CCA Blog

Ok, I am over 45 and still getting use to this Facebook thing, but must admit that I am astounded at how powerful it has been for the Children's Cancer Association. We started our Facebook page less than a year ago and today we have over 4,000 fans! Every day we have the opportunity to share stories that our donors make possible in the lives of children with serious illnesses and their family members, give updates on our programs and share information about upcoming events. We are grateful for the input we receive from our Facebook family and the support they provide by sharing our message with their friends and advocating for our cause.

But I am most humbled by the many posts we receive from people who share their personal stories. From the parents looking for a community of support after finding out their child has been diagnosed with cancer to a kiddo saying "you are wonderful!" to her Chemo Pal, we are inspired by these amazing people every day.

I encourage you to join our Facebook family and get ready to be inspired! To join, visit www.JoyRx.org and click the Facebook button on the front page. You can also find us at www.Facebook.com by searching under "Children's Cancer Association."

Thanks for reading,

Dave Schaeffer, CCA's VP of Development

I’ve finally recovered from last week’s 28 hour Valentine’s Day For CCA radio-a-thon.  You know, there’s a reason it ends with “a-thon”.  We should train for this thing weeks ahead of time.  You've really gotta be in prime physical and emotional shape to pull off 28-nonstop hours of heartbreak and triumph, it's an emotional roller coaster.  Water is a must, you need to stay hydrated.  And stock up on the Kleenex.  The good kind too, with lotion!  

Looking back on all of the families we met, who've gone through the unimaginable, there’s one image I can't seem to shake.  The image of Regina Ellis, founder of CCA, rocking her baby girl Alexandra and finding a new lump.  Regina was so "open" when sharing her story of deciding to stop chemo and "just enjoy the time they had left", I wanted to hug her but she was across the room. It was all I could do to not throw down my headphones and go embrace her.  (I did afterwards...for like a long time, and I'm sure she was probably thinking 'OK woman, get off me!') But every time I think of it I cry and my heart actually hurts for the loss that Regina has endured.  And for sweet little Alexandra, who didn’t get to grow up and pass on those sequined ballet slippers to her own daughter.  

That's just one of the moments where my heart broke wide open on the air during our 28-hour Valentine’s Day For CCA Radio-a-thon.  Ian and Kirsten Olsen shared how they lost both of their twins, a year apart, to a rare genetic disorder.  How do families endure that? I think I would die from the sheer heartache of losing even one of my boys, let alone two.  And so that's what I asked those parents, "does continuing to help the CCA help you make some sort of sense out what happened to you and your family?"  You know what? All of the parents we talked to agree that yes, it does help.  When we reach out for each other in times like these it helps.  Having the Caring Cabin for families to just get away from the needles and the hospitals and enjoy each other at the beach—that helps.  Bringing live music into hospital rooms helps, in fact one of our CCA kiddos, 5-year old Zach, was in a medically induced coma to reduce brain swelling and nothing helped his stats more than the Music Rx crew playing live harp music at his bedside! Having a Chemo Pal to talk or play games with during those long painful treatment HELPS!  Thats why they call it JoyRx.  
There were also many wonderful triumphant moments during our 28 hours together.  The annual challenge between the Beaverton and Hillsboro police department went next level as the Hillsboro Men In Blue raised the most and were promptly rewarded with a mouth-kiss from Nelson! 

Sweet 7 year old Autumn, in remission after a kidney transplant last year and looking beautiful with a full head of gorgeous red hair, got to pick the winner of the car auction. 

The sea of purple shirts answering phones around the clock, and our wonderful friends in the media taking time out of their busy schedules to broadcast our efforts  As it says on my CCA coffee mug: "Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has."

So as a mom of three young boys, and one who thanks God everyday for keeping us all happy and healthy, I will continue to do everything I can for the CCA.  It’s an odd thing, sobbing to thousands of people you’ve never met, through a microphone.  But if you don't mind the blubbering once a year I hope you keep listening.  And I hope you keep giving to www.joyrx.org.

 Thanks for Reading!

 Stacey Lynn

Dear friends,

Time and time again I am astounded by the strength of kiddos undergoing treatment for cancer—strength of spirit, humor and courage. On Sunday I enjoyed the opportunity to go rock climbing with a few kiddos we serve, their siblings, parents and Chemo Pals. Wow! What an experience.  One minute, I was encouraging a kiddo to put on the harness, rope up and start climbing next to me. The next, I was racing to catch up. One minute, I was greeting a kiddo carried into the gym because his knee hurt. The next, I was celebrating as he scampered onto a ledge at the top of the climbing wall, smiling like he just reached the summit on Mt. Everest!

The giggles, the joy, the smiles glowing behind protective masks, the rosy cheeks and shrieks of laughter as siblings chased and tumbled on the mats around the gym. Sounds of children having a blast with their friends and family on a Sunday morning. The sounds of hope. The sounds of life.

Thank you to Club Sport and our generous supporters who made Sunday possible. Who knows? Maybe someday one of these kiddos will summit Everest.

Warmly,

Mary Turina, CCA's President & COO

“Travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living.”  

After 14 years at the helm of CCA, my incredible team gave me the opportunity of a lifetime. Staff and board members kindly stepped up to help shoulder my responsibilities and allow my family to embark on a ten-year dream of an overseas adventure together.

After spending nearly five months in Florence, Italy, we excitedly walked off the plane last month ready to share our stories and the lessons we had learned! We had a renewed sense of accomplishment, self-reliance and gumption. We made new friends and found new teachers. Most importantly, we all learned a thing or two about the ways we approach life and its challenges.

A city full of artists, unbelievable food, rich history and endless possibilities, we fell in love with Florence long before we arrived. For all of us, it now holds beautiful memories and remarkable experiences.

For me, the sabbatical provided time to decompress, find a different rhythm, and meet exciting people with new ideas developed from a different world view. I cherished watching old men walking arm-in-arm for coffee in the morning, and the organized chaos of drivers never obeying traffic signs or yielding to pedestrians.  In fact, I became quite adept at understanding many of the hand gestures, shrugs and subtle communication style of the Italians! Heading to the mercato for produce and meat and alimentari (dry grocers) each morning was an adventure in patience, language barriers and courage. I loved learning new recipes, hearing stories about the USA at dinner parties, meeting ex-patriots, students and local families.

We have returned with a new appreciation for the beauty of our own country - full of responsive service, technology and a variety ethnic food. However, I believe we will always miss the daily rhythm of a simpler city - full of church bells, bridges, cobblestone streets, shopkeepers, and all the people that became a part of our daily landscape. The experience was all we could have dreamed of, and on the day we left Florence we knew we would never be the same. We developed an appreciation for the lives we have, and were honored with another place to call home.

Happy New Year my friends! May you all find the way to a few of your dreams and adventures in the year ahead. I am so glad to be back at CCA.

Warmly,

Regina

Last night we celebrated the joy of the holiday season with over 60 friends of CCA who attended our Holiday Open House. We are so grateful for the toys that many of you brought and placed under our Christmas Tree and Menorah. 

It was such a joy connecting with our friends and meeting new friends with the smell of hot apple cider wafting in the air and the beautiful sound of piano music. 

I had the pleasure of meeting a family whose story touched my heart. They have been annual donors to CCA through the 105.1 the Buzz radiothon for several years. Last year their five year old son complained of a headache and before they knew it they were in going through treatments for meningitis. Their son was placed in a induced coma in an effort to reduce the pressure in his brain. Mom shared that when CCA’s harp music began to play they noticed that his blood pressure vitals were reduced to a level they had been unable to reach. She was delighted and amazed! Later in the week CCA’s staff came by to play guitar and sing with her son. She then learned it was CCA who had been providing the music, and shared her jaw dropped realizing that the organization she had been supporting for years was now providing her support. 

This personal story reminded me of the impact CCA makes every day and how fortunate we are to have the support of our community in all we do. Thank you for making CCA part of your family.

Happy Holidays!

Dave Schaeffer, CCA's Vice President of Development

Wearing black and red (sans high heels), I got to spend the day before Thanksgiving having a ton of fun at the Portland Trail Blazers practice facility. About 10 kids we serve, wearing No. 2 Steve Blake jerseys (courtesy of the Blazers), were playing a pick-up game and running drills with our favorite NBA point guard, Steve Blake. It didn't matter if the kiddo had no hair, couldn't eat sugar, was encased in an upper body cast, had legs that could not move, or was incredibly shy; just as soon as Steve started playing with them the smiles, laughter and joy started, and the kids and their parents forgot their troubles for a couple hours.

 Steve, sore from an awesome game the night before, was just like a kid himself, running, shooting, boosting kids up for dunks, and laughing. It was magic! Because of our amazing board member Tom Penn, the Assistant General Manager for the Trail Blazers, our wonderful business partner Genentech, and the incredible generosity of Steve Blake, these seriously ill kids got to enjoy an afternoon of hoops – just like healthy kids do every day.

There were so many precious moments that day, like watching Jaya move around the court like he owned it, with no fear or shyness even though he was smaller than everyone else there – he sure didn’t seem to notice! And seeing a budding friendship between Gage and Andrew was really special. Both boys were so nervous and shy when they first came, and by the end of the day they were best buddies who didn't want to get off the court. I also witnessed Steve bring to life a shy Angelina, who was playing by herself. Steve drew her out of the corner and lifted her up to shoot a basket, and she had the biggest grin and look of amazement. None of us will forget middle-school basketball star Molly taking on Steve one-on-one, and giving him a run for his money!

Thank YOU for precious Thanksgiving memories.

At CCA we know that families going through a serious health event can be overwhelmed by medical terminology, treatment decisions and hospital visits. In times like these, when children and their families need more than medicine we are privileged to be there creating joy one moment at a time with our innovative programs and services. 

We are constantly looking for ways to enhance our programs and are excited to share a new partnership with Caring Bridge, a charitable nonprofit organization that offers free, private websites that connect family and friends to share information, love and support during a serious health event, care and recovery. Now children and family members served by CCA can use a Caring Bridge website to centralize communication during all types of serious health events, easing the burden of updating family and friends.

The websites can be an important tool for those served by CCA to reduce isolation and stress in a difficult time, giving them an appropriate outlet for sharing their feelings and receiving support. Rather than individually contacting each member of their support system, a CaringBridge site allows patients and their families to update everyone concerned with just one journal entry.

We are so pleased to partner with CaringBridge and continue our cloak of support for the children and families we serve.

Happy Thanksgiving!

David Schaeffer, CCA’s VP of Development

One of my favorite things about visiting CCA’s Caring Cabin is reading the guestbook.

The words remind me of why families need this wonderful vacation home.  They need a place to escape to and create precious memories together. Time is so easily lost in the day to day struggle of fighting their child’s life threatening battle.  The Cabin is a place where time slows down. A place where laughter, smiles and hugs last longer and moments shared with family and friends are not soon forgotten. 

For a moment during my last trip to the cabin, I started feeling sad about the change in weather and how that would affect family visits.  And then I remembered the guestbook.  It doesn’t matter what time of year it is or what the weather is doing during a family’s stay, the entries in the guestbook still talk about the amazing time that was shared. During the winter months, families sit by the huge fireplace in the great room, singing karaoke, playing air hockey or pool. In the summer months, families go boating, play on the lake, build fires and roast ‘smores.

The memories shared at the Caring Cabin are not affected by what Mother Nature is doing outside.  The weather may change, but the guestbook tells the story of how time at the Caring Cabin gives families memories that last well beyond the change of seasons.

Check out the Caring Cabin Guestbook...

Thanks for reading,

Cliff Ellis, CCA Co-founder & Caring Cabin Site Coordinator

My job is to tell stories. Everyday, working in public relations, I help tell stories about all kinds of people, places and organizations.

A couple of months ago, I started volunteering with CCA to help tell some of their stories. Stories about the families and kids they serve – just waiting to be shared. 

One story I helped them share was about the Portland Lyric Project, a totally original idea from CCA that pairs kids battling life-threatening illnesses with local indie musicians to create original music.

We kicked things off with a live concert at the KINK Performance Lounge. And local TV station KGW was set to broadcast live from the concert during their 7 pm newscast – a chance to share CCA’s concert with the rest of the world.

After the reporter, camera and mics were all set up for the broadcast, I finally had a chance to sit back and see this particular story unfold. And listen.

We were all truly blown away by the stories told through the songs from the kids. The heartbreak, joy, courage and discoveries each has made during their own journey with disease. While facing a battle that no one ever expects to face, these kids were sharing their experiences so openly, and really, teaching us all.

My dad was recently diagnosed with ALS or Lou Gehrig’s disease. While we are still in the early stages, I know there is a hard road ahead. And I know the stories of strength I have found at CCA will be so meaningful to reflect on in the coming years.

CCA has so much to share with the world, and I look forward to continuing to tell that story, and the stories of the wonderful kids they work with every day.

Lisa Scholin, Principle, bluefly PR

“Since she won’t have a prom or a wedding, I just want my little Kelsey to have a princess party.”

Those were the words spoken by 4-year old Kelsey’s Mom, Andrea, as she talked with our Bev Tollefson, Director of CCA's LifeSupport Family Enrichment Program, about a very special wish for her terminally ill daughter. Bev pulled out all the stops, and, thanks to the generosity of many of you, Kelsey enjoyed a princess party for 100 + of her family and friends, complete with a visit from Cinderella! Kelsey’s magical day began with a limo ride from home to the salon, where her family enjoyed pampering in preparation for the big party. Beautiful princess gowns and tuxedos were donned, and then Kelsey’s coach drove her and her entourage to the Embassy Suites where she was crowned Princess Kelsey by Cinderella! The color pink was everywhere from the beautiful floral centerpieces, to the lovely cake and decor! Princess Kelsey and her guests danced the night away, while enjoying her personally selected menu of goldfish crackers, sour cream & onion Pringles, cookies, Sprite, Bug Juice, and Burger King burgers, fries and chicken nuggets (all food was generously donated by Burger King & Albertsons). At the end of the evening, a tired Kelsey cuddled up with Mommy and gave her a special surprise – a beautiful silver locket with Kelsey’s picture inside. For both Mom and daughter, it was a magical night to remember.       

Thank you for making this special memory!

Warmly,

Mary Turina, CCA's President & C.O.O.