Why my feet are both cold and gold…

Throughout September, when I’ve not been at work, I’ve been wearing a pair of gold shoes…
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…Practical? No. They don’t fit that well as they are slightly too big for my skinny feet, plus they don’t exactly keep me warm in the Scottish climate. But there’s a specific reason why I’ve been wearing them as much as I can. Because we need better treatments for childhood cancers to help kids like Markell.


You’ve heard me mention Patrice’s sister, Anna. Anna’s family ‘introduced’ us to Kylie Myers. Anna and Kylie sadly both died having gone through months and months of chemotherapy and radiation for Ewing’s Sarcoma. If I’m not mistaken, Kylie’s Dad mentioned on social media that the treatment regimen Kylie was on was 40 years old. A lot of you know of Zach Sobiech. He, like Markell and Kylie’s friend Bailey, had osteosarcoma. There have been no new treatments for that type of cancer for over 20 years. However, researchers recently had a breakthrough at the University of Minnesota (which Zach’s fund helps) as they believe they’ve identified a way of discovering what genetic mutations cause reoccurrence of the disease. I continually pray for Bailey and other survivors I know of – that they never do have a reoccurrence of cancer. If you live near me, you’ll likely of heard of a local hero called Jak Trueman. He had a rare form of lymphoma. And there’s of course, Oliver. Oliver was 24 weeks old when he died. He had the awful luck of being born with cancer. His awesome parents (one of which I went to university with) have been raising funds to support childhood cancer research and families getting treatment in Ward 2 at the Royal Hospital for Sick Children in Edinburgh where Oliver spent a lot of his short life. Had it not been for stinking cancer, Oliver would have been starting school this Autumn.

So what can you do?

Well there’s still over a week of September to go.

All over the USA, people are doing the Whipping Challenge…Donating $46 dollars to a childhood cancer charity and taking a cream pie to the face.
Wear Gold. Talia Castellano‘s family and friends are using the hashtag #AmpItUpGoGold and because of Talia’s love of make up and nail art encouraging folks to wear gold make up or nails. Take pictures. And when people ask why you are wearing so much gold…you can tell them.
Download Clouds and/or Beautiful Boy. Profits from the sales of these songs go to Childhood Cancer research.
Do something to support families who are going through a battle with this disease. Contact your nearest children’s hospital to find out what you can do. Many families have to travel for treatment – things like gift cards, raising money for better facilities in hospital accommodation, equipment/toys for the ward can be a huge encouragement. Most children’s hospitals have a charity (like Sick Kids Foundation in Edinburgh) and there may be something like CLIC Sargent villa, Teenage Cancer Trust ward or Ronald McDonald House.
Raise money for a Childhood Cancer charity. Sadly, very little funding goes into research of childhood cancers like Osteosarcoma, Ewing’s Sarcoma, Neuroblastoma, retinoblastoma ALL, AML, Wilm’s Tumour…and a lot of childhood cancers are so very different from adult cancers we probably all know of. Yes Childhood cancer is much rarer than adult cancers (1,600 kids compared to 320,500 adults), but there are much more adults to get cancer since child means anyone between 0-16ish and adult means anyone with in a 80+ year age range.  Not only that but the current treatments for children are pretty horrific and have huge long term effects. They are not ‘cures’ when a kid needs a kidney transplant down the line, or a leg amputated, or have hearing loss, infertility or contract leukaemia years later. I also can’t help but notice the ‘survival rates’ they use mean they ‘live for at least 5 years’. It is the smaller foundations like Love Oliver, the Zach Sobiech Osteosarcoma Fund, 1 Million 4 Anna that make a huge difference  and are so important for funding research by partnering with hospitals/universities.
If you can, donate blood. A lot of childhood cancer patients will need blood and platelets at some point (if not at several points) during treatment. I used to be scared of this idea, as the sight of my own blood makes me light headed (yet I can totally deal with other people’s nose bleeds and head injuries no problem – go figure!). Blood donor centres are used to nervous donors! It is not painful, and if you tell them what makes you nervous they will do things to make the process easier for you. For me they allowed a friend to sit with me to distract me, and covered the tube in paper towels so I couldn’t see anything coming out of me. Another friend got to donate behind a screen so he couldn’t see anyone else either!

If you live locally to me, I’m also going to give you the opportunity to help ‘whip’ childhood cancer into submission. In exchange for a donation to Love Oliver, you will be allowed to smoosh a plate of skooshy cream* in my face. I’ll even let you take a picture of the results and post it on social media. If you want to take advantage of this opportunity, please do message me and I can make the appropriate arrangements. 🙂

*Skooshy Cream = Scottish term for whipped cream in a can. Not, as we proved on my old blog, a term I made up as my South African friend suspected.

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).

Quote of The Week 1: How life is like a storytale…

Seneca

By Hogmanay, I had heard of several people who had died young or unexpectedly during the Christmas/New Year period. This Christmas Eve, sad that I had not managed to take part in many of the traditions that I have long held fondly, I spent some time remembering Eva Markvoort. Eva was a woman who was born the same week and year as me and had Cystic Fibrosis. She was arty, creative, kind, outgoing, dramatic and had a strong sense of social justice. She inspired people all around the world, including me, with her blog, YouTube videos and her efforts to raise money and awareness for CF and organ donation. Eva loved Christmas, and one of the things she did every year was rope friends and family into a ‘Sing for CF’ where they would sing Christmas Carols to raise money for the Canadian Cystic Fibrosis Foundation. On her final Christmas when she was suffering with chronic rejection of her donated lungs, she was unable to go out to do it, so everyone gathered in Eva’s living room turned bedroom and did a live webstream singing Christmas songs the week leading up to Christmas. And I sat on my laptop singing along with them in my bedroom in Scotland (despite the time difference!)

I feel like as each year of my life comes to an end (i’ve had over 30 of them now), I am reminded by seemingly senseless tragedies that we just never know what is around the corner. It reminds me of the conversation between a mother and her dying son being recounted in Fly A Little HigherZach was struggling to see the point of school as teachers were asking them to write essays for college and friends were full of talk about plans after high school – all things that he was likely never going to be participating in. Laura prayed to God to give her the words to respond to her son’s struggle.

“How many kids are in your class?” [Laura] asked.

“I don’t know, maybe around seven hundred,” he replied.

“Zach, the likelihood of one of them dying within the next few years is pretty good… There is a kid in your class who is going to die soon but just doesn’t know it. You know you’re going to die, and you have a pretty good idea of when. You have the advantage of preparing your soul. You get it. That other kid – he thinks he’s just preparing for college. So what’s really going on here isn’t that your friends are moving on and leaving you behind; it’s the opposite. You’ve moved on and have left them behind.”

-Fly A Little Higher by Laura Sobiech (page 3)

Of course, the reason we know the names of Zach Sobiech, Eva Markvoort, Emily Thackray, Stephen Sutton and many others is because though their lives may have been short in terms of calendar years, they were high in quantity of achievement. They have left us behind, and for those of us left behind (especially for those close to them) the loss is painful and the grief is hard to bear. But they lived life to the full – even when it wasn’t easy. There’s a message that Zach shared to the world…. “I want people to know that you don’t have to find out you are dying to start living“.

Truth is, we are all dying. Being born and dying are the two things of the human experience every single one of us shares. We don’t know when it’s going to happen, but it will happen one day. We can sit and wait…or we can make choices to make the best out of the time, resources and abilities we are given.

We might have a long tale to tell. It might be unexpectedly short.

But the point is – it’s not the length, but how good it is, that matters.