All About Niamh - Our Cancer Journey

Great news

Well it's been a little while since I updated the blog. That little thing life sometimes has a habit of getting in the way. Not that I do that much you understand, but what I do do, takes up a lot of my time.

So what's been happening you may ask? Not a lot is my answer if I'm honest. Niamh is managing 4 lessons per day at school which is great, this equates to about 2/3 attendance. Not bad really, she's going to all the essential core subjects plus the ones she's chosen as her options. She can't do PE anyway and other ones she misses are the likes of PSE and IT which aren't essential to her. All in all, attendance for the important subjects is very good.

She's had another clear chest x-ray which is always fantastic because its always a worry every month when we go to get that. Thankfully Dr Edgar usually gets those results out of the way straight away and once those formalities are dealt with she moves on to getting her ear bent by Niamh. This clinic appointment sometimes can take an hour - Dr Edgar is very gracious and listens to everything Niamh says, never rushing her. If she gets sick of Niamhs chit chat she never let's on.

So, yesterday Niamh had gone out with some friends shopping and to Pizza Hut - she managed to fleece £20 out of me for this promising she'll give me the change. Oh that'll be the non existent change that will not materialise I should imagine. Still, she doesn't go out much and we always love when she spends time with her fab friends so we don't mind the £20. However I shall not be matching that with £20 worth of Match Attax for Conor.

We had some great news yesterday, Niamh's Make A Wish request has been approved and now we are booked to go on a Disney Cruise in August. This is an amazing once in a lifetime thing for us. I'm not sure if I've previously mentioned this on here but, when Niamh was on treatment, she kept talking about how she wanted to go to Rome, it is her dream. She wants to see the Collosseum, throw a coin into the Trevi Fountain and soak up the culture there. I made her a promise that we would go when she was better, not knowing if we'd be able to but hoping that we would. Believe me, some of the conversations you have with a teenager when they are seriously ill, life threateningly so are heartbreaking. After our umpteenth time of "the Rome" chat, Niamh fell asleep and reflective me cried myself to sleep next to her. I wanted to take her there so badly, but looking at her - she was so ill. Part of me often wondered what the future held for us and her. This time last year we were told that the chemo wasnt working on the tumour at all, there was no change in it whatsoever. Imagine being told that - you can't possibly imagine the fear you get as a parent when you hear those words. My over active mind would often end up in a very very dark place after midnight. Places that I certainly don't care to revisit ever. However much I tried not to, it was always inevitable. I would usually be awake because the ward was never 100% quiet. Sometimes on treatment, it's hard to think past the next day or even the next couple of hours because its so scary. We spent our time often making plans of holidays, talked of Thailand, Italy, California and Australia. Planned road trips, visits, pit stops, meals out and flights, anything and everything got discussed when Niamh was on treatment. The whole uncertainty that cancer brings is terrifying. So, when Make A Wish contacted and told us to start thinking about a wish for Niamh then it was hard. Niamh had a few ideas, one was to meet The Rock ( that's a wrestler/ actor for those who don't know). Another was to meet the cast of The Big Bang Theory ( her favourite US comedy). I attempted to influence her slightly by suggesting perhaps she could meet Johnny Depp ( but she didn't seem too impressed by that idea - nice try mum). Finally, she said she'd like to go on a Disney Cruise so Conor could enjoy it too (typical nice Niamh). So that was what she wished for and it's been granted. The "fate" part of it all is that part of the itinerary is Rome. So, we are definitely going there. We've taken the kids to Italy before twice, we all adore it there. It's beautiful, scenic, great food, fantastic vibe and lovely people - a perfect place and a favourite of ours. I'm sure I shall be an emotional wreck from start to finish. The trip feels so poignant for us, a triumph, a fufilled dream, a bucket list item for Niamh. Because, yes, on treatment she made one of those too.

I'll be sure to take plenty of photos of our once in a lifetime dream trip round the Med, I'm sure we'll make fantastic memories on this one with Mickey Mouse and Co.

 

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Raising awareness or trying to!

Every year in the UK, 4000 children and young adults develop cancer. Every day 11 families receive this devastating news. Though generally speaking 70% of these children now survive, the fight for their survival tests families to their limits – physically, emotionally, socially and financially.

As a parent of a child with cancer (in remission but nevertheless still "with some tumour in") my journey is somewhat unique as is every parents journey when their child has cancer. You really do ride the gamut of emotions, highs and lows can be far apart or come thick and fast. One minute your child is doing well, next minute comes a temperature, hospital then ITU. This can occur in the blink of an eye. During and after treatment you can feel as high as a kite sometimes or at rock bottom. I have often attempted to describe the emotions you go through when your child has a life threatening illness hanging over their head. Fear, helplessness, nausea, sadness, resentment, depression, panic, listlessness, lost, exhausted, despair, alone, angry, guilty and confused are just a few of the negative adjectives I'd use to describe a small amount of the feelings parents may feel on a daily basis. It's tough, hard to describe and we often feel isolated because the journey is classed as rare and therefore others can't relate unless they have walked the path themselves. Obviously I now know many people who've walked that path so it's not rare to me, but to others they will likely never meet anyone who's child has had cancer.

A while back I started up a Facebook page - just for parents (and close relatives) of cancer patients (kids really). The main reason was because I wanted the chance to meet up (albeit virtually) with people who had been through what I had been through and for there to be a platform for us to talk, cry, vent frustrations or just laugh. Whatever we wanted to do - I wanted us to be able to do it in private. It had been implied in another group I was in that a person can't know how it feels to have cancer without actually having cancer themselves. Therefore a parent couldnt really understand fully what its like to fight it. To a person watching their child battle this monster, this was astounding to me - verging on ridiculous. When your kid has cancer (or indeed any life threatening illness) you might as well have it - you absolutely breathe it, feel the pain in your very soul as if it was you and would swap places in a second if you thought you could. The heartache and pain is all consuming at times and takes over your entire being and life. So, I created the group "My Kid Has Cancer" and since then it's gone from strength to strength. We have 150 members now (which is sad to think really) and we regularly post and chat. I have found this group absolutely, without a doubt, the thing that's kept me sane during my own journey (which still continues). There is always someone there who understands where you're coming from with any vent or question. We have members who have kids who are at the start of their journey, in the middle, finished treatment, relapsed or (sadly) passed away. We are all in it together, supporting each other through thick and thin. We vet everyone who requests to join to ascertain their connection to childhood cancer because the very nature of the group is private. This group has been a godsend to many of us.

Last week I was interviewed as part of our local radio station's Cash For Kids day - this is on April 26th and is a fundraiser for the wonderful Clic Sargent charity who helped us so much when Niamh was on treatment. They provide a home from home (Clic Villa) in Edinburgh (next to the hospital oncology ward) where a parent can sleep and go for a break enabling you to be there for your child whenever they need you. Paul virtually lived there when Niamh was first diagnosed. This wonderful place was invaluable to me as I needed him with me, I could barely function at times. Clic Sargent are there when you need them most, supportive and dependable.They also provide a social worker and outreach nurse amongst other things. All so needed when your child is undergoing cancer treatment and you don't know your arse from your elbow. Which I often didn't!

Our story is featured on the website for Forth One radio and snippets of my interview (and other families interviews) will be aired throughout the fundraising day (April 26th) to generate donations. Please have a listen if you can - sorry if I sound like Jimmy Nail, hate my voice when it's recorded. Itll not be hard to work out which one i am. Geordie voice on a Scottish radio Station.

Here's the link.

http://www.forthone.com/charity/cfkday/stories/

Recent pic from our holiday - brave kids

 

 

 

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Tribute

Yesterday I eventually bit the bullet and got the tattoo I'd been humming and haaing about getting for the last year. I've wanted a new one for a few years now but never knew what to get or where to get it. When Niamh got ill last year I knew that it would have to be something in tribute to her and her bravery......but what and where? I only previously had one other tattoo, I got it when I was 21 and a student living in Stoke-on-Trent. Amusingly it is on my left front thigh (at the top) and was done by an elderly gentleman. I felt totally uncomfortable throughout haha, you can imagine how I felt having to pull my trousers down in front of this man to get it done lol. So, that was back when I was a Beatles freak and it's a tribute to my idol John Lennon. This new one is different....

My dad is Irish and so I wanted something Celtic themed, I hit upon the idea of a Celtic butterfly. Butterflies are beautiful, vulnerable and delicate, they symbolise spirit and freedom. Rebirth, a metamorphosis from something old to new. To me, the old is the cancer, the new is everything after. The transformation is profound, from caterpillar to butterfly in a short space of time. Completely unrecognisable afterwards. Beautiful, elegant and graceful. in many cultures, the butterfly also symbolises the soul and lifes journey. I believe somewhat in fate, I know that Niamh definitely does. she looks for a positive in every negative. Our life experiences teach us something. She has grown up a lot in the last 18 months and, like a butterfly, is almost unrecognisable from her former self. My new tattoo acknowledges this and combined with a yellow sarcoma awareness ribbon (which also doubles as an "almost" childhood cancer awareness ribbon - although they are gold) I had my design, a design that means everything to me.

So, it had to be that butterfly, but I didn't want it hidden away. It had to be visible. Not Maori style on my face ( haha I'm not that mad - I'm an almost 40 year old mum living in the UK *cough*). That would not look good in the school playground. Still I wanted it to be seen, to raise awareness my own way. So, it's on my wrist. It can be covered if required, but also it's able to be seen. It's not small, it's noticeable and colourful - which is what I wanted. I love the design. It was done by Vicky at Dragonheart in Portabello.

It feels like one of the most Important things I've ever done, I'm proud of myself because I am doing something that means something to me. As a family we've been to hell and back yet still we smile, we are strong. Niamh continues to whip cancers ass and we continue to move forward slowly. The tattoo is special, a fitting tribute to my beautiful brave daughter and also to us as a family. There is also four stars that symbolises the four of us together, as one, fighting the big fight. The battle of our lives last year and the journey that continues.

I hope you like it

 

 

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Greetings from Lanza

We are on holiday in Lanzarote so I thought I'd do a blog post, partly because I have the time to do it and partly because I haven't updated in a few weeks.

Niamh's still doing well, six months off treatment and so far so good. Another clear chest X-ray last week set us up nicely for our holiday. Her consultant is more than happy with her progress, there are a few ongoing issues which continue to improve slowly, for the most part she's doing great considering its early days still in the grand scheme of remission, her nerve damage can take a good few years to get better and we still don't know the extent that they will improve to. Still, she is improving all the time which is good to see.

So, we're on holiday - such a shame to leave the snowy freezing UK but we forced ourselves onto the plane, what a bind it was. I managed to eventually get my iPod to play a few songs in succession after Conor finally settled playing a game on the iPad. So I rekindled my Rage Against The Machine playlist - obviously by the time we touched down I was suitably incandescent with anger at the establishment (that won't mean anything unless you like Rage Against The Machine) but all that changed as we stepped out into heat, sun, blue skies and warmth. We really couldn't have picked a better time of year to come on this occasion, watching the news and seeing how appalling the weather is back at home really makes me glad we're here.

So, it's all good apart from the hawk that rids the premises of pigeons. I don't like birds - particularly pigeons. I tip my cap to the hawk however he scares me witless. He's a handsome fella, just massive and a bit swoopy. Paul finds my fear of birds hilarious, he took great delight in the fact that there's a hawk roaming the skies here and also pointed out to me this morning that one of the evening's shows is entitled "Birds of Prey" - this worried me immensely and I was obviously bricking it. I have managed to curb my fear somewhat in recent times as I don't want the kids to develop the same fear so I can handle little birds and stationary pigeons ( until some toddler comes running at them to make them fly - why do they do that?) suffice to say, I was not relishing the prospect of that particular show. I have so far enjoyed a Michael Jackson show, acrobats, Argentinian dancing and various quiz type shows - all good. I thought perhaps that may have been the end of that good run. But it was ok, I sat at the back. Niamh and Conor enjoyed it and got their photo taken with some owls. One was massive, an eagle owl, which scared Niamh but Conor merely put the leather holder on his arm and held it for the pic. Brave boy - it wouldn't be me.

Another amusing holiday thing is that the entertainment team think Paul is called Nigel, which is a great source of amusement to us - except Paul. Niamh thinks Nigel is the disco king - Paul is not the disco king at all, he dances like a puppet on a string. Nigel has the moves like Jagger haha. I like my temporary husband/ holiday romance!

We are over halfway through the holiday now, the weather is lovely - a great tonic. It's not all plain sailing though, as ever. I'm often reminded of Niamh's after effects of treatment. She's fallen over a couple of times and hurt herself, often unable to get up alone so she gets really embarrassed trying to get on her feet again. Also she went and checked out the teenagers kids club here and was embarrassed yet again as I tried for ten minutes to explain her illness to the reps - having to mention her tumour always bothers her. She hates when I talk about it outside our home. She has also experienced a few other side effects out here that she has found unpleasant. As I say, she's making great yet slow progress but it's not all plain sailing and we are by no means out of the woods yet.

We have been talking about the fund too, the remainder of which we are eventually going to start donating to other families who need to go abroad for treatment. We aren't doing that quite yet though as Niamh is only 6months into her remission and it's very early days in the grand scheme of things so we'll hold onto it a little bit longer then offer discretionary donations to others who find themselves in our position. We think this is the best use for the remaining funds rather than starting a charity. That requires the kind of commitment that we don't feel we are able to offer at the moment. We still want to do charity fundraising, but that will be for localised charities, BCRT or Clic Sargent.

Our thoughts have also turned to planning our visit back to America later in the year for Niamh's follow up to her proton (a year on). We all can't wait to go back and see the fantastic team again. It'll be part medical part holiday. Conor and Niamh are looking forward to going back to Denny's for a couple of nice breakfasts. Paul wants to plan a little road trip out there and I'm just looking forward really to revisiting Jacksonville which was so good for us last year. I really miss the place and would live there if I could. I can't, of course, but the thought is there. I'll always revisit the place now and again, the memories are fantastic. I watched Niamh bloom out there, she lost her "chemo pallour" and got colour back in the cheeks, she gained so much strength with the outdoorsy lifestyle, her hair started growing back and she regained her cheekiness and wit (the old Niamh). She also got back her love for reading after being more or less unable to physically hold a book, let alone concentrate enough to read it for 7 months. Yes, my memories of Jax are fabulous - I owe that place everything really because the chemo in the UK didn't work for Niamh but the proton therapy in America zapped the tumour into oblivion. I can't wait to return. It goes it hour saying that the outdoors American lifestyle suited Conor too - he loved the place.

So, I'll sign off now and go and type in my password for Niamh to buy her fourth book on the Kindle in a week. The bookworm is back with a vengeance.

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Happy Mothers Day

I haven't updated in a while, largely because things are going well so assume that no news is good news there :-)

Yes, things are going well - trotting along nicely but today is Mothers Day so I thought I'd do a little blog post to mark the occasion.

Niamh has had the good news of another great "no evidence of cancer" MRI and a clear chest x-ray so it's all going in the right direction slowly. She's building up bit by bit at school and doing a few more lessons here and there. She had to do her options recently and has made some good choices in my opinion. Inspired by the nurses on Ward 2 - Sick Kids Edinburgh, she would like to become a Pediatric Nurse Practitioner which is a fabulous and worthwhile career to have. I'm proud that she wants to help others and have no doubts that she will succeed in that field with the experience she has under her belt.

She's also started at the gym trying to build up her strength and stamina there. She really likes it. i'm not entirely sure as to how much actual exercise she does or if she's merely exercising her mouth chatting with her pals but she's trying and seems to be getting a little stronger so maybe I should give her the benefit of the doubt there. :-)

Mothers Day last year Niamh was in hospital having got a temperature which equals straight to ward 2 - do not pass go, do not collect £200. Boom - antibiotics. See you in 3 days all being well.

This was the photo I received on Mothers Day last year.

As you can see - I got flowers but I didn't get them properly until a few days later as i was staying at the hospital :-)

This Mothers Day has been very different. Niamh made me my breakfast and gave me a customised hand painted wine glass (she knows me too well haha). We went out for a posh lunch and then to a chocolate shop. Niamh is what I call high maintenance these days as she seems to have expensive tastes much to Paul's dismay as his wallet seems to get a hammering every time we go somewhere. It seems her meal and non alcoholic cocktails at Gusto cost the most (not that he was scrutinising the bill - except he was), followed by her expensive taste in chocolate afterwards.

A bag of expensive chocolate

He doesn't mind as she's worth it. She was thrilled as the waiter assembled her main course artistically on the plate for her at the table. She ate every last bit and declared it to be one of her best meals ever and the cocktail the nicest she'd ever had. this makes it all worthwhile. Seeing the smile on her face and her eyes light up means the world to us. We just feel sorry for any boyfriend she gets when he rocks up with a packet of Rolos and an invite to Macca D's. He will have his work cut out for him I think. Hopefully that's some way off yet.

Cheers - Happy Mothers Day

 

Do people pay for this mum?

School half term holidays have now been and gone here in Scotland - Niamh assumed her usual position on her bed with her iPad giggling at Facebook posts and playing games. How she can amuse herself for hours on end I do not know. Nevertheless she likes it anyway. Conor generally just plays out with his little pals if its even just an "alright" day. He never feels the cold and spends all day running about, kicking a football around, climbing trees and getting dirty. Thankfully we've had a few nice sunny days this half term so he's been out and about. We've also had some horrible windy damp days when he's been rattling around under my feet so Xbox has been on too.

So, Niamh continues to do well. She's feeling unfit at the moment due to the weather really and her subsequent inability to get out walking. So, she's had an induction to the gym. She can now go to the supervised "Teen Fit" sessions at our local gym and also go along with me (*cough* no excuse now for me is there) and do some exercising. At her gym induction she was put through her paces by a fitness instructor who was also a somewhat hard taskmaster. This prompted her to ask me why people pay for a fitness trainer as it was a "bit like torture" - I had no answer for that really. What can I say? It is a bit like torture. I'm hoping the gym will improve her fitness levels and give her a sense of wellbeing so that she feels like she's actually doing something. I've actually taken up that fitness thing again myself recently and have attended Boxercise a couple of times which actually almost killed me. Such is my current lack of fitness. I had forgotten the pain. I went to bed in a 37 year olds body and woke up in an 87 year olds body. Yes, it was that bad. My friend Val said "Ah we'll laugh ourselves skinny!". I assured her that if laughing contributed to weight loss then I'd be a size zero......which I am not!

No pain - no gain is the term I believe.

Last Friday gone, Niamh also had her 3 monthly MRI scan. The usual worries that go along with that resurfaced. It's quite an irrational fear really. Us cancer parents call it "scanxiety". It's like a fear of the unknown, fear of what you don't want to know. You pray for a good clear result, no activity, no cancer basically nothing going on at the tumour site (or anywhere else for that matter). You have to go, it's common sense to keep an eye on these things and if something was going on you need to know so you can deal with it, but still the worry is there. The "what ifs" and distinct possibilities that become the norm to the parent of a child who's had cancer can consume you at times. You can't sleep, your feel sick, have a knot in your stomach, can't concentrate etc. your eyes can look like pissholes in the snow much of the time. Mulling things over is something I do a lot of when I get a spare moment. Niamh is still just off treatment and, in the grand scheme of things, is a fledgling in the world of cancer remission really. Still finding her feet and not quite able to fly yet. The thoughts that it could come back are terrifying. Don't get me wrong, I'm as positive as they come - I don't dwell on it as much as it seems I do. Niamh, Conor and Paul see to that. My mind is occupied much of the time (mostly with cooking - I do love cooking) but that's a story for another day.  I don't look on the bad side much - It's just when I come to write the blog that my thoughts switch sometimes.

So, we should get the results of the MRI soon and I shall keep you all posted. Fingers are firmly crossed for a positive result there.

Until next time.

Mam, this time last year I was in theatre getting my tumour out - this year I'm baking brownies!

The title sums it up really. That's Niamh's take on it anyway. Again her matter of fact outlook on life prevails and pulls me back from the brink of despair to feeling somewhat normal and grateful. Niamh, as ever, knows the right thing to say. 

And so we move into a new phase as now a year has passed since Niamh's diagnosis. Every time I think "this time last year" for the next 9 months will be a cancer memory. There will have been something cancer related on that day. The year has passed so fast, in the blink of an eye it seems. I remember many days as clear as a bell. Every last detail is etched in my mind like a photograph. Words spoken on those days are in my mind like a film script that i can recite word by word. This time last year was the worst day of my life when Niamh was rushed into theatre for an emergency 7.5 hr operation to prevent paralysis. I spent much of that day in a daze, angry, weeping, hysterical, holding my sobbing husband as we waited for news.

And now look at her - doing so well, baking the nicest brownies and cheerfully telling me about school this morning. Keeping my focus on today - how she is today. Not allowing me to picture her this time last year, smiling through the pain and fear. Stepping into the unknown. I prefer not to think about tomorrow, it never comes. Today she's good, happy and that's good enough for me. I've reflected today intermittently - off and on. I've done some cooking which I find occupies my mind nicely and, as already mentioned, Niamh has baked brownies. All in all, today has been ok - better than expected. My next months are filled with dates when"this time last year" she was having chemo, ops, radiotherapy, tests etc. I'm sure I'll get a flashback on certain dates, but Niamh will see me through those dark times with her tenacity, positivity, courage and fighting spirit. As she has always done.

This quote is on Niamh's bedroom wall and it sums up her attitude perfectly

A year today............

A year ago today, our lives were turned upside down when we were given the news that Niamh (our beautiful Niamh) had a tumour.

A whole year ago! January 23rd 2012. Where has that time gone?

From that day, our lives have changed, so much so that it's almost unrecognisable now. We are slowly getting back to a "new normality" via small steps but it feels different. My eyes are wide open and I've seen too much to be the same person I was on 22nd January 2012. Life goes on, day to day, but fundamentally the rules have changed now and every move is done with careful deliberation and consideration.

We had a momentous occasion last weekend when Niamh had her first haircut in 14 months - her hair has grown back after chemo at a somewhat uncontrollable rate, afro style - chemo curl. Recently she's always been just one small step away from little orphan Annie (minus the red hair) or the Belgian footballer Marouane Fellaini. Not anymore - she now has a beautiful pixie cut and looks amazing.

A far cry from this time last year I'm sure you'll agree.

It's hard to plan ahead but, this week, Niamh bounded home incredibly excited about something and begged me to let her go on a school trip to Paris. It's a year and a half away (June 2014) and Niamh will be a couple of months away from her 15th birthday (this is scary in itself). We decided that we'd let her go, perhaps ill advised, but it's a long way off and we feel it'll give her something to look forward to and aim for fitness wise. I am now at the F*** it stage because life's way too short to worry about the ifs, buts and maybes. Let's just live it and see what happens shall we? She is really excited to be going with her best mates. Lord knows what France will make of those girls!!! Je ne sais pas!

I could go on about how reflective I feel today, how sad I feel when I look back and what an awful day it was, but I feel that it's perhaps unneccessary as you all know all about that fateful day. That day I'd sent Paul home to collect Conor as I just thought it was sciatica - today ( a year on) I am once again alone as Paul is working away from home. I don't want to ham it up with big fancy words and bore you with my feelings on this blog post. A lot has happened, but as a good friend told me this morning - it's good to reflect, but I shall reflect privately. Shirley Ryan gives great advice (as do all my oncology friends). We are a family- a team with a shared bond, walking different paths but with the same anxieties and fears.

We are often asked how we do it, how we deal with cancer in our child.

This quote sums it up perfectly

Our kids have/had cancer - nothing on God's earth is worse than that!

Nothing can ever ever prepare you to hear those words "Your child has cancer!"

Knowledge is power. Ignorance, in this case, is never bliss - quite the opposite so do yourselves a favour and educate yourselves on the early symptoms. It may make a difference and save your childs life.

I'll leave you with Shirley's quote from this morning - it sums it all up for me.

You know sometimes being reflective helps I think, it makes you realise how far as a family and an individual you have come, it makes you realise how much stronger you have become and how you don't stand up to bullshit anymore. It makes you realise that our kids are a gift and are there to be treasured (although can be little buggers at times!) and it makes you realise never ever take things for granted. The new normal is all of our normal on this page and this journey is teaching me a lot, its crap our kids have to go through this but we cant change it, their (our) journeys have started and here we are, we are becoming better people for it.x

Shirley Ryan mum of Morgan Tait-Ryan, 10 year old hero

 

 

You can't escape the inevitable.....

Time is cracking on and we see ourselves halfway through the dreaded month of January, so far so good.

Our time has been taken up with school and work which seems for the most part to be keeping us busy. Niamh continues to do well, she had a clear chest x-ray this week which is great news. She gets monthly chest x-rays currently to check there's no sinister activity going on. Our next scan will be our second MRI since finishing treatment, that should come next month sometime. I will, of course, be as nervous as hell waiting on the results but hey ho......that's part of my life now.

Schoolwise, Niamh is getting on pretty well. She's still managing 3 lessons a day as much as she can. It's hard for her because she gets exhausted sometimes, she pushes herself a bit too much occasionally. She gave herself (and us) quite a scare recently as she fell down the stairs at school due to her being tired with "shaky legs". She was ok, just bruised and probably embarassed but it brings it back to the forefront of my mind. She had a bad fall at school then two and a half months later she was diagnosed with cancer in the very spot she fell on. That concerns me so I obviously went a little bit into panic mode when she told me she'd fallen again, it's hard not to.

I've called this post "You can't escape the inevitable" because it's January - the dreaded month. January last year was dire, just awful. Niamh by now in incredible pain, barely sleeping, suffering panic attacks, crying all the time as we waited for our MRI scan. 23rd January she was admitted to the Royal Hospital for Sick Children in Edinburgh, that place was to become our home for 5 months. 31st January - Niamh's emergency operation to prevent paralysis. The latter part of this month is the "inevitable" part that I cannot escape from. The world continues to turn, the sun will rise and set every day and sure enough the 23rd will come round. It's safe to say I'm not looking forward to it - I feel like I want to cry just thinking about it. The knot I had in my stomach back then is on it's way back with a vengeance. I find myself more and more reflecting back on last years events, the non fun rollercoaster that I couldn't get off, the living nightmare . As it creeps towards 23rd my mind relives that afternoon over and over.

The heartstopping moment "We've found a lump!"

The heartbreaking moment "Am I going to die mam? I don't want to die! Please don't let me die!"

The anguish, guilt, confusion, ignorance, terror, heartache, sickness, sadness, numbness, helplessness and fear from that first day rise in my throat like bile when I think of 23rd January.

But, think of it I must because it's coming and I can't change that. It will likely be a day like any other, a work day - a school day. A day where I'd just prefer to curl up with my thoughts and get through it. But I can't do that. I have a "normal" life to live. A husband, 2 kids and a dog. Life has to continue, despite my best efforts to stop it all that day - it's impossible! So, I'll try my best and get on with it.

Yes, Niamh's doing well, yes her mobility is improving, the tumour is "not active" - dormant if you will. She's slowly returning to something of a normal life, but I can never be normal again (not now anyway). Too much has happened in the last year, I've seen too much I'm not the same person I was. How could I be?

So, yes, January holds no interest to me this year (or any year truth be told) however life goes on and we'll be OK. I'm allowed to reflect now and again, it's part of the process.

On a good note, Niamh's just come back from school and told me she got 78% in a maths test, that's amazing considering how much work she's missed, but she's determined to do well and succeed. She's going to go far because she's got the will to do it. It goes without saying that I'm proud of her. It's been a long year and the journey is in no way over.......but we're getting there slowly.

This is Niamh on 24th January 2012 (day after being admitted to hospital)

This is Niamh on 17th December 2012 meeting Santa on her trip to Lapland with F.A.C.E

What a difference - she's changed so much. Grown up a hell of a lot because she had to!

Until next time........

New Year? New start?

A belated Merry Christmas and a Happy New Year from us. I hope santa was good to you all.

We had a nice, quiet festive season. It's how we wanted it, we saw family and friends and enjoyed our time together, appreciating each other and stuffing our faces with chocolates, turkey and various alcoholic beverages (that's the adults not the kids - we are responsible parents :-) )

Xmas Eve

Father Christmas brought the kids an X Box, he's already regretting that as they seem to fight non stop over it. Conor wants to play wrestling and Niamh wants to do Just dance 4. Neither will compromise and so the X Box finds itself switched off often by an angry mum who's merely trying to get the house back to normal after Christmas without losing my mind.

Paul and Niamh

New Year is a reflective time for anyone, I wanted to avoid any fuss this New Year by just spending it with Paul, Niamh and Conor - door locked watching Jools Holland's Annual Hootenanny, Which I did! I am not looking forward to January - it was an awful awful month for us last year. Niamh's diagnosis and subsequent emergency operation happened in January so it'll be quite an emotional time I think.

2012 has been beyond a shadow of a doubt the most traumatic, heartbreaking and difficult year of my life and I'm glad to see the back of it. I have watched my child struggle to beat a relentless illness whilst being unable to "fix it" myself as a parent should. I have held her as she sobbed uncontrollably with the pain wishing I could just take it all away. I have watched poison being pumped into her body to kill the illness, making her even more ill in the process. I have felt unbelievable guilt because I couldn't swap places with her. I watched her anguish as her hair fell out in chunks before she decided bravely to just shave it off. I have held my husband (who never cries) as he wept in my arms so angry that Niamh had to go through such an awful thing. It's been harder and tougher than I ever imagined life could be. Yet, here we are, still here in 2013.

In amongst the heartache in 2012 - we have also had many highlights, small triumphs during treatment that you wouldn't think are important but to us, they meant the world. Niamh cracking a joke, getting up out of bed, standing up after her op, not getting a temperature so we could stay at home, sleeping in our own beds, a glass of wine for me of an evening, a smile, a word of kindness or a meal out. Little things everyone else takes for granted become a big deal on cancer treatment.

We have made friends and lost friends, in both the virtual and real world. Experienced overwhelming kindness and generosity when we needed it most.

Above all, I have found out things about myself and my family that I never knew. I am stronger than I ever thought I could be. I couldn't have imagined having the strength I've had. I didn't curl up in a ball (like I wanted to). I stood up tall, flipped the bird at Niamh's cancer and together we kicked it's arse. I found out that I have the most amazing husband Paul, who stepped up to the plate without a word and supported Niamh, Conor and myself through unimaginably tough times. Through thick and thin, he was there with us every step of the way, unwavering, solid and dependable. Never leaving our side (thanks to his company Phillips 66 for being amazing about his time off). Making us laugh and holding us when we cried. Our rock!! Throughout truly life changing stuff - we will be renewing our wedding vows this year because I love him more than I can ever express.

I have a son, Conor, who at the young age of 7, has been so good, supportive and easy to look after. He's taken care of his sister,looked after her through extremely difficult circumstances, been discreet and not made a fuss through a hard and uncomprehensible time. He has never complained, barely missed school (except for when we were in America) and generally was a superstar all the way through. he's amazing and I'm so so proud of him.

And my daughter, my lovely Niamh, the bravest, boldest, toughest, most beautiful, positive girl I've ever met. She has endured unimaginable pain with a smile, seen things a 13 year old should not see, grown up overnight into a mature, sensible, wonderful girl, had many operations, spent many nights in hospital, lost her hair then groen it back afro style, been to America for treatment, swam with dolphins etc etc.....so much to say but not enough time or space on here to say it. You all know how proud I am of her, there's being proud when your child gets an award, or proud when they are in a school play but the pride you feel when your child goes through something like cancer and beats it is beyond words. I hope 2013 is a wonderful year for her and she continues to go from strength to strength - she deserves it. Our New Year was quiet because last year was awful.

So this year as the ball in Times Square dropped at midnight, so too the baton is handed to 1600 more unsuspecting UK families like us, families who are blissfully unaware their child has cancer but in 2013 they will get that devastating news that will change their lives forever.

It could be you

Be aware of the symptoms - you know if something's not right. Get to the doctors as quick as you can. Time is precious in this game.

All the best for 2013 to you all and thank you for your support through this last difficult year. Here's to 2013 being a healthy and happy one for all