CCA Blog

It's exciting to be celebrating our 15^th Anniversary! I believe after all these years behind CCA, that life is hard and wonderful and messy and unpredictable. CCA shows up the moment any child is diagnosed with a catastrophic illness and we stand by their side through some pretty dark and scary days. We deliver compassion, hope, resources, friendship, and programs where very sick kids, their parents and families can escape, rebuild, smile and renew their hope & energy.

What started around my kitchen table has evolved into an organization that has provided free one-of-a-kind services and assistance over 101,581 times in 2010 to kids, teens, family members and medical professionals. The work begun by a few of my kind-hearted friends is now continued by a professional staff of 19, an amazing group of board leaders and more than 1,300 phenomenal volunteers.

This summer we've celebrated children and families at the Olsen's annual Wine & Wishes party, celebrated our 500th Chemo Pal match, hosted a Rose Garden suite full of cancer kids and their parents for the Justin Bieber concert, completed an A+ audit, laughed and celebrated at the Children's Pro-Am golf tournament, travelled to NYC for meetings with our partners Nike, Converse and Anomaly for the MyMusicRx.org initiative, and delivered soothing, live music floating down the hallways of over 9 children's hospitals and facilities in Oregon, SW Washington as well as at Mattel UCLA and Miller children's hospitals in Los Angeles, California.

I hope to see you at our Annual Celebration of Courage family festival, this September 12^th at the World Trade Center in downtown Portland.  Come say "hi"....I will be wearing a fantastical, purple hat and eating birthday cake with over 2,000 friends and supporters.  Thank you for all you make possible for families like mine.

 Regina Ellis is the Founder and CEO of the Children's Cancer Association

Giving back to the youth of my community is an important value for me. I have worked with other local non-profits over the years and while it's been arewarding experience on many levels, I think what is missing is compassion.  True and honest compassion.  Caring for employees, grateful for volunteers, and thoughtful with recipients and their families. 

This is where CCA has been different.  Every touch point I've had in the past 2 + years (from leadership at the highest level) to the supporters, to the employees, to the volunteers- has all been filled with nothing but positive emotion, and that's what makes CCA great.  It's something that is not easy to replicate and something many organizations could benefit from.  Support nights with Pizza, Trainings with Pizza, luncheons, to newsletters highlighting members of the CCA family are all things that help make it a warm and inviting experience. 

Another element that I appreciate is the way you support and establish boundaries within your Chemo Pal matches - this is something that definitely helps more than people realize upfront.  Everyone wants to help, as much as they can but sometimes they don't understand how this can put a strain on them in the future. 

 Matt is a valued Chemo Pal and friend of CCA

From a guy that runs a corporate event management company doing over 1000 events per year, The Children's Pro-Am is absolutely classified in the ultra cool category.  The objective was to raise significant dollars and awareness of CCA to a completely different group; mission achieved. 

There were golf pro's from all over the NW in the event, over 100 amateurs, live music from Tim Ellis and Jimmy Walker, iced martini bars...all on a bright sunny day at The Oregon Golf Club.  Best of all, we got to meet and hear the family story from Greg Wolfe which was incredibly powerful. 

Local and national businesses have got behind the event with sponsorships from companies like Columbia Distributing, Les Schwab, Perkins and Company Accountants, Opus Solutions, Emerick Construction, Pepsi, and All American Hearing. 

Next year's event is scheduled for August 22nd at The Oregon Golf Club and the player's list is already 90% soldout. 

Grant Hammersley is the CEO of Opus Solutions, the leader in integrated event solutions.

Portland Lyric Project II

I am so excited to share that we are, once again, in the  cool music recording business! We are pairing up some of the teens we serve, with amazing local music talent to create everything from beat box rhythms to emotionally raw ballads. It is Portland Lyric Project II! 

We have some wonderful local artists returning to our project including Dave Hall, Desmond Spann and Lisa Mann. We are adding incredible talent this year with, Keegan Smith and Tony Smiley!

Keegan Smith won Male Artist of the Year and Best Live Performance at the 2009 Portland Music Awards. He has deep roots in Portland, and has a huge heart for working with kids.  We are so excited to have him a part of our project!

Tony Smiley is known locally as the loop-ninja and, when you witness his verbal throwing stars and his black belt in smooth riffs, you'll understand why.

We have been thrilled to welcome back some incredible artists from last year as well as welcome new talent.  As we continue to bring new local songwriters into this project, we look forward to hearing the powerful songs that share these kids' stories of battling serious illness.

Check back, and we will update you on the creative process....even give you a sneak peek at some of the amazing lyrics the kids and artists write.

A few years ago I started to dream about how to take a passion for motorcycles and combine it with an idea for a fundraiser for CCA's Caring Cabin.  The vision was to have a ride from Portland to the Cabin in Pacific City.  After sharing the idea with the CCA staff, our Board and various community motorcycle enthusiasts, I knew right away that this could be another successful event and a great way to share the Caring Cabin and CCA's mission with many new friends.

The dream came true on June 5^th as we had over 100 bikes, starting at Paradise Harley-Davidson, roar their way to Pacific City.  The Caring Cabin grounds were full of bikers who enjoyed a beautiful sunny day, lunch and tours of the Cabin and the path to Lake Dylan. 

At the end of the day we raised over $25,000 and people are already asking about the details for Joyride II.  Be sure to check out the photos from the event at CCAJoyRide.org and start making plans to come ride with us next year!

Cheers,

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

I am so inspired by the kids we serve! We are so lucky to work with kids who want to give back to CCA! One of my heroes, Phoebe, volunteered to speak to CCA leaders and new friends at an event for CCA Saturday night. Unfortunately, Phoebe, who lives with CF, experiencing one of her frequent hospital stays…and was not well enough for a hall pass to come to our event. So, she sent her speech with her wonderful boyfriend whose band Jokers and Jacks played awesome music for us to enjoy. Thank you, Phoebe, for sharing your thoughtful words.

Warmly,

Mary Turina, CCA’s President & Chief Operating Officer

Hello everyone!  I want to thank you for coming out and supporting CCA tonight.  I wish I could be here, but unfortunately I’m in the hospital.  For those of you who don’t know me, I’m Phoebe Mattera.  I was born with Cystic Fibrosis and have lived here in Portland since I was five years old.  Now that I am twenty, I am a veteran of extended hospital stays.  My first hospitalization occurred when I was almost two years old.  My mother and I have always “moved in” carrying wagon loads of bedding and room décor to help make it as cozy and home-like as possible.  She has stayed with me through most of my hospitalizations; always with me when I was little, and comes for hours each day these days.  It seems like our life revolves around CF, even though we have as active a lifestyle as can be permitted.  We stay positive and have found that one of the best things we can do for ourselves is to help other people.  We have been helped and supported by others and by organizations such as CCA, and it feels good to have opportunities to give back, especially when we know how much it means to other kids!

My experiences range from being a Community Hero, having CCA volunteers come and visit me in the hospital, getting tickets to a James Taylor concert which I attended with my boyfriend (JT is one of his favorite performers); but it was through their Music Rx program that I was first introduced to CCA.  Music is such a huge part of our lives and to have it here in the hospital was such a welcome contrast to the hospital environment!  The staff at CCA are great and I consider them my friends.  I have participated in some CCA fundraising events through speaking at events or during the Valentine’s Day for CCA Radio-a-thon.  Most recently I had the immense honor of being there teen blogger from January to April, which was very therapeutic for me.  I was able to make one of the most important decisions of my life through blogging for CCA, and that was the decision to pursue getting a lung transplant.  That just further demonstrates that when you volunteer to help, you get more in return.  I am very grateful to CCA for all that they have done for me, the doors they have opened for me, the things I have discovered and accomplished through my engagement with them.  They are truly a unique group dedicated to kids like me, and the impact that they have on our lives is profound and lasting.

I would like to thank you all for coming out and showing your support for CCA!  Helping CCA continue to do their work really is important to kids like me.  Sometimes it can be difficult to gauge the effect one has in supporting an organization, but I can tell you that as far as I am concerned I can think of no other organization that has made more of an impact in a positive way than CCA.  So, thank you again for your support!

My husband and I have 3 beautiful children. As a parent, my strongest desire is to keep my children safe, healthy and happy. But what if you couldn’t?

Imagine, over Spring Break, your child crashed their bike and ends up in a coma in the hospital.

Amidst the fear, anxiety and general craziness, you learn to carefully watch the monitors hooked to your child, monitoring their oxygen, heart rate, and blood pressure.

For no apparent reason, your unconscious child’s muscles contract, they appear to be in pain, you cannot console them. Into your room walks a board-certified music therapist who begins playing beautiful, calming music. The anxiety in the room decreases. You notice your child’s heart rate and blood pressure decrease. Muscle contraction reduces. Random movements become purposeful…you may even see your child mouth lyrics to a song. You feel hope, for the first time.

As you walk to the hospital family kitchen, you hear live music from a hallway musician. You walk past an incredible mobile music cart playing a music video. You pass the play room and see hospitalized children having a karaoke party with a CCA volunteer. You realize there is a blanket of music enveloping the hospital. This is Music Rx^®.

With only 3.25 staff and 60 volunteers, last year we served over 2,500 kids in 25 children’s units including the Children’s Hospital at Legacy Emanuel, Doernbecher Children’s Hospital, CARES Northwest, Oregon Burn Center, Shriner’s, Legacy Salmon Creek, Providence, the Dougy Center, and at home at the bedside of dying children. Since many of the children we serve are hospitalized repeatedly, we serve most children multiple times in one year. Music Rx^® is in the hospital 6 days a week, with music therapists going room-to-room and visiting the ICU. CCA professionals can be found serving at the bedside of dying children. Our annual program costs are only $100 per child for bedside service to a hospitalized child.

Last Wednesday, I shared this glimpse into Music Rx^® service with over 500 new friends who attended our 7^th annual Get Inspired Luncheon at the Governor Hotel. It was an amazing, inspirational day! Thanks to our new friends, we raised over $71,000 to help us prescribe our unique brand of JoyRx.

From the bottom of my heart, thank you!

Mary Turina, CCA’s President & Chief Operating Officer

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