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GRANDADDY CHECKS OUT ST. JUDE |
by John Niolon |
I wrote this article several years ago when my grandson was a patient at St.
Jude.. he had a cancerous brain tumor that was removed at a hospital in Mobile… he then
went to St. Jude to receive his follow up radiation and chemotherapy. This is a story of a grandparent’s visit to the
hospital. The
first things you notice at St. Jude are wagons and tricycles. You start noticing them when
you turn in the gate and from that point forward, you never stop seeing them. There are
hundreds, if not thousands of them. Some are empty..left in the parking lot after a long
day with some combination of radiation, chemo and physical therapy at St. Jude . The
wagons are emptied as the kids are loaded in the cars or shuttles by Mom and Dad for the
return trip to Ronald McDonald or Target House. Magically the next morning the wagons and
trikes are lined up neatly at the door for another long day. Each wagon is brightly
painted and many are signed by their passengers. All
have a plaque on the back that quietly states that this wagon was donated by…or in
memory of Jimmy or Stacy or Dominique or one of a hundred other names..one on each wagon. I
followed my daughter, son-in-law and precious grandson Cole through a few days of what has
become their life routine at least for the next six months or so. As you enter the
building your overwhelmed with color and shape and movement.
The walls are covered literally with painting and murals. Zoo scenes with nearly life sized elephants
and bears. Monkeys swing from a painted
tree and a huge purple and green snake smiles down while coiled around another limb on the
monkey tree. A turn of the corner and you see
a hundred feet of white picket fence with flowers as large as your head peeking between
the pickets. A smiling sun six feet across
warms you from the opposite wall. On one wall of a clinic is a world map with lettering
above it that says where we are from. There
is at least one name by every populated continent and wiggly arrows that point to their
country or state or region. This
is without a doubt the most cheerful place I’ve been in a long time, and considering
what these walls witness every day, that is quite a statement. The halls are alive with
movement... doctors, nurses, technicians, parents, kids and school tours all team
together.. with a destination, all with a schedule. The
day starts with registration. You sign in and
they verify your numbers. Cole is four
years old and can readily tell the registration nurse his 6 digit number by heart as he
holds up his pant leg to have his new daily bracelet (or anklet) attached. Then the
printer hums and out pops his schedule. The
schedule is your roadmap for the day. Every parent has one close at hand usually IN hand.
The schedule lists the appointments for the day. Anywhere
from one to five or six, depending on what treatment is needed today and who needs to be
seen by whom. Now
of course, the idea of a schedule is to have certain things happen at certain times.. but
this is a hospital… a hospital for sick children and things happen. Sedation takes longer to wear off. Exams take a little longer than expected
because someone is crying or sad or just having a bad day and the staff patiently does
what has to be done no matter how long it takes, so, sometimes you wait. I’m
not implying that things aren’t done right. This hospital is efficient and precise and
well operated…it has to be to treat several thousand kids a year. It’s operating budget is one million
dollars a day.. 365 million a year, and
the majority of it is donated. A family
is never charged more than their insurance will pay and if they have no insurance there is
no charge.. nothing ! it’s all free. The same is true for the Memphis Grizzly
house, the Ronald McDonald and the Target houses that give the families a place to stay
for months at a time. The
first day I witnessed all this was Cole’s first day of 3d conformal radiation. He had
finished 13 sessions of general cranial/spinal radiation.
This new round is a super whiz-bang kind of pinpoint radiation therapy
that concentrates only on the tumor bed and one centimeter around it. Cole’s was at the
base of his brain above the stem and three beams focused at this precise point. Little tattoos behind each ear and one from
the very back (or top since he’s laying face down) mark the path for the beams. This
procedure should only take about 30 minutes, but the first time takes longer with new
x-rays and set up and procedures to be followed. It
took well over an hour but Cole was sedated and had no idea about any of this. Mom, Dad, Grammy and me waited and watched the
clock and the others in the waiting area. This
waiting and watching was the best teacher I could have had about St. Jude’s and what
goes on inside the brightly colored walls. Tours
will give you the once over and impress you with the physical plant, but sitting and
watching the staff, the parents and the kids gives you the real story. My favorite hobby is watching people….you
can learn so much just sitting quietly and looking around. It
doesn’t take long to see this group of people who minister to these children (and their
families) are professional. They are
efficient, they are confident and they are well qualified to handle whatever may come
their way. Each
patient follows his schedule and their chart follows them.
Cole has been here about three weeks and his chart fills a red three
ring binder nearly four inches thick. Every
procedure, medication, order, assessment, test result resides in that binder and it’s
Cole’s history and probably a lot of his future here at the hospital. The movement of paperwork is as efficient as
the staff. There were very few times we
had to wait on his chart to catch up with us as we traveled around the facility. The
one thing that impressed me about St. Jude’s staff was their attitude toward and
attention to the children. Doctors,
nurses and staff will stop in the hall and talk to families, play with the kids, make them
laugh and smile and more times than not have a toy or trinket to give them. Everyone there is totally at ease with the
kids and the kids are with them.. I’ve never
seen a hospital where a child can walk down the hall and high five a doctor or nurse,
shout down the hall to someone just to say hi and wave, it’s truly a remarkable sight. I’ve never seen so much hugging in a
hospital ! I’ve never seen nurses and technicians that know so many children by name. A
little while in the waiting room listening to parents and watching the kids makes you
realize that while everyone tries to be happy and forces a smile they’re dealing with
some serious life and death situations here. Then
when you consider the number of children in that building, all with some form of pediatric
cancer, well, the enormity of it is overwhelming. You’re almost brought to tears
watching a young mother cradle her infant daughter waiting for radiation time…staring
into space, rocking slowly comforting her baby. There
is a look that you recognize with little practice. It’s
more intense than most expressions you see in a crowd.
It’s a blank emotionless expression but in their eyes you can see a
fear..no, it’s more than a fear, it’s a controlled terror. It’s held tightly inside but it shows in
their eyes. You can see the mother searching for a reason, searching for an answer,
searching for her daughter’s future. You
can see it in an older mother who’s brought her high school aged daughter. She’s been diagnosed with Hodgkin’s Lymphoma.
She will start her schedule today..with radiation.
It’s easy to see in the eyes of a young mother with a four
year old in treatment while she tries to entertain her eight year old in the waiting room. The
parents sit in small groups while waiting for their child’s treatment to end. They talk quietly about where they are from and how
they got there and how long they have to go. Uncommon
words are heard in their conversations… words like medullo, pnet, ganglio and lymphoma. Words that these parents had probably never
heard a year ago, now they know them..now they understand what they mean, especially what
they mean to their children. It seems that the conversations never properly end. Someone’s name is called and they have to
gather up the toys and sweaters and wagons and head off to the next line on the sheet of
paper. Quick goodbyes and sometimes a hug, an
encouraging phrase and an offer of prayers are said and they part ways..but not for long,
tomorrow brings a new schedule and familiar faces back together again. The
kids are amazing. The veterans are busy playing with toys or puzzles or making pictures
with the baskets of crayons that are everywhere. Some
are riding their trikes down the hall and others are just bored with it all and sit
quietly reading a book or talking to a parent…playing with a game boy or Nintendo or
listening through headphones to music on their mp3 players. Another sure sign of a veteran
is the hair…or lack of hair. Beautiful
little faces smiling at you from under a completely hairless head. Some wear bold colorful hats or toboggans while
others just let it all hang out not giving a thought to it. My daughter told me of one
young girl..a teenager who had a beautiful head of hair and in anticipation of her
treatment, shaved it off completely. And
as the radiation took the rest, she painted her head !!
The nurses and staff couldn’t wait to see what design she might
bring in that day. Decorated for holidays or just random shapes and colors. This young lady knew what to do with lemons !! Some of us vain adults could learn a lesson here. The
new kids are apprehensive and stick close to their parents.. close as their skin. They watch everyone with scrubs as they pass and
wonder what will happen to them. But it doesn’t
take long before they are in the routine and feel safe and secure there. Our young Cole,
who once was terrified every time a white coat came in the room knowing it meant pain, the
needle sticks and poking and prodding…now refers to his nurses and technicians as his
girlfriends. He has seven now and knows
each one by name. He will also do things
for them that he would never do for his parents or even his granddaddy ! One more trip across the room with his walker
for Ms. Kelly (physical therapy) he does with a smile on his face. Blood pressure cuffs and tongue depressors
with Ms Valerie (nurse practitioner) no
fear !! This young battle scarred (big scar!!
33 stitches up the back of his head !) veteran
knows the drill !! Some
of the kids in the Chemo part of their routine are just too tired and too sick to play..
the small ones lay curled up in their wagons, resting or sleeping with pillows and blanket
pallets to cushion them. Some lay on the
couches with their heads in Mom’s lap as she strokes them and comforts them as best she
can. As
the day moves ahead, you sneak in a lunch break between appointments.. Usually all you have time for is a trip to
the cafeteria for a quick sandwich. It’s
also decorated with bright shapes and colors and offers a wide variety of dishes, none of
which really resemble hospital food. A
full breakfast can be had or a donut or pastry in the morning. Deli sandwiches made on the
spot or a meat and three for lunch or dinner. A respectable cheeseburger and fries is
always available or Starbucks coffee and freshly made cookies. And four can eat for about the price of two in the
outside world. The staff eat right next to or
with the patients, no separate doctors dining room as far as I could tell. Tricycles scoot through the tables and lots
of kids have their lunch in their wagon. Normally
( for Cole anyway) the radiation session is early in the morning, usually starting before
8 am. After he’s fully recovered and gotten rid of the grumpys, it’s down the hall to
either physical or occupational therapy. You
might think occupational what occupational therapy could a four year old need Well his major occupation is dressing, eating
and using his hands. The surgery left him weak
on his whole left side and at the beginning he couldn’t use his left arm at all. He’s gotten much stronger but still wants
to use his right hand only. A visit to one of
his girlfriends for a session has him using that arm more and to him it’s all a game.
Amanda (occupational therapy tech) uses things like building blocks and picking up things
with his right hand, passing it to the left then putting it in a box…simple games to
Cole but he’s building back the use of his left arm and hand while playing. Today was finger painting in the Picasso
style ..very abstract…but excellent
according to Granddaddy. Hi fives and
hugs for his girlfriend and we’re off to p.t. Physical
Therapy is in another area and you work
on things like walking, balance and hand/eye coordination.
A big open room is filled with lots of equipment from tumbling mats to
exercise equipment and treadmills. One
patient, probably ten or twelve is playing
floor hockey with a technician (and beating her).
He’s had a surgery similar to Cole’s the scar gives it away
and the game is strengthening his legs and working on his balance and coordination. Today Cole is playing a game where he takes a
stuffed animal from a bucket and walks over to a net and throws it in. But, he has to use his scooter (actually his
miniature walker) to help him walk. It’s
teaching him first how to maneuver the walker and of course working on the strength in his
left leg. Cole loves playing with this
girlfriend, Ms Kelly and she really seems to enjoy working with him. She has to also teach him how to get up from
a seated position on the floor.. it seems easy to think about it but things are difficult
when you’re weak and balance eludes you. Sometimes
it takes several attempts and he gets frustrated, but she’s patient and encouraging and
he finally does it. It just about wipes him
out and they take a break to rest on the mats After
the break they go fishing with magnetic tipped fishing poles for plastic fish with the
same type tip in the nose. This is strengthening his left arm and tuning his coordination. There
are three patients in the room at one time and each one has one or two technicians working
with them, depending on their level of need. The
techs make it all a game and fun for the kids and each one truly seems to enjoy the kids
and works hard with them for every little bit of progress.
At the end of the session, Cole gives Ms. Kelly an Easter cookie that
his Grammy made, hugs and hi-fives are exchanged and we’re done with therapy and only
have a visit with the doctor and nurse practitioner to finish up for the day. We
have a little time to kill and we continue with our tour.
We walk through the clinic areas where the kids wait for their
treatments. Large play areas with huge fish
tanks and tables for coloring and computers with games are there to entertain them while
they wait, and in every area (believe it or not) comfortable furniture for the parents ! The hospital has a very good library with lots of
research material for the parents and families to use as well as computers and printers
for Internet access. The hospital is divided
into sections. The hard tumor patients
use one set of clinics and doctors and the leukemia patients
use another. Their treatments are very
different and the kids with leukemia have different rules and procedures they have to
follow. Infection is a BIG thing on that
side since the kids have such low immune systems. Lots
of them can mix with the others but have to wear a surgical mask to help keep the germs at
bay. The
visit with the doctor is mainly to review and to discuss Cole’s problems with
medication. The surgery left him with a very
sensitive gag reflex and anything that taste bad or even causes him to burp will sometimes
trigger it and up comes everything. We
have a Catch 22 with meds. The medicine
is to prevent nausea and vomiting but it taste so bad that it makes him do that very
thing.. They decide that they can inject
his meds straight into his central line and bypass the oral part. This seems to work better but Cole doesn’t
particularly like it.. He’s still
apprehensive about them messin with the central line. A
central line is a special intravenous line, called an IV. This type of IV is inserted
through the chest and threaded into one of the large veins that lie close to the heart. A
central line has multiple ports that can be used to: draw blood, inject fluids, and monitor central venous
blood pressure. The good part is that it means
no more needles in Cole’s arms, hands or feet. The
bad news is that it’s a surgical procedure… hurts in the beginning and has to have
daily care to prevent contamination and infection. It’s
sutured into his chest and has two tubes that come out of the catheter.. all of this is
covered with a sterile dressing and must be cleaned with a very exact procedure daily. It doesn’t hurt Cole now, (other than
pulling the tape off !!) but he remembers when it did !.
They let him help by pushing the plungers on the syringes to
clean it so he’s involved and a big boy by helping.
Anything that will make it easier for him. Again
the staff and doctors are very persistent about making all the procedures as pain free and
easy on the kids as possible. It is so good to see them work with the children. It’s very VERY different from what he’s
seen in other hospitals. I won’t say anymore
about that. This hospital has spent
decades perfecting their treatments and they
have a success rate in the high 80 percentile. When
they started…it was 4%!! But while they are a research hospital and must follow strict
guidelines and protocols, they never forget they are treating children and the well being
and comfort level of the children is a priority for everyone there, and it shows. Finally
the day is finished and we can go home, but not before we stop to see the sweet lady at
the reception desk on the way out, she has a Hot Wheel car and she tells Cole that she’s
been waiting all day to see you and give you this.Ԯ Just one more
thing they do to make the little ones feel special. (this lady must
have a wheelbarrow full of Hot Wheels in the closet )
It’s mid afternoon and the rest of the day and evening are free to
do anything we want. Might be a trip to
the zoo or maybe just to Wal-Mart for more toys…we always need more toys !! Most times we get him to take a nap
with no problem, his routine is tiring…it was tiring for Granddaddy !! Does
it sound like I like St. Jude ? There
hasn’t been one thing about this organization that I’ve been disappointed about,
except of course the reason that WE HAVE TO BE HERE !!!
The same is true of the Memphis Grizzly house and the Ronald
McDonald House. They are all top drawer
operations that make a very very difficult situation just about as good as it can be
considering the circumstances. I’ll
make a suggestion to you…if you have a little charity money you need to donate or want
to change up who gets what, or you know an organization that needs a charity to support…
these organizations need your contributions. They
do good things with your money. What
could be better than helping a sick child
You can research them on the Internet at the addresses below if
you’re interested. Visit
St. Jude’s the web sites… their site is complete and
gives you a very good view of the hospital, what it does and how it
does it. If
you want to find ways to help … look here http://www.stjude.org/waystohelp Ronald
McDonald house is an organization that provides housing for families in treatment… http://www.rmhc-memphis.org/donatenow Target
House provides long term housing for families at St. Jude Memphis
Grizzlies House houses families for short term visits 1-7 days. all
of these facilities are charitable operations and depend on donation. Find one that you like and give to them… your
dollars couldn’t be spent in a better place. They all supply safe comfortable
accommodations and a strong support system for their families. |