A letter from Avalon's view
Subject: February 28, 2005 from Avalon
Hello everybody!
I'm sorry I'm a little late with last week's update. I made Mommy promise to let me do it myself,
and I've felt kind of ooky lately.
Well, my week was kind of stinky. I usually only have to go to clinic on Thursdays - but I was
there on Monday, Tuesday, and Thursday last week! The good news is, I got lots of Mommy
time!
On Monday, I had to go have a special injection of something called Peg Aspariginase. How
stinky is that? I have my port, but they still had to give me a shot. They were nice to me
though. They put the numbing cream on the front of both of my thighs, so at least the shot
wouldn't hurt as bad. That's nice, but I still think any shot stinks.
The funny part of the Peg shot is that they had to test my potty first. They put cotton balls in
my diaper! That is one silly feeling...
I had to wait for a while to, you know...fill up those cotton balls. So I got to eat as many Bar B
Que potato chips as I wanted and just hang out and play. The really neat part is that my
sissies came with me to the clinic. They didn't stay very long, Daddy came to get them after a
few hours, but it was great having them there. I got to show them off to Dr. Ranalli and Diane,
and to all of my nurses. I got to play with the big kitchen with Ambrosia, and play babies with
the high chair with her and everything... It was lots of fun! When Daddy came to get them, I
was so happy - I thought we were all just going to play. But...Daddy took them home for dinner
and Aurora's school, so I was stuck with just Mommy. But its OK, she read me lots of books
and we watched cartoons.
After lots of time, they finally called us back to get my shot. My potty results weren't very good
- so the nurses talked on the phone to lots of doctors. They decided to give me the shot
anyway (rats!). I don't understand my nurse though. When she took off my patch and washed
the Emla cream off of my leg, I told her "Thank you", and she looked sad. But Mommy says I
should always be polite. So, even though I cried really loud during the shot (Peg hurts
REALLY bad when you get it), I still remembered to tell her "Thank you" when it was all over.
Then she cried...I just don't understand adults...
After my shot, we got to go visit the Day Hospital on the Heme Onc floor. Its a special place for
people who have to finish a treatment, but don't have to stay overnight in the hospital. It was
nice to visit J-5. I got to see one of my favorite nurses! She almost didn't recognize me
because I was walking, and I've grown almost two inches!! She said I was really pretty - I like
that...
I also got to see one of my (and my Mommy's) best cancer friends. Abby is about 5 months
older than me, and has neuro-fibroblastoma tumors. She was in because she has an infection
in her port, I felt sorry for her. But, boy did I want her to wake up and play! She's really nice.
Her Mommy gave me a sucker, so I wouldn't be sad that Abby was asleep. You know what? A
sucker fixes a whole lot. People should remember that.
I got to walk around and visit all of my favorite pictures in the hallways. They have the neatest
HUGE painting of animals of all kinds. I got to roar with lions, squeak with mice, hop with
bunnies - boy, I like that picture! In my special room, I laid back and watched cartoons and
Mommy let me eat lots of dried cranberries, fruit loops and drink as much "fruity water" as I
wanted. It was a pretty nice day (except for the stupid shot).
Tuesday wasn't as nice of a day. I woke up Tuesday with a really sore bummy. Every time I
had to go potty, it hurt like crazy. I don't like being mean, but I did smack Mommy when she
changed my diaper - it hurt! Mommy was worried, so she called and talked to my doctor. After
she talked to them, she turned into crazy lady. She ran around the house, threw lots of stuff
into bags, and even swiped some of my favorite toys for this one bag. I don't know what her
problem was, I thought she was going a little nutty. Then Daddy surprised me and came home
early. I thought we were going to get to play, but no - Mommy loaded me up and took me back
to the stupid hospital. Bleck.
Worst part is, you won't believe what they did to me! OK, this is a little embarassing... They
put a bag on my bum. Yep, not kidding. They glued a bag right on my bum! Same icky, sticky
stuff that holds the bandage over my port when I'm there. Super bleck - I hate that sticky stuff!
And they really put it in a not-friendly-place this time.
I did get to meet a new doctor though. She was really nice. My Diane wasn't there, but lots of
nice nurses were. And the new doctor was nice. She said she was sorry that she made me
cry. I told her OK - I think she liked me even though I cried. These people are really nice,
even when they do weird stuff like bagging up your bum.
I got lots of good play time with Mommy again on Tuesday, even though I didn't feel so good.
In fact, the whole day wasn't too bad, until they took that bag off. WOW - that was awful!!!!!
You just should never have icky, sticky stuff, ripped off from down there! Mommy seemed
surprised that we got to leave the hospital and go home. I wasn't surprised, I was darn happy.
Mommy must have been really happy too. She stopped at the gift shop and got me a great
new kitty. She said that I deserved an "owie toy". Usually, the nurses give them to you after
big owies like spinal taps and bone marrows - but Mommy said she thought this was a giant
owie and I deserved the kitty. Hey, I'm not complaining.
I got to rest Wednesday, no hospital! Yippee! I needed the rest, I feel pretty ookie all the time
right now. This part of chemo is the pits. My hair is falling out again. Sometimes, my head
hurts so bad, I just pull some hair out to try to make it stop. (Mommy freaks out when I do that,
so I try not to do it) My fingers and toes hurt all the time, so I chew on them, to try to make it go
away. Diane told Mommy that it feels like they are "asleep" - I don't get that. All I know is they
hurt like crazy. I also feel woogy - I throw up a lot right now. Its pretty awful, I eat something I
like, I throw it all up - and then I have to eat it again. It sounds like a bonus, but its not.
I get frustrated a lot right now because I'm always dropping things and I fall over all the time.
Stupid Vincristine, it makes me weird. I have trouble balancing, and my grip isn't so good. It
makes me mad when I'm trying to carry something I like. It also makes it really easy for Prince
to knock me over! He kisses me after he bonks me, so its not all bad. Since I was also taking
lots of steroids all last week, I also wasn't sleeping very well. I got to stop those on Thursday,
so the weekend was a little better.
Thursday was pretty normal. I went to clinic like usual. Ryan checked me in and did my
temperature, blood pressure, weight and height. Guess what? He said I'm so grown up that I
could stand on the scale, instead of using the baby scale. I like it when he says I'm a big girl! I
smiled as big as I could figure out how. He said I was so big, that I could even use the wall
guide to measure me! I felt so tall. I really like Ryan. I love waving at him, and giving him toys.
I'm not brave enough to hug him yet, but Ryan always asks. Do you know he used to even
crawl on the ground to come say "Hi" to me? He wants to be my friend and tries very hard not
to scare me, ever. Mommy thinks he's great too.
Accessing my port went very smoothly. The nurse was new, but she was nice. I don't
remember my exam that day. Mommy says I slept right through it. She says she and Dr.
Ranalli whispered so that I could keep snoozing. He's a really nice doctor. He loves all of my
silly hats and outfits. He always takes me to show me off when I look cute. If Diane is doing my
exam, she goes and gets him so he can tell me how adorable I am. I like that! Mommy said he
showed her pictures of his dogs, because they talked about our dogs. She really likes him too.
The best part of Thursday is that I made new friends. I met Finn, he's 6 months older than me
(I love older men...), and has ALL too. Finn was diagnosed the same age I was! Finn's been
at this 6 months longer than me, so his hair is starting to grow back now. Nice to know I won't
be bald forever. Finn shared pretzels with me. He played a lot of tag and hide-and-go-seek
with Ryan, so we didn't play too much, but I thought he was neat. I also met a girl who was 8
and was a new patient. She has a little brother who is three, so she was really nice to me. We
played cars, and she let me sit on her lap. Her Mommy was very sad, she just found out she
had cancer the day before. My Mommy said she'll be alright, and that we would be her friend,
if she comes on Thursdays. I hope so! She was fun.
It was really crazy in clinic on Thursday, so I had to wait a very long time. I waited long after my
friends left. That's OK though, I got to play with some dolls all by myself. I don't know why, but
Ryan and Mommy laughed a lot when I used baskets to make beds for Ken and a Brat doll. I
cleared shelves to make bedrooms, and put each basket in its own bedroom. I don't see
what's funny about that. Then Ryan found me a Barbie doll. I didn't have any more baskets,
so I shoved her until she fit with Ken, in his basket. Then, I didn't want the Brat to be lonely, so
I shoved her in there too. I really don't know why they snickered so much...
Before I could get my medicine, they made me take some anti-upset tummy stuff. It tastes
horrible! But, I'm a pro at this, so I took it like a champ. Ryan took me to a special place and
even let me throw the syringe away all by myself! The little flippie door was really cool. He
gave me a big high-five. I wanted to high-five other people, but the waiting room was empty. I
had to settle on high-fiving the receptionist. Its OK, she's nice too.
Eventually, it was my turn to get my infusion. My infusions were pretty fast, only 18 minutes.
The one new drug, doxorubicin, is a very pretty red color. I thought it was neat to watch. I liked
my nurse, she was nice to me. Basically, I just watched Rugrats and waited until I could go
home. It was all pretty smooth. The best part is, the nurse let me put my band-aid on my
Mommy's arm. I don't get them on my chest anymore, they give me an owie rash. But it was
tons of fun to stick it to Mommy! Hee hee hee.
So there you go, that was my week. I spent the weekend kind of ookie again. I've been telling
Mommy and Daddy about my owie head and owie hands and feet. I guess they can't fix it,
because they usually just kiss me, say they are sorry - and its still there. I threw up on Daddy,
but he didn't mind. He said he was sorry. Go figure that! I don't have to take steroids this
week, that's nice. I am still taking extra antibiotics because of my bum, but they're not too bad.
Heck, I'm so used to nasty stuff, its just normal for me now.
Sorry this is so long, I had lots of stuff to tell you about. And, Mommy is sending you some new
pictures. I wore my big fuzzy hat to chemo again, so there is a picture of me. Also, there are
some pictures that we got back from Sears this weekend. I had a few days of good numbers,
right before Valentine's. Mommy jumped at the chance, and got my last pictures done with my
"old hair". I wonder what color it will be when it grows back???
OK, I have cats to torture, sissies to bug, and a Mommy to poke. I've got a full to-do list, I'd
best get at it!
I love all of you! I hope someday, I'll get a hug from each of you in person!
Love,
Avalon
