CCA Blog

Here's another blog for you to enjoy!!

 

This week, I went to the mall, and went school clothes shopping. That is any teenager's favorite part of summer. I can not believe it is getting that close to the school year, and then I'll be a freshman! Oh boy.

 

Friday and Saturday, I was busy holding another rummage sale. It was an ok weekend but it was so hot outside.  But it was worth it I guess, because I got out of doing chores all day!

 

This week I have an infusion, I have my infusions at Legacy Emmanual in the day treatment center.  I usually have treatments on Fridays because it's my mom's day off but they did not have any space open Friday so I'm going Wednesday.  Wednesday are fun days at Emmanual, I feel. It's BINGO day.  They play bingo on the TV and if you bingo you get a prize.  So it will be a treat.

 

After my infusion treatment I feel real tired. I'm not sure if it's the medicine or just the process of getting a treatment.  But I always fall asleep before my mom even hits the freeway to get home.  The treatments do make me feel better for a few weeks.  My body tends to get slushy feeling and I have pain in my legs.  The medicine not only protects my kidney and other organs in my body but it does help with the fatigue and pain I feel from having Fabry.  

 

My dad had a kidney transplant and my grandmother is still on dialysis waiting for a kidney match.  She does not have a living donor at this time so she is on the national kidney waiting list.  I pray my grandma get one soon.  She has been on dialysis for almost three years now.  My grandma and dad have fabry disease.

 

Well, I hope everyone is having a great summer. 

Portland Lyric Project II

I am so excited to share that we are, once again, in the  cool music recording business! We are pairing up some of the teens we serve, with amazing local music talent to create everything from beat box rhythms to emotionally raw ballads. It is Portland Lyric Project II! 

We have some wonderful local artists returning to our project including Dave Hall, Desmond Spann and Lisa Mann. We are adding incredible talent this year with, Keegan Smith and Tony Smiley!

Keegan Smith won Male Artist of the Year and Best Live Performance at the 2009 Portland Music Awards. He has deep roots in Portland, and has a huge heart for working with kids.  We are so excited to have him a part of our project!

Tony Smiley is known locally as the loop-ninja and, when you witness his verbal throwing stars and his black belt in smooth riffs, you'll understand why.

We have been thrilled to welcome back some incredible artists from last year as well as welcome new talent.  As we continue to bring new local songwriters into this project, we look forward to hearing the powerful songs that share these kids' stories of battling serious illness.

Check back, and we will update you on the creative process....even give you a sneak peek at some of the amazing lyrics the kids and artists write.

This week was awesome. I had flag camp for my colorguard and I learned a lot of new moves. My body is really sore.  I don't have too much planned for summer vacation. I did however go to wonderland last week, and my sister and I did a bit of babysitting to put some fun money in our pockets. I really want a lap top of my own so my goal for the summer is to save all my allowance and other money I earn, to go towards that goal of buying my very own lap top.

There is still a shortage on my medication.  I have not had any medication since the end of May. I will have one dose of medication available on July 21^st, and because I have a port I need to get it flushed on a regular basis so I did that last week.  My doctor has found another drug manufacturer that makes my medication so hopefully I'll be back on my normal schedule soon.  My medication helps protect all the organs in my body.  My mom is full of worry right now for me because she's afraid of what the lack of medication is going to do. But we have faith that everything is in God's timing.

I have something else to share with you and to all the kids out there beware!  My mom has already started buying school supplies.  LOL!!

Until next time!

Hayley Bivins

What a great two weeks!!  While at Club sport, I met and hung out with Jacob Albin.  He was able to get involved with Starlight too with us.  It was great because we all got to see a sneak peak of Despicable Me.  This was a GREAT movie.  Must see, especially in 3D.  It was amazing.  My Mom even was laughing at everything.  You will have to be sure and stay through the end too.  I can't wait to see this again.  It was SOOOOO funny!!!!  We love the time we spend with our friends from Starlight!

 

Mom and I got a chance to speak at the American Red Cross All staff meeting on July the 2nd.  My mom worked on our speeches.  She would ask me what I wanted to say.  She said we should have it written down so I would not go off subject.  I talk a lot sometimes.  We got there just in time to speak.  We were introduced as one of the keynote speakers.  That sounded pretty important to me!  After the Red Cross spokesperson introduced us, my mom introduced me and I told everyone about what I had and how it is being me with what I have.  After I was done speaking, everyone started clapping and then they were standing! A standing ovation. My Mom spoke about how my medicine comes from donations and how all they did helps me.  After she was done, everyone stood up for her!  People came up and talked with us too.  It was really nice.

 

We have been loving the sun.  We put our boat in the water at our friends' house for the week.  I got to spend the night on Friday night and then there was a big party Saturday.  We stayed there late.  I had so much fun!  Sunday was the 4th, we didn't do much.  Had a few fireworks and watched the ones in the neighborhood. It was quiet but it was fun.  The next morning we were back on the river for more fun in the boat.  I love being on the boat. 

 

I got to meet up with Krystal too.  It was the hottest day of the week.  We went to a local park where there is a water fountain.  We had a good time playing in the water and then went to get some ice cream!!

 

Well.  We are starting to get ready for fair.  We have our forms all filled out.  I can't show goats this year.  It would be too hard with all my treatments and everything.  We are going to show chickens and do things like photography, art and even my knitting!  I am excited but have a few projects to finish.

 

Next weekend we are off to a special camp for our family in Yakima.  My mom said since I didn't get to go to Outdoor School and that I am going to have to miss camp this year because of all my treatments.  I am really excited about getting away for awhile and meet kids with what I have.

 

Until next time!

 

Your friend,

Olivia

 

I am so happy school is out and that I will only have to do math over the summer. My mom thinks it will be a good idea for my sister and I to do it.  We have been kind of quiet around here.  Waiting for the summer weather to really get here.  In the last week we have been able to start to get our boat cleaned up and ready to put on the river.  I love to go in the boat.  I think that maybe I will even go on the inner tube this year, if my Mom will let me.

We were able to see Karate Kid in a sneak preview.  It was a really good movie.  I liked it!  If you have not seen it yet, do it!  I also got to see Toy Story 3 with Krystal, my chemo pal.    That was a really good movie!  It was even better than the 1st and 2nd one!! My sister went at a different time with her friend so we were both able to see it.

 

I was able to go to a birthday party at my new friend's house.  Even though I really was not feeling well, I was able to have a good time with all the girls.  They live on the river so they were all screaming at boats on the river.  The day was so nice.  We were supposed to go to the Beaver's game that night too but I really was not up for it.  I felt rotten.  I think it is the side effects of the medicine.  I really hate it, but I can't let it get me down.

 

My sister, Mom and I went to the CCA event at Club Sport.  That was so much fun!  I have never climbed a rock wall before.  I climbed up two walls all the way to the top.  I tried to climb about 5 more but my arms were so tired that I couldn't do it.  I even did the big swing.  It was so hard to climb to where I needed to be.  They had to help me up the wall but it was really fun to swing.  I was scared at first.  I even closed my eyes for a minute.  I didn't tell them I was scared of heights.  I think I would do it again though.  It was so much fun!

 

Today we are going to try to plant that garden.  It will be nice enough weather. 

 

Go out and enjoy the sun!

 

Your friend,

Olivia

Ok so here's another blog for the week!!! Ok first thing, was that school got out. YAY!!!! I had dance camp, which was pure awesomeness, except for the post camp pains. But my mom says that the pains will go away as my body gets used to using my muscles.

 

 I went to the Oregon zoo last weekend and we walked through the new dinosaur exhibit, it was real cool, so I encourage all to go see it.

 

There is still a shortage on my medication.  I was not able to get an infusion in June and I'm not sure if I will in July.  I hope so because Fabry disease can cause chronic pain. I experience a lot of pain in my legs and my legs can go numb. My mom says I need to pay close attention while I'm at color guard practice so I don't fall.  I have a motto when it comes to having Fabry disease. My mom and I tell each other this, " you can let this disease control you, or you can control this disease." I choose to control the disease and do what brings me happiness.

 

Another blog coming soon!!! ©Hayley

Hey so I'm back and wow was this week very tight.

First off, I was in the Rose day parade that happened in Portland, with my color guard.  Then I was getting big final projects done for school, and I was launching bottle rockets at school, and had to type the whole thing up.

But anyways, I haven't had an infusion this week.

Oh well, at least my apartment pool is open and now I can swim. I'm hoping to have a pool party with all my color guard team mates. Oh!! And this week I had my completion ceremony for ending 8^th grade!!!

Well I guess that's all of this weeks highlights for me to tell you for this week!!

Keep reading!!! Thanks!!!

:)

The blood drive was a success!  We had about 44 appointments (out of 48).  There were 16 walk-ins.  So 58 people all together.  There were few that couldn't give blood because their iron was too low.  We did get a total of 46 units!  That is 138 lives saved!  I was busy the days before making cookies for everyone.  I made chocolate chip, chocolate chocolate chip and oatmeal raisin.  They were a hit!  My mom and Grandma helped out that day too, there were so many people!  They even had to turn people away.  They deferred them to another blood drive in Lake Oswego happening on June 22nd.  Both my Grandpas gave, my brothers Chris, Brendan and Corey, my Aunts and Uncles and even my cousins.  My mom's high school friends and my Grandma's Hula and her friends from church came too!  One of my Grandma's Hula friends brought fruit and veggies.  Two brought cookies!  It was amazing that so many people came out to support something that I feel so strongly about.  American Red Cross has even asked my Mom and I to talk at their all-staff meeting in July to give them inspiration to go out and get blood donors.  I am really excited about this!

 

Since that long Monday, I have been kind of wiped out.  I am still attending school, and doing my infusions and steroid treatments.  Soon, school will end and I excited for that.  I wish that the sun would come out some more. My dad fixed up a riding lawnmower for me that was given to him.  It is just my size; no one else can fit on it.  I call it the MM (midget machine) because it fits just me!  My dad and I mow the lawns together.  He makes the first round and then I follow him.  I really like to do this.  On Sunday, my sister and I did our backyard, which is huge!  My Dad, Grandpa and my Mom sat out on our deck and watched us go round and round.  We even did a little bit of work in the garden that day.  I am hoping for more sun so we can get the garden completely planted!

A few years ago I started to dream about how to take a passion for motorcycles and combine it with an idea for a fundraiser for CCA's Caring Cabin.  The vision was to have a ride from Portland to the Cabin in Pacific City.  After sharing the idea with the CCA staff, our Board and various community motorcycle enthusiasts, I knew right away that this could be another successful event and a great way to share the Caring Cabin and CCA's mission with many new friends.

The dream came true on June 5^th as we had over 100 bikes, starting at Paradise Harley-Davidson, roar their way to Pacific City.  The Caring Cabin grounds were full of bikers who enjoyed a beautiful sunny day, lunch and tours of the Cabin and the path to Lake Dylan. 

At the end of the day we raised over $25,000 and people are already asking about the details for Joyride II.  Be sure to check out the photos from the event at CCAJoyRide.org and start making plans to come ride with us next year!

Cheers,

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

We have been busy, which is nice!  I like to be able to do other stuff besides doctor's visits and treatments.  We were lucky to take part in Kid's Day.  This was great!  We got to go fishing at a lake.  I have been fishing once before with my Grandpa but this was different.  My Dad and sometimes my Mom would bait my sister Hana's and my hook and then we could cast away.  I got really good at casting.  I got a few nibbles.  My Dad caught a few fish but we didn't keep them.  It was a rainy day but it was so much fun.  My sister and I even got to bring home our very own fishing poles.  We keep bugging our parents to take us fishing.

We also got to go to the sneak preview for the movie, The Karate Kid.  It was such a good movie!!  If you get a chance to go see, do it!  Jackie Chan is so funny!

Even though it was a holiday weekend, we didn't really go anywhere. My Aunt and Uncle came over for a BBQ on Sunday.  We had all the good food - hamburgers, hotdogs, homemade potato salad, cole slaw and corn.  YUMMY! My uncle brought his metal detector.  We walked all over our yard and looked for treasure.  We found a shiny quarter and a few more coins.  We found some old toys that were my dad's too! It was so cool and I can't wait to do it again.

I am so happy school is almost out.  I am ready for a break from homework and really can't wait for some sunshine!

Until next time!

Your friend,

Olivia