CCA Blog

Trying to recover from my trip to DC has been hard!  We went to a Mariner's game and we had so much fun!  Plus, my Mom and I have been working really hard on a blood drive in my honor.  I have been taking posters to local businesses to put up in their windows.  We hope we can fill the drive up!

My Chemo Pal Krystal came over to visit with me this week.  We had so much fun.  I was able to show her all my animals and teach her some of the things I have learned living with chickens, goats and my duck; she even held my rabbit!  I showed her my room and all my collections.  She said it was impressive....LOL! We were also able to play some Wii.   We played "Raving Rabbits."  I really like that game!  I beat her in every game but one.  I also really like hanging out with Krystal.  We laugh and have such a good time together.

I lost my last baby tooth! It was really bugging me so I just pulled it out myself.

We went to one of my doctors and he told me I can ride my scooter, drive the lawnmower and show my goats in the summer at fair.  I am soooooo excited!  

I am really enjoying all the sun we have been having.  Playing outside and planting our huge garden!!  Hope you all enjoyed it too!  I have tried to ride my scooter everyday.  It's been since September when I rode it last.  We also have been playing with our rabbits outside.  We taught them a neat new trick.  I hold my bunny and my sister's bunny chases after me!  It is very funny to watch!

Your Friend, 

Olivia

I had a great chance to do something really special last week.  We were asked to go to Washington DC to talk on Capitol Hill.  We went with the Immune Deficiency Foundation.  They set up meetings for us with Oregon senators.  We are going to talk to them about a bill that is in the House and the Senate about Medicare and IVIG.  IVIG is the medicine that I take.  With Medicare they don't cover everything so this bill should help with that.  We flew in to DC on Wednesday night to go to a meeting about what to say to the Senators.  It ran really late.  We had to get up really early the next morning.  Breakfast was at 7.  It was good.  We had bagels and fresh fruit.  It was nice to start the day that way.  We walked up to Capitol Hill for an official picture.  It was so sunny and nice.  We saw the fattest squirrels ever!   Once we took the picture, Mom and I decided to do some sightseeing since we did not have another meeting until 1pm with Senator Merkley and another at 2pm with Senator Wyden. 

My Mom and I walked the WHOLE MALL!  We started at the Hill and went all the way to Lincoln.  We stopped at the Smithsonians (at least some of them).  We also saw the Washington Monument (we called it “the pencil”), WWII Memorial, reflective pool, and then Lincoln.  It was AMAZING! Just as we were heading to the Vietnam Memorial we got a call that our 1pm meeting was moved up to noon.  It was just 10:20am so we needed to move.  We still wanted to go by the American History museum to see Julia Child's kitchen and Kermit the Frog.  We took a cab there and we were able to see all!  Ruby slippers too!  We saw a lot.  We then took a cab to the Senate building.  I think they call it Russell.  We met with a staff member of Senator Merkley.  It was a tough meeting but we made it through.  We went downstairs and saw the trolley that was taken to Capitol Hill by the Senators and Representatives when they need to vote.  It was very cool.  We went to the cafeteria for a bite to eat.  There was alot to decided from but I decided on just a hamburger and Jello. 

Next we went to see Senator Wyden.  He was busy in a meeting just down the hall and he could not leave it.  We watched him on TV.  It was cool.  We waited for a bit and then went downstairs again to get some thing to drink while we waited.  We went back upstairs and waited again.  It felt like a long time.  We were in the hallway because there was no room in his office.  There were about 20 people waiting for him.  When he came out of his meeting, followed by a group of people, he came straight to me.  It was amazing.  He was so tall!  I don't think I even came to his armpit!  He introduced himself to me and then asked me what he could do for me. I was so nervous.  I said "Give us money" and everyone laughed.  I got even more nervous.  We sat and talked to him for awhile.  I gave him a pin and a bracelet from the THINK ZEBRA campaign for the Immune Deficiency Foundation.  He pulled up his sleeve and put the bracelet on!  Then, he even put the pin on.  I couldn't believe it. 

Once we were done, we decided to walk to the National Archives to see the Declaration of Independence.  What we found was a HUGE line.  So, we went to our next stop and the best stop ever!!  We went to the International Spy Museum.  One of my favorite movies is Get Smart so I knew there were going to be some things in there from that movie or show.  I couldn't wait. My Mom had called ahead so they knew we were coming.  She called because she was not sure if we would be able to get there in time.  When we got there, we went up the elevator where we got to choose a spy identity.  As we were deciding that, this big guy came into us and bend over to talk to me (I was in a wheelchair due to all the walking I was really having a hard time breathing) and he said, "Olivia, we have a very important mission for you if you choose to take it."  I said “yes” so we went off with him.  We thought it was all part of the spy thing, but it wasn't!  We met Mr. Earnest who is the director of the museum.  He was in the CIA for 36 years.  He sat and talked with us for a while and gave us a goodie bag.  He was so cool!  They took us back into the museum area.  It was the coolest thing!  We had so much fun there.  We were there for over 2 and half hours but could have been longer. I was sad to leave.   

We got another Cab and went to the White House.  It was very busy there.  We took some pictures and walked around a bit then walked to McDonald's for dinner.  As we walked we saw the President’s motorcade.  It was so cool!  We got some burgers and back in the cab again.  As we got to the light, we saw White House Correspondent Major Garrett.  My Mom was so excited she forgot his last name.  The cab driver and I thought it was very funny!  We got to the hotel, had dinner and watched Survivor (3 hours before my Dad and Sister!)  We had an early flight so we were off to bed. 

We got up early and got on our flight.  I even got to see the pilot and the cockpit!  I got to sit with him!  My Mom took tons of pictures too.  We flew into Portland, met my Dad and Sister, and then we are off to Seattle for the Mariners game on Saturday.  It was fun to take a trip up there.  I was really tired but I wanted to go to the game.  We were able to go up there with the Primary Immune Guild of Seattle.  They had hamburgers and hot dogs for us to eat.  We sat and watched the game and then we went to Pike Place Market.  We saw the fish place where they throw the fish and then I sat on the bronze pig.  It was a lot of fun but I was so tired!!

Your friend, Olivia

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.

Last week, I went to the Seattle Children's Hospital to check in with my doctors.  Luckily, my Aunt & Uncle live in Seattle so we stayed with them.  My mom, grandma, and I left Portland on Monday because my doctor's appointment was on Tuesday.  Since my cousins were on Spring Break I was able to hang out with my cousin Mackenzie.  We played board games and the Wii.  It was kind of weird not having my sister around, but it was also nice just to be there by myself.  Mackenzie and I also played the piano together (that was fun).  My Aunt also taught me how to knit and it was so much fun.  I finished my first scarf in two days, and she is going to send me more starts through the mail so I can keep knitting (she didn't teach me how to start a scarf, just how to knit using a start). 

Before my doctor's appointment, we went to this great place in Seattle called Archie McFee's.  My grandma found it while looking for fun bandages for me.  She figured I needed some cool ones since I was using 5 bandages a week due to Sub CU.  We had already had ones that were kisses, toast, eggs and bacon.  Now we have eight new ones:  devil duck, bling, monster, tattoo, black cat and a few more.  I really like having fun bandages!

At my doctor's appointment I found out that I will be getting steroids every other week starting in June.  That will be nice, but I will also start rehab therapy.  They want to do that because of all my muscle pain and my tiredness.  I am not sure what to think of that.  My mom says maybe I can do something on the Wii, like yoga.  I really like yoga!  Also at my appointment we found this great thing called a J-tip.  I use a cream to numb my skin before every IV.  The J-tip numbs you right away.  I loved it!  The nurse gave is the packaging to take home with us so I can show my IV nurse Susan here in Portland.   Susan was happy to take it and do some research.  I was hoping they would have it for my next IV, but they didn't.  They did find it in the ER though, but it was a bit different.  The IV took 3 pokes this time because of broken veins.  It was so painful!  I was able to hang out with my Chemo Pal Krystal though, which is always a good thing.  I like playing games with her.

Another thing my family is working on right now is a blood drive.  And now we have a date and a place on June 7th at our church in West Linn.  I am excited!  I have wanted to do this for a really long time!  I am hoping we will also get the okay to do a toy drive for Bingo at the Children's Hospital at Legacy Emanuel since I love bingo and I would like to do something nice for Child Life.  I hope that we are able to do something like that along with the blood drive.  We will just have to see!

Until next time, your friend Olivia

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!

Earlier this week, I had an Immunologist appointment and he said I looked pretty good (WOO HOO!). Wednesday was another infusion day and this time I only got one poke in the hand (WOO HOO again!). My Chemo Pal Krystal came to the hospital and I had such a good time with her - we played "Scene It!" 

I got pretty good sleep Wednesday night, but not well enough to go to school the next day, so I missed out on a field trip to see the "10 Grands." I think that I would have fallen asleep anyway.  This is probably going to be my last week for school for a while. Friday was another medicine day. I actually fell asleep during treatment so it went by REALLY fast.  I also went shopping for Easter gifts for my parents at the dollar store.  I bought my Mom chocolate-covered grahams and oatmeal cookies for my Dad. We got our new puppy a bowl and our other dogs got beef-flavored treats.  On Easter our family decided to go out to eat. We went to Outback Steakhouse!  I LOVE OUTBACK!  I had a BIG hamburger and three sodas (my Mom let me have them and it was such a treat).

Monday, my grandma is driving us to Seattle to see my doctor at the Children's Hospital. She goes to all our medical appointments with us (and we LOVE having her with us!) I am getting checked out to see what my next step in treatment will be. In Seattle, we're staying with my Aunt & Uncle. My cousins are out of school for Spring Break so I get to see them too.  I am so excited!

Talk to you more soon.

Your friend,

Writing these blogs for the past 3 months has been a very great experience for me. I put into words my own personal philosophies to share with you. I hope that you enjoyed them, and maybe took something from them. I realize that maybe I didn't share a lot about myself other than my ideals, so for my last blog that's what I'm going to do.

I'm an only child of a single parent. My dad passed away when I was a baby, and though I don't remember him I hear we had quite the relationship. My mom is my best and most trusted friend in the world.  We have been through everything together, so we are not only best friends - we're war comrades. I can't imagine anyone better to be in the trenches with. She has 7 siblings, and 20 something nieces and nephews. My family is big, and has always been so loving and supportive of me and my mom. I am forever grateful to them for always being a call away. My life has been filled with love, and that's because of my amazing family.

Being diagnosed with CF at 6 weeks old prevented me from knowing any other kind of life. I tried to be a normal kid, and at one point I was so angry because it seemed impossible. In my teenage years I still strived to be normal, but it's now when I'm at the beginning of adulthood that I realize I'm just not cut out for normal. It's not because of my disease, although that's probably the catalyst, normal is just not who I am. I am an artist, a free thinker, an "old soul", a lover of originality and creativity, someone who refuses to live a dull existence. I've always thought that the best way to live life is to live it creatively. I'd like to tell you that I'm a very proud owner of the life I'm living. So I must be doing something right. 

Everything I have shared with you has taken me a lifetime to learn, and even now I'm figuring new things out everyday. But the last piece of advice I have to give, the thing I have learned has the most value, is this: LIVE! Go out in the world and live the life you have. Love the life you have. Be the owner of your life. Because it's the most valuable thing you could ever own.

Thank you for reading.

Love,

Phoebe

P.S. I have done a lot with CCA, and I can say that it's an amazing group of people doing very inspiring work. Thank you CCA for doing the incredible work you do, and thank you for allowing me to blog for you. It has been a true honor.

This week was spring break and I had a great time - I was busy!  We went to my aunt's on Sunday, and Monday we went to the Chinese Gardens (it was so pretty).  On Tuesday, we took my nephew to the zoo.  The zoo has this cool new "Predators" exhibit.  Wednesday is my hospital day and I was able to meet my new Chemo Pal Krystal.  She was so nice and pretty.  She and I played a cool game called "Are You Kidding?"  It was so much fun!  I can't wait until I get to see her next Wednesday!   My doctor and I decided that me attending my one class in school is too much for me, so I will have to go back to the tutor.  I am upset because I really miss all my friends.  I have been out of school since September.  It is hard to think about my classmates having so much fun everyday while I am stuck at home.  Someday I know I will get back there, I just have to wait until I feel better.

This weekend was kind of hard for me.  I started to not feel well on Friday.  Some of the side effects of all the medicine are bad - I had a fever and an upset stomach.   I woke up Saturday feeling better, so I went to my Uncle Marc's with my dad to play in the sun - WOO!  My uncle has horses and a dog named Scout.   I started feeling bad again though by the end of the day.  I really try not to let it get me down, but I am sick and tired of being sick and tired.  

Well....I hope everyone has a great week!

Your friend, 

Olivia

My time as guest blogger is almost up and there are a couple things more I want to tell you about. One of those things I haven't really gone over is faith.  A belief in God generally helps people get through the rough patches. 

At times I have been asked how I deal with having an incurable illness, chronic health issues, etc.  I have been asked about my religion, whether or not my belief in God is what gets me through.  I don't want to dwell on religion or God in this blog.  I just wanted to offer my version of "faith". 

Being of a certain faith helps people in tremendous ways; it gives them hope where there might not be any, it keeps them positive, it aids them in living healthier lives, and also helps them live more fulfilling lives. These are things that I have observed for myself.

However, I never was part of any faith while I was growing up. Although that's not uncommon by any means, I have found that a lot of people with CF, or any other chronic illness, are brought up as a member of a religion. It's logical that having a belief system and faith in a higher power would help someone who is ill. It's also safe to say that the people who experience illness through a loved one would also need that support. I know that the subject of religious beliefs can evoke strong discussions and emotions; what is true for some isn't true for others, and what helps some might not help everyone. But I know there are people out there like me who don't belong to a church, but who seek spiritual enlightenment and wellness. I know there are people like me who have made great strides in dealing with chronic illness without having a religious affiliation.  

My mom always taught me to look further into the world so I could really experience all that life had to offer. She taught me to believe in myself, and to make decisions in life based on what I thought was right or wrong, to understand about consequences of decisions I made (both good and bad), and to live in such a way that I would have no regrets. She allowed me to be an individual, and gave me freedom to form my own beliefs and make my own choices. Though I started as a baby with no beliefs, I eventually sprouted some, and here I am today 20 years old, my mind chock full of beliefs, some of which I have already shared with you in my previous blogs.

I don't bother with questions like "why me?", because it gets you nowhere. That is a dark abyss from which you may not escape, so don't go there.  It doesn't matter why. We are living in the present, and trying to live for the future. Everyone is eventually going to kick it.  Life is terminal.  So just live it and live it well!

I believe that I can steer my own course and create what I want out of life.  I believe that my sheer intention to live is the senior reason I am alive to blog about it.  I love my life.  I told my mom once that I didn't want to hear doctors tell me how long I had left and that I would stick around as long as I was interested in being here.   I really don't know if God has a plan for me or what it would be.  But, I know that I have a plan for myself and so far it's worked out pretty well.

Love,

Phoebe

I think that in life, especially life with a chronic illness, the future is unsure and unpredictable. We hold on to the big moments because they stand out, but it's not until we've been on the mental border of life and death that we start to appreciate life as it is.

Making the decision to get a lung transplant has made me admit a couple of things:

1. That being that end stage cystic fibrosis is a reality; it's not just some far off thing that could happen but isn't happening.  It isn't the type of thing you can really know until you are kind of close to it.
2. I'm not invincible.  Even though the odds are mostly in my favor, there could be a premature ending to my story.

Lesson learned!

I'm living for the present and the future.  I'm appreciating the life I have now, because in a few years I will most likely be living a completely different one.  And I'm learning the importance and significance of the little things in life I tended to overlook before.

I have become a connoisseur of these small things; these moments. I have found they add to your happiness without defining it.  Like having fits of laughter with my family, chasing my nephew around the house, snuggling up to a movie with my boyfriend, or just driving around on a nice day.

Call me a sap, but making the decision to get a lung transplant has left me with the feeling that life, and EVERYTHING in it, is short lived and should be cherished.  When I say short lived I just mean that time is fleeting, and things are always changing.  I have found myself going through these moments in slow motion, and locking them up. I am truly experiencing them; sucking every ounce of them up so I can retain the joy they bring me and use it later.

I think it's important for us to remember the way life was, and is.  Maybe I sound like a broken record, but remembering everything you've done so far (all the fun, all the struggles, the adventures, time spent with family and friends, time being sick, and time being well) gives you the motivation and the strength to make it to the future. Remembering simple times, and simple pleasures, and possibly even the boredom that sometimes accompanies them, makes the daily minutia of life a little more bearable. It reminds us that even when we're not experiencing light or dark times, there is still life in us.

Living with a chronic illness is a series of highs, lows and coasting, but there are small things in every day, and in every breath that could be cherished and held dear, and that's what I'm doing. 

How about you?

Love,

Phoebe