible.

Ward 27 antics

2010-01-11T13:29:00.007Z

Inbetween the boredom and intensive treatment, there are some moments of intense amusement and hilarity. Here's a few pictures to show recent events.

Here's Jaz, being, well, Jaz :-)

Here's Andy, laying in wait to surprise Jaz. To be honest, that doesn't take much, she does scare easily. Very easily.

Here's Jaz again, not too sure what she's doing. Not sure that she knows. Nice expression though!

Oo look, here's Jaz again, trying to avoid being photographed. Not very successfully!

Your eyes do not deceive you, this is Philippa INSIDE the window. No wonder Vicki is looking on in bemusement.

Here's Philippa with a surgical glove over her head. Yes really!

I wish I had some pictures of the aforementioned trolley incident. May have to recreate that another time, what do you reckon chaps?

Laughter is really is the best medicine

2010-01-10T12:52:00.002Z

Yesterday started pretty much as any other. It was the usual mix of frustration, food, and failed attempts to get any information out of any of the medical staff. Oh well. Still the day livened up no end when visitors crossed the threshold of Ward 27.

It started on a good note, Vicki thought just her mum and Andy had come to visit, when Philippa literally sprang through the curtain to bring a look of happy surprise across Vicki's face. Tracey and I then retired to the canteen for some caffeine and nicotine and left the teenagers to get on with the fun. When we returned to the ward some time later, we decided to go and sit in the old classroom to give the kids some quality teen time minus the grown ups. We entered the room, and the lights were off, as we would have expected, so we turned the lights on, turned the TV on, and then were met by raucous laughter coming from the corner of the room. The three of them were hiding there, and we'd accidentally sprung them!

Tracey and I retired to the day room, and the kids said they wanted some sweets and cookies. As we entered the room, still dark, we tentatively made our way to the corner. As we furtively passed on the food in the dark, I could see a human shape on the lower part of a TV trolley. So pretending that I hadn't seen this I announced "Ah, I wondered where that trolley was, I'll just take it back to the ward..." Philippa had contorted herself into a ball and was wedged into the trolley and to her credit, stayed silent as I wheeled the trolley out, and into the corridor. I went all the way to the other end of the main corridor and back, and the looks that we got of the staff, parents and other patients was hysterical. They just didn't know what to make of it. As I got back into the room, I span the trolley around a few times, and Vicki and Andy laughed out loud. Philippa however just felt sick for some reason!

As Tracey and I returned back to the day room to watch TV and chat, a little while later, Philippa came passed the window this time with Andy on the trolley! Quite some feat as he's a tall chap. I came out, took over, did a circuit of the nurses station, much to their bewilderment and back to the 'hideout'.

As ever, the long drive home was considerably shorted as the laughter spilled over into the journey through the snow and ice. Plans are afoot to fill the local swimming pool with custard... and ice cream... and hundreds and thousands... and... cheese. Yes cheese. So look out Dane's Camp, the pudding to end all puddings is coming!

As I type this entry, I have news of Vicki's home leave, she's on her way! Yay! Tomorrow, I will publish a few pictures of recent goings on, so look out Andy, Philippa and Jaz, you're gonna be the stars of this blog tomorrow.

3 is a magic number

2010-01-09T13:41:00.001Z

Tantalisingly within our grasp, Friday's Neutrophil count was 0.25, just short of the 0.3 that would have allowed Vicki to come home.

However, regardless of the level of these little critters, we now have to wait for a blood culture which will take 48 hours. Just to compound our frustrations, today we didn't get a Neutrophil figure because the lab chose not to test for this. Hey Path-Lab, not to worry, it's not like its important or anything, Vicki's only been in hospital since mid December, she's not desperate to get home or anything.

The snow doesnt help either, it just makes the whole business of getting to and from hospital more tricky. Global warming you say? Mmmm. We haven't had a winter like this since 1981 or 1963, so you would have thought it could have waited another year!

As ever, Vicki is quite well, just frustrated to still be here. My money is on Monday for a short period of home leave, so you can guarantee we'll get so much snow we'll be stranded here. Ah well such is life...

The ups and downs of blood cell counts

2010-01-07T14:18:00.003Z

A bit of a mixed bag today with Vicki's blood cell counts. Haemoglobin down slightly, Platelets up quite a bit, White Blood Cells, up a bit, Neutrophils down a shade. So I hear you all asking, what does all this mean to Vicki? Well, sadly it means more time in hospital. Neutrophils are the key indicator, as they are the blood cells that fight infection. The last time Vicki was home, her Neutrophil count was 0.4. Whilst this is still in the abnormal range, and would earn her the label "Neutropenic", it's high enough to be considered safe, so long as care is taken so as not to expose her to infection risks. Like boys. They are way to risky, and carry far to much bacteria to be considered safe to a neutropenic young lady. Sorry John, but there you are, you can't argue with science!

So sadly once again, poor Vicki is left waiting. She's bored, and understandably just wants to be home. So what we must all do, is focus all our positive thoughts and energy on raising her blood counts, especially the Neutrophils. OK? All together now, higher... higher... higher...

Waiting, just waiting

2010-01-06T20:44:00.003Z

We're now entering the waiting phase. Just waiting for Vicki's blood counts to rise to such a level where she will be allowed home. For her (and me) this is really frustrating because she's not receiving any treatment as such, so she could be at home, taking things easy. I understand that she's at a higher risk of infection, but I'm sure she'd be at less risk at home then in a hospital full of people with infections and diseases!

So we have to wait, patiently, knowing that when Vicki's bone sees fit it will start producing the necessary cells to allow her to come home. In the mean time we wait, and watch the snow. Only there hasn't been much in Leicester!

This is quite exhausting!

2010-01-04T12:40:00.003Z

There are times when the sheer contrast in conversations that Vicki and I have often leaves me breathless. Yesterday we went from the sublime to the ridiculous in one step. We started by talking about the theoretical and philosophical possibilities that inanimate objects could have consciousness and therefore have thoughts. The argument went roughly like this. Bacteria and micro-organisms are everywhere, and and form essential elements of our very existence. So, if an inanimate object, let's say a chair, is itself covered in various forms of microscopic life, by implication the chair itself could be construed as being alive, ergo it could form some sort of conscious thought, albeit very basic. Quite a deep conversation to be having with your 15 year old daughter. Just as I was coming to terms with this new found intellectual quality, and was delighting in planning on sending Vicki to Cambridge to join the great theological thinkers of our time to discuss pan-dimensional existentialistic social dynamics, I was promptly returned to the real world by taking part in a long and drawn out series of raspberry blowing exchanges, which I have to say gave me the giggles for some time. Anybody would think I'd been reading Douglas Adams... mmmm.

The upshot of all this, apart from to confirm my attendance as in patient at the nearest institute for the insanely misguided, is that it wore poor Vicki out! Her blood counts continue to be low, and this contribute to her tiredness no end. She had another transfusion of platelets yesterday, and feel asleep during evening visiting. Awe bless her. It's getting quite hard to get her to eat properly, her appetite still suppressed by the after effects of the chemotherapy. As has been the theme lately, she remains quite well otherwise.

Meanwhile, back to the surrealism. Andy and I were discussing the surface tension of custard and how you could run over the surface of a swimming pool of custard. If only one could find a swimming pool of full of custard to demonstrate. To this end, Andy phoned a local lido to ask if they could arrange this, which sadly they declined. Where's their sense of adventure I wonder?

A little lower

2010-01-01T22:14:00.003Z

Today's news from Ward 27 is that Vicki's Haemoglobin count is down. Effectively this means that she's tired and pale. So bless her she's had no energy to do much today and everything is an effort. She's needed a platelet transfusion and then 3 unit of blood to help her stabilise her cell counts. She still remains quite positive and otherwise not to bad.

Once again, we had a bird's eye view of the fireworks that Leicester had to offer last night. There were many displays and the skies were illuminated for about 30 minutes or so. Much like Christmas Day, New Year's Eve seemed quite odd on a hospital ward. There were no heaving masses of people converging in one place. There was no massive queues for overpriced drinks at a tiny understaffed bar. There was no drunkenness. There was no hysterical outpourings at midnight being randomly kissed and hugged by complete strangers. There was no singing of a strange Scottish song that no-one knows any more that one verse to (and even differ over the first one). There was no walking home 5 miles in the freezing cold because you can't get a cab for love nor money. So, on reflection, quite a success then. Think I might plan to be in hospital again next year!

The Bear Necessities

2009-12-31T10:01:00.004Z

To lighten the mood for the New Year, a little musical number for you.

You just need Chemotherapy

The simple Chemotherapy

Forget about your illness and your strife

You just need Chemotherapy

The Great War’s nasty chemistry

That brings you just a chance of living life

Wherever they treat you, wherever you roam

There’s always long periods, away from your home

The pump is bleeping on the stand

The bag is empty, ain’t it grand?

When you look down at your blood count

You can see it’s down to nowt

Or maybe just a few

The Chemotherapy for life will come to you

Will come to you

Look for the Chemotherapy

The simple Chemotherapy

Forget about your illness and your strife

You just need Chemotherapy

Carcinogenic therapy

With the Chemotherapy for life

Now when you need some medicine

It can go in your line

It may be a poison

But it will be just fine

Don’t eat your favourites, it changes your taste

If you do just watch them waste

But you don’t need to eat this food

When they can feed you through a tube!

Have I given you a clue?

The Chemotherapy for life will come to you

Will come to you

So just try and relax, yeah cool it

Fall apart on the cancer ward

'Cause let me tell you something little daughter

If you do what you're used to, uh uh

You're working too hard

And don't spend your time looking around

For something you want that can't be found

When you find out you can live without it

And go along not thinking about it

I'll tell you something true

The Chemotherapy will then have worked for you.

The waiting game

2009-12-30T15:15:00.004Z

Vicki is quite well in herself. She's still tired, a little off her food, but feeling quite OK otherwise. Her blood counts though tell a different story, primarily her neutrophils, which are marginally above zero. Still, the doctors are happy with her progress, and given that she's not suffering some of the usual side effects overall so am I.

All we can do is wait, wait for her counts to start moving upwards, and then we can start to look forward to another period of home leave. As we approach the New Year, we're ever hopeful that this will be soon, but my feeling is that it will be at least another week before she'll be well enough.

All we can do in the meantime is try to keep our spirits up and not get too frustrated with the wait. A big thank you to Andrew Ward who was kind enough to post a link on his web site linking to the Leukaemia goodies that I'm selling on here.

New! Items for sale to support Vicki

2009-12-29T13:50:00.009Z

I am pleased to present a couple of items that are being offered for sale to raise funds to help pay for the car parking, fuel, and other things that make Vicki's life more comfortable. Buying either one of these items will also help raise awareness of Leukaemia.

You can can buy a silicon wristband, or a silverstone bracelet. The wristband has HOPE, FAITH, COURAGE, and STRENGTH separated by the ribbon symbol.

The bracelet has the words "Together we can make a difference" on a heart, and the orange awareness ribbon.

The wristband costs £2.50 including post and packaging, the bracelet cost £2.99, again including post and packaging. I have a limited stock, so you may need to wait for a little while should my stock be depleted!

Christmas, blink and you might miss it

2009-12-29T13:02:00.003Z

One thing is for sure. No matter how hard you try, Christmas in hospital will never even come close to what you can do at home. Too much is out of your control and very few people truly care for the plight of those in hospital at Christmas. Most people are far too wrapped up in their own Christmas festival of over indulgence and alcoholic inebriation to even spare a thought for those who have no choice but to spend their holiday incarcerated at the hands of their illness.

It was a difficult day to watch. Harder still to partake in. A small handful of people who would never normally choose to be in the same room as one another were all sat around the same hospital bed, and then the same dinner table. Vicki seemed to be nonplussed by it all. An early visit from Santa had delivered some lovely presents courtesy of a charity that specialises in this kind of thing. Christmas dinner was less than ideal. It took several attempts to ascertain that only the children would be catered for at Christmas lunch. OK, this is fair enough, but when you're 40 miles from home, it's far from easy to bring it with you, especially as there is only a microwave on the ward. The canteen open, but only doing chicken meals. Great. Hardly the lavish meal that we would have gorged on at home with all the trimmings. In the event, the ward was awash with Turkey dinners, so we needn't have brought up any food! You can't win.

After dinner we settled down to a bit of karaoke fun, but Vicki didn't seem too interested, she just watched. She was still tired after the relentless eye drops. I wasn't in the best of moods for reasons that I won't discuss on here. So all in all, a Christmas day to forget. And then of course you're faced with an endless barrage of well meaning people asking "Did you have a nice Christmas?" Strangely the minute you say "no", they lose interest and make their polite excuses and withdraw. So it seems that you have to have a nice Christmas, or you must be some kind of social pariah, a Christmas leper. This just served to deepen my mood even further!

Vicki has had another blood transfusion and more platelets and seems quite lethargic and uninterested in anything. She's starting to eat again, but remains quite distant from anything else. I think being hospitalised over this time of year is just the worst thing a child can imagine. Even a cynical non-believing 15 year old! Hopefully, now that ordeal is out the way, she's start to brighten up and then hopefully be able to come home for a few days. Lets see what the New Year brings.

The eyes have it

2009-12-23T17:14:00.004Z

Finally, the day when the eye drops stop is upon us. It felt like this day would never come. But as ever, something else looms over the horizon before we have a chance to take a breath. The medical team are now concerned that Vicki is losing weight. Well, hello? She's had hardly any sleep for 10 days, and she's had a high dose of cytarabine. Hardly a recipe for a healthy appetite now is it? But rather than take this into account, the suggestion (no, more of a threat) was that if she doesn't start regaining the weight then they will have to put her on TPN (a food drip). Now I understand the important role nutrition plays in the rebuilding of her immune system, but it seems a little much to have this concern now. Yes, in a weeks time, when she's had some good quality sleep, but not now.

Vicki remains quite well in herself, and is really looking forward to a good nights sleep. Who can blame her. She's quite lethargic though, and needs constant pushing to do just about anything. Sadly the weather has contributed to a lack of visitors, so I was glad to see the forecast of improvements to come.

With Vicki in hospital for the foreseeable future, Christmas has lost all meaning. I've tried really hard to be festive. I've got a CD in the car of all the old Christmas favourites, but I just find myself flicking through each track, and then putting the radio on. Even my old favourite Radio 1 has been ditched for Radio 5, at least until Moyles is back in the morning, and Mills at tea time. They were just about the only elements of routine that I had. Might switch to Evans in the New Year. Oh the joy of having trivial decisions to make!

As I sit here typing this, Vicki is making Christmas presents, nice to see her being creative, and what's she's made is really good. Obviously I can't tell you what she's making in case the intended recipients are reading this!

Anyway, I'll be having a brief break from the blog over the next few days. I'd like to take this opportunity of thanking you all for your support, and to wish you a very Merry Christmas.

Everything counts

2009-12-22T09:59:00.002Z

Now Vicki's 3rd chemotherapy is behind us she has all the joy of the side effects kicking in. From a medical point of view this means her blood counts lowering to levels that are dangerous were she in the outside world. Of course they are still dangerous inside the ward, its just that she's in a place that is equipped to deal with all the risks. She's already had 3 units of blood tranfused, and in addition yesterday she received some platelets.

She's quite well in herself but is still shattered from her eye drops. She's nearly done with them, and hooray for that. The ward is full to bursting today, and there is an awful lot of noise going on beyond the confines of the cubicle door. Not exactly what you'd call restful conditions.

Against this backdrop Christmas seems such an irrelevance. Nothing more than a hedonistic consumptive binge. But the reality is that it is nothing more than a date on a calender. It's not even the anniversary of Jesus's birth as any theological historian worth their weight will tell you. Many of the traditions that we all take for granted are relatively modern in origin. Trees, cards, presents, Santa, turkey and the like to name but a few.

When the lights went out last night neither of us were tired, so we discussed some interesting topics. For a 15 year old girl she has a sharp wit and a wry observation of the world. We talked about religion, politics, the environment and education. Not only could I not have imagined this conversation taking place 6 months ago, the maturity of her thinking had me grinning in appreciation of her ideas. As an envirommentalist I was pleased to hear her talking about wind farms, recycling and deforrestation. As a father I was so proud to hear her talking about things that I've been banging on about for years!

She's quite a girl my daughter, but then I knew that already!

Wave after wave

2009-12-19T16:12:00.003Z

The relentless onslaught of the waves crashing into the beach is very much like the endless surge of eye drops that make their two hourly journey, day in, day out, without fail. Vicki is over half way through the Chinese water torture to counter the effects of her 3rd chemotherapy treatment.

The chemotherapy now over, she's got another 5 days of eye drops. This of course means that she's exhausted and spends much of the time sleeping. It's also affecting her appetite, so this is quite a tough time for her.

Christmas just adds to the layers of frustration in her life at the moment. It must seem absolutely never ending for her to endure this, and to know that she has another session of this in about 2-3 weeks time. Whilst everyone else has been enjoying the snow, as ever she's confined to her ward, missing out on yet something else. Something else that she'll never get back.

The morning after

2009-12-15T10:55:00.001Z

It's the morning immediately after the commencement of the 2 hourly eye drops and as you would imagine, Vicki is out for the count. She's got another 9 days of this to go. So imagine how you would feel if you had just had one night of constantly dusturbed sleep, then multiply that by 10. On top of that of course are doctors and nurses poking and prodding when you're exhausted. Poor thing, as if things aren't bad enough for her.

Vicki also has a raised temperature so the spectre of infection rears its ugly head once more. Cue more drugs, and even more obs. I also noticed the nurses having a problem using one of Vicki's lumens this morning. After our previous nightmare, I hope I'm not reading too much into these two perhaps unconnected facts. Doesn't stop me worrying though.

Otherwise things are quite good, Vicki is quite well in herself other than having a bit of a cold. She ate 2 meals yesterday, which is one more than I managed! Still not round to changing that bulb, I guess that will be a job for tomorrow. Then of course, snow is forecast. Oh joy.

Finally!

2009-12-14T17:32:00.002Z

We were told that Vicki's penultimate chemotherapy treatment would start at 8:00 this morning so we made the decision to come into hospital last night, thus avoiding the traffic, and making the task of parking considerably easier. However, it actually started at 1:00. Joy, we could've had another night at home.

Vicki has now started her 2 hourly eye drops, which is fine during the day, but will be hellish tonight, poor thing. She has 10 days of this to come.

Still, she remains strong and optimistic.

On a different note, my headlight bulb blew last night. Being a practical man, I carry spares so naturally I decided to change it straight away. What a nightmare, the most awkward location the Renault designers could come up with. I'm still trying! Clearly they want you to visit the dealer and charge you lots of money, to change a bulb! Having already had an argument with Renault over 140 quid for a new key, i shouldn't be surprised.

A bit of a reality check

2009-12-13T11:50:00.003Z

Vicki seemed a little low yesterday. You'd think the bonus of a few extra days at home would make her happy, wouldn't you? The root of the problem is that no-one seemed willing to make the effort to spend some time with her. All she wanted to do was go shopping with her friends. I'd said to her that I was quite happy to take her and her friends to Milton Keynes, where she could shop or go to the cinema while Debbie and I did some seasonal shopping.

Now given that Vicki spends most of her time in hospital, and has little time at home, I would have thought that they would be willing to rearrange their plans to accommodate her. I mean, they have the freedom do whatever they want, whenever they want, Vicki does not have that luxury. This left me a little flabbergasted to tell you the truth. Everyone seems so wrapped up in the their own little worlds that making the effort to see a sick friend must be all too much. This is sad. Vicki's illness is very restrictive and she often has periods of feeling quite low, and we all need to work to pick her up, and make her feel positive, so I feel her friends have all let her down. I guess I shouldn't be surprised, teenagers today are fairly egocentric, and there are many things to draw their attention away. A sad reflection of today's society.

A little break from the norm

2009-12-11T14:54:00.004Z

I thought I'd break from the usual format for one day, hence the pictures, and the link to the earlier article from the Evening Telegraph, here's the story. Thanks to them for their continued support.

The Okey Cokey, NHS Style

2009-12-10T17:20:00.004Z

Today was another one of those "you couldn't make it up" days. Having had her Chemotherapy delayed to allow her blood counts to rise, today was the time to start Vicki's penultimate chemotherapy treatment. Or was it?

We arrived after fighting through the Leicester traffic at god-knows-when-o'clock this morning, and were allocated a cubicle. I unpacked all Vicki's things while she went through the 'check-in' process. The doctor came along and told us that they were going to give Vicki a Lumber Puncture, and that would take place today. Shortly after, he returned and said that they weren't convinced her blood counts were high enough and that they'd take a sample to check, so we may be coming home after the procedure.

So off Vicki went to have the procedure. As I returned back from the procedure room, one of the nurses tell me that unfortunately, an isolation case had come in, so they needed the cubicle, and we had to move to the ward. So I took the time that Vicki was having her operation to decant to the ward.

The doctor came in to confirm that Vicki's blood counts were fine, and that she would be staying in. As Vicki left the procedure room, I was then told that she'd be taken to the day room to recover as we'd be going home afterwards. Are you following this? So I started to move her stuff to the day room so I could be with her whilst packing to come home. The doctor then spotted me and said she would be staying after all, her counts were OK. So I did a swift about turn, and was just about to return to the ward when they realised that as different staff seemed to have a different version of whether we were in, out, in, out, or shake it all about, they really ought to refer to the Consultant actually in charge of Vicki's care.

He came in to see us and explained that although Vicki's counts are up, and over the usual level to start treatment, he wants to allow her immune system a little more time to recover, so she can come home and return to hospital for her treatment to start at 8:00 on Monday morning. OK, everybody got that? So, altogether now, that's what its all about...!

Trying to be normal, whilst we wait

2009-12-09T11:31:00.005Z

Since Vicki came home last week I've tried to make things as normal as they can possibly be under the circumstances. She started by going to Explorers last Wednesday. Friday we took my mum shopping and in return she took us both out to dinner. Saturday Vicki went into town and saw the movie New Moon with her boyfriend and then went Christmas Shopping. She spent the evening with her mum and watched the X Factor before returning home. Sunday we invited my mum over to dinner and between all three of us we prepared, cooked and served. Monday Kieren and Philippa came over and we had a good sing-along on We Sing. Some of the evidence of this is on Facebook! Sharp observer will note that I'm not in any of the published videos. Camera man's privilege ;-D. Yesterday, Vicki should have been going back into hospital for her 3rd chemotherapy, but her blood counts are not high enough, so she's able to stay at home for a couple more days.

This gave us an opportunity. Vicki had been disappointed that she would miss her seasonal school trip to Birmingham's German market. So I suggested that we could use this extra 'bonus' time to visit the market, and of course the Bull Ring. With a glint in her eye, the kind of which I'd not seen for a long time, she seized the opportunity to spend some of my money! We had a lovely day in Birmingham, bitterly cold, but much to see. As well as the German Market, we took a ride on the observation wheel to see an aerial view of Birmingham. No offence Birmingham, but you look much better from the ground! We arrived home exhausted and shopped-out!

Today, we're playing the waiting game. The community nurse called this morning to take blood samples as normal, and the results of these will determine whether we're heading back to Leicester for a month, or holding off for a little longer. So it's waiting by the phone for news from the pathology lab... Now of course, it seems inevitable that Vicki will be in hospital over Christmas.

Monday we made third page news in the ET, a lovely piece, it's nice to know that they're keeping abreast of events and an active interest in the story. Hopefully the coverage will generate some interest in making Vicki's Christmas special. Fingers crossed.

Second Home Leave

2009-12-03T11:52:00.004Z

Finally after all the waiting of yesterday, I got to bring Vicki home. The hospital do like to keep us guessing though. After dangling the carrot of home leave in front of us last week, we were left waiting yesterday until just around lunchtime to know for sure. During the morning ritual of the doctors round we were told that Vicki might be coming home. So we waiting in eager anticipation of the news, but none came. Until, that is, a nurse came in and casually mentioned in passing "oh I see you're going home today...", to which the reply came in stereo "Really? No-one's told us!". This left the nurse scuttling off to check, and after a further agonising wait, the confirmation came. Brilliant! Sadly, as told in yesterday's blog entry, it took several hours before we could actually leave the building though.

We didn't let this dampen our spirits though. Vicki was particularly excited as she knew that by being allowed home on a Wednesday she could go to Explorers, and surprise everyone there who of course would not be expecting her. Had she been allowed home a day later, and she would've missed the chance to go this week and next week, as she would've been back in hospital by Wednesday. If she'd been out more than a day later, then she wouldn't have been able to spring the surprise that she did as news of her home leave would have filtered around her peers. It was lovely to see the reaction of her friends who were rather excited to say the least at her surprise appearance. Of course, boyfriend Andy was in attendance, he was the only one who had been briefed on Vicki's arrival. She was on such a high when I picked her up that I felt for a little while that none of the preceding 8 weeks had happened.

Sadly though reality bites when I got some bad news from elsewhere in the family. Life huh!

The left hand doesn't know what the right hand is doing

2009-12-02T23:16:00.005Z

Generally speaking, Vicki's 2nd hospital stay has been without major incident, which is a big improvement on last time. However yesterday and today have both highlighted why the NHS often has a bad name. No clinical risks this time, but quite irritating none-the-less.

Yesterday Vicki needed an ultrasound scan on her liver and stomach. This was due at 2:00 and as this time approached it became clear that she wouldn't be able to go as she was still hooked to the infernal machine! So one of the nurses rang down to the Radiography department to let them know that Vicki was going to be late and discovered that Vicki wasn't even booked in. OK, these things happen, but when we arrived at about 3:00, we were told that they still didn't have Vicki booked in, they were very busy and could Vicki be seen as an out-patient!

Well no, not really I insisted. Then one of the radiographers came out and made the same request. So once again, I had to insist, and state that as we were 40 miles away, coming back as an out-patient wasn't really practical! So they put us to the back of the queue and we waiting a further hour or so to be seen.

Today, Vicki needed to go to the Glenfield for an Echo on her heart. The ward arranged for an ambulance to take us there. This arrived an hour early, meaning that Vicki missed her lunch. They also had no record of a request for a carer to go as well, so they had to check before I was allowed along too. Upon arrival at the Glenfield, the ambulance crew took us to the wrong department because their paperwork was incorrect. Upon arrival at said wrong department, the receptionist seemed baffled to be told that we had arrived for an "Echo", even though above her window it clearly said "book in here for ECG". Can someone remind me what ECG stands for? She even sent us on a wild goose chase down a corridor which landed us back at her window a few minutes later. This time she actually bothered to look up on her computer where we were supposed to be. "Computer says no". When we arrived at the correct department, we were seen immediately, and once Vicki had been seen, we enquired as to the whereabouts of our transport back. 2 hours later it arrived. TWO HOURS! That was mind numbingly boring and frustrating.

On arrival at Radiology yesterday, and Children's Outpatients today, both Receptionists asked "did we have our letters?" Well no, we weren't given letters, Vicki is an In-Patient, sent here for tests by her consultant. For some inexplicable reason he didn't see it fit to write a letter and give it so us for presentation at the next incompetent department's desk that we came across. Presumably this scenario has never occurred before, or so you would think.

Trouble is, each part of the hospital is largely autonomous from the others, and no-one seems to have overall responsibility for the patient's holistic experience. Individual elements are often excellent, but sadly in this case, the sum of the parts is less than the sum of the whole. A little communication wouldn't go amiss methinks. You couldn't make it up, could you.

A testing time

2009-12-01T14:52:00.004Z

We're entering a period of seemingly endless tests. On top of the already daily blood tests, today Vicki will have an ultrasound test on her liver. Tomorrow she will have an echo test on her heart. This week, or early next week she'll have a bone marrow test, and a lumber puncture. All of these are routine except today's liver scan. Vicki's most recent blood tests have revealed some anomalies in her liver function. This is to be expected as part of her chemotherapy, but needs to be checked out just in case.

Vicki remains quite bright and positive, and of course is frustrated to be still in hospital. Her consultant confirmed that when she does get home it will be for 5 days, not a week as we'd hoped, but this of course is better than being in hospital. Her counts are slowly rising, but aren't high enough for her to be allowed home just yet.

The more observant of you may have notice that there is now a donate button on the blog. Please help all you can by bringing this to the attention of as many people as possible. Every donation will directly help Vicki. The purpose is two fold. It's to raise money to pay for petrol and car parking, as the cost of this is starting to bite. It's also to ensure that Vicki has an amazing Christmas, so please give generously and spread the word. It's hard to make this direct appeal, but necessity has forced me to the begging bowl as it's fair to say that our efforts to garner attention through the media have yielded us precious little even though we were promised it would. We had a fabulous donation that came as a direct result of the local media, but since going national nearly a month ago, money has been less than forthcoming. With Christmas coming, it's important to highlight that the strains of Vicki's illness go way beyond how it affects her directly. It would be much easier of course if Vicki was being treated locally, but NHS provision in Northamptonshire is sadly lacking.

Some clarity, it would seem

2009-11-30T16:03:00.003Z

After the confusion of the last few days it seems that Vicki is to get a break from her chemotherapy and hopefully, as soon as her counts have recovered, it should be for about a week. Assuming she's able to come home on Wednesday or Thursday, it looks unlikely that she'll be home for Christmas. :-( Oh well. However on the plus side, we now know that she is half way through her treatment. The medical team today said that Vicki is going to have 4 treatments in total. Well that is a real light at the end of the tunnel moment. Looking at the time scales involved this should mean that her treatment should be over early March, as long as no complications ensue. Fingers crossed then.

Last night we had a bit of a giggle at the hospital, as Vicki has been lent a Wii by CLIC Sargent (many thank to them for this), and we had as much fun creating Mii cartoon's of everyone as we did playing the games. Philippa and Andy visited and raised Vicki's spirits no end. I am continuing to find Micky Mouse confetti all over the car from one of Philippa's earlier visits, and this always brings a smile to my face.

Vicki is buoyed by the news of her impending home leave, as I am, so lets hope it's very soon.

Confused? You will be!

2009-11-29T12:41:00.005Z

As became clear yesterday, we're starting to get mixed messages about what is going to happen next. So, this morning, I attempted to get some clarity on this and ended up even more confused than I had been!

Rather that give you all the same mixed messages it seems simpler to simply state that any number of scenarios can occur. The only thing that is certain is that Vicki's next chemotherapy will be a high dose over a shorter period. Although we're not sure when this will begin, when it eventually does it will be for 5 days. The drug will be 6 times more powerful than the dose that Vicki had previously.

The intensity of this treatment means that it may have an effect on her eyes, so she'll be on 2 hourly eye drops for 10 days. Yes, every 2 hours, including through the night. So she's going to have a pretty hellish time for a week and a half. Bless her, like she's not been through enough.

Her blood counts remain low, and later today she'll have another full blood transfusion, and platelets as well. After a few days of poor appetite, Vicki's starting feeling like eating again, and even had a whole sandwich this morning. Well, alright, not a whole one, but most of one! I think a pending visit from her boyfriend is making her feel chirpy, which is always nice to see.

As has been the case over the last few days, it's quite frustrating waiting for her counts to come up, as there is nothing you can do to help the little critters on their way. Patience, as ever, is required, also in large doses.

Make your mind up!

2009-11-28T23:19:00.003Z

After dangling the carrot of a home visit in front of us, today the medical team suggested that Vicki begin her next chemotherapy treatment as soon as her blood counts return to normal levels. This of course means no home leave. Whilst I understand the rationale behind this suggestion, Vicki has been so looking forward to coming home that it's hard to see the positives in this for her.

Clearly, by doing this, there is some chance that Vicki may be home for Christmas, which makes perfect sense, but of course there are no guarantees. I've discussed this with Vicki and she's not clear on what to do for the best either. So I think the discussions will rumble on for a little while yet.

If we knew for sure that she'd be home for Christmas it would be a no-brainer, but such is the nature of Vicki's treatment that any complication could set in during or after treatment, so if she were to miss her home leave now, and then still miss Christmas, she will have missed the chance of a break now, and will have had 8 week hospital stint.

A small ray of light

2009-11-27T12:00:00.003Z

After some days of low blood counts, we finally see some positive progress. Neutrophils remain very low though. However we now have a new problem. Vicki's body has not been holding onto the platelets that have been given to her, so the consultant ordered some tests to work out why. The results of the tests indicate that Vicki's immune system is attacking the donated platelets. On the one hand, this is a normal immuno-response, but of course, it isn't helping her health. The way to deal with this is by getting the platelets to be transfused better matched to Vicki's own to trick her body into not attacking them. Of course this makes this a little harder!

Nevertheless, overall the mood is positive news. We've even heard vague talk of Vicki coming home for a little while, though I have to say, nothing concrete. The uncertainty weighs heavy as Vicki outwardly is quite well. She can't wait to get back to some normality, see her friends, sleep in her own bed, and experience life beyond the confines of the Royal Infirmary.

Vicki remains quite tired, and her appetite is far from normal, but her weight remains stable so there's no real concerns on this front. I'm more concerned about the times that she gets hungry, because you have a very limited choice in food at 11:45 at night! Mind you, it's quite easy to get a parking space at the hospital then!

Helium balloon anyone

2009-11-26T13:24:00.003Z

It seems my sombre mood was not restricted to me alone. Vicki has had a couple of stress point which have resulting in some very teary and emotional moments. She badly misses the life she had before the Leukaemia, and everything that went with it. Who wouldn't? She's also back at that "can't see the light at the end of the tunnel" moment, when every day the doctors come, and just give her even more drugs to take.

The crux of the problem is that her blood counts remain very low. Whilst this is the case, the risk of infection is high, and this risks needs carefully managing, with drugs to prevent infections and staying on the ward for frequent observations just in case things kick off, infection-wise. Given what happened last time, this is wise.

So we carry on, waiting, hoping, and passing the time of day, until someone tell us we can come home.

The dark clouds descend

2009-11-25T11:44:00.005Z

Vicki's blood counts continue to be low, and she will need to have some more platelets today. She's starting to feel a little down as she doesn't feel that her blood counts are recovering. Of course. It's easy for us to forget that it took some time after her last chemotherapy for her blood count to properly recover. The main difference being that she was so poorly last time, I think that we all had so many other things to occupy our minds that the time seemed to pass differently.

For the first time since Vicki's been ill, I feel really lousy. I think I've got an emotional hangover. Yesterday would have been my Dad's birthday, and it was quite a tough day to negotiate. I think Vicki's general malaise has added to me feeling rubbish. It's also getting near to Christmas, and of course the possibility that Vicki may be in hospital over the festive period. It's bad enough for anyone to be in hospital over Christmas but for a child I think it's worse.

It's also quite hard to understand the motivation of some people who continue to make life quite difficult. You would think all concerned would put Vicki's needs above all else, but sadly there are a few who prefer to keep to their own agenda. I wouldn't be so cheap as to name names, but I know they read the blog and they know who they are!

Its a numbers game

2009-11-24T14:14:00.003Z

As with Vicki's first chemotherapy treatment, now it's all about the numbers, her blood count numbers. Her stats are a little low, and lowest being her neutrophils which are very low indeed. She's receiving some more platelets today to boost her immune system. The hope is that she starts to hold on to these this time around. It's all normal side effects of the treatment, but it's a worry none-the-less.

Vicki is quite well in herself, her main problem other than her health is boredom. Yesterday, bless her, she was reduced to playing "eye spy". Not in the usual way however. In a modern 21st century twist, she was playing over the internet with some of her friends, who clearly couldn't acutally see what she was making them guess and vice versa! I guess they could've used web cams to add the all important visual dimension to this simple parlour game!

She's not had many visitors over the last 4 days to break her monotony, so hopefully we can get some more people up to help her pass the time away.

The foothills of the recovery mountain

2009-11-22T13:55:00.004Z

After Vicki's blood transfusion and platelets yesterday, today we see a little colour return to her cheeks. Her blood counts are starting to look a little better. She is still quite tired, and although she's eating, she's not quite back to eating normally. Her consultant is pleased with her progress and that her treatment is going according to plan. As ever there are no guarantees, and many hurdles left to negotiate. The Hickman line is always an infection risk, and of course her future chemotherapy will leave her immune system compromised.

As she continues to make steady progress you start to become more aware of the plight of those around you, and the harshness of their conditions makes you realise that we still have a lot to be thankful for. We are looking at a 4 - 8 month treatment plan, after which, assuming it has been a success, things should return to normal for Vicki. There are other patients here who are on treatment plans of at least 2 years, where even a successful outcome in terms of the cancer will leave the patient will some form of disability. The world is harsh cruel place, and it makes you wonder how any of us survive in it sometimes.

Children in need?

2009-11-21T18:52:00.005Z

I have to say, I was quite disappointed with CIN, and on two fronts. Firstly, I'm used to the hospital where I work, where the staff always do something for the children. Last year there was a pirate theme, and various celebs were trotted through, with numerous events to entertain, well, the children in need.

There was nothing on Vicki's ward, which was quite a surprise. Then the TV event itself. Aside from Peter Kay's excellent charity song and video, it all felt a bit jaded. The sketches all felt too short, and too contrived. There didn't seem to be enough material, as some of it was repeated. Perhaps it's me, perhaps I'm just too jaded. Perhaps I'm so close to the centre, seeing all this effort go into raising money, without seeing any spent on my daughter, is what makes me feel like this.

Perhaps because my son is causing World War III, this is not helping either. Either way, it's quite hard to get a positive vibe at the moment.

Vicki's quite tired, which is no surprise given her propensity for late nights recently, but also because her haemoglobin level is down. She going to have some platelets today, followed by a blood transfusion. Her consultant assures me that this is normal given the stage that we are at in her treatment. Overall she is still responding well, and is much brighter than she was following her initial chemotherapy.

Steady as she goes (again!)

2009-11-20T16:08:00.004Z

Vicki is much the same today, tired and suffering from a little nausea. She's looking forward to "John" visiting this evening, and this will no doubt perk her up no end.

I hope you all give generously to Children In Need tonight, I do hope some of the money raised goes to the numerous charities that look after children with cancer. Go Pudsey!

Slow but sure

2009-11-19T14:20:00.006Z

Vicki continues to feel quite well in herself. The real picture however, it told by the blood counts which are still low, but are steady. It was a close call this morning, but after some 'umm-ing' and 'ahh-ing' the doctors decided to give Vicki some platelets today, and to review her antibiotics tomorrow. As I said in earlier posts, I would expect it to be another week before the counts return to levels that will allow her to come home.

Vicki's managing to do some school work and is actually benefiting from the one-to-one tuition that she gets from the educational outreach services that visits daily. It is well documented that she is no fan of English, but since she's been in hospital she's being studying Macbeth and Frankenstein with a renewed understanding thanks to the attention that she receives. A big thank you to the School at the Royal Infirmary for this.

Steady as she goes

2009-11-18T13:54:00.003Z

Vicki needed more platelets on Tuesday, but she doesn't need any blood products today. Her blood counts are not at the normal levels yet, but they are stabilising, so hopefully they will start to recover over the coming days. My guess is that she'll be in hospital for at least another week before she's allowed home again. She seems quite bright in herself, and is continuing to do some school work during the day, so overall I'm quite happy. Still no mobile phone though :-(

Once again however, the focus of today has been on Samuel. First he refused to go to the doctors this morning, and then after an 'altercation' with another pupil at school, he walked out. So much of today has been preoccupied with Samuel that I've only just managed to phone Tracey and ask how Vicki is today. I'm due to take Samuel for another appointment this afternoon, but don't know whether he will go. I'm really at a loss as to what to do for the best with him, words fail me, and I'm not known for being short of things to say... apparently. (sighs deeply)

Loves Mobiles Lost

2009-11-17T10:39:00.003Z

The hospital have a knack of losing what is precious to you. First they lost her crystals. Vicki is a great believer in the power of crystals, and these particular crystals were bought for her by her Aunt, especially for her condition, so this was quite distressing. Lost without trace. Then, at some point between ICU and the ward, her oldest, most favourite teddy bear, was lost, again without a trace. This time, they've lost her mobile phone.

A mobile phone is like a limb to a teenager, and this means that now she's partially cut off from her social network. If anyone has a mobile that they no longer need, preferably unlocked, or on T-Mobile, would you please be kind enough to consider letting Vicki have it? It would be much appreciated. You can contact me via e-mail address which is on the blog somewhere.

Many thanks.

It never rains but it pours

2009-11-16T12:26:00.004Z

Never has such an everyday expression been so true. When I arrived home on Saturday in the torrential rain that lashed the country, I discovered the rain coming into my utility room. The lead flashing between the house and the utility room has finally given way. This will clearly be another job to add to the long list of things that will be attended to later when Vicki is better. [sighs]. Oh well, after the car, and now the house, what next I wonder?

The most interesting development with Vicki is the news that she now has a boyfriend. You would've thought perhaps that love would be the last thing on her mind, but apparently not. The object of her affections has long been known to me as "John". Those that know me will know that when saying "John", it would be complete with quotation mark finger gesture, and a certain tone of voice that also inferred the quotation marks. "John" started out because naturally Vicki didn't want to tell me the real name of the young man in question, but then developed into a life of it's own, with Vicki using the moniker to talk to her friends about him in front of me. Now, I know his real name, it's Andrew. It will however take some time for me to migrate to his proper form of address, so Andrew please forgive me if I call you "John", it's all I've known you as for the last 3 months or so. It will pass. Might I suggest you wear a badge with you name or, or perhaps get it tattooed on your forehead as an aide memoir for me? That'd be much appreciated.

Vicki needed some more blood products on Saturday, but this time only platelets, no blood transfusion this time. Saturday evening "John", sorry Andrew came to visit, and the positive impact this had on Vicki cannot be understated. Her face glowed, and the smile she wore stretched from ear to ear. The effect lasted all night, as she spent the night in teenage-texting mode. The old Vicki was back.

The power of the mind in medicine cannot be underestimated as the following day no blood products were needed at all. Co-incidence? Maybe, but without doubt the immune system and emotional parts of the brain are interlinked. Later on Sunday Vicki had a slightly raised temperature and the medical team administered some antibiotics as a precautionary measure.

There's still no definite news on when she can come home, but hopefully this will be soon. The wait for news on this begins to weigh quite heavily on me, I often feel quite unsupported in this alien environment. People are quite good at offering kind words, but what's really needed is the practical things, like money and domestic chores, which just don't go away. No amount of kind words (welcome though they are) are going to mow the lawn, clear up the leaves, fix the car, do the ironing, take Samuel to school and back, put diesel in the car, pay for the car park, sort work out and so on.

I popped into work today, and it made me realise that I'm missing so much social contact. It made me feel so alone. I realise that my life has just become endless journey's to and from the hospital, endless waiting for things to happen, endless household chores when I'm home. With little distraction to break the monotony. I know things will improve, but after seven weeks of this, the cracks are starting to show.

After a peak...

2009-11-13T12:00:00.005Z

Chemotherapy is a very unpleasant aggressive treatment. Albeit an effective one. I guess it should be no surprise that it is unpleasant given its roots are in World War I chemical warfare. The pioneers of chemotherapy treatment took their inspiration from Mustard gas. As with many significant discoveries, a chance event , in this case, an accidental exposure to Mustard gas lead to the observation of its effects on white blood cells, and the rest as they say is history.

The side effects are often as bad as the cancer itself, or in some cases worse. They also take a little time to present, and can last for longer periods than the treatment itself. Having seen a remarkable turnaround in Vicki's condition, she is now starting to suffer the side effects of the treatment. Her chemotherapy finished on Wednesday, and Vicki was pretty well throughout. Now however, the roller coaster that is her cancer journey, starts to roll downhill.

At the moment, she's just on the edge of negative side effects, she's started to feel nauseous and unsettled. The doctors warned us this morning that diarrhea, sore mouth, tiredness and nausea are all likely over the coming few weeks. In addition, suppressed appetite and hair loss are also likely. So hold onto your hat Dorothy, it's gonna be a bumpy ride!

Vicki remains quite well in herself, but her blood counts are still low, and today she needs platelets and a blood transfusion. It may be another 2 weeks before her blood counts return to her post treatment levels. Once she recovers from this 2nd treatment, her consultant has promised a brief break in the treatment. Obviously this can't come soon enough for us all.

No really?

2009-11-12T11:08:00.003Z

Yesterday I heard a word that I thought perhaps I'd never hear. A word that I've been desperate to hear since the 24th September, and one that is loaded with significance for cancer suffers and their loved ones. Yesterday, as I met the consultant in the kitchen of Ward 27, he almost casually through the word into the conversation as if it had little significance or importance. As has often happened with certain moments in these events, sometimes a word blurs out all others around it. After previous such moments with words such as Leukaemia, Intensive Care, Cancer, Chemotherapy, Seizure, this word elicited a similar reaction, but this time, for the first time, the word was a positive one. Remission. Yes, I'll say it again. Remission. He said Vicki is in remission. This is absolutely incredible. Only a few weeks ago she had been treading a very delicate path between life and death, so this news was bordering on the miraculous.

Lets not get too carried away though. As cancer suffer will tell you, remission is not game over for the cancer, and in Vicki's case, it's not game over for the treatment either. Remission means that you no longer have the cancer, but you are not clear of the disease. Remission means that your treatment must continue to prevent the cancer returning. There are patients who have been in remission for extended periods only for the cancer to return. So I don't want you to think the journey is over, it's is far from over. Vicki's chemotherapy will continue unabated for the coming months, and sadly this means that she will continue to suffer the side effects. However the chemotherapy will be delivered in shorter bursts now. Her initial 14 day chemotherapy was followed by an 8 day treatment from which she has just finished. She's still in the hospital, and now we're waiting for news on her blood counts and when she can come home for a short while again.

This is a step along the way, but a very important and significant one none-the-less. Please continue to give Vicki your support and love, we're not through this just yet.

Crisis, what crisis

2009-11-11T10:41:00.004Z

There are times when I wonder what I've done to deserve the life that I have. Perhaps I am a reincarnation of Attila the Hun or Genghis Khan and paying my penance for past misdemeanours.

Vicki's situation has been improving and I was finally starting to relax. Sure life was far from normal, but normal and stable enough for me to see the light at the end of this long dark tunnel. So just when I thought it was safe, Samuel decides to have a crisis. He's refusing to go to school again, and as before, he's shutting down and refusing to communicate with anyone as to why. Given all the hard work that has been put in, this feels like a kick in the gut. He's clearly an attention seeker, but this is so not the way to go about it.

What feels particularly hurtful to me is that I'd promised him a treat. A treat that was to be given on the basis of his attendance at his halfway-house school. I also made it clear that it was not appropriate behaviour to receive this treat, then for him to go back to his old ways. So for him to to do exactly that is more than a little disappointing. I don't know what else can be done for him, it's hard to help those who refuse to accept it, or play any constructive part in resolving their own problems. Samuel is very good at creating the 'tea and sympathy' vibe with those who know him, but I don't think this helps, it's just succeeds in him avoiding whatever the real issues are sadly. But ultimately, I'm lost as to know what to do, even without having to focus on Vicki. You see, he's done it again, I've been rabbiting on about HIM today, when he is not what my blog is about! Typical.

OK, so back to Vicki. Her blood counts are down, so she's going to need a blood transfusion today. Other than this, she's generally OK, just tired, and not eating much. However, she is managing to gain weight, which is a good sign, as this is the first time her weight has gone up since she's been ill. I've also made some progress on the education front, although now the options are bewildering, but it'll be the two schools to sort out the bureaucracy involved.

No news is good news

2009-11-09T10:36:00.004Z

I didn't blog yesterday as there wasn't much new to say. Vicki is still doing well, and the doctors are pleased with her progress. So far the side effects of the chemotherapy have been minimal. As this 2nd batch of treatment is far less intrusive into her every day life we've decided to try a visit to the real world, beyond the confines of the hospital. This time around, Vicki has a differing schedule of chemotherapy every day, and today's schedule allows for a break of about 6 hours, so we're going to explore Leicester and everything that it has to offer.

We've also started to plan her further education, and to hear Vicki talking about her future is a real tonic. It wasn't that long ago that she didn't think she had one.

It's not just the fireworks that light up the sky

2009-11-07T15:42:00.003Z

As we're well into the 2nd course of chemotherapy now, it's a case of so far so good. This week we've seen loads of firework displays around Leicester. Our ward, up high on the 4th floor of the Royal Infirmary gives us a lovely vista over the city. Numerous local displays have been entertaining us this week.

Inside the ward, the nights have been illuminated by Vicki's friends visiting. Each visit brings much laughter and entertainment. It's such a joy to see the smile stretching across Vicki's face as wide as the Khyber Pass. While the chemotherapy leaves her tired and lethargic, it's a beautiful contrast to see her laughing and soaking up every moment of the occasion. As with any teenager, she's so much more at home with her piers than her parents, it's just such a shame that we're so far from home that her friends can't visit for longer, or more frequently. Still, this makes us all cherish the few hours she does get.

Vicki's treatment continues on a pace. It's strange to realise that she's already half way through this 2nd course of chemotherapy already when the first course seemed to go on for ever. Time plays some interesting tricks with the mind.

Education, education, education

2009-11-06T11:37:00.003Z

When Mr Blair made this his statement of intent back in 1997, he made it a personal priority for his government of the day to invest heavily in schools. Pity the money didn't get spent on communication, communication, communication as I guess he didn't reckon on how hard it would be for a young girl in her GCSE year at school to continue her education.

Vicki has been ill for 6 weeks, and after her health, my next concern is for her education. She is a Year 11 GCSE student, so this is a pretty key year. The hospital of course recognise the importance of this and have their own school within the premises. Vicki's ward has its own classroom, as the children's treatment can often leave them confined to the ward. The school hospital has been very good in providing what classes in can, when Vicki is well enough, but need guidance from her main school to indicate where she is with her studies, and where the priorities are for the coming months.

So far so good? Now here's the thing. The hospital's school have been trying to get this steer from the main school but have hit brick walls. Phone calls, e-mails and faxes have not been responded too. One of the hospital teachers took me aside to explain the difficulty.

Obviously I was keen to intervene, so called the school immediately. Several conversations took place and it would seem that there was some sort of communication break-down at the school and her form teacher was unaware of the hospital's request for assistance. My heart sank. This was very frustrating. Some 24 hours later we are some way to getting coursework sorted, and also there is the matter of a mathematics exam next Friday (Friday the 13th ominously!). Then I discovered there were 2 Biology exams the following week! (Sighs)

I had to ask what dispensations were available to Vicki as she may not be able to take these exams. The school assured me they would look into it. Oh come on guys, protocols must exist for this already? This is only the most important year of her education, so no rush!

Anyway, whilst I am happy that things are now moving, I'm not happy that I've had to spend so much of my time (which is very short in supply) chasing something that I felt should have been automatically sorted. Obviously I had higher expectation of education, education, education that Mr Blair did!

The journey continues

2009-11-05T11:37:00.002Z

Now we're back in the regular routine, but this time around there is a different feel about proceedings. This time, the chemotherapy seems to be geared around smaller, sharper doses, and some of this is administered by 'pushing', which is injection into Vicki's central line, instead of via a pump. Some is still administered using a drip, but unlike previously Vicki is not permanently connected to some drug or another. This gives her greater freedom to move around the ward. The chemotherapy is leaving her a little lethargic and has suppressed her appetite a little. These are normal side effects, which we need to watch carefully. The harsher side effects, if they come, are more likely after a week or so.

Part of monitoring the effects her treatment is having on her liver and kidneys is that any of her output has to be measured and tested. Without being too graphic, this means taking the output to the sluice room where the medical staff do what they need to do. This is quite a strange thing for any parent (especially of a teenager!) to do, so I always find myself looking around at just about anything else to take my mind off the job at hand so to speak. Whilst on one of these visits to the sluice room, I happened to notice a sign on the wall. It was a "Bristol Scale", which I have so say, broke the tension of the moment and made me laugh out loud. I urge you to google it and not have some kind of reaction!

The Media Merry-Go-Round

2009-11-04T12:13:00.006Z

Yesterday was mad. That is the only way to describe it. We'd spent some time trying to raise the profile of Leukaemia and were able to get some local publicity.

Yesterday we got a national breakthrough and the horse bolted out of the stable at Grand National pace! It all kicked off with a piece in the Daily Mail. Then came local TV, National TV, National Radio, Local Radio, and get this International web sites and this morning, International TV. What I have unleashed :-).

We just so thrilled that Vicki's story is generating so much interest. Ultimately the more the word about Leukaemia gets out there, the more people may think about donating to Leukaemia and other cancer charities, the closer we may get to better treatments and cures.

I'd like to thank all sections of the media that have shown an interest. I know most of the focus is around Vicki coming out of a coma, but there is so much else to tell. I have many concerns over local provision of care, hospital car parking charges, parental leave and so on to campaign about, but you have to start somewhere I guess.

First Home Leave

2009-11-03T11:40:00.006Z

The last 5 days Vicki has been at home, and it's been so lovely so have her around. She tells me the best thing has been sleeping in her own bed. For the first time she's had some respite from the constant noise of a busy hospital ward.

We've not been entirely hospital free though, we needed 2 visits back to the Royal for medication, and 1 visit to Glenfield for an ultrasound on Vicki's heart, which I'm glad to report was fine.Now Vicki's back as an in-patient, and is settling back into her routine, I'd thought I'd take some time to reflect on our break from 'the cubicle'!

Vicki's been gradually rebuilding her strength. Having spent 5 days in ICU, and the following 2 weeks confined to her cubicle, her muscles have not had much work to do. Whilst in hospital the physio would regularly visit to work on her muscles. Some work on the Wii, and a few shopping trips started to build both her strength and confidence up. Every day has seen some marked improvements in her condition, so we're hoping that the chemotherapy won't quite be so bad for her this time around as she's starting from a higher point in terms of her immune system.

It's also nicer to come into hospital as a planned visit rather than as an emergency in ambulance as it was last time. We all feel so much more relaxed with the whole process now. There's no room for complacency though, the fortnight ahead will be tough.

Whilst at home we had some sickness and some other minor issues, but nothing much to write home about. I spent some time constantly reassuring Vicki, and building her confidence up as it's clear the the leukaemia has chipped away at her self esteem. She'll need lots of visits from her friends over the coming weeks, so come on guys, get visiting!

Now we're back, I'll provide regular updates, I know a few of you have missed them!

OMG

2009-10-29T17:53:00.004Z

I've called today's post OMG, because all I've managed to say today is Oh My God. Finally we got the news that Vicki's bone marrow is good, so the treatment is being effective. But then something that was not quite expected. The doctor told us that she could come home for a short while. Today. The doctors had been dangling this carrot over her since the weekend, but it seemed to be dependent on so many factors, that it was hard to see it happening. Even though I desperately wanted this so much, I daren't want it out loud, and my expectation was that if she did come home it would only be for Saturday and Sunday, and that she'd be back on Monday. So when the doctor said that she could go home today, and stay at home until next Wednesday, I pinched myself, I must be dreaming, surely?

So ever since that moment, I've been saying "OMG I'm taking you home later, OMG, you can sleep in your own bed later, OMG, you can leave the hospital today, OMG you're going home, OMG, OMG, OMG.

After all the anguish and pain of the last 5 weeks, finally something to be REALLY positive about. OMG. I still can't quite believe it. I can't remember the last time I felt this happy. I can't remember that last time I was so euphoric even. OMG. See, I just can't stop saying it!

OK, reality check, Vicki still has loads more chemotherapy to come, and we've got a couple of out-patients appointments in the next few days, but she's home, until next Wednesday.

Oh my god, lets all drink to that. As she's going to be home for a while, I'm going to take a break from the blog, at least until she's back as in patient. In the meantime, thank you all for your support, and thank for reading.

Lets go round again

2009-10-28T13:27:00.004Z

Yesterday Vicki was in theatre, and today she goes in again. Unlike yesterday though, this time she's not having tests, Vicki is having a new Hickman line fitted. Given what happened last time, obviously this feels us both with a degree of trepidation, although the chances of complications are low. Lightening doesn't tend to strike the same place twice as they say. Plus, this time around, Vicki has some semblance of an immune system which was sadly lacking before so I hope her body can better deal with the line this time.

Vicki is very bright in herself, and remains chatty and upbeat. This being her 6th surgical procedure of her illness she seems quite well adjusted to the surgery she is about to have. As I'm typing this, she is sitting up in bed making friendship bracelets. We're chatting and sharing jokes, and looking forward to the possibility of her coming home at the weekend or just after.

We still have no news on the bone marrow or lumbar puncture. I will post something as soon as we know.

The eagle has landed

2009-10-27T13:34:00.003Z

Today Vicki is going for her second bone marrow sample and lumbar puncture. These procedures are vital in assessing the true effectiveness of the initial burst of chemotherapy, and in turn these will indicate any future treatment plan, and her likely prognosis. Needless to say, until the results are known, Tracey and I are on tenterhooks. It's also a shame that Vicki has to be nil-by-mouth when she's been making so much progress to eat properly.

I've had a little bit of a change from the usual routine today, as my mum was due back from the US of A. Her flight was due in at 6:20 this morning, so I had a really early start to get to Heathrow to pick her up. By all accounts she had a really nice time, although she felt guilty for enjoying herself with her granddaughter being so ill. It's nice to have her back in the UK, as I've been missing her emotional support, especially last week when I was at quite a low.

The quest for Kentucky

2009-10-26T15:48:00.004Z

Vicki is still progressing well. We spent some time in the day room, and chatted for hours. It was a lot like having my old Vicki back. We played Newmarket for some chips that I'd found in the toy cupboard. We watched the X-Factor and bemoaned the Twins STILL being in the contest. Ahhh, happy days.

As the evening drew on, Vicki wanted some Popcorn Chicken from KFC. So having Googled a couple of KFCs in the vicinity, I found a weakness with our reliance on the Internet. Unlike Burger King's web site which offer details of opening times, KFC's did not. So, yes you guessed it, when I arrived at KFC it was shut. Then I found a weakness with my reliance on the Sat Nav on my phone. Firstly it wouldn't pick up the satellites so I didn't know accurately where I was, and secondly, the usually reliable "find my nearest" suggested the nearest KFC was 4 miles away. A little far to walk.

Eventually, due to my tenacity in not wanting to let Vicki down, I found another branch of KFC that was open. However, the front door was shut, but I noticed that the Drive-Thru was open. So I joined the queue of cars on foot and waited my turn. When I arrived at the window, the assistant looked me up and down and asked where my car was. I jumped back startled, and shouted "Oh my God, where's it gone, you can't trust anyone round here..." Not sure if she saw the funny side of this.

Having obtained the aforementioned chicken I made my way back to the hospital. A round trip of about 75 minutes. But boy it was worth every second to see the look of delight on Vicki's face when she started eating it.

This morning, now free of her usual array of wires and tubes, we borrowed a wheelchair and went for a wander. I showed Vicki the sights that had become so familiar to me over the last 4 weeks. The canteen, the cash point, WH Smith and so on. Then we went where Vicki's not been for 4 and half weeks. Outside. I tried my best to time this foray into the real world with Tracey's arrival, and sure enough, just as we got to the car park, Tracey pulled up. So there we all were, outside. It's funny how the simplest things can make you happy.

The focus changes

2009-10-25T14:49:00.004Z

Vicki's improvement continues. Given the incentive of a home visit, she's been able to wean herself off of the intravenous feed that she's been dependent on for the last 3 weeks. Initially she tried fortified milkshakes, but these just made her sick. But her determination, perseverance, coupled with mine and Tracey's encouragement (which I'm sure Vicki thinks borders on bullying) has achieved what I didn't think possible only a short while ago.

Yesterday one meal. Today, at the time of writing, Vicki has had both breakfast and lunch. Much to our surprise she's now been taken off all her drips, so she's got a lot more freedom. The defeat of the infection means that she can now leave the ward and sample the world beyond. I'm sure she thought it didn't exist anymore, as she's not seen outside the hospital for over 4 weeks.

To see her now is such a transformation, there is colour in her cheeks, and she's quite chatty, and sharing jokes with us all.

Next week is when it all happens. She is due to have a new Hickman line fitted, and she will have a bone marrow sample taken along with a lumbar puncture. The latter two will tell us how successful her treatment has been, and therefore the all important prognosis, so although I'm overjoyed with her progress, I'm minded not to get too carried away, we're not out of the woods yet.

Yesterday also gave rise to the realisation that Vicki is not my only child with problems. Very easy to forget when Vicki's problems are so severe. Samuel was due to stay at his Auntie's for half term, but sadly he had an anxiety attack when he got there, and I had to bring him home. A 280 mile, 7 hour round trip that I could really have done without, but, hey, c'est la vie. Just when I thought I could have a break from all the worry too! I must have been really bad in a previous life!!!

The littlest things

2009-10-22T23:52:00.004+01:00

This was originally going to be my post from yesterday. Whilst all the medical signs were good, Vicki was so low yesterday that I was really concerned for her, because the body cannot exist without the mind. In the end I thought better of this post, Vicki's low state had made me quite depressed myself. However now she is out of isolation, and starting to eat, I feel positive enough to share with you what I had written in a really dark moment.

Those of you who know me, will know that I am a big Lily Allen fan. As I listened to her first album in the car on the way home, not the for the first time, I found myself rewriting song lyrics.

Here's my version of Lily's classic.

"Nick's Littlest Things"

Sometimes I find myself sittin' back and reminiscing
Especially when I have to watch other siblings 'dissin'
And I remember when you started speaking calling me your Dada
All the silly stories, cheering you up when you were sadder
I'd make up silly voices throughout your childhood
I don't why I did this, I just knew that I should
You'd spend the spend the whole weekend surfing in your own room
I was just so happy coz you could always lift my gloom

Dreams, Dreams
Of before you had Leukaemia
Dreams of me and you
It seems, it seems
That I can't shake those memories
I wonder if you have the same dreams too?

The littlest things that take me there
I know it sounds lame but who can tell
I know its not right, but it seems unfair
Reminding me of when you were well
Sometimes I wish I could just pretend
Even if only for one weekend
So please don't tell me
This is the end?

You made me tea in bed, just for Fathers Day
Don't know how you remembered that I liked Earl Grey
I'd take you out shopping and all you'd buy was long socks
As if you ever needed any, your drawer was always rammed chocked
The first time that I took you off to school
I could tell you were nervous, so I played the fool
When you were feeling down, I made that face I do
There's no one in the world that could compare to you

Dreams, Dreams
Of before you had Leukaemia
Dreams of me and you
It seems, it seems
That I can't shake those memories
I wonder if you have the same dreams too?

The littlest things that take me there
I know it sounds lame but who can tell
I know its not right, but it seems unfair
Reminding me of when you were well
Sometimes I wish I could just pretend
Even if only for one weekend
So please don't tell me
This is the end?

The world gets a little bigger

2009-10-22T12:02:00.003+01:00

Something really positive to share. Vicki is finally out of isolation. At long last, after what seems like forever, she can leave the confines of her cubicle. This is not just a relief in terms of Vicki's immediate environment, but also because it means she's conquered the infection she had. And in turn that means that her body is fighting back. Hallelujah. A real light is shining now. The immediate fog that has been hanging over the world is starting to lift.

Hopefully if her friends start to feel better, they can visit, and then we can see Vicki smiling again. If we can crack the eating and drinking, then we will have truly turned a corner.

More of the same

2009-10-21T11:22:00.003+01:00

There's not much to tell today. Vicki had a quiet night, and is still quite sleepy. She does look better, but I think she needs convincing of this more that I do! We're going to get her to do a little more physiotherapy to keep her muscles working. Her weight is still going down and whilst this is an obvious concern, we're sure that this will return to normal once she starts eating again.

One step at a time

2009-10-20T07:53:00.003+01:00

On the one hand, Vicki is very down. Her mouth is hurting, and she's finding it hard to speak which makes her feel frustrated when no-one can quite get what she is trying to say. She's lost her temper a few times which is entirely understandable. She's also fed up with all the repeated procedures that she faces, like yet another chest x-ray yesterday.

On the other hand, the important numbers of her blood counts are increasing. Visibly her skin is improving and the ulcers in her mouth are healing. It's hard to convey to her that her progress is good because it her eyes it's one crisis after another, and just as one thing improves, something else goes wrong. What didn't help yesterday was that I went into the games room to get something to amuse her, and was told that I couldn't take anything that couldn't be cleaned due to her isolation restrictions. I do understand the importance of these, but I also care about Vicki's mental state, and you would've thought the hospital might have come across this scenario before and have something to entertain her with, wouldn't you? As it happens there was, just the 'play specialist' was unable to offer any of them. Fortunately another 'play specialist' who specialises in older children was able to offer DS games and DVD's.

I've bitten my tongue all week, but this has been winding me up all week so I've got to have a rant about it now. Cheryl Cole. I was incensed by her breaking down crying in the X Factor, because she's got it hard on 'Diva' week. Well let me tell you something love, you want to try swapping places with my daughter, then you'll know what hard is. It must be really hard to have a well paid job, really hard to be on the telly and in the newspapers all the time, really hard to have a premiership footballer for a husband, really hard to get some free airtime to promote your new single, really hard to do the job that you are actually being paid to do. I really feel for you love. Any time you want to swap, just let me know, I'll sort it out.

Look at what you would have won

2009-10-18T11:33:00.003+01:00

Yesterday was a much calmer day. I don't know if this is a result of 'Black Thursday", but Vicki was very quiet and after a period on her new laptop seemed lost in her own thoughts. This echoed back to just before and after her ICU event, when she was dwelling on her condition.

Determined not to let the cogs that were whirring in her head spin any faster I knew I had to find a distraction. I headed for the games cupboard and found 'Upwords'. I decided that we would play this with a twist. Bonus points would be added for proper nouns, acronyms, slang, deliberate misspellings, made up words, and most of all anything that made us laugh. I also decided that the value of the points would be determined by the opposing player. Finally a special creative bonus for a word that was placed with no connection to any other word. Yes, we took the rules of 'Upwords' and tore them up.

In fact so much fun was had playing this version of the game, we joked about marketing it! We had visions of "The World OddWords" championship taking place, and selling the TV rights to the company who were prepared themselves to break all the rules in showing it, like inappropriate product placement, credits at the beginning, mixing in other game show formats to deliberately confuse the viewer, stealing someone else's theme music, placing flashing text over the key things the viewers were watching etc.

Whilst this was entertaining it was also clear that Vicki was not always entirely engaged in it, and was often drifting off again. Still a long way to go, but we all need to pull together to keep her upbeat. Incidentally, for the record, Vicki won by a country mile. Not that I'm a bad loser, but this was in part due to one of the nurses randomly awarding Vicki 100 points! Sometimes you just can't win!

The storm passes

2009-10-17T15:09:00.003+01:00

Vicki had her operation yesterday is now resting. She's thankful that Thursday's debacle is now over, and although it's a set back, we're back on the road to recovery.

When the doctor came to see her this morning, my NHS job means that although I am not a medic, I've picked up enough to know what questions to ask. The doctors will say encouraging things, but as a man of science I want evidence. How do her inflammation markers compare? What's her white blood cell count? Is her temperature still spiking?

I can tell you that although below their highest rating, her inflammation markers are steady. Her white blood cell count which had been nil, is now rising steadily. Her temperature is still spiking but not as often, and not as high. OK, I will take this as steady progress.

I spoke with the nurse involved in Thursday episode, and she was apologetic and sympathetic. I won't be making a formal complaint, but have asked that an "Incident" report is raised. Again from my insider knowledge, this will carry more weight than a complaint. Lets hope the whole sorry affair can be put behind us now.

Pressure point: The volcano erupts

2009-10-16T09:32:00.004+01:00

Originally I had planned to do a light hearted piece today with nice pictures of Vicki with her new laptop. However, yesterday's events have left me so angry that I've decided to change tack. As an NHS employee myself, I'm painfully aware of the fantastic job the staff do, in trying conditions, on limited pay. No matter what you read or hear from the politicians there is not enough money going to the front line. I don't to want sound like I'm getting on my political high horse, but I mention it, to put into context what I am about to tell you, and to convey the sense that despite what I have just said, and completely contrary to my loyalty to the NHS, Vicki was completely, totally, and utterly let down by those very NHS front line medical staff.

Yesterday started so well, as reported in my entry of yesterday. From Vicki's point of view, I'm sure you'd appreciate that she is suffering enough. Yesterday was a catalogue of failures by the day staff on the ward, but I'm only going to highlight the worst one on here. At lunchtime, I popped out into town for my lunch. Whilst I was gone, Vicki needed to use the toilet. She's very weak, and confined to her cubicle so she needed to call the nurse for help. Then, inexplicably, the nurse left her. Vicki being a strong, independent girl wasn't phased by this, and got up off the toilet, but lost her balance, fell, and ripped out her femoral line. Naturally this really hurt and she screamed which thankfully got the attention of the nurses as she was nowhere near the emergency cord. I got back to the ward just as they had dealt with the immediate aftermath of the situation.

So now Vicki's faced with a real personal trauma. She has a fear of needles, and of course she realised that she'd need a cannula inserted somewhere, and of course would now face further surgery to have a new central line fitted. Both scary thoughts for her to deal with. Every time I've seen her face a needle of some description it's always the terror of what is going to happen that I have to deal with, holding her, comforting her, helping her through this unfortunate but necessary event. To top this, they wanted to cannularise her in the foot, and she was particularly spooked out by this. The first attempt failed. I had to step in and tell them to stop and give her a break as she was so traumatised. A second attempt followed, this time in the ankle and this too failed. Once again, and I had to intervene to give her some time to recover from the fear. The pain she was in and the doctor fiddled around with the needle still haunts me. A third attempt, this time in the hand, failed once again, and yes, I had to tell them to stop. The forth attempt was extremely hard, as she'd only had 10 minutes to recover from the last attempt and the staff refused to give her any more time. To add to her anxiety, they now wanted to insert the cannula in her right arm, where she has a bad eczema rash, she protested but the doctor ignored her and carried on regardless. Whilst initially this looked to be working, and provided enough blood for the pathology lab to test, when flushing the cannula it was clear it too had failed. Off the medical staff went to discuss how to proceed.

Only having one working cannula, they didn't have enough entry points for the drugs Vicki needed. When the nurse came back into the room, she told us they wanted to inject Vicki with a device under her skin to control her pain. This being a needle, and four failed needle attempts being fresh in her mind, she couldn't face another one, and I had to demand that another way was found. I pleaded with the nurse to give her pain relief orally. She didn't think that this was a good idea. I firmly demanded that they search for another route for the medication. It was agreed, they could give her morphine orally, and bless Vicki, hard though this was, she swallowed the tablets.

That should have been the end of the trauma but when her blood products arrived the nurses couldn't get the one remaining cannula to work. Repeated attempts by the now evening shift staff failed and thankfully for Vicki's stress levels, they gave up. She's now on the emergency list for a new line toady, but this also means that they have no idea when she'll be able to go down to theatre. The last time this happened they kept her nil by mouth all day and didn't take her down to theatre until early evening. So all in all, the poor kids been suffering, and I mean really suffering. On a scale of 1 to 10, she suffering about 10,000. I thought I was already on the edge of the mental precipice, now I think the ground below my feet is slowly eroding. And just to remind you, my GP says I'm OK!

I thought I'd had enough to deal with today, but on top of this, and while all this was going on, I've had to deal with the gossip and Chinese whispers of her peer group who clearly are not equipped with the social skills and intelligence to realise that we all need to pull together to help Vicki. Instead of this, I was faced with one 'friend' cross examining me, "what I have said about her". Yeah like I needed that. For Christ sake you lot GROW UP. Let me make one thing crystal clear to everyone of her age. Vicki is SERIOUSLY ill, and doesn't need you all fighting and blaming each other, or me, for whatever it is we've all supposed to have done. She needs to see ALL her friends, and all her friends are welcome to visit, but because of the numbers, we have to manage it. Vicki decides who comes and when, and she has NEVER said anyone CAN'T visit. The only time her mum and I said no-one could visit was when she was in Intensive Care (and actually that was the hospitals rules not ours, even her brother couldn't visit then).

So for her sake and mine, put up and shut up.

Claustrophobia

2009-10-15T11:12:00.002+01:00

Today is a day when I feel like the walls are closing in around us. After a goods nights sleep for both of us, we settled down to watch a film (17 again). Though I'm enjoying it, it's also a poignant reminder of life's past mistakes, and a desire to live your life again and make better decisions, although of course I'm not sure what decision I could have made to stop Vicki getting Leukaemia. Doesn't stop you thinking though.

So as we settle down to watch this Zak Efron masterpiece we were constantly interrupted. First by constantly bleeping alarms from the drips that no-one seemed to care about. Then the physiotherapist comes in, then the cleaner, then another nurse to finally see to the bleeping machines, then she needs a wash and a bedding change. And we're only 25 minutes into the film.

I'm still desperately looking for signs of improvement, still searching for positive signs. Still looking for answers, but all of these quests are sadly fruitless. Last night there was a baby crying on the ward, and you have to think "Jesus Christ, this is hard, but how to you cope with a baby with cancer?". I went to see my GP yesterday, and he told me that I wasn't depressed and that I was coping OK. THIS IS OK? Bloody hell, you're telling me I could feel worse than I do, really?

Vicki is still quite upbeat in herself, but you can see in her face she's fed up with it all. The few days that the doctors keep repeating to us never seems to get any closer.

Ah, I've just realised, I promised you a reveal today didn't I? The generosity of the local benefactor meant that I was able to get Vicki a laptop, and a years broadband access. Ironically the bag that I bought for her laptop (which I got at the same time as the laptop) was too small, so I got an old one that I had, and and spend an hour making it look as good as new. Then I got some purple ribbons and bows, and decorated the bag. I finished this off with a tatty teddy get well balloon. Her face was a picture. I will publish that picture at some point. Her face lit up, and she was overwhelmed by the generosity that allowed this to happy. In fact I'm typing today's entry from the very same laptop. OK, I know, it's not for me, but I couldn't resist!

Anticipation anxiety

2009-10-14T15:54:00.006+01:00

Firstly may I apologise to you all for the poor quality of yesterday's 'early edition'. My editor-in-chief (yes that's you Debbie) pointed out a number of errors which I correct later. Missing words, poor grammar, made up words! Those who read the 'late edition' please ignore this paragraph!

Vicki is much the same today. She's still fighting the infection, and had a bit of a rough night. She's quite bright in herself and I've got a bit of a surprise for her later. More news on that tomorrow. (Can't believe I'm employing cheap devices like that to keep you coming back for more!).

I'm starting to get quite nervously anxious now. Trouble is, I've been reading the booklet that the hospital gave me about Vicki's condition, and it seems that her prognosis will be determined by how she responds to this initial burst of chemotherapy treatment. Currently we are in a phase of recovery from the chemo, and once we're through this the medical team should be able to asses the effectiveness of the treatment. This is starting to eat away at me as you don't want to hear the treatment is not working, but at the same time, you desperately want to hear that all is well. Every day I look for my own indicators that she is improving, but with the infection still present, and the doctors scratching their heads it's becoming increasingly difficult to remain positive, even though there are no reasons per se for me to be negative. Sorry I went a bit Latin then. That's a sign of nerves if ever there was one. I worry ergo I am. Oh my deus there I go again... et again. Absit invidia!

Charity begins at home

2009-10-13T14:11:00.002+01:00

I'd just like to start by thanking the Townsend's for their kind messages of support for Sam.

There is continued concerned over the infection which Vicki is still carrying. Whilst less frequent, Vicki is still having spikes in her temperature and the doctors still seem baffled as to the exact cause. Her mouth is very sore and she’s now on an increased level of morphine to help. Progress is still slow, but is still positive. Vicki had a milkshake today, and whilst this may not sound like much, it’s a real step forward. She let me have a sip and it was absolutely delicious. The Children’s Oncology Ward has its own chef so everything including the milkshake is hand made. Whilst I can’t fault the clinical care that Vicki has received, the organisation that runs the hospital’s estate is not quite so good. Vicki has a faulty fluorescent light in her cubicle which was reported last Tuesday. We’re still waiting for it to be fixed!

Today I contacted a local charity for children with cancer, and it looks like I may get involved with them on both sides, so to speak, as a beneficiary, and to help behind the scenes perhaps. This may also prove to be a great way to get something positive from a negative. www.nctlctrust.org.uk is the charity concerned, please give them all the support you can.

On a personal note, my personal quest for a ginger-latte is still fruitless!

The green shoots of recovery

2009-10-12T13:18:00.003+01:00

I'm typing today in a small degree of pain. My consultant likes to use me as dart board from time to time, sadistic lot, consultants. Whilst the nurse was telling me how well I was doing as I was being stabbed with a hypodermic needle into the neck, I now of course have the perspective that however hard I thought this monthly ritual of mine is, it is nothing to what Vicki is going though. Steven Covey writes about paradigm shifts in his Seven Habits of Highly Effectively People book, a riveting and highly recommended read for all you self improvers out there. And this of course is what I experienced. No more will I complain or moan about my own medical treatment, which of course, is still hurting. Sorry I said, no more complaining didn't I!

I feel a couple of positive things to share with you, dear readers. Firstly and most importantly, Vicki is starting to feel better. She's becoming quite bubbly and is engaging more with the world. She's also developed a cutting sarcasm, and biting humour that I'd not seen in her previously. Additionally she's learning to stand on her own two feet, and speak up for herself. Strange bedfellow adversity, it can bring out the best in you. It's a pity you have to suffer so much to get there though. I hope this means that she is growing stronger, and that her bone marrow is starting to produce her own natural immunity. Steady on the tiller though, it's still early days.

I popped into the office today and this was strangely harder that it really should've been. Of course once I was there and being pampered by all and sundry everything was fine. Even the simplest of things seems hard to me in the current circumstances.

The other piece of positive news is that Samuel has finally started going to school. A seven month slog finally over. I may actually get some sleep tonight!