Tuesday, September 30, 2008


We went out to Chilis Monday night to support St Jude and Carter colored a pepper in memory of his brother.

Monday, September 29, 2008

Please read

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 five precious children who died this week--within five days--as a result of just one type of rare cancerous brain tumor, the same as my son's. Skyler...Adam...Mara... Brynne... and Lauren. 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 a 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 Cancerhttp://www.caringbridge/.org/visit/aws

Go to Chili's for dinner tonight!!!

Eat at Chili’s on Monday, Sept. 29, when Chili’s will donate 100 percent of profits from participating restaurant sales to St. Jude.

Tuesday, September 23, 2008

6 months

Today is the 6 month mark since Christian passed away. Its hard to believe that its been that long already, and yet so much has changed since that day. There is not a moment that goes by that im not thinking, missing and wishing he was here with us. 

Life just isnt the same since  you left us my sweet boy. The day you left us was the day that we were born again. There will always be something missing in our lives, we miss seeing that beautiful half smile, and those big brown eyes. But most of all hearing those I love you's and kisses and hugs. 

Carter is taking after you now he likes to wear lipstick...its hard to see but at the same it reminds me of you. 
We love you our sweet Christian and you will never be forgotten.


Tuesday, September 16, 2008

updating

So its been a little while since ive last posted....things here are about the same. We all have been sick off and on. We have been doing home improvement projects to try and stay busy. But in reality no matter how much work you do you never stop thinking about the loss that has happened.
Christians birthday is quickly approaching and to be honest I have no clue how im going to get through it,just thinking about it is making me upset. And thats just the start of the next few months, with his bday, and holidays I just dont know how I/we are going to do it. I know we still have Carter and we will have to be strong and do things for him but I honestly dont know how.

There has been heartache in my old home town, another mother has lost a child it was not from cancer but an accident but its still the same, its very sad to hear about that and im sorry that it happened but now I worry for his mother and how she will do. I know our losses were different but its still the same and so im asking for everyone to say a prayer for the Willis family and that they will make it through this rough time.
You really find out who your true friends are in times like this. And I am so thankful for the ones that I have and I hope they know who im talking about.
I would also like to ask that you would saya prayer for Mary and Alex, they are grandma and son to one of my best friends. Mary is in the hospital and not sure whats wrong exactly and dont know if her heart is strong enough for a sugery. Alex is having some problems and his mom is very worried about him, Also my grandma Bessie has told me that they think she now has a tumor under her eye. I dont know how much more of this cancer crap one person can take.
I guess im done rambling for now......