So it's been a while since I posted up a blog post. I regularly update my All About Niamh Facebook page and Twitter (well Twitter when I remember actually) so more recently the blog has been sidelined a bit. If you wish to "like" our page then the link is
I will be using this FB page to update about Niamh more frequently, posting photos and info. As you know, we are going on a Disney Cruise round the Med with Make-A-Wish charity. We actually go in less than two weeks time now so follow my page for a glimpse of that adventure. Our wish pack came earlier this week and Niamh could hardly contain her excitement.
However, Thats not our only piece of good news. We also want to share some even better news with you all. Niamh had her third post treatment MRI last week (she has them six monthly) and on Friday we were given the news that it was clear. No change and no concerns. She also had a lovely clear chest X-ray. This means that she is now in her 10th month being cancer free and in remission. We are thrilled obviously, she is going from strength to strength and making steady progress towards getting back to normal (or a version of a new normal)
Scans are always nerve wracking - it doesn't seem to be getting any easier but, the further away you get from treatment. The less likely it is that the cancer will return. It's always on your mind, like an unwelcome visitor. Creeps up on you when you least expect it. The lead up to the scan is frightening then the wait for results is awful. Amongst us cancer parents, we call it scanxiety which is the perfect term for it. The relief is all consuming when you hear the words all clear - still in remission.
Niamh and Conor celebrated with an ice cream from Lucas in Musselburgh.
Paul and I celebrated with a bottle of wine. I don't have a photo of that - sorry.
And so, we prepare to move into another school year. Niamh is nervous (we expected that) but she is stoic and tenatious and she will step up to the challenge of a new year and all the new experiences and tests it throws up for her in this next chapter of her life.
I'll leave you will a little picture I made showing you how far she's come in a year. We are so very proud of her and all she's achieved, how she's dealt with the cancer curveball she was thrown and how she kept smiling throughout. It's not easy dealing with the "after cancer" bit for her, she has missed alot with her peers - socially. She has side effects from her treatment and also bad nerve damage sustained from tumour pressure but, she's dealing with it. She's trying her best and we can't ask for more than that.
Next stop........Disney Cruise
A year ago today, we set off into the unknown on what was to become a life-changing trip in many ways. We were nervous, apprehensive, scared but determined. The words "mam I just want to be normal" were etched in our minds as the flight took off and we left our "normality" behind and embarked on the journey of a lifetime. I experienced the gamut of emotions on that flight, I also noticed for the first time that Niamh's eyelashes were growing back. A sure sign that her chemo was finished. It was just a matter of time before her eyebrows and hair followed suit.
Here we are on the plane
America was never somewhere I'd thought about going, we love our holidays but the USA had never really particularly been on the list. Or rather, if it was on the list it would've been pretty far down. Like many people, I assumed that Florida was all about Disney and theme parks. I was so wrong there, there is so much more to the Sunshine State than that. It's a delight, a revelation, a real eye opener, colourful, beautiful, friendly and fun. Man, it's hot too - I mean really hot and the thunderstorms are a sight to behold. Yes, Florida is amazing, but lets focus in closer on that and talk about Jacksonville (Jax).
Jacksonville saved Niamh, simple as that. It also saved my sanity having lived a chaotic nightmare for the six months prior to going. It's very hard for me to put into words what that place means to me, to us. I watched Niamh and Conor blossom out there. The combination of sunshine, family time and positivity helped change my outlook on life entirely. Niamh lost her chemo pallor and gained rosy cheeks and a sparkle in her eye. Her smile, which had remained steadfastly throughout treatment although often albeit strained and forced at times, became constant, she radiated strength and confidence more and more as the time out there went on.
That decision to go out to America was not easy, it was not taken lightly. Ultimately it became easy when Niamh said simply "I just want a chance to be normal" - heartbreaking words to hear from a child who'd had to grow up overnight and deal with the adult issue of cancer and all that emotional crap that goes with it. A child who'd smiled through the pain from day one, who never complained, who watched her hair fall out in clumps, who had almost been paralysed, whose bravery and tenacity inspired us to get out of bed and carry on every day. My child. My wonderful Niamh. She made the decision easy because she simply wanted the best chance to be normal. So, we went.
A recent pic of Niamh
No regrets - none of us know what's round the corner for any of us. Our philosophy is to regret nothing. I concentrate on today, on making memories. I will not look back EVER and say "I wish I'd done that" because I will have done it. This journey has taught me to take nothing for granted, this fragile life is for living. We are all on borrowed time. Who knows how long any of us are here so love the ones who matter to you and forget about those who left you by the wayside. Don't sweat the small stuff - it doesn't matter. As the late great Bob Marley said "Love the life you live and live the life you love"
We are eternally grateful to Jacksonville and are proud to call it our second home. Thanks to all those who helped make that miracle happen for us and Niamh. You may never know exactly how much it meant to us, but you made a difference to a little girls life. You gave her that chance to be "normal" and that's a great thing to be able to say "I made a difference"
So things are going well for Niamh at the moment. We are all feeling positive and focussed (something thats always been a theme throughout this journey we're on). With that in mind and perhaps a sign that we are feeling a little more confident the further away from treatment we get, we have bitten the bullet and booked our US trip for October, we can't normally plan that far ahead but positive thinking that Niamh is doing well and that she'll get a clean bill of health at the post-treatment check-up at the Proton Center in Jacksonville, which is the reason for the trip in first place.
Paul being Paul has made a map ( that's how he rolls - it's strange I know. I'm used to it)
The bridal party travelled to the church in camper vans - Niamh loved that quirkiness.
Niamh and Paul's sister Helen en route to the church to fufil bridesmaid duties.
I say from then on all was fine (apart from the photographer asking me if I was Helen's mother......I'm four years older than her. Paul thought this was utterly hilarious). Also later on in the day Helen and I were perhaps slightly inebriated and maybe embarrassed Niamh slightly with our dance moves. I thought we were good personally. Niamh started off dancing with us and then after a minute or so she sat down, shaking her head in disbelief as Helen and I busted out the old school moves. I was highly amused watching Helen fist pumping to Erasure whilst wearing her bridesmaid dress. A lovely day was had by all.
In other news, Niamh and Conor both had excellent school reports. Niamh was somewhat perturbed by one of the comments that her homework for food technology was only "good" instead of "excellent" (like all the other subjects) because as far as she was aware, she hadn't had any homework for food technology so that was a mystery to her.
So, that's it for now - until next time folks
A lot can happen in a year. A year ago this last weekend gone we were given the bombshell that Niamh could be a candidate for proton therapy in America. Much of that weekend passed in a wine induced haze as Paul and I brainstormed the pros and cons of such a trip. Ultimately, it came down to the fact that it would give her a better chance of being "normal" or as "normal" as any child of mine could be. She was already on the back foot with that one so we signed up. The rest is history.
Last week, Niamh had a routine chest x-ray and caused us all a bit of a scare. The results were inconclusive. What does that mean, I wondered? I started to feel a little concerned. Professor Wallace, still exuding a calm demeanor, immediately booked us for an emergency CT scan (apparently you can get straight in if the top man requests it) told us to go back to X-ray, get that done, have a coffee and go back to see him. They apparently couldn't see part of the lungs. My mind started to play tricks. Why can't they see it, is something there, lurking? She was clear last month. What's going on? She has no immediate symptoms. The familiar sick knot like feeling started up in the pit of my stomach, I hadn't felt it in a while and it was not welcome. Niamh went into full on panic mode so, as is very familiar to oncology parents, I put my feelings of worry on the back burner and concentrated on calming her down. All she kept saying was "I'm going to Cameron's at 2!" Poor soul thought they were going to find a tumour and re-admit her. Thankfully, after much gut wrenching worry - the prof told us that it was all fine. She is still cancer free and in remission. Huge sigh of relief all round. Niamh was overjoyed, not least because we got to go to Victor Hugo's deli and buy some lovely raspberry balsamic vinegar.
However, it reminded us that we don't know a thing about Niamh's cancer, or how it may or may not behave. Cancer is like that anyway, but Niamh's tumour is very rare and theres a distinct lack of research there. So, we just have to live with that and get on with the fact that there is always the very real possibility of relapse hanging over our heads. The very thought frightens the crap out of me. A good friends son recently relapsed after being in remission for 19 months - we, as cancer parents, are never complacent. We never rest on our laurels. We can't. We can only ever take it all a day at a time because all we have is today really. Tomorrow never comes...............
Niamh went into Edinburgh yesterday with her friends, against our better judgement it has to be said, and after an eventful afternoon of headaches, phone calls, missing trains and loads of food she finally arrived home at about 7.30pm. It was a very very long day for her and (as predicted) she was completely exhausted by it all. Exhausted but happy which is the main thing. Paul and I had organised an afternoon of making plans for various things (holidays mainly) which didn't happen due to the phone ringing off the hook. The best laid plans and all that, I should know not to bother by now....
However, in amongst the worries we deal with every day, we always remain positive and talking of Jacksonville, we've been liaising with the team out there again planning our post treatment follow up trip for October this year. Looking ahead (albeit just a few months) is a big step in the cancer world because usually you can't think past next week if you're lucky. We are looking to book the trip this week which will be part medical, part holiday with a couple of surprises in there too. We can't wait to get back out there. It will be a fabulous trip. There's talk of wedding vow renewals, New orleans and Chicago as well as Jacksonville. All terribly exciting.....
Niamh remains positive as usual. I've said before that I take my strength in dealing with this thing from here. If she's happy and cracking on with life then so am I. Often I feel I am being left behind in the fact that she seems to be moving on and away from the cancer (apart from the obvious effects of the treatment) whereas I often find it hard to move on. I reflect back often. Last year was so traumatic, it's hard not to. Sometimes I think I dreamt it, the ultimate nightmare. The one that's actually real when you wake up. I lived within a constant bad dream for 11 months until Niamh was said to ne in remission.
However, as I say, Niamh is happy, pretty much carefree and loving life. Next month she is going to be a bridesmaid at Paul's cousins wedding which is going to be a fabulous day. We are all so looking forward to it, our hotel is booked now and everything is set. The bride just has to turn up.
Until next time...........
Niamh and Granda Seamus at Craster recently
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.
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.
Recent pic from our holiday - brave kids
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
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.