CCA Blog

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.

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.

Last week I had a chance to spend time with ten-year-old Lilli and her family in our office parking lot.  Lilli, who is undergoing treatment for Hodgkin’s Lymphoma, is being served by CCA’s programs and agreed to be interviewed for a KPTV spot promoting our Mini Cooper Raffle. 

While sitting in the car, Lilli was playing with all the gadgets and answering the reporter’s questions with her effervescent smile and tremendous poise, I chatted with her parents.   They shared that before the diagnosis of their daughter’s tumor they did not know about CCA and its programs.  I was grateful to hear how our Chemo Pal and LifeSupport programs were helping them navigate through this challenging time for their entire family. 

As I reflect on my time and conversation with Lilli’s parents, I am reminded of how powerful a volunteer with a bag of toys or the simple experience to play a guitar can be for the children and their families we serve. 

As we chatted, Lilli was having great fun with this new experience and enjoying the moment to shine.   I would love to introduce you to Lilli in her debut interview with KPTV Fox News - check it out: 

http://www.kptv.com/video/20120186/index.html

It is a privilege to be a part of the CCA family of volunteers, staff, families and friends.  Thank you for the opportunity to experience the joy of our mission every day.

Warmly,

David Schaeffer, CCA’s VP of Development

Every day in my work at CCA, I celebrate our ability to provide JoyRx to hundreds of kids returning home and getting better. But recently I have had the privilege to spend time with CCA families facing the terminal diagnosis of their child, as well as with parents whose children have died. It takes me right back to living and struggling through these heart-wrenching experiences with the death of my oldest daughter, Alexandra.

 In reflecting on my conversations with these parents, I wanted to share part of an interview with author Marilynn Robinson in an issue of the Paris Review. The interviewer recalled Robinson observing that Americans often avoid and deny the “larger issues in life.” Robinson shared: 

 The ancients are right: The dear old human experience is a singular, difficult, shadowed and brilliant experience that does not resolve into being comfortable in the world.  You are depriving yourself if you do not experience what humankind  has experienced, including doubt and sorrow. We experience pain and difficulty as failure, instead of saying, I will pass through this. Everyone I have ever admired has passed through this, music has come out of it, and literature has come out of it. We should think our humanity is a privilege.

 For families like mine, I believe it’s our friends and community who become our beacons of hope and humanity. They help us find our way as we travel through some of the darkest days of our lives, their compassion easing our hopelessness, doubt and sorrow. I hear many stories from families facing a child’s terminal diagnosis that speak to the powerful comfort they received when others simply acknowledged their pain and were not afraid to reach out to them in their grief and isolation.  Perhaps it was a warm dinner left on the doorstep, an enormous hug, music at their child’s hospital bed, a card, or an offer to stay at CCA’s Caring Cabin. Always, it was the simple gift of acknowledgment from friends and family and the support from our communities that made their loss and grief something they could ultimately survive and endure.

 Thank you for helping us, teaching us and being there.

 Warmly, Regina

As one of the Board leaders who helped bring CCA's Caring Cabin in Pacific City, Oregon, to life many years ago - I had quite a good time this past weekend working with some fantastic volunteers as we pulled hundreds of weeds and added beautiful plantings throughout the 24 acres of our cabin's coast property.  Throughout the year, volunteers help us with many projects and much needed landscaping at the Caring Cabin - we couldn't keep things as beauitful and maintained without their efforts like donations of tree trimming, window cleaning, wildflower seeds, bird baths and butterfly houses installed, new plantings, landscaping, bark dust hauled and many other good things!

Ron Clark from TruGreen Landscaping and Charles George and Teresa Chenney from Nike's Facilities Management team helped lead and organize 8 volunteers to work this last Friday and Saturday planting beauitful grasses and flowers and revitalizing the Cabin's lake path, walkways, arbors and property. They were inspiring. 

After cleaning up and admiring the end result of our efforts, I headed a few minutes away to the Pelican Pub and Brewery.  Some more of CCA’s wonderful volunteers and staff had spent the day at the Pelican’s annual Brewers Summer Games.  The folks at the Pub have been supporters of CCA for many years and they generously donate a portion of the proceeds from the Games to the Caring Cabin situated right in their costal town.

Driving back to Portland where I live, I couldn’t help think about the next family  with a kid struggling with a serious illness that was soon to arrive at the Cabin and how our incredible volunteers, staff and donors came together to help build memories that will last longer than they could ever imagine. To read more about the Caring Cabin check out our website - please share your ideas or ways you might help us at the Caring Cabin.

Until next time,

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

While sitting in my office last week I heard music that was not the familiar music we hear every day.  When I entered the hallway to check out what I was listening to, I discovered 13 year old Lauren and her father standing by our office stereo equipment.  Lauren was beaming with a huge smile on her face and was pointing at the speaker, mouthing “I wrote this song”.  

I stood there soaking in the wonderful lyrics, music, excitement and joy from Lauren and her father as they sang along.  Lauren is in remission from cancer, and has recently begun participating in CCA’s newly created Music Rx song writing project.  This project pairs seriously ill teens with local talented musicians/songwriters to make hip music together.  Lauren had just received a rough cut of the song she co-wrote with local songwriter, Lisa Forkish, and rushed down to the CCA office to share it with us.  In August we will be recording a professional-quality version of her song!

We all gathered around Lauren and her father after the song, celebrating her debut with laughs and hugs.  I remember one lyric from her song which still plays in my head - “live in the now, don’t worry about the future”.  What a wonderful reminder for me, and testament to our mission.  

I am extremely grateful for the support we receive from our local community to ensure that moments of joy like this occur every day in the lives of seriously ill children and teens like Lauren through CCA’s programs and services.

Through my work at CCA, I will always remember to live in the now, not worry about the future and to SING OUT!

 Warmly,

 Dave Schaeffer, CCA's Vice President of Development

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

I believe the new creativity, pressures and drive we are all feeling will encourage our entire community to collaborate more effectively, reduce duplication of services, spark new ways of doing business and support social partnerships. CCA provides some of the most human needs for families facing medical crisis:  comfort, joy, food, financial resource networks, and hope.

Where Are We?  Over the last four months, CCA has seen a dramatic rise in our family support, end-of-life support, mentorship during hospital stays, and bedside music for families we serve (a 136% increase in service requests over last year). In addition, our hospital partners are asking for more services from CCA to meet challenges and gaps they face as they adjust to budget and staff cuts. We are the only community organization addressing the non-medical needs of seriously ill children with our programs of joy, and our community needs us more than ever before. In the face of this increasing need, we approach the reality of a 20% overall reduction of corporate and foundation support. We are continuing to take steps to further tighten operations, trim costs, and deliver services even more efficiently than ever before.

What Are We Doing?  CCA is strong, healthy and continuing to work hard to sustain all current programming and operations without depleting our cash reserves. In March, we levied an organization wide expense reduction and leveraged untapped in-kind corporate and community support, like our new vendor management services with a local accounting firm and the engagement of 75% more weekly volunteers to help us answer phones, provide administrative and program support, ignite fundraising opportunities, and reach out more to our community. We feel and see good things happening.

For the last 14 years, the Children's Cancer Association has grown and thrived through the good and hard times because of the gifts, time and talents our friends and supporters have shared with us.  Now more than ever, the families we serve need your compassionate help to ensure we continue delivering CCA's on-of-a-kind JoyRx every day! We'd love to hear your ideas and we welcome your involvement. It's an exciting and wonderful time to help lead and see our organization grow and weather these economic changes in our local and national community. I believe we will be a stronger organization because of it.

I'd like to hear from you, please email me your ideas and suggestions. Thank you for helping us in every way you can! Good people, help, and compassion - it's what matters in all our lives.

Regina Ellis, Chief Executive Officer & Founder