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.

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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!)

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).