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! 

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!

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

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

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

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!

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

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