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.

Standing at the gates

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

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

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

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

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

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

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

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...

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

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

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

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

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?

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

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

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

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

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...