Go Gold for Childhood Cancer - Four Years Ago Ireland's Tiny Dancer came into her own

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.

When is your Monday?

Created using a meme generator. Copyright Sandra Quinn, Quinn's Quandries 2016. 

Earlier this week, one of my sisters was chatting to me and she said that today (Wednesday, as it was), was her Monday and it got me thinking that everyone has their own Monday in some way.

Now, she starts the working week due to the employee schedule, on a Wednesday, so she meant that her week doesn't start until then.

For me, I have spent most of my print journalism career so far working in weekly newspapers, so my Monday has always been the day we go to press (or get printed, for those outside the media circle).

I guess the point of the previous three paragraphs, is that you can choose your Monday. Monday does not have to be the first day of the week - it is just the day in which you get the most done, the day you feel like everything starts from a clean slate and you can approach all tasks with a fresh outlook and a rejuvenated feeling that you just don't get at the end of the week.

I see my Monday as when I get the most done, when I'm in a good mood and getting the jobs done does not seem like a wearisome chore that I just cannot face.

I'm not really sure if there was a wider aim with this post other than to make people aware that the standardised Monday on the calendar does not have to be your Monday, let that day be whenever you are at your most fulfilled, productive and happy.

On another note and to put a bit of authority behind this post, I spoke to a friend who reads Angel cards and she told me that the Monday for each person could be linked to their star sign, so perhaps it would be worth looking that up to see if your real Monday aligns with your star sign Monday or not.

Bit of a short and sweet post today and as always, if you enjoyed it, please share it and let others enjoy it too.

Why is bending down to your child's level to be shunned?

The perfect picture, as three generations of the one family all get stuck into figuring out a new toy. Copyright Sandra Quinn, Quinn's Quandries 2016. 

Yesterday morning, I read an article about Kate Middleton being potentially shunned by the Queen for bending down to her son George during a Royal tour in Canada.

A similar 'incident' if you can call it that, happened to Prince William when he bent down to George at another engagement and the media interpreted the Queen, or so they think, telling him to stand up immediately.

To give you the backstory, the Duke and Duchess of Cambridge had just arrived in Canada with their two adorable children George and Charlotte. They were greeted by the Prime Minister Justin Trudeau and his wife Sophie.

At one point, Kate bends down to speak to George, as she has Charlotte resting happily on her hip. I shall refer to her as Kate, as I think using the term, 'The Duchess' is a bit highfalutin - I had to Google how to spell this, rest assured that there are no airs, graces or notions of grandeur here.

What we saw was a picture of a real family, despite the Royal titles, if you ask me, and yet the picture is plastered all over the papers and Kate is being chastised for doing something, which the Queen 'may' not approve of.

Ridiculous if you ask me.

To me, children feel loved, respected and like equals if adults get down to their level (literally), sit on the floor to play with them and muck in, so to speak.

My parents used to always say that if an adult came into a room filled with children and didn't get down on their knees and start playing, that they were not to be trusted and it is a measure of trust that I have always used.

I come from a big family - I have five sisters and one brother, and growing up, we all had our own little groups of friends, so our house was a veritable hive of child activity, for a few decades to say the least.

I was also an aunt from a young age and did my fair share of babysitting as a young 'un, so I  am used to kids and they seem to like me (though not as much as they like my boyfriend - even with my own two young nephews, my boyfriend is the solid favourite).

If I walk into a room and there are children playing on the floor, you are far more likely to find anyone from my family kneeling down there with them and getting stuck into the wonderful imaginary game, rather than standing up chatting to the potentially 'boring' adults and drinking tea.

So, I ask you, are you the type to kneel down and start playing or are you the adult who tells the child to be quiet and play in the corner, while the 'grown ups' chat?

Go Gold for Childhood Cancer - parents will do anything for their children

Leighton and Judy with their darling children, Evan and Lily-Mae at the recording of Tiny Dancer, a Song for Lily Mae.

Judy - Lily-Mae's mother, is my mother's niece - the daughter of my late Uncle Tommy and when I found out her little angel was dreadfully ill, it broke my heart.

To be quite honest, our family is scattered generously across Ireland, the UK and a little further, so I hadn't even met Lily-Mae before she got sick, as they lived in Galway and at the time, I was living in Cork.

She may have been a tiny baby at a family funeral, but I did not know the little girl she had become.

I'm not going to pretend that we were all like peas in a pod, but for those of us who knew Lily-Mae and Evan and for those of us who met her after her horrible tale with wicked cancer began, her story and her plight touched all of her hearts and we wanted to do anything we could to help.

My sister's boyfriend organised comedy gigs in Kilkenny, others took part in marathons, runs and walks, others sold CD's for the charity single and we all did what we could to help out.

As part of her aggressive treatment, Lily-Mae, this tiny, fragile and adorable four-year-old, was travelling to Dublin regularly and it was my aunt's house where I first met her and really got to know her, both as my tiny cousin and the little darling the whole nation and most of the world were soon to fall in love with.

Lily-Mae's sweet nature, those eyes filled with wonderment and the possibility of tomorrow and her willingness to perform and take centre stage at every given opportunity - these were the traits, which endeared her to the nation.

With tubes coming out of her, tablets the size of marbles and more pain than any child should have to endure, Lily-Mae still wanted to perform, to have everyone smile at her and clap. To be the main attraction for the duration of her one-woman show (though sometimes Evan was given a token supporting role - as they have aged, their performances have become more like equal duets, as her little brother is coming into his own, both as a little boy and as a performer).

I remember it vividly, she sang a little song, which had terribly complicated lyrics, which I would struggle to remember and an accompanying dance. That night, she told her mother that her cousin could come in and say goodnight - even while feeling poorly, she was a formidable little lady, so I went in and was told in the sweetest and most hilarious way that I 'may kiss her good night on the cheek'.

From that day, she had a special place in my heart and as I read the updates from Judy on her own Facebook page and through the Tiny Dancer A Song for Lily-Mae page, I almost felt her pain, as I read about tests, infections, medication, treatment and how Lily-Mae would have to travel to America to have a true chance at fighting Neuroblastoma.

It was at this point that the strength, resilience and resourcefulness of Leighton and Judy shone through. With the help of Judy's family and particularly her brother Paul Hayes and their combined contacts in the world of show business, dancing, theatre, music, production and media, they soon had an army of people who wanted to do what they could to raise the funds to take Lily-Mae stateside.

Tiny Dancer A Song for Lily-Mae was recorded on September 30, 2012, just months after Lily-Mae's diagnosis, in The Black Box Theatre in Galway.  Countless people gathered together to add their voice to the song, which could help break down the barriers and raise awareness of childhood cancers like Neuroblastoma.

Despite how awful and harrowing each passing day must have been, Judy and Leighton were valiant in their efforts and in their fearless PR campaign. They went on television shows, they were in the news regularly, pictures of their family were scattered liberally across newspapers in Ireland and further afield and Judy's voice on the airwaves became a regular feature.

As a journalist in the print media, I know that it is no easy feat to talk on the radio and throughout my career, I have been on the radio many times (the first article on this blog about childhood cancer was followed by me speaking on Cork's 96fm with PJ Coogan), so I can only imagine how hard it is to open up your life to public scrutiny and let the media into your sitting room, all for the greater good of raising funds and awareness.

When a child is hurt or needs help, their parents will do anything they can to ease the pain or make the problem go away, but what Judy and Leighton did was amazing and went beyond all expectations. They put themselves out there and brought the plight of their little girl into every sitting room, office, school, creche and bus.

The stellar fundraising campaign raised 420,000 Euros. While Lily-Mae is now quite healthy, there is a 70% chance that she will relapse and if this happens, funds will be needed to bring the little girl to Europe or America and if she does not relapse, the money will go towards the Neuroblastoma Society.

Neuroblastoma is a rare an aggressive form of childhood cancer, which affects one in every 100,000 children in Ireland.

Many of you, my readers, will have seen Lily-Mae on television, on the news, in videos and have gotten to know her through social media, as we all went on the journey with her.

For those who don't know her, she is a little performer, she wants to be a ballerina when she grows up, she likes fairies, dinosaurs and the colour purple. One of the aims of the campaign for Lily-Mae was to raise awareness about Neuroblastoma, so that it would be a cancer that people wouldn't have to Google.

Peter Rabbit is not just a children's character

I, like many others, I am sure, now hark back to my favourite childhood characters in times of need.

Now, I'm not saying that I go to Peter Rabbit (my personal favourite) when there's an actual crisis or I'm trying to work my way out of a potentially life threatening situation, but the nuggets of wisdom do come in handy once in a while in adult life.

CS Lewis once said; "Some day you will be old enough to start reading fairy tales again," and that quote is quite apt here.

I'm not really sure why I was (and still am to be honest) so fond of little ole Peter Rabbit, but I suspect it was because there were so many siblings in Peter's family and Peter still managed to stand out.

I have one brother and five sisters, so was often vying for attention or trying (in vain I dare say) to hog the limelight and perhaps that is why Peter and I had a connection (he may not know about it, but it was there I assure you and it was rather a tangible connection at that). I think maybe on some level, I was hoping I could glean some tips or hints from Peter's behaviour.

Now, obviously I didn't go off stealing carrots from a neighbouring farmer's land, but my siblings will argue that I was quite bold and irritating as a young child (I know it's hard to imagine when you see the kind of adult I have become, or not), so maybe I did have a little bit of Peter in me.

Anyway, here are a few of my favourite quotes from Peter Rabbit and from the wise pen of Beatrix Potter (these are not only my favourite quotes, but the ones that I think can be applied to adult life as helpful, if a bit randomly sourced, kernels of wisdom);

• "Peter was most dreadfully frightened; he rushed all over the garden, for he had forgotten the way back to the gate," - sometimes when you panic and stress out, you actually slow yourself down with your rushing and racing about. 
• "Peter gave himself up for lost, and shed big tears; but his sobs were overheard by some friendlys sparrows, who flew to him in great excitement, and implored him to exert himself," sometimes it does take a friend's advice to see that more work needs to be done or that we need to work harder to get past something. 
• "Twinkleberry and six other little squirrels each carried a fat minnow; but Nutkin, who had no manners, brought no present at all," never arrive empty handed. 
• "In the time of swords and periwigs and full-skirted coats with flowered lappets - when gentlemen wore ruffles, and goldlaced waistcoats of paduasoy and taffeta - there lived a tailor in Gloucester," imagine living in those times and perhaps some day, people will say, in a time of laptops, tablets and smart phones when men wore skinny jeans and guyliner. 
• "It is said that the effect of eating too much lettuce is 'soporific'. I have never felt sleepy after eating lettuces; but then I am not a rabbit," I love that a children's tale is so well written, that even as an adult, I may have to use a dictionary. This is true of anything, if you are a glutton, you will feel sleepy, sluggish and bloated. Everything in moderation I think. 

So, if you take anything away from this blog post, aside from all of the sage advice of course, maybe it will be to pick up that old favourite tale from your youth and see what the adult (and child within) thinks of the messages and morals it is trying to impart. 

Smiling on the outside, broken on the inside

The knowing looks, hushed remarks and unspoken judgements - this is the reality of living with an invisible illness.

As many of my followers will know, I have arthritis and have had it since I was in college, so I'm used to the questions, queries and funny looks, because like many others with an invisible illness, it is very hard for someone on the outside looking in, to know that there is something 'wrong' with me.

Recently, I was out while my condition was flaring up and as often happens when I am stressed or going through something, I was in a good deal of pain.

To cope with this pain, I had been taking a number of tablets, which of course no one would know to look at me, but towards the end of the day, I decided I needed something more and I put on a pain patch.

As it was a hot day and I was wearing a dress, it was difficult to put the patch on somewhere inconspicuous, as it wouldn't stay put, so I opted for putting in on my wrist (it works better on smaller joints) and secured it with my watch.

Even though it just looks like a bandage, there were funny looks when I was in the supermarket, little whispered comments when I got into my car and questions from those who knew me, about what it was.

Now, while I don't mind and in fact, welcome questions about my disease, as I think that  knowledge is the answer to all ignorance and unfair judgement in most situations, I don't like it when people make assumptions or judge me because of one tiny thing.

I am also well aware that within the realm of invisible illnesses, there are people out there who have much more serious problems than I have and they are not just hiding a pain patch or a wrist support, but instead tubes, bandages, cathaters and much more.

One thing people often say to me is that I'm always smiling (firstly, this isn't true sadly, I get fierce cranky - particularly if I haven't eaten in a while or things aren't going the way they should), but just remember that if I'm out and about, smiling and going about my business, I'm having a good day.

When I'm having a bad arthritis day, you won't see me smiling, because you won't see me at all - I will be in bed, in agony, doing everything I can to simply go through the motions and get through the day.

My main point here with this blog post is not to make people feel bad or to point the finger at anyone, but to merely get people to stop and take a minute before they make a snap judgement, whisper a snide remark or shoot someone a dirty look.

You don't know what people are going through and as Bob Dylan's grandmother once advised him;  "Be kind, because everyone you'll ever meet is fighting a hard battle."

Sound advice if you ask me and as Bob Dylan's granny, I imagine she was a pretty cool lady to be honest. 

Leanne Dixon has written a song for you...

Ballyporeen singer songwriter Leanne Dixon has just released her newest song, as a teaser for the EP to come.

'Song for You' was written by Leanne and contrasts to previous releases, which were written by her brother Stewart.

The young woman from South Tipperary has a 'Beautiful South' echo to her voice in this track and it is clear that the song comes from the heart and really tells a story, giving a snapshot into a scene from Leanne's own life.

With a slight country and western tinge to it, the song is catchy and will have you singing along.

I have been writing about the Dixon siblings since they first released their own music and they have been making waves on the Irish music scene ever since - Leanne's rendition of Skyfall by Adele is particularly haunting and stunning (request it the next time she takes to the stage in your vicinity).

Leanne released her debut EP in 2014 and Slide Away, Sail Away sold more than 150 copies, won seven awards and continues to garner acclaim.

'Song for You' will be released on September 23 and will be the first release from her new EP Brand New Day.

Time to sit back and await the EP release now...