CCA Blog

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 got a huge animation project I'm doing for C.H.A.P. (Children's Healing Art Project) involving an entire solar system that I made up over the course of about six years, well before I ever had leukemia.  I suspect I could continue to build on it for the rest of my life.  So far I have four planets and four species, each with their own nature and society. Since my animation is a documentary, well, I've got a lot to document, so that will be one fun little thing to keep me busy here at the hospital.  

So far I have been adapting well to being back as an inpatient, though it seems like chemotherapy wipes me out for days on end.  I hope I don't become too much of a couch potato during this stay.  You see having room service, an iPad and a bed to lounge around in can make you forget how much you can really do.  So every day I try to stay conscious of my surroundings and if I can't do things on my own for a while, my mom will always pick me up from the depths and save me from becoming an idle buffoon with no knowledge other than all sorts of crazy stuff from the Internet and remind me when I can start to do more things for myself.  But I can't forget that the very thing making me feel so sick is saving my life as well.  So there is the psychological side of chemotherapy.  Now, on the physical side of chemotherapy, it is ABSOLUTELY EXHAUSTING!!!  It feels like I just ran ten miles in one go and then I really have to go to sleep, so basically it just makes me really tired, and sometimes dizzy when I over exert myself.  It also makes me throw up, and when it comes to throwing up, well, there is nothing I would like to discuss more!  However, I am not going divulge any details on that specific subject, most likely much to your relief.  That doesn't seem that bad now does it?  DOES IT?  Well a small amount of all that discomfort is indeed very piddling, however chemotherapy does not give small amounts of discomfort, instead it unmercifully delivers leviathan proportions of pure unfiltered discomfort, or, as I call it, it makes me chemo-ish!

One of the things that has made these weeks especially tolerable is all these animations I've been creating with an App on my iPad.  Not just the huge documentary for CHAP, but also little animations, one of which I would like to share here to commemorate my having a bacterial infection of the gut called C. diff, short for Clostridium difficile.  

This is the second time I've had that nasty C. diff infection and right now I'm getting cramps in my stomach all the time.  It is not only very painful, but it is really a nasty type of gut pain - a stinging pain that hurts really bad and really sharp, like an aching pain that stays there for a long time and doesn't stop.  It also gives me diarrhea.  However, the pain has been getting less and less horrendously unbearable every day because now I'm getting antibiotics for it and I get something for the pain!  Just before we were put in isolation, which comes with having C. diff here and I have to stay in my room, I had a little secret outing.  During the outing we (me and my mom) went outside the hospital and found a secret sky-walkway.  We went down to a big building where we stopped and then turned back.  We also took a lot of pictures.  Here is one of me looking defiant after stepping outside: 

Because I'm in isolation, people coming into my room have to wear gowns and gloves, like HAZMAT suits because C. diff bacteria makes little spores that could be carried to other kids' rooms that are also without any immune cells to protect them from the C. diff destroyer of guts.

Well, that's it for the bad stuff, onwards to the good stuff!  First on the list, I've made a new friend up here on 10 South!  Her name is Bella and she is only 4 years old, which makes her all the more fun to play with!  Another thing that keeps me happy is drawing alien worlds in a cut-away like fashion.  Over the years I've gone through many different styles of cities and species, and so far I have the Ikks, which are green blobs with an eye in the middle, Mettillians, which are creatures who actually grow their own cybernetic exoskeleton, Incompertians, microscopic precursors to all the other races, trapped on their home planet due to an enormous force field that some idiot put up, and lastly and most recently, the Manufactrons, robotic creatures holding an ancient secret in their home world.  C.H.A.P. really helps me when I draw and my animation is going to be about this solar system.  You see here at the hospital they have a little thing that happens every Tuesday and Friday called C.H.A.P. Art where anyone on the unit can go down to the play room and get paints and clay and markers and work there with C.H.A.P. people or they bring the stuff to you if you want it and can't get away!  Also, every few days a harp player from the CCA will come to my room and play for me, and the harp makes just the most beautiful sound that reverberates through the very foundations of my being!  To put a long story short, harp music is awesome.  I personally think its very peaceful and it makes you feel like you're in a trance, it makes me curl up into a little ball and slowly move with the music.  So all in all, the good DOES outweigh the bad, and the experience is bearable, yay! 

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 Pacific NW come to compete.  I can't wait.

I didn't have medicine this week, but I might get some in the first week of  September.

I've also been making dinner with my mom a lot lately, we love doing the cooking together. We have always been real bad about eating at the table. We have always been tv tray eaters but we have been sitting at the table as a family for over a month now.  My mom is very proud of us and wants to keep it up.

I went to Oaks Park last Saturday with my Chemo Pal, Kerry, as on an out-of-the-hospital day.  We finally got up the courage to go on the Screaming Eagle!!! It isn't even scary!!! Everybody just screams because they love it! I'm hoping my mom can take us to the state fair, I've never been, but it's back to school time and I know my mom spends a lot of money getting us ready for school.  But Oaks Park is just as great and it's here all year round. J

Well  thanks for reading and blog you next week.

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 out all weekend until Sunday night when I found out Danny had to go to the ER due to on and off fevers all day and his left shoulder severely swollen all the way down to his hand. The second I found this out it worried me and immediately called my mom making sure he was okay. I've never been far away from home when something like this happens and it worried me not being able to be there for him or go to the ER with him and my mom. Thank goodness I had my friends there to support me and tell me he was going to be okay!

He was admitted to the hospital that night and has been staying there for the last few days. After many scans and tests we are still waiting to know what it is that has caused this. It is most likely some type of infection causing his counts to be so low, so he has had four transfusions since Sunday night. The swelling seems to be going down from antibiotics and we will know shortly what the infection was. I'm just so happy he is okay and that he always has a positive attitude about everything!

It's exciting to be celebrating our 15^th 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, resources, friendship, and programs where very sick kids, their parents and families can escape, rebuild, smile and renew their hope & energy.

What started around my kitchen table has evolved into an organization that has provided free one-of-a-kind services and assistance over 101,581 times in 2010 to kids, teens, family members and medical professionals. The work begun by a few of my kind-hearted friends is now continued by a professional staff of 19, an amazing group of board leaders and more than 1,300 phenomenal volunteers.

This summer we've celebrated children and families at the Olsen's annual Wine & Wishes party, celebrated our 500th Chemo Pal match, hosted a Rose Garden suite full of cancer kids and their parents for the Justin Bieber concert, completed an A+ audit, laughed and celebrated at the Children's Pro-Am golf tournament, travelled to NYC for meetings with our partners Nike, Converse and Anomaly for the MyMusicRx.org initiative, and delivered soothing, live music floating down the hallways of over 9 children's hospitals and facilities in Oregon, SW Washington as well as at Mattel UCLA and Miller children's hospitals in Los Angeles, California.

I hope to see you at our Annual Celebration of Courage family festival, this September 12^th at the World Trade Center in downtown Portland.  Come say "hi"....I will be wearing a fantastical, purple hat and eating birthday cake with over 2,000 friends and supporters.  Thank you for all you make possible for families like mine.

 Regina Ellis is the Founder and CEO of the Children's Cancer Association

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 mask to protect myself from other people's germs.  Once this huge Hyundai Hope On Wheels campaign came out to Doernbecher and I got to get my hand painted and then stick it onto a car leaving a handprint on it - and I was on TV!  I also went outside when one of my nurses smuggled us out of the building for a little trip around the exterior of the hospital when no one was looking.  When I finally did get to go home on Thursday, I was literally jumping on the (hospital) bed when my mom was packing!

The first thing I did when I came home was to jump onto the couch and lay there in pure bliss for approximately half an hour, basking joyfully in the fact that I was at last at a place I could call home. Then I surfed the internet and played a couple of single player adventure games including Coma and Nevermore 3 on a neat game website called Jay Is Games.  Once I got over the wave of amazement and disbelief that I was home, I was very happy to see my friend and neighbor, Daniel.  We played a fun game together on my iPad called Jelly Car, where you drive these little cars that act as if they are made of jelly through an obstacle course to get to the finish line.  Then my brother Noah and I played a multiplayer sandbox game called Garry's Mod across our home network.  We couldn't play it using WiFi in the hospital because it didn't work on the hospital computer.  We played very late into the night, then I spent the end of my evening reading The Alchemyst, a book about a couple of normal kids that have to team up with a legendary alchemyst to save the Earth.

Our family has always stayed up really late into the night, but in the hospital my schedule went completely upside-down.  I was staying up for long periods of time because sometimes, weird drugs I was taking for stomach pain, nausea, chemo, or the notorious lumbar puncture forced me to sleep all day.  Oddly enough, I did not sleep very well on my first night home in my bed.  It felt different than what I was used to at the hospital, but somewhat more comfortable.  I guess I got used to the hospital bed, but my own bed is still really nice and comfortable!

It looks like I'll be home for a total of one week this time.  Too bad, I really like it here.  On Friday I'll be headed back up to Doernbecher to get some chemo and I'll be there yet another few weeks before I head for a bone marrow transplant.  When it happens, I will be excited to probe my brother about his experience with the anesthesia!

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 recipients and their families. 

This is where CCA has been different.  Every touch point I've had in the past 2 + years (from leadership at the highest level) to the supporters, to the employees, to the volunteers- has all been filled with nothing but positive emotion, and that's what makes CCA great.  It's something that is not easy to replicate and something many organizations could benefit from.  Support nights with Pizza, Trainings with Pizza, luncheons, to newsletters highlighting members of the CCA family are all things that help make it a warm and inviting experience. 

Another element that I appreciate is the way you support and establish boundaries within your Chemo Pal matches - this is something that definitely helps more than people realize upfront.  Everyone wants to help, as much as they can but sometimes they don't understand how this can put a strain on them in the future. 

 Matt is a valued Chemo Pal and friend of CCA

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!  There were 11 of us there.  We also celebrated a few birthdays too.  My Dad, my aunt, my cousin, two 2^nd cousins and mine also.  We are all have birthdays in July.  My aunt Nasty (Her name is Nancy but I couldn't say it right so I would call her nasty.  She really isn't nasty at all) gave my 2^nd cousins and I squirt guns so we had a water fight too!  We got to play on the beach at D river and also a beach on the lake.  I really like to play in the sand and the water.  Grandma says will be getting the same house for next year, We all can't wait!!

I got to spend some time with my Chemo Pal, Krystal, too.  She brought this really cool thing where you make aliens and  then you can dissect them.  It was called Martian Matter.  It was so cool.  My sister even made some too!  If you find it in the store, you should get it!  Very cool!!

We got to go the rodeo too.  It was the PBR rodeo in Molalla.  I had never seen something like that so close! We got to meet the cowboys and sit in the front row.  A bull came running near us and even ran into the fence.  It was such a surprise because I had just went up to the fence to get a better look at the bulls.  It was cool to watch because it looked like he was going to come through the fence but didn't .  He didn't get hurt either!!

We are now getting ready for the fair next week.  I won't have a steroid treatment in the hospital next week but that is good because it is  chicken showmanship that day.  My sister and I are showing  them on Wednesday morning.  We are also entering a lot of different things in the exhibit hall like pictures, drawings and even my knitting!  We are also doing a blood drive this week, going for a tour at Red Cross and still working on getting donations for Emanuel Children's hospital.  Border's is doing a big benefit month for the hospital and we are really excited to see the hospital get all new books for their new ER books for kids program!!

My last blog, I just can't believe it.  I have really liked writing these with my Mom.  She has been my secretary.  It is fun to talk and watch her try and write to keep up.  It is better when she types, she is fast.  Thank you all for reading my blogs.  I hope you still check back here so you can read the adventures of the next tween blogger!

Your friend,

Olivia

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 event, over 100 amateurs, live music from Tim Ellis and Jimmy Walker, iced martini bars...all on a bright sunny day at The Oregon Golf Club.  Best of all, we got to meet and hear the family story from Greg Wolfe which was incredibly powerful. 

Local and national businesses have got behind the event with sponsorships from companies like Columbia Distributing, Les Schwab, Perkins and Company Accountants, Opus Solutions, Emerick Construction, Pepsi, and All American Hearing. 

Next year's event is scheduled for August 22nd at The Oregon Golf Club and the player's list is already 90% soldout. 

Grant Hammersley is the CEO of Opus Solutions, the leader in integrated event solutions.

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 really makes a difference on how I feel not to mention I want to keep my organs healthy.

After my infusion on Friday I went to the Molalla Buckaroo PBA!!!! It was totally AWESOME!!!!!!!  If you don't know what the PBA is it's professional bull riders. The cowboys ride on the back of bulls and try not to get knocked off. It was funny to watch the people try and get the bulls back into the cage after the riders got off. There was so much food to choose from!!  I got a giant hand dipped corn dog. YUM it was good.  At half time my mom and dad bought us a giant elephant ear.  It really was the size of an elephant's ear.  My sister got a cow girl hat. She loves hats.

I have something I want to share about CCA.  My family lives in a 2 bedroom apartment.  My mom and dad have been looking for several months now to find a three bedroom in my high school boundaries that they could afford so my sister and I can have our own room.  They were not able to find anything so we sat down about a month ago as a family and talked about options. My mom and dad came up with a plan.  They were going to move into the living room so we can have our own room.  This is where CCA comes in. My mom asked CCA if they could send out a message to all the CCA families and see if someone had a hide-a-bed they did not want. My mom said, "CCA went above and beyond," because CCA bought us a brand new hide-a-bed.  My mom and dad are now sleeping in the living room. My mom says that she is happy with the plan because she sees how happy we are having our own rooms.  My mom is the best!!  And CCA is the best.

Well I hope everyone is having a great summer.

Hayley

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 sick.

My sis and I got to do a really cool painting class down at the CCA office.  We were painting in watercolors.  I made a tye die flower and my sister painted her's purple.  We got home and did one on fabric.  It was kind of like Batik.  It was very cool!

We went to Camp Prime Time for the weekend for a family camp. It was outside of Yakima Washington way up in the mountains.  It was a long drive but really worth it.  It was SOOOO awesome!! We went horseback riding, fishing and I even got to drive the boat on the lake!!  We spent the weekend with other people from Oregon and Washington that have what I have.  It is so cool up there!!  Just a tip, if you go, bring bug spray....LOTS of bug spray!!

Another thing we did through CCA was golfing at the Lake Oswego Golf course.  We learned chipping, putting and on the driving range. My instructor said I did really great for my first try.  I look forward to doing it again!!

Well, I started my new medicine last week.  It is really new and hard to get. They say it is better.  We will be doing my medicine only once a week for now.  This would be good for me because it would make it so I don't have to do a treatment on Friday!!

Krystal, my chemo pal, came over to hang out this last week.  We have a great time painting horses that she brought over. I painted mine black and white like a Dalmatian and she painted hers brown.  It was so much fun.  I love to spend time with Krystal!!

This next weekend we are going to the beach with my Mom's family.  I can't wait to hang out with my cousins!!

Until next time,

Your friend,

Olivia