CCA Blog

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).

This is my first time posting, and I thought I would start off by giving some advice about what to do for different parts of treatment, because when I first went through treatment I felt lost sometimes about how to handle certain things while I was going through radiation or chemotherapy.

Being Bald: While going through chemotherapy the first and second time, I did not like being bald and I know that other teens going through treatment don’t like being bald either. However, there are some things that I have found that really help you deal with being bald:

1. Find something to wear on your head. Being bald makes your head a lot colder! Also, lots of people are going to stare at you. Find something that you would be comfortable wearing on your head to keep your head warm and/or cover your head. When I was going through treatment I liked wearing a red ski hat that covered my whole head as well as my ears, and that did the trick for me. I know that some people prefer wigs, and that’s fine too. Whatever works for you.
2. Talk to your friends about shaving their heads so that you are not the only bald kid walking around school. At the beginning of radiation, I had a head shaving party where  my friends came over and shaved their heads. Unfortunately, their hair will grow back, while yours will not. But it is really comforting to have some other bald heads walking around the school at first while you are getting used to yours.
3. Be Confident! Lots of other people are bald too, and they look good. Lots of celebrities are bald, including Bruce Willis, Vin Diesel, Chris Daughtry (singer from American Idol), Andre Agassi, and Jason Stratham (actor in Transporter movies). Even Natalie Portman (actress) went bald when she was in V for Vendetta. If these celebrities can look good bald, so can you!

 Movie Tips

•  Go right after the theatre opens. It has just been cleaned and no other people have been there to leave their germs.
• Go to the movies at least 3-5 weeks after the movie you want to see has been released. That way you avoid the crowd.
• Bring disenfecting wipes and clean off arm rests and cup holders.

 You've given up a lot already. You don't have to add going to the movies too!

Hey All,

This is my last blog entry.  It has been a pleasure writing to you all. Thank you for reading my blog, and I hope I was able to share some insight and advice to other teens regarding my cancer journey. 

To wrap-up, I thought I would talk about my Make-A-Wish.  Make-A-Wish is a great way to do something you've always wanted to do and I was selected to participate.  Picking my wish was the hardest part - I switched my wish 3 times! In the end, I chose a trip to New York to meet Mikhail Baryshnikov, one of my favorite dancers.  I can't wait!

 Thanks again for reading, and good luck on your own journey.

 Love,

 Caitlin

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

I just got back from  a wonderful vacation where I went to Sisters, John Day, Timberline, Hood River (all in Oregon) and Skamania, Washington (it was a road trip). During the vacation we spent quite a lot of time remembering how careful we've been, and still have to be, on vacations.  So I came up with a list of things to help make vacationing just as safe as it is fun. (Some of the tips are only for tweens, teens and kids who have low blood counts, but they can help make sure you don't get sick on your trip.)

Top 10 Tips for the Cancerous Traveler

• Bring sanitary wipes and wipe down every plastic, metal, and wooden object that you are going to touch.
• If you can, don't travel by plane to avoid the massive amounts of plane germs.
• Wear surgery masks, they look funny but they protect you from taking in harmful airborne bacteria.
• Avoid large crowds, and the germs that go with them.
• Large crowds are only okay when they are mostly spread out and are outside.
• Bring hand sanitizer so if you do touch something dirty you can clean your hands.
• Before you go, get some antibiotics from your doctors so that if you do get sick you'll have the medicine to make you feel better with you already.
• Hotel hot tubs are a no. Too many germs. Hotel pools are okay if you don't get water up your nose, or drink the water!
• Remember nothing ever goes exactly as planned. That means don't get discouraged if plans change(If you have to cancel your trip because you get sick, if you get sick on your trip,etc.)
• Have fun!!!

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

Hey all,

The MRI turned out ok.  They found a small amount of what they think is scar tissue, but I am going to be kind of nervous for the next few months.  But camp was great!  I’ve been thinking of some advice regarding your time in the hospital; here it is:

• Take advantage of when your doctor or nurse is in the room by getting to know them, as you will be seeing them a lot.
• I found the CNA’s to be the most helpful because they’ll get you a snack if you want it or something else if you don’t like what’s on your food tray.

 Lots of Love, Caitlin

When I first went back to school, a lot of people asked me how I got through treatment.  How did I come into maintenance with my happy, friendly, optimistic nature still intact?  The simple answer is: I stayed positive, which is a hard thing to do when you're facing a potentially deadly disease like cancer.  How did I stay so positive?  Well, when times got bad, I focused on the good and hopeful things, things to look forward to and things to keep me busy.  Here a few ideas I came up with that might help you as well:

• Plan a party for the end of treatment. It may be far away but it's something to think about in the hospital.
• Take up a hobby like painting, writing, drawing or collecting something (that isn't dangerous, dirty or could affect your health in any way).
• Start a project like building a model or restoring an old doll house (I renovated my old Barbie doll house and made it look less plastic and more fantastic!).
• Find an upcoming event to go to. Similar to the party, it is something to look forward to.
• And finally, find fun wherever you can. The CCA can provide the chances and the equipment (such as the Music Rx program), but only you can make the best of the experience.