Everything has changed

An update


It’s been some time since I last blogged about Camille and her progress post treatment; it seemed that back in May, updates were becoming more and more irregular and it was a good time to take a break. However, eight months is a long time and lots of significant events can take place, especially when trying to overcome the effects of a brain tumour.


Chariots of Lycra


The last two weeks have seen the introduction of a major step in Camille’s rehabilitation as well as me being able to face up to some ghosts from three years ago by once again taking on the London Marathon.  To top it all off we had a very spotty, special birthday to arrange.



Turning a Corner


It’s funny how things change over the course of a couple of weeks. The ebbs and flows of being a parent are challenging at the best of times and I think that being a parent of an oncology child just makes these waves resonate that little bit more.



Don't Roll Your Eyes


It is Murphy’s Law that as the notification letter for Camille’s next scan hits our door mat; Camille becomes ill, complaining of headaches and lethargy. So, when the thermometer revealed that Camille had a temperature up towards 38.0c, the relief was plain to see.


Drawer Issues


OK, so I’m already a day late from my fortnightly pledge to update the blog. I will of course protest that this is not my fault but the introduction of our wee little man who does tend to spend most of the evening deciding whether he is tired, hungry, happy or a mixture of the three. In fact, I sit here now at 9.00pm with a jolly little boy laying next to me in his cot supposedly trying to go to sleep. He looks more likely to attempt a cartwheel at this moment in time but hopefully the rat ta tat tat of my keyboard will be sufficient enough to send him into an administration induced slumber. He nearly didn’t make it this far.



So Sleepy


My head is swimming; my eyelids are drooping towards my ruddy cheeks quicker than the train I am travelling on towards London. Yes, the initial two months of a new born baby leave you in no doubt that sleep is an important element to anyone’s day.



I'm Back, Again


It’s been quite some time since I last posted a blog entry here on the Camille’s Appeal website. In fact, it was Halloween when I last found a few moments to let you know what has been going on in our lives. The truth of it all is that Camille has been doing well and to update you every week with a short paragraph explaining that there is no change, wouldn’t be useful for anyone.



Trick or Treat


Hayley and I ran into the lovely Sally Warden earlier today and the blog came up in conversation. It is funny how the committed few of you out there still log-in to the website on a Sunday night to read the latest update on Camille’s progress. Maybe I should still try to extract a weekly summary of our activity even if it does run the risk of boring the pants off of all of you. Normality for us is great, but it doesn’t make great reading.



Scan Two


It’s been a really important two weeks for Camille and the family so it’s about time I updated you with what has been happening. Let me cast our minds back two weeks ago today; we were readying ourselves for Camille’s second post treatment scan and the one that is just enough time for things to begin to settle down.



Our Daily Bread


The gaps between scans seem to last forever, but we know that eventually the next one will come around. This week will see Camille go for her second scan since completing treatment and although we are well over two years since that first diagnosis, the anxiety leading to this scan has probably been as bad as it ever has.



Front of the Queue


The smell of fresh plimsolls, the sound of children risking serious injury, sprinting around a packed playground, the air of tension of parents sending their children off to school following a long and arduous summer; the first day of school is nerve-racking for anybody, especially for Camille who has missed so much in her short life to date.



Summer's Gone


The twilight of the summer holidays has smothered us; in just a few days our little chickens will be shuffling off to their classroom from the rowdy playground for a new school year and for Camille it will be a step into a new frontier.





It’s been a few weeks since I last updated everybody with how Camille is progressing. The truth is, thankfully, we are undergoing a period of normality and the frequency of “News” is decreasing to low if not boring levels. However, we are now just a couple of weeks away from Camille’s first day at school and the next phase in her life.


I Love London Town


We’d been in contact with the wonderful Make a Wish charity for some time about giving Camille that wonderful experience that would help get over the last two years of hurt and fear. Last weekend was the day where she finally got to meet …….”Oh Mr Tumble!”



It's the Milky Bar Kid!


Camille is going from strength to strength now that she has been able to get back to a normal life like other children her age; step by step, tube by tube, we are starting to make up a little lost ground from the last two years.



New Beginnings


It’s always a difficult challenge following Hayley’s guest blogs and my struggle with this week’s blog has caused me to be a few days late with this post. Hayley’s emotional statement last week is still a very good indication of what goes through her mind on a day to day basis; she’s still haunted by the events of the past two years, and last week’s post happened to coincide with the two year anniversary of that day when Camille was diagnosed.



Hayley - Reflections


I am in a reflective mood this week as we had the most wonderful weekend, our very close friends and Martin’s cousin, Stevie and Clare got married in Newmarket, it was a wonderful and beautiful wedding and Lucia and Camille were stunning as bridesmaids.  Given the amazing news we had last week, I felt many emotions. 



The Scan


The day of Camille’s first scan post treatment arrived early in the week and although we had stumbled towards this date without the level of anguish that we had expected, it was an extremely nervous time.



The Big Show


The time has finally come for Camille’s first post treatment scan and as we prepare for tomorrow and the possibility of days without knowing either way what the situation is, we sit in the doom and gloom of the horrible June showers waiting for our lives to be laid out in front of us.



You've Got To Pick A Pocket Or Two


On a number of occasions I have been slightly tardy with my blog entry and for that I apologise; this week the accumulation of exam revision and a stag weekend in Brussels have left me floundering for time to type the blog but thankfully, as I fight the nausea of the “wobbly” train to London, an opportunity has presented itself.


Big Green Button


Last Sunday night when I sat down to type the week’s blog I remembered what a couple of friends had said that week, that it was about time that Hayley guest blogged once again. I looked over the living room and suggested that very thing to Hayley. Her reply was that she had already started doing one and she sent me over the paragraphs that she had completed. Hayley wanted me to finish it off but after reading the four or so paragraphs there was no way that I was going to butcher what is a wonderful insight into Hayley and Camille’s life at the moment.



Hayley Guest Blog


Anyone who has regularly kept up to date with this blog will know how hard our journey has been.  Camille has had three major brain tumour resections, over forty doses of chemotherapy, thirty-three rounds of radiotherapy, numerous shunt operations, septic shock, many, many hospitalised infections, acute renal failure, three Hickman line insertions....I honestly could go on, the list of procedures Camille has endured and suffered seems endless, the one statistic that astounds me is that she has had around sixty general anaesthetics in the past twenty-three months. 





Can you imagine having the sole wish to be able to have a normal, run of the mill, boring week. After two years of an intense schedule with no pattern, reason or way out, we finally had one of those weeks. It’s great for us as a family to be able to report this ordinary occurrence, but for the average reader out there, you will be forgiven for nodding off.



Proper Princess


The thing that I have been most concerned about since we landed on the tarmac of Gatwick Airport two weeks ago was Camille starting pre-school and how she would manage. On Wednesday of this week, the day finally came around for her to strap on her rucksack and go to the pre-school that Lucia had attended just a year ago.



Ja! Beefenkucher


You may be wondering why the blog is a little late this week. Well, I have been a little forgetful if I am completely honest, but now that I am back at work, my mind is filled with lots of useless facts that have no bearing on my home life.



English Rose


At 8.30am this morning, the solid thud of tyre on tarmac meant only one thing, our journey in Jacksonville, Florida was over and we were back in Blighty. We have pretty much been resident in the United States since early January and if we are all completely honest, I think we are going to miss the place and the people.



Windy Miller


The curtains flapped violently into the bedroom, the apartment resonated with a howl that haunted my early morning slumber. Slowly I woke realising that window ledge ornaments were about to fly off into the room and crash onto the floor. I hopped up to close the bathroom window first and then all other gaps that led to the outside world. We were in the middle of our first Florida tornado and the girls slept through the whole thing.



One Small Step


It’s amazing how much can change in just ten minutes. Today, as Hayley had her Mother’s Day sunbathe, Camille went from a tentative stroller to a confident walker. This could be a major change in our lives; with Camille walking she can hopefully gain some more independence, play with her cousins and friends and get things for herself, probably sparing a lot of the frustrations that make her angry each and every day. Today could be a major turning point for Camille; we all hope so.



Prudish Prune


What’s the one thing we British should have learnt over past twenty years? That’s right; when in the sun ensure you cover yourselves suitably in sun tan lotion to avoid burning your skin. Six weeks into our Florida stay and I am finally moving like C3PO whilst lighting up any room with my red raw back and belly. You may have noticed that I didn’t mention my shoulders? That’s because I was clever enough to smear factor 70 over the very top of my torso, so now I am left with two white stripes across the top like a proud military officer (that’s if they have stripes on the shoulders, I don’t know).



The Front of the Queue Harry?


We are now truly in the groove over in Jacksonville, with treatments flying by and the treatment plan clear in our minds. We’ve also got pretty use to life around Southside and the daily routine of going into the Proton institute, as well as the great weather that has welcomed us since our return to Florida in late February. It should have been an easy week but again it was a mixed bag.



It's Not Easy


Sunday night and all seems a little more normal in Jacksonville than the last week would have suggested. Camille’s second week of treatment is over with and after last weekend’s scare about her shunt, we’ve been glad to have our little girl back, even if it has come at a price, the re-introduction of her NG Tube.





This is the week that we finally got Camille started with the long awaited Proton Therapy, the week that we have been building towards since Mr Mallucci came out of the operating theatre in mid-October and said that she wouldn’t need the third surgery that was originally planned. Well, as we all know, things haven’t run as smoothly as we would have liked and the third operation did end up taking place in an impromptu manner; nevertheless, we’ve made it, finally.



Lift Off!


After last week’s bombshell that treatment was not due to start until the 1st March, we had another one of these “filler” weeks to try and get through without the kids becoming too bored and too tetchy.



Ewe Essay!


Soon after writing last week’s blog, Hayley loaded Camille into the car once again and made the 250 mile trip up to Alder Hey for her stitches to be removed and a final CT scan to ensure that Camille was fine to fly. The plan was that Mr Mallucci would arrive at the hospital around lunch time to take a look at that scar and scans and give his approval; I would then book the flights.


Oh No! Hayley's Blogging Again


Ok, so he doesn’t know it yet.  But I am writing the blog this week, it’s been almost a year and let’s face it, a change is as good as a rest.


Return to Alder Hey


After just a week at home we were heading back up to Alder Hey, just over three months since we saw our little girl battle through the recovery of two major brain tumour resections.


Couldn't Get To Sleep Last Night


Within hours of writing last week’s blog, Hayley was on the phone with the very helpful (yet very systematic) Virgin Atlantic team, booking our flights home. Within twenty-four hours of writing the blog, we were sitting in our seats on the 19.50 flight back to London Gatwick. Our week has moved extremely quickly, at times too quickly for my liking.



Hakuna Matata


It seems only appropriate that after missing my first week since I began writing the blog nearly two years ago, I should apologise. The reason is an honest one; as we had a week free in Florida we drove down to Orlando and visited Mickey Mouse and his friends in Orlando. You may be thinking that “they must have internet at Disney”. Well yes they do, but as Mickey Mouse stings you for every penny you have, I refused to pay the extortionate fees for our big-eared “pal” to switch the switch that connects me to the web. Now that I am free to breathe oxygen without fear of a bill, I’ll revisit the last two weeks using the power of sub-headings.


Living in America


Weeks of waiting and then all of a sudden we are dragged across the Atlantic to our new base for Camille’s last stage of treatment, Proton Therapy. We knew it was coming and everything was in place but even with all the preparation in the world, sometimes you can still be surprised.


For Auld Lang Syne My Dear, la la la la la la!


As Hayley pointed out last week, each of my most recent blog posts have begun with the phrase “With Florida just around the corner”; I’m afraid today I cannot offer any further update to when we may be leaving.


It's a Cracker


With Florida just around the corner, potentially before I return to work after the Christmas break, I had a manic run up to Christmas with a diary so packed with appointments that it put the cram into Cramberry Sauce [sic]. It was quite a relief that the last two days before I broke up for Christmas was spent at home catching up on paperwork and updating all of my records so my colleagues can understand what’s going on while I’m away.




Brace yourself; do not get too excited, but this week has probably been the dullest week you will ever experience. There’s been no chemotherapy, Lucia’s been at school, I’ve had a busy week at work and Hayley tumbled down the stairs on everything apart from her feet; the cornerstone to any normal week in our household.


Skate, Skate, Glide


Camille's tightrope continued throughout the early part of the week. Her CRP levels were indicating that she had an infection, yet her temperature had remained normal. With our Christmas Ball and a trip to Lapland UK coming up we really wanted her to keep at bay whatever was threatening.


Snow Joke


The week started with Camille and Hayley in hospital after a weekend of dropping in and out of the ward to get regular doses of antibiotics. The hospital couldn’t narrow down what had caused the problem in the previous week, but with Lucia, Hayley and myself all falling foul of the sniffles, or in my case “manfluenza”, I think it was fairly obvious.


Infection? Oh Yeah


It’s now only two weeks since Camille started back onto the chemotherapy, but already we’ve slipped back into the old routine with all of the added complications that come along with an immune suppressed child.


Back to the Old Routine


This week was the week that Camille started back on chemotherapy, a week that we didn’t want to come around again, but nonetheless, something that we knew had to happen. The thing is, life isn’t as simple as we’d like, it’s almost like somebody, somewhere, enjoys making life as complicated as possible.


Catch 22


Without having heard anything of any note from Addenbrooke’s since we returned from Alder Hey, we had no clue as to whether the application for Proton Therapy had gone off to the NHS Proton Therapy panel. As far as we were aware, this was the next stage of Camille’s treatment and we were led to believe that Camille was pretty much a certainty to be accepted and treated in the US.


FISH! AHA! He Saved Everyone Of Us


Hayley and I are pretty hopeless at waiting for most things and at the moment we have to fight all of our natural instincts to chase by sitting tight and waiting for the answer from the Proton Therapy panel to see where we go from here. Of course the week began with Camille and Hayley stuck in a hospital room, but how many weeks over the last eighteen months haven’t?


Fungal The Bogeyman


For anyone who has been on a two week holiday and has struggled to get back into work on your return will know a little about what I mean when I say that this week has been a challenge. I’m certainly not comparing our three weeks in Alder Hey to a holiday but the principle of returning to work after a spell away is similar. You know how it is, you blunder aimlessly from meeting to meeting, task to task without really knowing what the goal is, or in our case what the point is. Alder Hey has been a life changing experience for us all and now most other things seem miniscule in comparison.

Sir Mallucci


Following the second operation we found that Camille had to go through many of the same challenges that she faced after her initial surgery. She didn’t seem in as much pain this time but certainly the control of her right eye, the affect of the anaesthetic and the constant itchiness of the healing scar were enough to make her week an unpleasant one.


Deja Vu


After the remarkable improvement that Camille had experienced last week we were pretty free to do what we wanted during this week. With the second of three operations scheduled for Thursday we wanted to get out of the hospital as much as possible knowing that the days following surgery were going to be tough for Camille exactly as they were two weeks prior.


Sitting On The Dock Of The Bay


If there was such a thing as a licence to be a parent, the last week should be the test to see whether you were fit and proper to take on such an important role. Every conceivable emotion has been pushed upon Hayley and I; and as we settle into another week and another major brain operation, I feel we have matured once again, even more than we have been required to do over the last sixteen months.


The Operation


I hope that no one reading this week’s blog has to endure what we’ve been through in the last few days. I’ve been meaning to write a post for the last two days but with events unravelling before us, the only thing I have been able to do when I arrive back to my room is to sleep. To explain what has happened I’m going to go back to Tuesday where we had a final appointment at Addenbrooke’s.




As the weeks ticked along we have now reached the final few days before Camille goes to Alder Hey for her operation. All of this time it hasn’t seemed real and now all of a sudden we are just days from the most important moment of Camille’s treatment.




Camille has now been off the chemotherapy for over two weeks and although the hair is yet to start growing back, the sickness has generally subsided and she is able to put on some weight. The problem is that she isn’t just putting on weight because she will look better for it and it will build her strength up; she’s putting on weight in readiness for her operation. Everything we do at the moment is all leading up to the operation with no thoughts post September breaking through to our current thoughts.


The Dust Settles


With all that has been going on with Camille this week it would be easy to forget that her big sister was turning five. For a family like ours, no day is normal, but for your children and for each other we would love to make birthdays special. I was thankful to my boss for cancelling a meeting I had in Manchester scheduled for Lucia’s birthday, I can’t imagine being anywhere else than at home for her, but sometimes I am at the mercy of other people.


No Choice


For some time, I have tried to maintain the blog on a weekly basis, but due to the significance of today’s meeting with Amos I thought it would be appropriate to update everybody on what was discussed.


Long Distance


The days and months have passed since Camille was diagnosed and chemotherapy commenced; now, as we move towards the end of this phase of treatment, something inside of me is almost longing for the security of week on week hospital visits. As the bank holiday weekend ended, we used the short working week to travel to Liverpool.


I Can See Your House From Here


Being rushed off our feet is a common occurrence for us since forming the Camille’s Appeal charity and of course since Camille was diagnosed. With hospital trips, infections, fundraising events, work and normal day to day life with two kids, it is very difficult to ever sit down and enjoy a relaxing book or watch TV without something drawing your attention away from the programme you are watching. This weekend was our big Bungee Fun Day weekend and once again we were bound to be exceptionally tired by the end of it.


Ummmm Nutty!


After a week off chemotherapy and the meeting with Mr Garnett and Amos, Camille began her next cycle of chemotherapy this week and potentially the last before surgery. Each of these cycles lasts for four weeks which includes three consecutive weeks with three days of treatment in each week. The fourth week is a rest week so that Camille’s blood levels can recuperate before the next cycle.


I do, They do, We all do!


Monday morning saw Hayley and I take Camille to Addenbrooke’s for her kidney test and MRI scan. On this occasion we had been dealt the perfect scenario where our scan would be viewed and discussed by Amos and Mr Garnett that very day and we would be able to stay on for a meeting in the afternoon. The morning and afternoon was like a military operation trying to get each element of the two tests organised in the correct order. The initial hiccup occurred as the doctors tried to get a cannula into Camille’s foot. She was beside herself with fear as the doctor poked and prodded her foot with the small needle.




Some weeks fly by and some seem to last forever. This week has most definitely been the latter. Hayley had to take Camille in early this week for chemotherapy and spent all day at Addenbrooke’s with her. While I was at home working I had a text from my brother-in-law asking if there was any news on Hayley’s brother. He had been having headaches and was being sick over night so I assumed that was what Shane was asking.




My mobile phone's alarm sounded at 5.10am ready for me to head off towards Bournemouth. Hayley was still a couple of hours away from waking up and after the night before, I was particularly nervous about leaving the house. The previous night I had run through as many scenarios as I could possibly imagine and setting off on time seemed to be the right option. My theory was that I could always turn around and go home if I needed to but I couldn't make up the time if I'd stayed at home until everyone was awake.


Where To Go?


We’ve all felt low from time to time; like there is nowhere to go, no point to trying and that no matter what you do, there will be no preventing the worst possible outcome for you in that situation. I say “we’ve all felt” it, but the chances are very few of us will have even scratched the service of what it is to feel so low, that even the smallest change in circumstances, or a high pressure incident, will be the straw that breaks the camel’s back and cause a full scale breakdown.


Patterned Dress


We all learn from our previous experiences and the events that have scared us down to the core of our bodies rarely happen again due to our ability to carefully avoid a repetition. So, this week saw Camille’s first infection since the septic shock episode in May, and this time we were quick, cautious and thorough.


Here, Have a Banana


It may well be hard to concentrate fully on the blog this week as my eyes flit between my laptop screen and the World Cup Final flashing in my peripheral vision. It’s a welcome break sitting down in front of the television after another hot day with the kids.


Wanna Watch the Football?


After only a week on the new chemotherapy protocol, it seems that we have already managed to get into some sort of rhythm. In all fairness it’s not actually me that has anything to do with the rhythm as Hayley now tackles all of the hospital visits by herself with Camille, an arrangement that we just had to put into place after Camille’s septic shock episode. So now, three times a week, Camille goes to Addenbrooke’s for an hour to have her chemotherapy and then she is free to go until the next day. It might sound less restrictive than being an inpatient and in many ways it is, but when you are driving for twice as long as the treatment actually lasts, it is not a pleasant day.


It's the Italian's fault


The agonising wait that ensued on Monday continued into Tuesday. It does seem crazy that with today's technology and skills that we still have to wait so long for an accurate result from the hospital. I dropped Lucia at school on Tuesday morning and arrived back at home talking on the phone to my colleague; as I pulled up onto the drive Hayley walked out with the phone; on the other end was Amos.


Yes, Yes, Yes, Yes, No


This week was always going to be an important point in Camille’s treatment as we were due to get on with her chemotherapy after her septic shock episode. Hayley and I actually seemed fairly confident when we arrived at Addenbrooke’s on Monday for Camille to have her kidney function test to see how quickly she will be able to clear the chemotherapy. This test is a standard procedure that takes place every eight weeks before each new course of chemotherapy starts; Camille gets injected with a radioactive fluid and then over four hours, she is monitored then over the following four hours to see the levels remaining at various stages.


Hot Nut Envy


Gradually now, day by day, we are getting closer to being able to continue with Camille’s treatment. The early part of this week Hayley spent in Addenbrooke’s with Camille undergoing numerous tests so that Amos can gain an understanding of how much the chemotherapy and the Klebsiella has affected her.


Sugar, Honey Honey


When I woke on Monday morning I expected my muscles to be throbbing after going on my first run in over a year. Actually, I was pleasantly surprised by my nimbleness as I waltzed down the stairs with the girls. It can be a real struggle to get in the frame of mind to step out onto the tarmac, but once you’ve done it and you’ve taken that rather long deep breath you feel pretty good.


That is a Small Appliance!


It was clear to us by the end of the weekend that Camille was still not right after leaving Addenbrooke's on the Thursday evening before. Camille was still being sick and we were struggling to keep up with her required fluid intake without her vomiting. It wasn't until Sunday night that we realised that another hospital visit was on the cards.


The Shadows


Everybody is aware that brain tumours are extremely dangerous and your first assumption, like ours back in June last year, is that there is not much hope of survival. Hopefully, now that you have joined us on this journey over the last eleven months, you know that tumours are curable and that the doctors who have the task of looking after children like Camille, will do anything to not only make sure they survives, but also that they has the highest quality of life possible post treatment.


Prawn Cracker?


After such a difficult end to the previous week, Hayley and I entered into another week on the High Dependency Unit, deflated and in need of some good news. However, good news is hard to come by and it wasn't about to jump out at us. Camille was being fed all of her required fluids and nutrients directly into her veins, the levels of urea and creatinine in her blood inching ever upwards towards dialysis and who knows what else.


Early Mornings


There are times when you are a parent of a cancer patient that you have to sit back while your child is going through absolute hell, not able to affect their outcome in any way. Hayley and I felt like this in June and July when Camille was first diagnosed and again this week we’ve been faced with this horrible feeling.


A Different Slant


After two weeks of Hayley updating the blog I've been chomping at the bit to get back behind the keyboard. It was interesting to get Hayley's perspective on things and I'm sure that everyone who read the two updates could see how incredibly difficult every week is for the mother of a little girl like Camille.


Part II of II - Hayley's Blog


Saturday morning, once again Lucia was up with the birds, she was pretty stealthy as she jumped out of her top bunk and tippy toed over to our bedroom.   Martin quickly installed her in the living room with Peppa Pig on the TV then hopped back into bed hoping for 5 minutes before our littlest called for 'Daaaaaaaaddy'.


Now for Something Different


As this week is a bit of a momentous week for Lucia and Camille, I thought I would take the strain off Martin and 'guest write' the blog.  Unfortunately I do not have the wit of my husband, my thoughts on events in our lives tend to be a bit more emotional - and long, I apologise in advance for the length of this blog and suggest a cup of tea might be in order.


Revised Targets


A year ago I turned thirty and set upon the task of achieving ten challenges/ambitions before I reached my next birthday. In June 2009 my challenge came to an abrupt end when Camille was diagnosed with her brain tumour. For the purpose of “closure” I’d like to share with you how much I achieved:


It's a Normal Life


It's very rare these days that we manage to have a straightforward or normal week, but looking back over the last seven days, it's probably been as normal as we've had in some time.


That is Some Top Quality H2O


Every weekend, Hayley and I look at our diaries for the coming week to decide how best to fit in work with chemotherapy and other miscellaneous hospital appointments. Of course this well oiled plan can be thrown completely off course by a nasty little infection requiring 48 hours in hospital.


Oh Toodles!


On Monday afternoon, Hayley and I made the visit by ourselves to Addenbrooke's to have our meeting with Amos and Mr Garnett to discuss the scan results that we'd had an indication of two weeks before.


Mint Sauce Anyone?


There’s nothing quite like getting up at 5.00am on a Monday morning to drive the 220 miles to Bristol through rush hour M25.


Every Time You Hear a Bell Ring


Even though Camille had gone in late for her chemotherapy due to an infection in the previous week, we were still on course to complete our fourth cycle.


A Ginsters a Day



Having just made it through the weekend without being admitted to hospital I was tentative to say the least about making the four hundred mile round trip to my office in Bournemouth on Monday.


Early Bird Catches the Worm



The week began with the thunderous footsteps of our eldest daughter crossing the landing into our bedroom, followed swiftly by the chirpy calls from our youngest daughter of “Daaaddddddyyyyyy”.


Spitfire on the Moon?



We've all heard of the dangers of the press and how a true story can be twisted or misstated into something a mile away from reality.


Finkle is Einhorn



The weeks seem to be flying by at the moment and I don't know if that's a good thing or not.


Call Me Mitch



Another week begins and another trip to Addenbrooke's for chemotherapy beckons.


Toot Toot Chugger Chugger



After weeks confined to hospital ward it was really important that we could just get home and spend lots of time just being a normal family, and doing normal things in the house. So that’s exactly what we did, hardly going anywhere apart from work and school for Lucia.


Solitary Confinement? Yes Please



As the days went by my boredom in hospital was becoming intolerable, and the fact that Camille was bed ridden due to the temporary drain didn't help.


Something in the Air


Never in my life has a week dragged on in the same way that this week has done. For ten days now, Camille has been practically restricted to her bed twenty four hours a day.......


Waiting Game


The days have merged into one another and now a week on from my last post, we are still resident at Addenbrooke’s Hospital, still a long way from home......


5,4,3,2,1, Happy New.....Oh Hello Mum!


Many men would be bored of cold turkey and mash for the days following Christmas, but not I. In fact I bludgeoned through plates of the stuff with spoonfuls of Branston pickle...........


Come Together


Picture the scene; Lucia wakes up with the crack of dawn on Christmas morning spotting the swelling stocking hanging from her door handle. She skips through to Mummy and Daddy's bedroom to announce that our midnight visitor had been........


Vegan Chocolates Roasting on an Open Fire


The previous week had been extra-ordinarily busy with the trip to 10 Downing Street and the Christmas Ball. As feedback rolled in the following day it was clear that the evening had been a major success....


Free at Last, Free at Last


As we had feared, Mr Garnett came to see us on Saturday morning to break it to use that we would be staying for at least another week.....


Your Highness is Hurting My Hand


On Monday morning I had the delightful task of going to Birmingham for a meeting. I was aware that Hayley was going to take Camille in to hospital....


There's One With A Clown On It


Patience is a gift that Hayley and I are not blessed with at the best of times. However, waiting for the results of an MRI scan add an extra level of urgency.....


The Swine


The early part of the week was spent trying to work out how we were going to catch Gordon Brown mentioning Camille's name or at least letter in his NHS speech on Tuesday.....


Gordon's On The Blower


The toll of the Three Peaks was evident as I crept downstairs on Monday morning. Step after step my legs felt like they were going to implode, creaking more than the floorboards.....


Ain't No Mountain High Enough


As the sun set over the flat fields of Suffolk, the waiting was over, the long hard struggle to get our fitness levels up and raise some serious funds for Camille's Appeal had come to an end.....


She's Awake! Moscow


Like any other chemotherapy week, this one followed a similar pattern: the Monday morning visit from Mary, our local Outreach Sister who comes to our house to take Camiille's bloods.....


Did he? I thought I heard...Hey?


I'm learning fast not to underestimate the chances of new pieces of news coming our way. Monday was our opportunity to ask both Mr Garnett and Amos any questions we had about the current position....


A Night In Her Shoes


So, this week was the long one, the Chemotherapy dose that takes the whole week to get through with all the hydrating and flushing involved.


The Taming of the Shrew


My job is going quite well since I started back a month or two ago. My role is one where I can control my own diary, so I do try to be present when Camille is going in to Addenbrookes....


Midnight Cowboy


Back when we suggested the Three Peak Challenge standing around our Addenbrooke's bed, I completely underestimated how little time I would have to train.....


The Montgomery Quarantine


A virus can come in many forms and with Camille's lack of immunity we have to be extra vigilant. It came as a major surprise that it was my laptop that became infected.....