Blog Entries

Back to the hospital

cyrus@joyrx.org — Tue, 07 Sep 2010 08:00:00 +0100

On Friday, August 27 I was sadly dragged once more back up to Doernbecher 10 South where my third cycle of chemotherapy promptly began. I'm in a different room now and I'm back after being home for a week. Its funny - at first, every time I tried to go back to my room now I found myself going to my old one. I guess I stayed there so long that it got plowed into my brain that room 14 is my room and I can't get over the fact that I'm in a different one now.

I've go [...]

Oh this week...

noname2@joyrx.org — Tue, 31 Aug 2010 08:00:00 +0100

From Monday to Saturday I was at Band camp with my color guard. Practice was from 10 am to 6 pm. By the time I got home I was tired. On the last day I woke up and my legs felt numb. I sometimes out of the blue get numb legs which makes it hard to walk but I kept going and made it to practice the last day. By the end of camp my feet were sore. I am getting better though. Our first competition is 9/25/2010 at the Hillsboro stadium. Marching bands from all over the [...]

Life as a sister whose brother is fighting cancer

kelsey@joyrx.org — Tue, 31 Aug 2010 08:00:00 +0100

Since Danny had his recurrence, he has been going through chemotherapy but just recently has been failing his counts not being able to. The doctors decided that he needed to start up radiation since he kept failing his counts. Monday August 30th was his first day of radiation, which he will continue to go through for 6 weeks.

This past weekend with my best friend, I went down to Northern California to visit some friends who already had started college. I was just hanging [...]

Summer Reflections

Regina@JoyRx.org — Tue, 24 Aug 2010 08:00:00 +0100

It's exciting to be celebrating our 15th Anniversary! I believe after all these years behind CCA, that life is hard and wonderful and messy and unpredictable. CCA shows up the moment any child is diagnosed with a catastrophic illness and we stand by their side through some pretty dark and scary days. We deliver compassion, hope, res [...]

Home at Last

cyrus@joyrx.org — Tue, 24 Aug 2010 08:00:00 +0100

Last Thursday, August 19, I was at last was sent home after almost sixty straight days of being confined to the inside of the hospital! It was incredibly exciting that I finally was able to go outside for any longer than a couple of minutes. My last time home I was only able to stay for a measly 2½ days before I had to go up for a clinic visit, only to find out that I had to stay there for another two months. I was able to go outside twice, but I had to wear a mas [...]

Compassion Sets Apart CCA

matt@joyrx.org — Wed, 18 Aug 2010 08:00:00 +0100

Giving back to the youth of my community is an important value for me. I have worked with other local non-profits over the years and while it's been arewarding experience on many levels, I think what is missing is compassion. True and honest compassion. Caring for employees, grateful for volunteers, and thoughtful with r [...]

Final Blog!

noname@joyrx.org — Wed, 11 Aug 2010 08:00:00 +0100

We have had a busy few weeks around our house! We spent a long weekend with my grandpa and grandma, Aunts and Uncles and cousins all at a house in Lincoln City. We like to get one on the beach but this year we had on one Devil's lake. We brought our boat so we could ski and inner tube. That was fun. The weather was nice enough that we could spend sometime in the boat. I even got to drive it! The house we stayed in was really big! Ther [...]

The Success of the Children's Pro-Am

grant@joyrx.org — Tue, 10 Aug 2010 08:00:00 +0100

From a guy that runs a corporate event management company doing over 1000 events per year, The Children's Pro-Am is absolutely classified in the ultra cool category. The objective was to raise significant dollars and awareness of CCA to a completely different group; mission achieved.

There were golf pro's from all over the NW in the ev [...]

Wow this week was cool!

noname2@joyrx.org — Tue, 10 Aug 2010 08:00:00 +0100

On Friday I had an infusion and I'm very glad I did. My body has been hurting and pain is a side affect of having Fabry. It's amazing because after I have an infusion I feel so much better. It only lasts a few weeks though. My doctor said there is another drug manufacturing company that is almost FDA approved so I will have two companies to get my medicine from, so maybe I can get back to having my infusions every other week instead of one every six weeks. Because it r [...]

Two Weeks of Fun!

noname@joyrx.org — Wed, 28 Jul 2010 08:00:00 +0100

It has been busy around here the last two weeks so here we go...

My Dad found 2 little ducklings swimming around really nasty water at his work. There was no Mom or Dad around so he called my Mom to come and pick them up. We have had ducklings before so we knew how to treat them. Sad news is that one lasted a day and the other lasted 5 days. My Dad said that because they were found in nasty water that they may have drank the water and it made them [...]

Bingo!

noname2@joyrx.org — Mon, 26 Jul 2010 08:00:00 +0100

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!

Portland Lyric Project II!

mturina@joyrx.org — Fri, 23 Jul 2010 08:00:00 +0100

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 retu [...]

Welcome back to my blog!!!

noname2@joyrx.org — Mon, 12 Jul 2010 08:00:00 +0100

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 sho [...]

What a Great Two Weeks!!

noname@joyrx.org — Mon, 12 Jul 2010 08:00:00 +0100

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!!!! [...]

School's Out!

noname@joyrx.org — Tue, 29 Jun 2010 08:00:00 +0100

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.

< [...]

Summer's Here!

noname2@joyrx.org — Mon, 28 Jun 2010 08:00:00 +0100

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. [...]

Tight Week!

noname2@joyrx.org — Tue, 22 Jun 2010 08:00:00 +0100

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!! A [...]

The Blood Drive was a Success!

noname@joyrx.org — Thu, 17 Jun 2010 08:00:00 +0100

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 [...]

First annual CCA Joyride a big success!

cliffellisjr@aol.com — Mon, 14 Jun 2010 08:00:00 +0100

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 [...]

My Memorial Day Weekend Adventure

noname@joyrx.org — Wed, 02 Jun 2010 08:00:00 +0100

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 [...]