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Twenty-year-old Ashley is a cancer survivor and an up-and-coming performing artist. In the past year, Ashley took the stage at two CCA sponsored events including the Portland Lyric Project Concert and the 2011 Hero Gala. We thought you might like to take a peek at this CCA-served rising star!
Hi my name is Maile. I am 11 -years-old, and I have A.L.L. I was diagnosed April 28th 2010.
The story of how I figured out I had cancer is a lot like reading a book, so emotional, so descriptive and so real... except one thing is different when times get hard or bad things come my way I can't close the book and walk away. Fear no longer takes a toll on me. The words Tough, Strong, Courageous and Love are now in charge guiding my path... leading me until I'm cured and forever after that. I have chosen to write because I want to show what it is like living with A.L.L, and hopefully help anyone else battling a similar battle get answers to their questions. But I mostly want to show that if you have cancer you are not alone and no matter what happens you can beat this!
Here is the story of how I figured out I had cancer. It was a typical weekday, heading out to swim team. The same old, same old, routine around here. Who knew in not that long my life would change and never be exactly the same again. We got to swim practice and I hoped into the pool and started doing some laps. All of a sudden I couldn't breathe and was making a wheezy like noise just to get a breath in. Of course I was breaking down crying and no one knew why this was happening to me. I was scared. My mom just thought I was being dramatic so she told me to get back into the pool... because I admit I am awfully dramatic. But this was NO laughing matter or me being drama, this was serious. I got back in the pool and tried to swim it off. Before I got back in the pool I had, had a 5-10 minute break. But that gasping for air feeling didn't go away it only got worse the more I swam. So I got out and confessed to my mom how I really wanted to swim but I couldn't. So she took me home stressed and worried not having a clue why all of a sudden I had felt this way and why I was so easily out of breath. Luckily, my mom worked at OHSU so she knew everyone up there and who was attending in the E.R. that night. My mom called them and asked if she should bring me up just to see what was up with me. My mom told them how one moment I was gasping for air and the next I was breathing fine. She also told them that a weak before I had went to Pump it Up with my best friend Haley and I got a really bad rug burn that wouldn't heal so I started taking antibiotics and even with the antibiotics the rug burn wouldn't heal. The rug burn had gotten so bad it had made a small hole in my wrist and we were soaking it in Epsom salts to drain it. The people up at the hospital told my mom to bring me up... better safe than sorry. I am so glad she brought me up! When we got up there they put a IV in my hand and they drew some blood. We were all scared but I got a stuffed animal so that made me happy. We were there until 12:00 a.m. looking for answers. On the bright side, they had a wonderful volunteer that entertained me and my sister. My mom was SOOOOOO stressed, it was sad and hard to see her like that.
Finally, results came in and my blood was really low and they thought I had either a virus or Leukemia. I took about a week until we found out the final results. I had Leukemia. :( Now the question was which kind of Leukemia did I have? Well my mom had a strong feeling it was A.L.L and she was right. I went from the sporty, caring, kind, energetic, loving, healthy 9-year-old to a kind, loving, caring, unhealthy 9-year-old fighting for my life.
Now I am 11 and in maintenance! Maintenance is where you only have to go to the hospital once a month and you are cancer free!!!! I am healthy! Having cancer has taught me a lot and I have learned to be grateful for little things and not to take any moments for granted. As long as you have a family that loves you, you can get through anything! Live. Laugh. Love. Cure Cancer!
Written by, Maile
For many of us at CCA, whenever we tell someone what we do, they comment on how hard it must be to work with sick kids. Yes, it is hard at times, but it is such a privilege to walk alongside families during this unimaginable journey and bring little bits of joy to their hospital experience.
Unfortunately, the last few weeks have been filled with sad news for a lot of the families in the Chemo Pal Program. When a child dies in our program, we ask the Chemo Pal to reflect and write a few words about their experience with the child that they were matched with. Reading those testimonies always brings tears to my eyes, but also reinforces how much I love my job and how lucky I am to be a small part of these kid’s lives. Hearing about the impact that the kids have made on the Chemo Pal, and knowing that the impact is mutual, makes me smile through the tears. I thought it might be nice to share some of these inspiring comments:
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My favorite moments working in the Music Rx program, are those where the entire room comes alive with music. The following story is one small example of the kind of interaction that I walk away from feeling touched by the magic.
I offered music to a very sick but absolutely adorable three year old girl with cancer. Her downcast eyes told me that it would be a challenge to inspire her today. I asked if it was okay to play music for five minutes and see how she felt. I told her that I could leave as quickly as I had arrived if the music did not make her feel better. I walked in with a large harp, a guitar, a reverie harp and even a tambourine. As I sat down, her dad confessed that he loved to play guitar. I handed it to him and followed along on harp. Her aunt was also present and asked about the reverie harp and so I placed that in her hands. I asked the little girl if she would like to play anything, but she shook her head, no. She did ask if I could sing “The Wheels on the Bus.” Before I knew it, everyone in the room was singing, dad and auntie were playing, and not only was she smiling, she was DANCING!
As a volunteer photographer for CCA, I’ve seen up close how CCA’s programs make a difference in my community. But recently I gave birth to my daughter who contracted a life-threatening virus shortly after birth and spent the following weeks in the Pediatric ICU. When we were at Emanuel, I was so, so touched by the programs that were part of our daily life there, and how much CCA is a part of how the pediatrics units function.
It was like there were little reminders of Alex' life everywhere that I went, of her legacy and her vitality. It brought me to tears many times seeing our little girl play in the Star Lounge while her baby sister was there and knowing that you guys support the families who were going through so much more than we would.
I have always known, conceptually, that I was volunteering for an amazing organization but seeing it from the perspective of a parent, even though we were just on the short stay floor while she fought through the infection, was amazing. Thank you so much for all that you do!
Greetings everyone! I have returned for a guest blog post here on the Tween Blog! This week has been exceptionally eventful! First of all, the CCA was nice enough to give us tickets to a Portland Timbers game at Jeld-Wen Stadium. We could walk there because we are so close! The game was most likely the most exciting, tiring, cold, and the craziest thing I have ever experienced. The crowd was crazy, I could barely tell what was going on half the time, but it was really fun. A nice chemo-pal with his chemo kid and his wife Bonnie sat next to us and she gave me a cool Timbers scarf! She explained to us a few unfathomable secrets of soccer, and was nice to talk to! At the end I was so exhausted that on our way home I collapsed on the hill we live on; I was too tired to move so we had to wait a while before I felt I could walk the rest of the way up.
Thursday March 10th my mom called me late that night when I was at school getting ready for finals the next week. I had already talk to my mom on the phone earlier that day knowing that Danny had been on oxygen for the last couple days to help him with his breathing. I knew the second I saw that she called that Danny wasn’t doing well. I answered and she said that I should come home to be with Danny and the family because we weren’t sure how long he had left. I instantly broke into tears and rushed home. My friends Taylor and Michelle picked my sister up from Linfield and got us home as fast as they could. I made it home by 11:00 to see my family and his close friends gathered around him in the living room. By the time I got home Danny was barely responding anymore but I know that he knew we were all there. I specifically remember when I walked in the door standing at the end of his bed as he opened his eyes so wide to see Emily and me as we just got home. That’s how I knew he knew we were there. I also remember so well when I was sitting by him later that night as I was holding his hand telling him how much I loved him and how were all there for him and he squeezed my hand tightly. I knew he was listening to us and knew we were they with him every step of the way. Those things I will remember so clear for the rest of my life.
This is my final blog post for the CCA. I have just entered school again and my life has been returning to normal, so it's time to pass the baton of the Tween blog to someone else. I wish them good luck and I plan to follow their blog like many of you may have followed mine. To finish up, I've made a farewell animation using Flash as a way to thank the CCA for all the kindness and support it has offered to me, although the animation is slightly messed up due to technical difficulties. Some good news is I will be continuing to blog at cysays.wordpress.com, and my mom even got me my own web domain, cysays.com, which I can eventually use once we get that set up. I plan to make more animations and drawings on my new blog and I’ll write on there too but probably not as much as I have written here over the months.
Last week my mom and I went to a special gathering hosted by an organization called “Candlelighter’s,” another foundation that aims to help kids with cancer and their families. The gathering was about something called art therapy. It was comforting to know that there were other people there who could understand our situation, but less so because that would mean that they also had cancer. We were treated to some pizza and juice and after a short welcoming speech we were all given my very favorite brand of clay, Model Magic, to make an animal of our choosing and the real fun began! At first I was stumped about what kind of animal to make, so on a whim I made a fictitious creature called a “creeper’ from my favorite computer game, “Minecraft,” which I mentioned in one of my older posts. Once the creeper was done, we still had time left and I wanted to make something light blue, so I decided to whip together a jellyfish! With little time left I drew from my dwindling reserves of grey and also whipped together some pink for a mouse. Unfortunately, the woman had already started talking so I had to rush to finish. The result was the cutest thing I ever made, with tiny gray Mickey-Mouse style ears, a round pink nose, and an equally pink tail attached to a plump tiny body only a centimeter in length.
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