CCA Blog

I just ran 13 miles.  A beautiful Sunday afternoon, right here in the heart of Portland.  When running for that long, you get to think a lot.  It’s free, uncluttered time.  I chose to focus my thoughts on CCA, as I was asked to write about the Hero Gala, and what it means to me. A very personal question, indeed, as I know for a fact that each person experiences this particular evening differently. 

At mile 3, after falling into a nice pace, heart pumping evenly, I thought about the beginning of my relationship with this organization.  I literally stumbled upon CCA through the doors of this event.  A last minute call to come to this benefit at the Tiger Woods center at NIKE, I was dressed in work clothes (for me, that’s torn jeans, flip flops, and a tank top). I knew a few people there, and as I looked around the rotunda of the Tiger Woods Center, I felt like Alice who had fallen into this magic hole of wondrous packages on which to bid, amazing music playing from the balconies, and stunningly beautiful black and white photographs of very sick children.

At mile 6, I felt the lump in my throat as I thought about where one has to go in their heart, in their soul, to really GET what this organization does.  And honestly, it happens here, at this Gala.  I have to say this…it’s HARD.  Whether you are holding the hand of a friend who has lost a child, or watching a new friend who has accepted your invitation, or simply imagining what it would be like for yourself, should cancer ever strike your own family, it’s HARD. 

Around mile 9, I really just needed water.

At 9.5, I decided on my dress.

Mile 10 – 12 was easy.  Not the run, no.  It was easy to bring it back to the joy.  Because that’s really what it’s all about.  I work in extremes.  Welcome them.  Because without feeling the sorrow that so many families who have sick children go through, it is not possible to experience the pure JOY of what it’s like to know that through what CCA does, thousands of kids each year get to open Christmas gifts, or go to Disneyland, or have a friend to count on in the hospital that will bring them games and music, or simply to know that at a moments notice, we can say, simply… YES.  And yet.

Mile 13.  We have a lot of work ahead of us.  It’s a journey for us all.  I believe, with all my heart, that the Hero Gala is a necessary part of the journey.  I would have never found CCA without it. 

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 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

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

It's inspirational and humbling to look back over my shoulder and see the incredible growth of CCA over the last 14 years. What started out around my kitchen table with 6 friends and family members dreaming about making the world a better place for seriously-ill children-has now grown to be one of Oregon's largest and most innovative children's organizations powered by hundreds of Portland's brightest minds and biggest hearts.

When we sat down to think about creating our new website, we pulled out a rainbow of colored markers and mapped out a place where families like mine, volunteers, medical professionals, kids, teens and supporters were warmly embraced and could get the information they needed very quickly.

I hope that's your experience here.

Our new JoyRx Blog gives you a personal look into our organization, introduces you to our amazing leaders, and will even share a few magical stories that come to life everyday at CCA. If you'd like to hear about something specific, please let me know. I look forward to keeping you in touch.

P.S. When I told my teenagers that their technologically-challenged mother was hosting a new CCA Blog...the laughter erupted. ‘Old dogs CAN learn new tricks’, I whispered over their raucous amusement!