The cat with the yellow eyes…

I imagine if you’ve been popping over to this here Koala Tree for a while, you’ll have read posts where I’ve mentioned Kylie. People at my work are very used to my yellow band that is always on my wrist, and many friends have had the courage to ask me “Why do you wear that yellow band, what’s it for?” and I get to tell them about Kylie, and why I wear the band…to remember Kylie, to remember her family and closest friends (I pray for them pretty much constantly) and to raise awareness about the need for more research and better treatments for childhood cancers. Sometimes when I mention Kylie, people who have asked also end up hearing about Oliver, Anna, Kate and Keira too.

Today marks two years since Kylie left this earth. Please be thinking of her family today. Anniversaries are tough, this I know. But I think (I hope) that people remembering the one that’s gone, helps the people left behind here who are missing them. A couple of weeks ago, Kylie’s family shared a short film that has been made by Mutual Rescue. It tells the story of Kylie and her kitten Liza. Liza had a very special role to play in the days leading up to and days after Feb 13th 2015, and in this film, Kylie’s Mom, Dad and two of her sisters share Kylie & Liza’s story so beautifully.

I’m also not sure if I’ve mentioned this already, but Kylie’s family have now set up a non-profit to raise funds and awareness for a cure for childhood cancer. You can find out more on the Smiley for Kylie website.

Today it’s likely that if you see me, my nails will be painted yellow and I will be wearing my Smiley for Kylie wristband. And tomorrow, I may just have to go and find some penguins.

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!

The one where I get asked if I’m a hippy…

…well, I’ve been accused of it many times before. But clearly the yellow is already a conversation starter which is what I was hoping for! As mentioned in my previous post, I’m spending a month trying ensure I’m always wearing something that is yellow or gold to raise awareness about the need for more funding and more research into childhood cancer.

I’m also going to be donating 10% of what I spend in the supermarket to Love Oliver so that they can give supermarket gift cards to families spending time in children’s cancer wards. It’s just one of the many fantastic things Love Oliver do. If you’d like to do the same the link to the page Andy & Jennifer’s friend has set up is here.

If you are in a different location from me, and you know of a charity doing similar work that people can do the supermarket gift card thing – let me know as I’ll be happy to add links to those charities as well. Most children’s cancer charities are small, and often are set up by families who have been affected by this awful disease and horrific treatments for it.

Let’s kick cancer’s butt, but most importantly show the families who have been most affected by childhood cancer that we haven’t forgotten their sons/daughters/cousins/nieces/nephews/sisters/brothers, and that we are behind them ready to give all the support we can.

The one where I go a bit yellow and gold…

Last September, I ripped my feet to shreds wearing this pair of gold shoes. Not only were my feet cut and blistered, but they were also very, very cold because I’m a reptile.  I think there’s only about 2 days out of the entire year in Scotland where I can wear shoes without a pair of socks and and not come home and immediately put a on pair of fleece socks, fluffy slippers and dive under at least 4 blankets. At once. However, this was the only item of gold/yellow that I owned that I could wear all month.IMG_7330

This year I’m having to rethink because work insist our shoes have to be black or white. So I’m trying to find ways to wear gold and yellow that get around their obnoxious uniform rules where everyone has to look conservative and quite frankly…dull and boring!

The reason for trying to do this in September? Well, September is childhood cancer awareness month. And if I can get in all the yellow and gold I can before the world turns pink breast cancer (which has had SOOO much funding and research and new treatments, and rightfully so) then I’ll be a happier woman. As you know Rebecca’s blog friend, Patrice lost her sister to Ewing’s Sarcoma a few years ago, before that my university friend and his wife lost their firstborn child, Oliver to a malignant rhabdoid tumour.  Patrice’s family “introduced” us to Kylie who was our 2015 Airmail Christmas honouree. Kylie also died of Ewing’s Sarcoma. At the moment as well, a member of the UK guiding family is going through experimental treatment for a type of childhood cancer that has no known curative treatments known as DIPG. Keira is a Brownie, and is astounding doctors with the progress she is making after the treatments. Doctors predicted the tumours would kill her before she got the chance to become a Brownie, but the treatments she has been given have caused a host of other challenges for her little body.

To me, it’s not enough to say that childhood cancer is ‘rare’. Or that a 5 year survival rate counts when we are talking about children. You know what really bugs me? It’s often deemed as not being ‘cancer’ that is cause of death, quite often it other things that cancer causes or the treatment causes. I still remember the amount of times I’ve read that someone’s kid is ‘fighting the treatment that is fighting the cancer’.

Tomorrow I’ll be going on a hunt after work for some yellow and gold items I can wear throughout September – thanks to friends who have given suggestions!

To all my friends in USA – good luck with CureFest. I think there’s been progress made with healthcare in this last administration, but I really hope that 4% is increased.

To friends in the UK – there are so many small charities like Love Oliver and the Katy Holmes Trust – they provide pretty much the only funding for “rare” childhood cancers like DIPG, rhab, Neuroblastoma and so on.

Let’s work towards better and safer treatments for kids who have cancer invading their bodies.

And feel free to join me in wearing yellow and gold throughout September!!

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.

A Very Airmail Christmas 2015: Introducing our honouree…

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For the last three Christmases my friend Rebecca has organised something called A Very Airmail Christmas. Started in 2012 to fulfil a patient’s wish that everyone would send a Christmas card to a stranger, we have continued doing this in honour of a different person each year. This year we will be doing it in honour of a young lady who loved Christmas. Coincidentally I was introduced to this incredible girl by the foundation set up in the legacy of last year’s honouree, Anna Basso. You may know her as Smiley Kylie. I will pass over to Kylie’s father now, to let him introduce you to her…

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Kylie Myers was a sweet and talented girl who loved art, her friends, music, and all things related to the stage. At the age of ten, she blew everyone away with her performance as Annie and set her sights on a Broadway future.

During the rehearsal and performance of a subsequent play, Kylie’s left knee began to hurt. She fought through the pain, but as it grew more intense we took her to several doctors to discover the cause. Finally, Kylie was diagnosed with Ewing’s Sarcoma on April 9th, 2014 at the age of 12. Since she already had three tumors at diagnosis, her prognosis was rather dire from the start. When she heard the news, she only said, “God must have great big plans for me.” Her treatment began immediately and consisted of the standard Ewing’s protocol of chemotherapy followed by radiation, then more chemo.

Kylie had been called Smiley Kylie all of her life. When we got the dreaded news, we decided they would have to be Smiley for her when she didn’t feel like smiling – thus, Smiley for Kylie was born. With the hope of getting friends to send her selfies to lift her spirits, it grew until many Broadway stars posted pictures and videos for Kylie. She got a smiley from every US state, 94 countries, Georgia’s senators and governor, and many other athletes and celebrities. She was truly overwhelmed by the outpouring of support and it kept her going on the hardest days.

The chemotherapy took an awful toll on Kylie. Her weight plummeted from 105 pounds to under 70, at which point she had to have a feeding tube installed to prevent malnourishment. A scan at the time we were supposed to move into the radiation phase noted significant shrinkage in the tumors. So the decision was made to continue the chemo and hope for more success. Unfortunately, the cancer grew resistant during the next six weeks and rendered that chemo ineffective.

A new chemo regimen began, followed by radiation at Levine Children’s Hospital in Charlotte, NC. Again, for a time, all scans showed significant reduction of the cancer. In early February she finished her radiation only to find new soft tissue tumors. At that time, we heard the dreaded words, “incurable by standard treatment,” and began looking for clinical trials that might save her life. Unfortunately, she died on February 13th, 2015 – days before her 13th birthday. Her last charges to her family were to take care of her kitten, Eliza and cure childhood cancer.

Kylie loved Christmas and we are honored to be a part of A Very Airmail Christmas. She suffered through chemo during her last Christmas here. I’d like to share what I wrote about spending that Christmas with her:

How do we do Christmas this year?

Should we skip it? Or should we cherish every moment together as the babe in the manger intended us to? Maybe, instead of focusing on what we’ve lost, we should hold on to the fragile remains of what we have – love, family, friends, and a newfound respect for the precious thing that is life. We should cling to our little girl, who, though frail, is fighting hard and encouraging others to do the same.

When referring to the promised coming of the child in the manger, Isaiah said, “…and a little child shall lead them.

What if we took a cue from our little child?

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Although she is the one feeling the pain, nausea, and side effects of cancer, she is also the one most excited about Christmas. Even though she only had the strength to stand long enough to put a single ornament on the tree, she admires the finished product and loves to be in the den where she can see it. She is the one who insisted on taking decorations out of town with her while she has to be gone for treatment. She is the one snuggling her elves, dreaming about Christmas morning, and soaking up every minute of the nearness of family and Christ at this time of year. She holds a compress on an aching jaw with one hand and draws up surprises for those most dear with the other. In a year of typically rapid growth for a child her age, she weighs 75% of what she did last Christmas, yet she samples whatever treats her nervous stomach will allow. While we fret over diagnosis and treatment, she savors joy, plucks smiles from pain, and builds a resume of contentment that few on this earth have ever seen. Perhaps she has it right and we have it all wrong.

Instead of looking to health and prosperity for our happiness, what if, just for a moment, we set aside our problems – however overwhelming, and looked to the manger, toward a child – with gratitude for his coming and a longing for his return? What if we laughed in the face of the enemy, knowing that we are wonderfully cared for and uniquely loved? What if we hoped, even when victory was uncertain? What if we dreamed of a better tomorrow regardless of what it may hold?

What if we smiled more…

-Mark Myers

Mark blogs at Life in Portsong, and you can also find out how you can support the Myers family in pursuing Kylie’s wish of finding a cure for childhood cancer by following the Smiley for Kylie facebook page.

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If you would like to participate in A Very Airmail Christmas, here’s how you can…

1) Send us your name & address (it can be your home, work or anywhere else address that you’d like a card posted to you at) to the designated email address: forrobin_christmas(at)hotmail (dot) com by Thursday 26th November.  Your addresses will be held confidentially and not shared with anyone else apart from the person who will be sending you the card.

2) On Friday 27th November, I will be randomly matching Airmail Christmas participants. We will then email you the address of someone else that you can send a card to this year.

3) Write and post your Christmas Card as soon as possible, especially if it needs to go abroad. If you like you can use the hashtags of #smileyforkylie and #airmailchristmas on the envelope.

4) Wait for your card to arrive. Feel free to send a picture of the card (please be careful not to share addresses from the envelopes!) to us to post in our Airmail Christmas gallery, or post a picture of the card on social media with the #airmailchristmas hashtag.

The only rule is that if you’re paired up with someone who lives abroad then you need to be willing to send the card to another country. We hope this will also be seen as a way of connecting with new people, continuing to fulfil Robin’s wish and to show solidarity with families who are missing loved ones this year. Hopefully in honour of Smiley Kylie, we will be giving some smiles to card receivers (and maybe a few postal workers too!)

BK’s YouTube Picks: Even When I’m Gone

I stumbled across this video which was created by the Children’s Cancer Research Fund for Childhood Cancer Awareness Month last year, in a tribute to some of the teens who had battled cancer with the team at the University of Minnesota Children’s Hospital.

I really won’t stop yelling about the need for more research into childhood cancer until we see things change, like we have with breast cancer.

The same as I’ll always be yelling about organ donation too…until our transplant waiting lists are down, and more people are speaking out about their wish to be organ donors if it is possible when they die.

Don’t forget the Olivers, the Zachs, the Kylies, the Evas, the Annas, the Kinas, the Emilys, the Jessicas, the Talias…we need to remember them and their message and wishes…that no one would die waiting for transplant, that there would be no more cancer and that CF would stand not for Cystic Fibrosis but ‘Cure Found’.

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).