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Have you seen a gold ribbon? Do you know what it stands for? Have you heard
that September is Childhood Cancer Awareness Month?
I am the mother of a child living with brain cancer, a diffuse intrinsic
pontine glioma. I finished breast cancer treatment on July 10th and flew from
Michigan to West Virginia that day for the funeral of another child...a
beautiful fourteen year old girl who lost her battle with the same rare brain
cancer.
Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish.
According to an article published in the New York Times on September 22, 2008,
as a result of advances in treatment "...98 percent of women with early-stage
[breast] cancers survive at least five years.." Why is this true? Because we
have banded together to raise awareness and funding for our mothers, our
sisters, our aunts, and our daughters. Our children who are living with-and
dying from-cancer desperately need that same attention...and funding.
Helen Jonsen, Forbes.com senior editor and mother of a child who recently
underwent treatment for osteosarcoma, stated in a September 12th article,
"Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk
about it in hushed tones instead of screaming for help. But scream we should."
The article goes on to say, "The funding for pediatric cancer clinical trials
has gone down every year since 2003, and is currently $26.4 million. By
comparison, NCI funding for AIDS research was $254 million in 2006; funding for
breast cancer topped $584 million the same year."
September 13th was our nation's first Childhood Cancer Awareness Day. When I
didn't see anything about it in the news-but I did hear about National Talk Like
a Pirate Day a couple days later, I made some calls to our local news stations.
For some reason I can't get the words of one of the story editors out of my
mind. "So...what's your event?" Later."Pitch me a story."
Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy?
What about the diagnosis of 46 children each and every school day? What about
the fact that only 2/3 of children diagnosed with cancer will survive? We could
move on to funding. Is it newsworthy that for every dollar spent on a patient
with prostate cancer, less than 20 cents is spent on a child with cancer...or
that a patient with breast cancer has triple the research resource allocated to
her when compared to a child?
When I mentioned that Child Cancer Awareness Day--and month--are a national
thing, I was told, 'We put local news first.' Okay...I can handle that. A local
event...I have a list of them.
The shock of a family receiving a breast cancer diagnosis on an October Monday
afternoon, and taking their six-year-old to the Emergency Room on Thursday only
to be told, "There is a large area of swelling in the brainstem; we suspect a
mass." We could always throw in the comic relief of the words, "My mom has a
mass!" coming out of the mouth on that happy little face.
How about a mother leaving the Pediatric Intensive Care Unit late that night to
go home because she knows she needs to get a good night's sleep before attending
an Interdisciplinary Clinic early the next morning...where her own treatment
plan will be recommended?
How about a local pastor, husband, and father being given the specifics of his
son's grim diagnosis and prognosis in one hospital while waiting for news of the
specifics of his wife's diagnosis and prognosis from the Cancer Center at
another hospital?
How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out
of the routine world of reading, writing, arithmetic, language, history and
science as taught to them by Mom at home...and being thrown into a class on
brain anatomy and abnormalities (specifically their little brother's) taught
appropriately and compassionately by an MSU med school professor...who also
happens to be their brother's new oncologist?
How about a six-year-old who finds himself no longer able to play the piano, the
violin, or the cello because he has lost the strength on the left side of his
body?
How about a mother waking up in her child's hospital room one morning,
showering, and walking downstairs for her lumpectomy...while her husband takes
over the duties of hospital parent and waits anxiously in his son's room for
news of his wife's surgery?
Looking for a human interest story? Try the same mother moving back into the
hospital early on a Sunday morning four days later so that her husband, a
pastor, can be in church...only to watch in disbelief as her fun-loving, active
six-year-old--determined not to have an accident--becomes too weak to sit up to
go to the bathroom on a bedside commode. What about the willingness of that
little boy to allow the nurses to help him even with the most private of
things...because he knows his mother is recovering from surgery and he is
concerned for her well-being?
Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two
days after Thanksgiving. A mother sits in a hospital room with her sleeping son.
She ends a phone call because she hears an alarm she has never heard before, an
alarm letting the nurses know that her son's oxygen level is dropping. Soon the
room is full, and it is determined that the child is disoriented, then staring
ahead...completely unresponsive. Somehow everyone moves with the child on that
bed through the hallways to the Pediatric Intensive Care Unit where the
intensivist begins the work of saving a precious life. Aside, the question
parents never want to hear, though one that must be asked, "Given his
prognosis-do you want us to resuscitate him, if necessary?" The father, who has
just arrived, breaks down in the unbelievable stress of the moment. The mother
realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we
know what is happening?' The answer is no. 'Then, yes, we want you to do
everything you can for him.' She stands at the foot of the bed with one of her
son's oncologists. Together, they watch the PICU team work...with
purpose...like a machine. The mother steps outside the room only when the child
is intubated. The drama continues, as the entire department revolves around that
one room...that one little boy.... The eyes of those outside the room...every
nurse, every resident, every doctor...are looking in the same direction. The
parents sign permissions as they are handed to them, and the work goes on.
Everything seems to be happening in slow motion. Finally, the intensivist
approaches. The child is critical, but stable...on life support....
I have just highlighted the first month of our new life in the pediatric cancer
world. I am aware of four precious children who died this week-within 48
hours-as a result of just one type of rare cancerous brain tumor, the same as my
son's. Skyler...Adam...Mara...and Brynne. They belonged to all of us. What
will it take for people outside of the childhood cancer community to notice what
is happening to our children? What will it take for everyone to understand the
urgency of the situation? What will it take for the federal, state and local
governments to finally engage in the fight? Will it be the cancer diagnosis of
a celebrity's child or the child of a political leader? Will it be the death of
child belonging to someone in the media? Will it be your child?
Please, join the effort to raise childhood cancer awareness. Show your support
by wearing a gold ribbon, and by making the issue an important topic of
conversation. Distribute copies of this letter in your place of employment, in
your place of worship, and in your community. Contact government officials, and
express your concern.
A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel.
It didn't take long for pink ribbons to raise breast cancer awareness in the
public eye, and to mobilize our society to action. I hope that in 10 years gold
ribbons will be as common as pink ribbons...and that the survival rates for
pediatric cancers will be comparable to those for breast cancer. With your
help, it will happen...one gold ribbon at a time.
With Hope for Our Children,
Sandy Smith
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer
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