Since the start of September, the Go Gold for Childhood Cancer campaign has been going strong and as my own family has unfortunately, like so many others, experienced childhood cancer, I used this blog to raise awareness about the campaign throughout the course of the month.
As today is the final day of September, this is the final post about childhood cancer for the 2016 campaign and I do hope that the stories have stayed with people, made them think about the reality of childhood cancer and raised more awareness about the Go Gold campaign.
Less than half an hour ago, my cousin Paul Hayes (Lily-Mae's uncle) posted a memory on his Facebook page saying that today marks the four-year anniversary since Tiny Dancer A Song for Lily-Mae was recorded.
Paul explained that the song went to Number 1and is second only to Live Aid as the biggest charity single ever recorded in Ireland.
"What a journey it has been since then, but all that really matters now is that Lily-Mae is just a normal little girl, healthy and happy.
"We have 58,000 followers on this page and it is largely down to you that we are where we are today. You bought the single, you raised awareness of our fight, you sent us messages of hope in the dark times.
"So, from all of us at The Sunni Mae Trust, thank you," Paul's heartfelt words were accompanied by a video filled with love, joy and hidden pain and suffering, as Lily-Mae and her Dad Leighton sang a little duet of Tiny Dancer while Lily-Mae was really sick and was enduring stem cell treatment.
Even for those of us who have been lucky enough to have their lives untouched and unscathed by the scourge that is childhood cancer, please spare a thought for the families who have just been hit with devastating news, the children who are experiencing unimaginable pain and the adults of the future whose lives will be forever altered by the illness they endured as children.
It is not fair that such tiny, innocent and adorable people have to go through such horrible things at such a young age.
The statistics from the first Go Gold blog post were staggering and to think that so many children in Ireland are struck down by a cancer diagnosis in Ireland everyday, is really horrible, but what is even worse is that places like Crumlin Children's Hospital, Temple Street Hospital and the Bumbleance, have to fundraise in order to get the money to keep their services running.
If you can donate to any of the above, please do, or if you like organising events or running fundraisers, perhaps you will think of nominating one of the above as a beneficiary.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Friday, September 30, 2016
Tuesday, September 06, 2016
Go Gold for Childhood Cancer, because this shouldn't be something in our world
Top; Lily-Mae in full flight in the ballet studio earlier this year and bottom, a very sick Lily-Mae sleeping beside her brother Evan, as she tried to make her way through the horrible illness, which is Neuroblastoma (pictures courtesy of the Tiny Dancer, A Song for Lily-Mae Facebook page, with permission from Judith Sibley).
June 1, 2012 - this date may mean nothing to most, but to the Sibley, Morrison, Hayes and Quinn families in Ireland, it was the day that childhood cancer came crashing into our lives.
Childhood cancer, is, in and of itself, a term that should not exist, and it is one that should never be used glibly - it should always be accompanied by an ill feeling in the pit of your stomach, the knowledge that something, somewhere in the world has gone horribly wrong and that a parent somewhere is riddled with guilt, pain and anguish, which may never dissipate.
On that awful day in June four years ago, we found out that adorable and care-free Lily-Mae had been diagnosed with Stage 4 Neuroblastoma - a litany of furious Google searches ensued, but the results posed more questions than they answered and as a family, we suddenly realised that besides offering 'thoughts and prayers', there was very little that we could do to help Lily-Mae, her brother Evan and her parents Judy and Leighton.
Nobody ever thinks their child will be sick, just as nobody ever thinks that their spouse or loved one will have to make a claim on their life assurance.
Throughout the month of September, the Go Gold for Childhood Cancer campaign will be going strong and last year, if you recall, a number of landmark buildings from all over the world, lit up gold in support of the campaign.
This year, those behind the campaign are calling on people to 'Go Gold for Childhood Cancer Awareness' and the campaign runs from September 1-30. Funding for childhood cancer research and treatment centres is lagging far behind where it should be and just this week, this writer got a delivery from Crumlin to sell a book of raffle tickets (a car is up for grabs) to support fundraising for the Nazareth Unit in Crumlin.
While almost everyone is raising money for something these days, the thirty tickets were not hard to sell and were sold in a matter of days - not because there was the potential to win a car, but because it was a way to help sick children who need better healthcare facilities.
While almost everyone is raising money for something these days, the thirty tickets were not hard to sell and were sold in a matter of days - not because there was the potential to win a car, but because it was a way to help sick children who need better healthcare facilities.
In this day and age, with things like iPads for kids, TV's in every room and the internet on every device, it is a crying shame to think that people need to fundraise to upgrade something like a children's unit in Crumlin hospital.
Anyone in Ireland who has been unfortunate enough to have a sick child, has probably darkened the doors of Crumlin hospital and while the reports of the friendly staff and wonderful doctors, are glowing, the hospital itself has come in for some harsh criticisms.
When you support fundraising for things like Crumlin Children's Hospital or the Go Gold campaign, you are not only giving money, you are giving children and their families a tiny beacon of hope and a light of the end of their very bleak tunnel.
Throughout this month, I will be writing about childhood cancer to raise awareness about the Go Gold campaign and I will be telling my story about childhood cancer, how we coped with Lily-Mae's diagnosis, how we saw the lively and bubbly little girl turn into a mere shadow of herself and how there were bleak days and weeks, but also moments of sheer giddiness, utter ridiculousness and tiny little drops of happiness in an otherwise unthinkable time.
A few horrifying facts and figures;
- Childhood cancer is the number one killer of children.
- One in every 330 children will develop cancer before they reach the age of 19.
- One out of every five children diagnosed with cancer, will die.
- Cancer in children strikes regularly, randomly and without mercy.
For more information, Like the Go Gold for Childhood Cancer Awareness Facebook page or follow them on Twitter.
Monday, April 20, 2015
Dealing with arthritis at a young age
When people hear the word arthritis, it generally conjures up images of an elderly man or woman with gnarled hands and stiff joints - at the very mention of the word, the mental association is automatically made between it and old people.
As a general rule of thumb, people don't think of someone young, active and at the peak of their life.
This is where my story comes in and more often than not, when I tell people that I have arthritis, they are firstly shocked and then intrigued, because they want to know my secret - how do I look so healthy, how did they not know that I suffered from this terrible affliction and why does such a horrible disease affect someone so young?
I am 27-years-old, but my journey with arthritis goes back quite a few years. To start off, I will say this - I have Psoriatic Arthritis, I've had it since I was 18, it's genetic and because of the disease modification drugs that I inject into my stomach each week, it will never get worse, thankfully.
Because of this, believe it or not, I am quite lucky, because if I had Rheumatoid Arthritis, by now my career would be a distant dream, getting around, either on foot or by car, would be almost impossible, my joints would be visibly changed from, say ten years ago and I would be considering life in a wheelchair with limited mobility, strength and range of movement, as a fate that would be, sadly, not too far away.
Luckily (and I know that it seems bizarre to say this when I have a terrible, life limiting, auto-immune disease), this is the best of the types of arthritis to have and for that, I am truly thankful and grateful.
I have had psoriasis, mainly on my scalp and around my ears, since I was about nine-years-old and when I was 18, I started to develop problems when walking uphill. A doctor in my GP's clinic thought it was the way I walked and I was given orthotics, which, as you can imagine, made little or no difference to my arthritis.
Walking uphill or across challenging terrain was getting more difficult and I seemed to get out of breath quickly, despite the fact that I was a weensy size 6 and quite fit (I know, unhealthily small, but I am only 4"10, so I didn't seem out of proportion) and when I was in third year in college in the University of Limerick, my life was forever altered. It is worth noting that all of this started around the time of my Leaving Certificate, so possibly the most stressful time of my life, or at least the start of it.
I had gone on Erasmus in Norway and just a month or so before I was due to return home for Christmas, I woke up one morning and two of my toes were purple and looked like tiny cocktail sausages (sounds odd I know). Having a history of sleep walking, I presumed that I had violently kicked the wall in my sleep and broken my toes, so I got an X-Ray, which revealed that there were no broken bones.
A Norwegian girl who I was friends with then mentioned her own Psoriatic Arthritis and after a feverish bout of Googling, I realised that the symptoms were all too familiar and alarm bells were ringing loud and clear.
Upon my return home, my own GP was quite concerned and I was sent to a rheumatologist, where I was diagnosed and put on a course of treatment.
They started me on steroids to halt the acceleration of the disease and methotrexate tablets, but I was soon put on Metoject and Enbrel injections, which I had to administer to myself as injections once a week.
I am a queasy person and the first time I injected, I was alone in the house and I can quite honestly say, it was awful. Thankfully, I am now rather used to it, even blase to be honest and the only major downsides are that the injections make me feel nauseous and now, after years of injecting, I have horrible lumps and scars all around my stomach near the injection sites.
Because I was so young at the point of diagnosis, unfortunately for me, I seemed to present the consultants with an exciting medical opportunity and for many years, my dosage was toyed with in an effort to study the effects and see how far my disease would spread - I was their guinea pig and the fact that my life had to be put on hold every time they played with my medication didn't seem to bother them.
This meant that even though the arthritis originally only affected my toes, ankles, wrists and fingers, it now affects all of my joints and is most severe in my spine, hips and knees.
Five years ago, arthritis was something in the background of my life, now it is to the forefront and is a pivotal consideration for most of my major life decisions and the tiny trivial everyday things, like what size handbag I use and how far I park my car away from the shops.
When my arthritis flares up (sadly, more often that you'd think and this intensifies if I'm under pressure or particularly stressed), things that people twice my age take for granted, like being able to hold a mug of tea or coffee, opening a jar or carrying a bag, all present themselves as mammoth tasks, that not only seem very difficult, but are often, genuinely impossible.
Because my arthritis isn't really visible, this has led to awkward public situations where older people, who are often perfectly fit and have better joints than I do, have asked me to give up my seat on a bus or train, give me a dirty look if I take an available seat while they are queuing or even complain if I get table service in a restaurant that doesn't typically offer that service - this is why I will never judge someone without knowing the facts, you have no idea what someone is going through or what kind of inner battle they are fighting.
Whenever I am going through a flare up, I feel useless, pathetic and feeble enough without someone I don't know making me feel worse.
Sometimes the pain is so bad that I can't untie my own shoelaces, I can't open a bottle of water or even hold my own book to read a few chapters - this is the reality of having arthritis - it is horrible and demeaning and I genuinely wouldn't wish it on my own worst enemies.
Luckily, I have a fantastic support network around me, with wonderful friends, family and my boyfriend - without them, I really don't know how I would manage and even from a mental health point of view, I think it would be impossible to stay positive without their kindness, support and help, with even the smallest of things.
They are patient, understanding and loving - sometimes it's driving me somewhere if I'm too sore to get behind the wheel and other times, it's just giving me a hug when I'm a bit down, but no matter what it is, it's knowing that they are there, behind me, to catch me if I fall (literally or metaphorically) or knowing that they will wipe away my tears when I can't muster up the energy to smile and the tears flow relentlessly.
I am quite open about having arthritis, I mean I don't make a huge deal about it, but I don't hide it either and what I've noticed lately is that my openness has spurred other people on to talk about their own diagnosis, because sadly a lot of people do associate the disease with a deep rooted shame.
I hope that this entry makes people think before they judge someone, that they might find out what's going on before making assumptions and take somebody's inner battles into consideration before making what they think is a light or witty remark, which could really hurt someone who is already feeling vulnerable.
As a general rule of thumb, people don't think of someone young, active and at the peak of their life.
This is where my story comes in and more often than not, when I tell people that I have arthritis, they are firstly shocked and then intrigued, because they want to know my secret - how do I look so healthy, how did they not know that I suffered from this terrible affliction and why does such a horrible disease affect someone so young?
I am 27-years-old, but my journey with arthritis goes back quite a few years. To start off, I will say this - I have Psoriatic Arthritis, I've had it since I was 18, it's genetic and because of the disease modification drugs that I inject into my stomach each week, it will never get worse, thankfully.
Because of this, believe it or not, I am quite lucky, because if I had Rheumatoid Arthritis, by now my career would be a distant dream, getting around, either on foot or by car, would be almost impossible, my joints would be visibly changed from, say ten years ago and I would be considering life in a wheelchair with limited mobility, strength and range of movement, as a fate that would be, sadly, not too far away.
Luckily (and I know that it seems bizarre to say this when I have a terrible, life limiting, auto-immune disease), this is the best of the types of arthritis to have and for that, I am truly thankful and grateful.
I have had psoriasis, mainly on my scalp and around my ears, since I was about nine-years-old and when I was 18, I started to develop problems when walking uphill. A doctor in my GP's clinic thought it was the way I walked and I was given orthotics, which, as you can imagine, made little or no difference to my arthritis.
Walking uphill or across challenging terrain was getting more difficult and I seemed to get out of breath quickly, despite the fact that I was a weensy size 6 and quite fit (I know, unhealthily small, but I am only 4"10, so I didn't seem out of proportion) and when I was in third year in college in the University of Limerick, my life was forever altered. It is worth noting that all of this started around the time of my Leaving Certificate, so possibly the most stressful time of my life, or at least the start of it.
I had gone on Erasmus in Norway and just a month or so before I was due to return home for Christmas, I woke up one morning and two of my toes were purple and looked like tiny cocktail sausages (sounds odd I know). Having a history of sleep walking, I presumed that I had violently kicked the wall in my sleep and broken my toes, so I got an X-Ray, which revealed that there were no broken bones.
A Norwegian girl who I was friends with then mentioned her own Psoriatic Arthritis and after a feverish bout of Googling, I realised that the symptoms were all too familiar and alarm bells were ringing loud and clear.
Upon my return home, my own GP was quite concerned and I was sent to a rheumatologist, where I was diagnosed and put on a course of treatment.
They started me on steroids to halt the acceleration of the disease and methotrexate tablets, but I was soon put on Metoject and Enbrel injections, which I had to administer to myself as injections once a week.
I am a queasy person and the first time I injected, I was alone in the house and I can quite honestly say, it was awful. Thankfully, I am now rather used to it, even blase to be honest and the only major downsides are that the injections make me feel nauseous and now, after years of injecting, I have horrible lumps and scars all around my stomach near the injection sites.
Because I was so young at the point of diagnosis, unfortunately for me, I seemed to present the consultants with an exciting medical opportunity and for many years, my dosage was toyed with in an effort to study the effects and see how far my disease would spread - I was their guinea pig and the fact that my life had to be put on hold every time they played with my medication didn't seem to bother them.
This meant that even though the arthritis originally only affected my toes, ankles, wrists and fingers, it now affects all of my joints and is most severe in my spine, hips and knees.
Five years ago, arthritis was something in the background of my life, now it is to the forefront and is a pivotal consideration for most of my major life decisions and the tiny trivial everyday things, like what size handbag I use and how far I park my car away from the shops.
When my arthritis flares up (sadly, more often that you'd think and this intensifies if I'm under pressure or particularly stressed), things that people twice my age take for granted, like being able to hold a mug of tea or coffee, opening a jar or carrying a bag, all present themselves as mammoth tasks, that not only seem very difficult, but are often, genuinely impossible.
Because my arthritis isn't really visible, this has led to awkward public situations where older people, who are often perfectly fit and have better joints than I do, have asked me to give up my seat on a bus or train, give me a dirty look if I take an available seat while they are queuing or even complain if I get table service in a restaurant that doesn't typically offer that service - this is why I will never judge someone without knowing the facts, you have no idea what someone is going through or what kind of inner battle they are fighting.
Whenever I am going through a flare up, I feel useless, pathetic and feeble enough without someone I don't know making me feel worse.
Sometimes the pain is so bad that I can't untie my own shoelaces, I can't open a bottle of water or even hold my own book to read a few chapters - this is the reality of having arthritis - it is horrible and demeaning and I genuinely wouldn't wish it on my own worst enemies.
Luckily, I have a fantastic support network around me, with wonderful friends, family and my boyfriend - without them, I really don't know how I would manage and even from a mental health point of view, I think it would be impossible to stay positive without their kindness, support and help, with even the smallest of things.
They are patient, understanding and loving - sometimes it's driving me somewhere if I'm too sore to get behind the wheel and other times, it's just giving me a hug when I'm a bit down, but no matter what it is, it's knowing that they are there, behind me, to catch me if I fall (literally or metaphorically) or knowing that they will wipe away my tears when I can't muster up the energy to smile and the tears flow relentlessly.
I am quite open about having arthritis, I mean I don't make a huge deal about it, but I don't hide it either and what I've noticed lately is that my openness has spurred other people on to talk about their own diagnosis, because sadly a lot of people do associate the disease with a deep rooted shame.
I hope that this entry makes people think before they judge someone, that they might find out what's going on before making assumptions and take somebody's inner battles into consideration before making what they think is a light or witty remark, which could really hurt someone who is already feeling vulnerable.
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