September 26, 2008

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