My life has changed. I used to spend my days playing with my
brother and sister. We painted, played
playdoh, and did school with mom. When
we went outside we would jump on the trampoline, chasing each other all around
playing tag. I loved to get in the big blue swing under the shade tree. Brother would push me high, then run
underneath and try to swat me as I soared over his head. I was so glad my sister held on to me tightly. We went all the way up high kicking the tree
branches far above our heads.
Now my mommy and daddy brought my bear, monkey,
pink blankie, and me to this huge hospital.
We are staying the night, but I don’t know why. There are so many people that come in and out
of my room. Most of them I don’t know,
but both of my grandmas came to see me.
Daddy laid me in this big bed when we got here. It’s pretty neat. It has buttons that make it go really high or
really low. I like to put the back up to
lean on and sometimes I even climb up it and slide down. The nurse lady gave me a special button that
I can push and she will come to my room.
I made some new friends. There is a lady who comes into my room with a
bag on her shoulder. It has lots of neat
stuff inside. She is so fun to play with,
but I have noticed she seems to come here anytime something painful is happening. The pain makes me cry, but then she will get
her bubbles out and help me laugh again.
My nurses are really fun. They come in and play with me when they aren’t
busy. They let me get down under their
desk when I play hide and go seek with my daddy in the hallways. They also bring yucky medicine in that I don’t
like. I spit it out a lot. Every few hours they make me have a leg hug
and put a glowing red light on my finger.
They let me use the thermometer in my ear all by myself. I get grumpy if they come too often,
especially the one that shows up when I am sleeping. He wants me to get out of my warm bed and
stand on that metal thing with numbers.
My mommy told him no, that he would need to come back in the daytime. I
was glad he stopped waking us up!
We have been here a lot of days now. I feel so bad! I mainly stay in bed and watch movies or play
with my toys. Mommy tried to get me to
take a walk, but I cried. I don’t want
to go anywhere. One morning I went down
the elevator to a funny room where everybody had their hair covered in blue hats
and wore blue clothes. It was cold in
there! I started to get sleepy, so I
took a nap. When I woke up my belly hurt
really bad. I had a big bandage on my
tummy, two on my back, and some kind of cord hanging out of my chest. It all hurts!
Last night, my mommy got really worried. I don’t know why but she went and got a
doctor who pushed on my tummy Band-Aid.
It started getting red and then blood was spraying out all over my blankie. Nurses and doctors started running around
trying to clean it up. We took my bed
and went down the elevator to a new room with big letters on the door. I can’t read yet, but I think they said
P.I.C.U. This new room was noisy and lit
up all night long. There was no place
for both mommy and daddy to rest. They
would not let me eat anything even though I kept begging for a burrito. I heard
the doctor say we might go into surgery.
I wonder what that means?
The next morning, they changed my tummy bandage,
and it was not red. They let my mommy
get me out of bed and hold me. We rocked
in a chair for a little while then daddy brought me a burrito for
breakfast. I was so glad to eat finally.
After I ate we took my bed back up the elevator
to my room on the 10th floor.
My clothes and toys were there waiting for me. Someone sent me a huge balloon with Minnie
Mouse on it. I had so much fun pulling
it down to the bed then letting it float to the ceiling. Lots of people are coming now bringing us
gifts and food, but most of them cry when they talk to mommy and daddy. I wonder why everyone is so sad?
I learned the name of those bags that hang on
my IV pole today. The nurse called them
chemo. They have a rule that I can’t go
out of my room with a chemo bag hanging, but I don’t care because I don’t feel
good enough to leave my bed anyway.
We have been here so long now. Daddy and I celebrated 4th of July
together while mommy went home today.
Some nice lady bought a red, white, and blue basket with a pinwheel in
it. I had fun blowing that around. There were also funny candies that popped
when I put them on my tongue. They
surprised me and I didn’t like them much.
My bear wore the holiday hat from the basket, and I got glow sticks to
play with in bed.
Today my mommy tried to tell me we were going
home. I don’t even know what she
means. Isn’t this our new home? We have stayed so long I don’t remember where
we lived before here. I cried and told
her no that I would not get up to go anywhere.
Then I saw her get out my pink and orange shoes. Those are the shoes I wear when I go out to
my swing… oh I remember! My swing under
the tree. It’s been so long since I have
played on it. I tried to stand and walk
but I felt so weak that my big brother carried me to the van while mommy and
daddy brought our suitcases.
It took a long time to get home. When we pulled into the driveway I saw my
swing and asked daddy to push me on it.
It felt so good to be back to my life {before cancer}.
****This is written from the perspective of Amelia
“Millie” as two-year-old the the week of her first hospital admission and chemotherapy
treatment. She had her Broviac placed in
her chest, a bone marrow biopsy, and a liver biopsy that later bled out sending
her into the PICU overnight. Diagnosed with stage 4 Neuroblastoma she
would have many more hospital admissions ahead of her. This one was by far her most confusing
admission. As her parents, I am not sure that we ever thought to say, “you are sick,
but you will go back to your house when you feel better.”****
Spreading awareness for the sake of the children.
~Because of Millie~
#MoreThen4
#MilliesVoiceSeries
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