Is it really that long since my last update?

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

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!

Time flies, normality slowly returns

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?

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!

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!

They made us wait but finally it's happened!

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

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

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!

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

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

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

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

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!

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!

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...

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

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

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

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

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.