03/04/08- Joshua's is finally fever
free, and today was his first day back at school. Today at recess
Josh slipped on a patch of ice and hit his head, no stitches needed
Thank God. The back of his head is very sore.
02/29/08-
Joshua is still running low grade fevers, but we think it's viral.
He was tested for strep and influenza, both were negative. If he
should spike a fever again, we will do some blood work. His
brother is on 60mg of Prednisone for the next 5 days.
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.
There are good things that
cancer can bring to your life. There is such a new
understanding of family and what is important in life.
Never put off what you can do today until tomorrow!
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.
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!!
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"
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.
Did you know... over 12,400
children (in the United States) are diagnosed with cancer each
year? That's a classroom full of children every single day, year
after year
Did you know... approximately one in 330 young people will be
diagnosed with cancer by age 20?
Did you know... although it is unlikely that your child will
develop cancer, as a parent, you need to be aware of the
symptoms of childhood cancer. Observe your child for any sudden,
persistent changes in health or behavior as listed in these
"Signs of Childhood Cancer":
Continued,
unexplained weight loss
Headaches, often with vomiting, at night or early morning
Increased swelling or persistent pain in bones, joints, back, or
legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or
armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent fevers of unknown origin
Did you know... since most of the symptoms of cancer can also be
attributed to benign conditions, the diagnosis of cancer can be
a long process. As a parent, you must trust your own instinct
and work as a team with your doctor, using your knowledge of
your child and your doctor's knowledge of medicine to protect
your child's health.
Did you know... that about 4,000 children die from cancer each
year? That's 11 children every single day, every single year.
Did you know... when a child is diagnosed with cancer, the
entire family is affected? Treatment is often lengthy, and
always time-consuming. Some diagnoses are treated outpatient for
over three years; others require lengthy inpatient stays.
Did you know... siblings of children with cancer face an entire
set of emotional challenges, from wondering if they are to blame
for their sibling's diagnosis, to feelings of jealousy for all
the attention and gifts the child with cancer is receiving, to
feeling abandoned by their parents as the parents (necessarily
and expectedly) focus their time and energy on the child in
treatment.
Did you know... cancer is NOT contagious. Support (emotional,
physical, maybe even financial) of the family IS contagious --
and very much needed from everyone -- from friends to neighbors
to entire communities. When you know a child who is diagnosed
with cancer, be the first one to offer support -- others will
follow.
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
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.
