BK’s YouTube Pick: Wait for it…

I had wanted to post this on August 31st, but it was only on the Truth 365 facebook page. Now it’s on YouTube. Already, I’m getting responses from my yellowness where people have told me they had always just assumed that childhood cancer gets tons of funding the same as breast cancer, lung cancer, prostate cancer etc.

There seems to be a lack of information on exactly how research gets funded here in the UK. I do know there is no government funding for DIPG, and I don’t think there was anything for Rhabdoid tumours either. To my knowledge, pretty much all the funding for research comes from very specialised charities like Love Oliver, Bloodwise, Sarcoma UK, The Katy Holmes Trust etc. I am very glad we’ve got the Teenage Cancer Trust too, which is a great organisation making such a difference not just for research, but raising awareness, education and supporting teens in adult hospitals.

You’ll probably find just about every charity has been started by a family who has lost a child to the disease they are researching. Because once you’re in it, and you discover how much is lacking and how much is needed…you can’t sit back and do nothing.

Hence….I’m wearing my yellow and gold!

Remembering a girl who loved yellow…

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Today, I went into work with my nails painted yellow. I’ve done this once before  – on the day after American Thanksgiving  – and for the same reason.

To remember a girl whose favourite colour was yellow.

Today several of my colleagues commented on my sunshiney nails – it was a grey rainy then snowy day in our city, so the yellow stood out more than usual. And I took great honour in explaining that today my nails were yellow because there was a girl who walked this earth until this day last year. Her name was Kylie, and she taught us all how to smile…and when cancer, chemo and radiation did it’s best to stop her smiling, there was whole army of people around the world who did their best to smile for her.

Earlier this week a lovely young girl came into our shop who was in a battle with the C word. Pesky, stinking, conniving cancer. She had made herself a beautiful headscarf that had this ornate gold decoration stitched onto it. It was the gold that made me think of all the kids that have gone through similar battles. Back in September it was childhood cancer awareness month and I spent that month with frozen feet wearing a pair of gold flats – gold and yellow being the colour that symbolises childhood cancer.  I know that there’ll be many more days when I am making bears that become buddies for hospital stays. Bears to remember people by. I’ve done many already and I have to take a breath each time…but there have been many times my colleagues have had to take a moment to go behind a door and cry once customers have left the store. It is an honour and a privilege each time we make a bear that has such meaning to someone, but just like the days where I counselled women and men through their losses…there are stories that simply break your heart.

One of my little customers in the afternoon told me how much she liked my yellow nails as I was stitching up a bear for her. Her nails were gold. I could only smile when she advised me “you should paint smiles on! That would look really good with the yellow“.I simply replied “that’s a great idea! I might have to try that!” She had no idea why that made me almost want to cry…because that’s exactly what I plan to do 11 days from now.

My nails will be Smiley for Kylie.

Kylie’s family have been sharing their letters to Kylie on Mark’s (Kylie’s Daddy) blog. They have been informing my prayers for the Myers clan over the last few days. People have also been writing letters to Kylie on the Smiley for Kylie facebook page. Please be thinking of Kylie’s family today as they walk through this first anniversary of Kylie’s earthly death.

And let’s keep working to realise Kylie and so many others wish come true…to stop childhood cancer for good.

This song/video was made by an organisation based in Minnesota. The band, Quietdrive wrote it inspired by another young girl who battled cancer twice. The song has been stuck in my head like an earworm all this week.

Also, the organisation that Kylie and her family have been working with to raise awareness for the need for more research and funding to find better treatments and a cure for childhood cancers released a film this week which Kylie and her Dad both feature in. Please, especially if you are based in the US, do share it with others if you can.

🙂

World Cancer Day

Today is World Cancer Day.

My friend is remembering her Mum today. We could barely recognise her in the last months of her life. My other friend is organising his wife’s funeral with his two teenage daughters. She died last Friday evening. My friend lost her Mum before she was a teenager. Another friend and his wife lost their son before his 1st birthday. He never knew life without cancer. I imagine that the other Ranger unit in our area is remembering their friend. She will never ‘graduate’ from high school because cancer took away that chance. And our Very Airmail Christmas honouree, Kylie? She never got to become a teenager. Cancer took away her chance to experience her Make-A-Wish trip and her 13th birthday. Right now, there’s a Brownie called Keira who has battled with cancer since she was a Rainbow and is about to try and do battle with a second tumour. Keira has DIPG – a cancer that no UK government funding goes into research for – unsurprisingly it only has a 10% survival rate. All the research is funded by charitable donations from small parent-led charities like this one.

Kylie said that she thought that “cancer should die, not the kids”.

I agree Kylie, I agree.

And I believe like many medical scientists do, that if we find better treatments and cures for childhood cancers, it’s going to help us fight the adult cancers too.

Because it certainly isn’t happening the other way around.

Quote of the Week 18: Happiness is not a limited resource

This weekend saw the TV premiere of ‘The C Word’ (the film adaptation of Lisa Lynch’s book of the same name about her battle with breast cancer). Yesterday would have been Zach Sobiech‘s 20th birthday. This weekend Carrie Bickmore used her Gold Logie Acceptance Speech to call on Australian TV personalities to wear #BeaniesForBrainCancer, in honour of her late husband who died of the disease when their son was just 3 years old, to raise awareness for the need for more funding. Today I woke up to see this post on my reader showing the launch of the Truth365 PSA on Broadway that Kylie Myers featured in. And it’s also the one year anniversary of Christopher Aiff’s death.

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Lisa Lynch called her cancer diagnosis ‘The Bullshit’, and there sure is a lot of shitty stuff going on in the world. I really don’t care if you’re offended by that language, because I feel like ‘rubbish’ doesn’t cut it when it comes to stuff like this. I have friends that are going through some really crummy, shitty things involving death and dying. And I wish that they didn’t have to go through it.

It’s not that Chris is saying that cancer is fun. It’s that even in all the crummy shittiness there is still joy to be found somewhere. And joy and happiness is not something that only a certain number of people can have for a limited amount of time.

It’s unlimited.

When a mother gives birth to another child, it’s not that she has to halve the love for her first to give the other half to the second. There’s simply more love that comes.

It’s not a limited resource.

Chris actually explains it much better than I ever could. So I will let him share his wisdom.

“The decision to be positive is not one that disregards or belittles the sadness that exists, it is rather a conscious choice to focus on the good, and to cultivate happiness and genuine happiness. Happiness is not a limited resource. And when we devote our energy and time to trivial matters and choose to stress over things that ultimately are insignificant, from that point on we perpetuate our own sadness and we lose sight of the things that really make us happy and rationalise our way out of doing amazing things.”

-Christopher Aiff, 2012, My Last Days

It is for good reason that Chris’ sister and many of his friends got that inked permanently on their skin so they’d always remember his message.

Happiness is not a limited resource. And let us choose to focus our energy on cultivating it.

Although I’d quite like us to find a cure for cancer and a cure for Cystic Fibrosis too (that would make a lot of people very happy).

BK’s YouTube Picks: The Truth About Childhood Cancer

I’ve been caught on the uni train over the last couple of months, but today, I wanted to come home and share with you an important message.

Today, a wonderful, wise, spunky, talented young woman named Kylie Myers should have been having her 13th birthday. Instead, last week her family and friends came together as they mourned her death from Ewing’s Sarcoma, all wearing Kylie’s favourite colour of yellow (which also happens to be the colour for children’s cancer awareness). It was last Autumn I learned of the Myers family when the 1 Million 4 Anna Foundation shared a video Kylie had made doing a parody cover of ‘All About that Bass’. On Christmas Day my Mum and I took ‘Smiley for Kylie’ photos to post to the Myers family on twitter down near Cramond Island in Edinburgh – the aim was to have Smiley for Kylie photos from every country in the world. It may sound trivial, but I know from when I’ve faced difficult times, how much it has encouraged me to keep pushing on and fighting through having messages and words of encouragement from the online community.

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Kylie and her family, and her friend, Bailey (an osteosarcoma survivor) were involved in the Truth 365 campaign – which is trying to raise awareness and action to get the government to put more of their cancer research funding into childhood cancer research and giving a voice to the children who have battled childhood cancers. It is RIDICULOUS how little has changed for children’s cancer research and how little funding it gets because of it being “rare”. (By the way, this isn’t just an American thing, in the UK very little research funding goes to childhood cancers either).

So my YouTube Pick of the week is from Truth 365 – videos from Kylie, and her three close friends.

Kylie may be in a better place…but it sucks that the world lost her when she had so much talent, love, joy and wisdom to bring to us all. And I will continue raising my voice about the need for more research (and help raise funds where I can too).

Also please be thinking of Kylie’s family today – her Mum, Dad and three sisters especially. They are Christians, so I know if you believe in the power of prayer and want to pray for them, they will appreciate it. You can also in Kylie’s honour, make someone smile and/or take a smiley selfie. They would love it if you could post it on twitter or instagram with the #SmileItForward hashtag or tag Kylie’s twitter & instagram (@smileyforkylie). If it’s making someone smile, they’d love to hear what you did to make that person smile. Annoyingly, I’m all alone in the house tonight so I’ve got no one to sing or do silly dance to! I had to settle for trying to take a silly selfie at the university (which resulted in some weird looks from university staff and a few students walking past).

To all the families like the Myers clan who have battled cancer and want to end the fight once and for all…

…we stand with you.