Joshua was diagnosed with Pre-B Cell Acute
Lymphoblastic Leukemia with T-AML on June 29th, 2002 at the age of 3 years 6
months. Please sign his guest book at the bottom of this page to let him
know you are thinking about him. He has shown us all the true meaning of
courage.
Cancer was
the last thing I expected that day when I took Joshua to the ER
because he didn't eat his breakfast. He was a normal, active little
boy - The last thing I expected was cancer. So needless to say, our
family took the news hard. We were shocked and completely devastated.
This day, June 29, 2002, changed our whole world. I went into the
doctor's office that day as a mom of 5 children. I came out of that
office as a mom of a child with cancer. I went in that office worrying
about cleaning my house and came out of that office worrying about
losing my son. I went into that office naive, carefree and happy and
came out of that office scared, worried and sad. Life is hard and can
change in an instant - I learned this lesson the hard way - and it is
a lesson I will never forget!
Truly - our life was never the same after Joshua was diagnosed and
Jun. 29th was the turning point . . . the day it all changed. Life was
never the same again . . . but neither were we. Our life changed for
the worse - but we have definitely changed for the better. We are a
little more compassionate. A little more grateful. We play a little
more, clean a little less. We don't sweat the small stuff. We love
more, hug more, pray more. We laugh more and cry more. We know more
about childhood cancer and raise more awareness! We have a better
sense of what is important in life . . . it's not the new house or the
new car. It's God, family and spending time together that is
important.
My Beautiful Son
I watch you playing, Without a
care. It's hard to believe the cancer is there. You
look so bright, So happy and well. If someone new met
you, They couldn't tell. Your strength is amazing, Your
courage so strong. You've fought this disease So well
for so long. It's from your strength, that I draw
mine. I know you will come through this, It'll just
take time. Carry on that smile, and I will too.
Through the hard times I'll carry you. You are my
world, The air that I breathe, I know in my heart you'll
never leave. Keep strong my love, The battle has begun,
But with your strength, It will be won.
You know you're the parent of a kid with cancer when....
You carry a tube of Emla in your purse
instead a tube of lipstick
Kids with hair look kind of strange to
you
You can sleep anywhere, and anything
that reclines more than 15 degrees looks "comfy"
Your spouse asks what that sexy perfume
is, and it's Betadine
You don't realize the sharps container
is on the kitchen table until half way through dinner
You enjoy the drive at 3:00am to
emergency because there aren't any other cars on the freeway
You can name all the equipment used on
ER
You can dx the patients on ER before the
Docs do
You hear a truck backing up and you
think the IV is beeping
You are so proud when your baby finally
gets hair (and he is 8)!
Your new bathroom trash can has
"Hazardous Waste" written on it (recycled sharps container)
You can maneuver a double pole with six
boxes and a kid riding, on a tour of the hospital, and make it
back to the room before the low-battery alarm sounds and the kid
has to pee
You realize you've been home two weeks,
and you're still measuring I's and O's
The nurses stop responding to the IV
alarm, knowing you'll fix it anyway
Your child asks what's for dinner, and
you automatically reach for the bag of hyperal
Your 2-year-old knows where all of the
medical equipment goes, and how to use it
Your child's first word is a medical
term
You keep a bag pack
ed
at all times like your 9 1/2 months pregnant
You can eat with one hand while you hold
the barf bucket with the other
Your child's bedroom looks like a Toys R
Us® store
You ask your CPA if bribe toys are tax
deductible
You correct the doctors spelling on the
chemo meds
You can read the doctors prescription
word for word, and are asked to decipher it by the pharmacist
You know medical terminology better than
your family practitioner
There are 4 new Mercedes in the doctors'
parking lot due to your child's payments
The pharmacy sends your family Christmas
presents
You get excited when there is a 15% off
sale at the pharmacy
The local needle program comes to your
door
You have a syringe in your purse and
you're not a diabetic
You have more meds in your cupboard than
food
You can read your son's chart better
than his nurse
You look like you're tan but it's really
Betadine stains
You and your hubby get matching stress
tattoos for fun
You start teaching your daughter the
parts of her body, and you
point to her chest, and she says that's her port
None of the security guards on the
pediatric floor ask for your ID anymore, and you're on first-name
basis with the operating room staff
Medical students ask to borrow your
notes
Your toddler refuses to sit on Santa's
lap because he's too germy from all the other kids
You wrap presents and packages with
medical tape
Your main source of nutrition comes from
aspirin
Your child is more familiar with CT scan
& bone scan pictures than the portrait studio!!!
When you use the term six-pack, you are
talking about platelets, not Budweiser®
Your child is going on a field trip and
wants to know if you have signed his "remission" slip
Your child can easily pronounce "Neuroblastoma,"
"chemotherapy" and "coagulate," but has trouble pronouncing the
state you live in
Your child uses Legos® to
build "MRI" machines
You don't have to ask, "What's that
mean" to the previous 44 items
You hear yourself say the words, "I'll
buy you anything you want" at least twice a month
You know you are the
friend
of a family with a child with cancer when you call to check the
chemo schedule and ask, "How will her counts be on, say, the
11th?" before you schedule a birthday party
You have been asked by more than 25
friends and family members, "So, when is his next treatment?"
Your four year old's critique of the
medical student's examination
skills is the same as the supervising physician's
A younger sibling identifies a nipple as
"my port site"
Your daughter has more Beanie Babies in
her room than the specialty store in the mall
You really think this list is funny,
when most normal people either don't get it or start to cry!
When your seven year old begins to sound
like Doogie Howser, MD
You give out barf buckets as birthday
party favors
When a Raio Flyer® wagon is
considered an essential transportation device
When you walk down the hall in your
house holding your baby and feel odd because you're not trailing
an IV pole with the other hand
When the siblings want to know what the
child's counts are to see if they can go inside and eat at
McDonald's
You think nothing of taking your 3 year
old into a department store in his underwear because he has thrown
up on his last set of clothes and you are an hour away from home
and have an important doctor's appointment
Six months after
treatment ends and the hair starts to grow back someone stops you
in the grocery store and says, "I just love her haircut. Where did
you get it done ?"
When you send copies of this list to all
your cancer-parent friends
When your idea of funny is to ask,
"Where's your line?" and then giggle while your toddler takes off
all of her clothes looking for it—even though you know it has just
been removed
You can reset the IV machines overnight,
in your sleep, every 30 minutes without waking up once and still
call it a good nights sleep!!!
You have a kid who did not wake up by 5
AM on Christmas morning
Your kid takes more pills than you
When you say "Get up and smell the
coffee" your kid says "The coffee's going to make me puke"
When your kid asks for a Happy Meal®
you don't say, "Wait until we get home to eat." Rather, "Really?"
(unless of course your kid is on prednisone, when you say, "A
Happy Meal or a Super-Sized Value Meal?")
Your best friend buys you a relaxation
tape for your birthday and you swear it doesn't work right
You cannot try auroma therapy for
yourself because the smells trigger nausea in your kid
Your kid wears out a pair of Nikes®
pushing an IV pole around the hospital during BMT recovery
The "CK" on your tee shirt stands for
Chemo Kid, not Calvin Klein®
You make Jell-O® with
Pedialite®
You draw smily-faces on your isolation
masks
Your kid has received enough get-well
cards to fuel a small bon-fire
Your child receives soooo many toys
while in the hospital that at Christmas time that you can now open
your own toy store
When you are thankful for steroids
because there will not be turkey leftovers after the Thanksgiving
meal
Every little thing can make you cry in a
heartbeat, but this list, on the other hand, has you rolling on
the floor!
When your child is estatic because all
she's getting is counts from her arm and a shot in her leg (Now
that's a good day on the chemo ward!)
You can tell the nurses where their
supplies are
When you can whip up a seven-course meal
in minutes for a six-year old having a prednisone pig out
When your child tackles you screaming,
"I'm starving to death! Why won't you feed me?!" in public and you
can laugh instead of scolding them for their manners
You can make a variety of arts and
crafts out of hospital supplies: isolation masks become turtles
and spinal fluid tubes filled with glitter and baby oil make great
key chains
When the doctor finally enters
the examination room and finds you and your child with latex glove
powder around your mouth from blowing up the gloves
The nurses and techs call out, "see you
next week!" with true joy knowing that you will pass on all the
get-well candy ("No way I can eat that, I'll throw up!") and the
leftover "bribe-sicles" that you couldn't get her to eat
When it's time for your 2 year to have
her vital signs taken and she lifts her arm and sticks out her
leg, without crying or fighting you
Your child names pills after superheros
When you are helping your daughter, the
sibling, pull her hair into a ponytail and she says, "Look at my
forehead, I have great veins there don't I? If I ever need to get
a shot, I could get it there!"
When you have a collection of "throw-up
buckets" in every room of your house!
At dinner your, one son refers to
ketchup as blood and the son with ALL corrects him because blood
is a darker red.
The local small town emergency room
calls you at home and asks what size huber needles to stock in
case they have to access your child's port and then ask if you
could inservice them.
The guys use viale tops instead of poker
chips on poker night
When you think that anything that your
child will eat and keep down is a "nutritious meal", even if it is
chocolate cookies and candy
Your two-year old learns his colors from
all the pills he has to take!
All your body lotion and tattoo bandaids
are gone because the doll needed Emla® too!
When all the other boys in the seventh
grade shave thier heads to look as cool as your son.
When your 6 year old is making
appointments for the nursing staff to do their manicures, because
the love her nail art.
A wing of the pharmacy is now dedicated
to your family.
Training for the New York City Marathon
consists of laps around the Pediatric Oncology Ward with your kid
in her wheel chair.
When your child has done all of the
puzzles in the play room at the hospital so many times that she/he
can now do them in five minutes with the pieces upside down.
Your 2 year old (with a chest port)
points to your left breast and says with confidence to the
oncologist: "That's Mommy's owie!"
Your child has his/her own website to
keep family and friends updated on his/her progress because
calling everyone gets to be too expensive and repeating the report
over and over is tiring.
Our
son Joshua has finished his 3 1/2 years of treatment for ALL.
What began as an inconceivable nightmare on June 29th, 2002
has evolved into a new way of life which is now changing yet
again. My little boy will never (God willing) place another
steroid into his young body and deal
with
its difficult effects. These effects are so hard out in the
real world, at school, playing sports, etc., when you are
raging against the tide. He will no longer receive vincristine,
which causes his coordination to leave him, and to trip and
fall at recess hurting him and his self esteem.
Maybe now when he wakes up in the morning I will look into his
amazing blue eyes instead of first looking at the color of his
lips as a way to check on his hematocrit. All these things
that have become a way of life for our family is coming to a
close. We now need to again learn how to live a life that was
disrupted in such a difficult way.
Never will we forget his suffering, yet never will we forget
how hard
Did you know:
Each day, 46 children are diagnosed with cancer.
Every year 2,300 children and teenagers die from cancer.
(And 1 child is too many!)
1 out of every 330 children in the US develops cancer before age 19.
Cancer remains the number one disease killer of children; more than
genetic abnormalities, cystic fibrosis, and AIDS combined!
American Cancer Society spends less than 1% of their annual revenue on
research for childhood cancers!!
In honor of all the children fighting this disease, please do
something!!
Donate blood.
Register bone marrow.
What's
it like having a child with life threatening illness?
"If I had to describe
the daily stress of Joshua's situation it would be like someone woke
me up and told me one of my children had been killed in a wreck. -
Every day for three years and two months."
"the ultimate pain...dealing with the numbness and shock, followed by
the anger and guilt, the loneliness, the potential loss of future
dreams, overwhelming sadness and heartache... Coping, surviving and
thriving as a family is a never ending struggle filled with questions"
