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.

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!

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

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.

“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.

I say life is beautiful even if I feel pain every day

I don't listen to the chances they give me

I'm no equation or percentage today

 Don't waste the sun

Shine on today

Don't let the light fade away

 Don't cry for me

I'll be just fine

I feel the sun start to shine

Shine on

Shine on me light

 -Written by Geoff Byrd and Jimmy, age 16

Powerful lyrics. Raw emotion. Voices harmonizing; one experienced and professional, one new, young and passionate. The funky sounds of beat box rhythms. This is the 2009 Portland Lyrics Project, a summer experiment that turned out amazing! We partnered seriously ill kids (ages 10-20) with Portland-based songwriters and musicians to record, mix and produce their own original songs. The professional artists helped the kids formulate ideas, thoughts and emotions into a piece that fit their own musical preference. We all came together in Portland’s most intimate concert venue, the KINK Live Performance Lounge, for an incredible private concert for the kids’ families and friends. One kiddo got a hall pass from the hospital to come perform. The concert was recorded, with excerpts played on the Dave and Sheila morning show. [All I can say is WOW! We are SO proud of the courage these kids shared with their lyrics.] A CD compilation of the children’s songs (studio versions) will be released Sunday, September 13th at our Celebration of Courage Family Festival, at the World Trade Center in downtown Portland. Come by, celebrate with us and buy a CD to help these and other kids as they battle life-threatening illness.

And if you missed it, check out the KGW News piece where I was filmed talking about the project at http://www.kgw.com/video/index.html?nvid=395305&she=1.

Warmly,

Mary Turina, CCA's President & COO

Every day we have the special honor of meeting amazing kids and families, during some of the most intense times of their lives. Every day I approach this work asking myself what can we do to bring more joy to the kids and families that we at CCA are privileged to serve? We have learned a lot over 14 years of service.  We have learned that, sometimes, bringing joy is as simple as sharing a hug, playing a game, singing a song, or offering the hand of friendship. A Chemo Pal walking into a pediatric oncology treatment room wearing a purple CCA shirt, carrying a bag filled with crafts and toys, brings the joy of friendship. A Chemo Pal helps families break through the fear and pain brought on by a child’s cancer diagnosis. Here’s what a mom, whose daughter has cancer, has to say about her daughter’s Chemo Pal (excerpt from a letter she wrote to Kacy Dressler, our Chemo Pal Match Manager):

 I wanted to let you know that Nicole has been a wonderful Chemo Pal to Lily.  They play games and do crafts, and Nicole makes Lily feel special in a way that I’m not sure anyone else can.  Lily truly loves her and knows that Nicole is here for her.  Nicole has created such a great impression on us all and my girls want to be Chemo Pals just like her when they get bigger.  Thank you so much for telling us about this program.  It is truly a gift to our family—to Lily.  And we have such respect and appreciation for all the time Nicole volunteers to be with our little girl.

 You came in right after we learned about Lily’s tumor.  Our minds were spinning, trying to take it all in, and you and Nicole have really helped us settle into a routine and given us support.

 Thank you for being that special hand of friendship.

 Warmly,

 Mary Turina, CCA's President & COO

Friends,

After 13 years of experience, research, development, evaluation, awards and accolades our Music Rx program is expanding beyond Portland, Oregon for the first time. For thousands of seriously ill children and their families the peals of playground laughter have been replaced by the beeps and pin pricks of life in the hospital. To combat pain, fear and loneliness with the healing power of music, Music Rx is there, transforming the hospital environment with every note. This month, we will bring Joy Rx and our transformational music program to the children at Mattel Children’s Hospital UCLA and Miller Children’s Hospital, both hospitals located in the Los Angeles, California area. Our amazing, state of the art music carts are manufactured, music equipment is ordered, and music therapists have been hired and trained. Thanks to the wonderful support from Health Net, our sponsors, and our friends at Starlight Starbright Children’s Foundation, Mattel Children’s Hospital UCLA and Miller Children’s Hospital, we have been able to join hands together to bring the healing power of music to over 14,000 hospitalized children this year. Stay tuned for updates, stories and pictures from LA.

 Warmly,

 Mary Turina, President & Chief Operating Officer