CCA Blog

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.

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!

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.