CCA Blog

It has been a great honor to be involved with photographing kids and families for the Hero Wall for the last two years.  Each child comes into my studio with a bit of apprehension, and we try very hard to make sure everyone relaxes and that there is time to celebrate the special soul who is bonding us all that day.  It never ceases to amaze me how, no matter how different each family is, there is a overarching quality that is present: and that quality is grace.

Each family has learned how to be strong in the face of the unknown; to show vulnerability when they are afraid; to express extraordinary love at life's most tender time. The child deserves so much to be celebrated, and we all go about this in an almost silent, yet very thoughtful, way.  We take time to look at each other. And no matter how old the child is, or what their circumstance is, their eyes reflect something surreal and powerful that most of us have not experienced.

I love photography because it results in a still image.  You can hold the photo in your hand. You can keep it close by.  You can touch its frayed edges. 

Time stops in a still image.  

I imagine that each family wants time to stop, in some way: They will forever see their child, the child will forever be a part of the family, nothing will change. And in the moment it takes to make the exposure, that one fractional moment, we have a reflection of making time stop. 

Many people say that my photos show tenderness, and I agree.  But I did nothing to create that.  I just got out of the way so each family can see what it feels like to hold each other and stop the flow of time.

And when it really comes down to it, for any of us, all we have is just one present moment.

- Joni Kabana, CCA's Ambassador Board member & Photographer

Last week my family and I got back from our trip from Iceland, so I thought I would blog about it. I was really, really excited for this trip because it was my big first trip since my cancer recurred.

First we were in Norway for five days before we went to Iceland. My favorite part of Norway was we went to this Viking museum that had real weapons, ships, and tools from over 1000 years ago. It was really cool.

Iceland was unbelievable! On the hikes we went on, I saw HUGE waterfalls 300 feet across with giant rainbows stretching over them. It was surreal. We also saw some bubbling mud pits and geysers that would spout hot water every five minutes 80 feet high. We also went to Blue Lagoon, which is a volcano-heated lagoon we swam in. It also is known to have healing properties and the lagoon has an amazing blue color (you can find it online). Overall it was an amazing trip!

Thanks for reading,

Jimmy

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

Today, I am sorry to say that right at this very moment you are reading my last blog (boohoo). What can I say? This has been an amazing experience. One of a kind, just like many of the things I have done thanks to the Children’s Cancer Association, Make-A-Wish, my dad, and some of the many exceptionally nice people on this planet. I have done things some people can only dream of doing—all because of my cancer experience. Okay, so it's not an experience you were dying to have (no pun intended). Some of you might even be cursing cancer's guts, but in the end, doesn't the good outweigh the bad? Was it that unbearable of an adventure? Can you really imagine your life without cancer? My answers are yes, no, and no. You may think differently, but that's probably because you have not yet experienced the wonderful adventures that are, soon, to come your way. I, however, have watched fireworks on a boat on the Willamette River, spoken in front of hundreds of people to help the CCA, kissed a dolphin in Hawaii, been on the news three times in the last three years, gone to Disneyland with my best friend, become a celebrity at my school and theatre, but most importantly I have met so many kind people it is unreal that I had to get cancer to meet them all. Those are just some of the things that I have done, and if all that does not at least equal all of the bad things that have happened, or are happening, or are going to happen, then you have learned nothing from my past blogs. So, for my final tip I remind you once again to stay positive. It really is the key to surviving, not only cancer, but life! I invite you as an advisor, and as a friend, to live life to its fullest and to try and accept and maybe even enjoy, the thing often feared and never thought of as what it truly is—an adventure, the adventure known as cancer.

Every Tuesday, a great group of women gather at the Kiwanda Community Center in Pacific City to work on their latest quilt creations.  When these generous and talented people heard that CCA would be building the Caring Cabin in their town, they decided every child who visits the Cabin should have their very own quilt.

With the inspiration from family and friends who have battled or were in the midst of fighting cancer, these amazing folks started making quilts for the Caring Cabin.  Before we even opened the doors to the first family, there were over 300 quilts completed and donated to CCA.

Whenever I visit the Community Center, I am greeted with many warm hugs, smiles and laughter.  I know that all of the time, talent and efforts that are put into each and every stitch of every quilt feels the same way for the Caring Cabin families that share in the gifts from the Tuesday Stitchers.

We are so grateful to this group who continue to create and donate unique and amazing works of art for all of the deserving kids who visit the Cabin each year.

Thank you Tuesday Stitchers!

Sincerely,

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

I know that the hospital isn’t the most welcoming place, and that it can make you feel homesick. I know I did when I endured long hospital stays. Here are my tips on how to make staying at the hospital a little better:

• Bring your own sheets and blankets – the hospital sheets are not really very breathable or very comfortable, so bringing your own sheets and blankets is important.
• Bring a stuffed animal – I know that it might sound strange coming from a 16-year-old, but bringing something to sleep with can be comforting when you are hooked up to all those machines. I brought my giant penguin when I had my high-dose chemo treatment. J
• Comfortable clothes – I always wore pajama pants when I stayed at the hospital, and they were really good thing to have.
• Your pillow – the pillows at the hospital are flimsy and not soft. I always bring my own pillow.
• Bring some stuff to do – the hospital is not a fun or exciting place. Bringing some distractions like your Game boy, PSP, iPod, movies, books, crossword puzzles, etc. I always bring movies to watch when I go to the hospital.
• My most important tip of all – have a positive attitude. I have always tried to keep a positive attitude through treatment, and it has really helped me get through hard times. When I went through my intense chemo and high-dose stem cell rescue, something that always kept me going was telling myself that no matter how sick, crummy, or miserable I felt, it was always eventually going to get better.

Greetings fellow cancer patients! I just got back from a great summer camp. It was a lot of fun. But it also reminded me of last summer, and how I almost didn't get to have a summer vacation. I was getting close to entering maintenance and I was really exited to start it. Unfortunately, my blood counts weren't high enough so it was postponed...again, and again, and again. It was mid-August, and I had already spent the summer isolated in my house or at the hospital (with the exception being that I went down to the Fairy Festival in Eugene for a day). Finally my counts passed and I started maintenance. I spent what was left of my summer visiting my grandma and grandpa, hanging out with my best friend, swimming, shopping, and just laying around in the sun enjoying life!  This year, if you get to have a summer, enjoy these last few weeks, and if you don't, that doesn't mean that you too can't lay the sunshine, laugh with your friends, or have fun! So make the remainder of your summer count! Don't waste it! Have a wonderful time in honor of all those that can't. Do it for all those that are in the hospital or are stuck in bed. Make this summer amazing just by having fun and enjoying every little thing that makes summer great!

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. 

I know that going back to school can be awkward, especially when you have been gone a long time (getting chemo, other kinds of treatment, or recovering from surgery). When I came back to school after going through high-dose chemo (after missing two months of school), I received some weird stares from some of the kids at school, as well as some questions I felt uneasy answering. Here are some tips that helped me and I think can help you too:

• Don’t overdo it! You just went through chemotherapy, which can make you feel like you just ran a hundred mile race. Don’t feel the need to push yourself. If you feel tired and don’t have enough energy for a full load, try going to one class a day for week or longer, and then easing into it by adding one class at a time.
• Try wearing a beanie or a ski hat for a while until you feel comfortable going bald (or until your hair grows back). Kids in high schools can be a little strange about seeing you again after you have been gone for so long. The combination of you being gone for a long time and you having no hair on your head could make it uncomfortable for you and other students.
• If you are uncomfortable about answering questions about your treatment or surgery, talk to your friends. They can act as your advocate by telling other kids to not ask you questions about it. That way you don’t have to answer any questions until you’re ready to.
• Relax! I know that it can be scary to return to school, and that it can sometimes feel different, but remember: it’s the same school you were going to before your treatment (or surgery). It still has the same people you know and love. Your friends, teachers, counselors, and office staff (maybe janitor too) missed you a lot and will be supportive and thrilled to see you, so just relax and enjoy your time back at school.

Congratulations! You are reading my 10th blog. Thanks for sticking with me this long—so to show my appreciation I'm sending each one of you a bag of candy!...just kidding; I can't do that! But isn't candy fantastic? It's sweet and can be a little sour or even hot and it’s small enough to stick in your pocket. And if you have lost a lot of weight like I did, candy and other sweet and sugary things can help you gain some weight back. To people who have lost weight, candy, chocolate, ice cream, cookies and milkshakes can save you from an NG tube (a tube that goes down through your nose and into your stomach and feeds you. Believe me; it's not pleasant in the least!). When you can't get any real food down without fear of throwing it back up again, candy is a delicious alterative for taking in the necessary calories needed to survive. And you need all of the calories you can get so that you can face cancer with more strength. So go out and down a tall milkshake, eat a cookie as large as your head and swallow an entire bowl of candy (not all at once though; you'd get a terrible stomach ache).