As many of you know, or don’t, we are approaching our 1 year date of diagnosis.
On October 7, 2007 we were told “a mass is showing in Faith’s brain”. She has a “brain stem tumor”. WOW!!!!! Our lives were instantly changed forever and it hasn’t been the same.
We know Faith has changed many lives, in one way or another. She has brought many, back to God’s word and their faith. Some days it seems like she was diagnosed just yesterday. Other days it feels like an eternity. Memories of certain things from those initial days seem like a complete blur. From the first day Faith was diagnosed, we have been shown a whole new side of life…a life filled with love, care, support, generosity and kindness. We have made many new friends, and connected with many old ones.
Faith has shown us what courage, grace, strength, resilience, and hope really means!
We are, everyday, being taught by Faith, little lessons about life. She is our beacon and is leading the way. It’s truly incredible to be led by a soon to be six year old.
Faith is a SURVIVOR!! As of today, a soon to be, one year survivor!!!!!
We were told early on, that a person is considered a “survivor” from the day of diagnosis. It has taken us this long to accept that statement. We’ve been anticipating these days for a while now. Now that we’ve all arrived at this soon to be one year milestone, all we can say is, “we feel (just) O.K. today”. We have a lot to reflect back on and MUCH TO be THANKFUL FOR.
We’ve learned how to navigate through the battle grounds of this dreaded war. Thank you is not enough, to all, who joined in, on the fight of our lives. Some days are good and we take that and run, sometimes their not, and that’s life. THIS IS LIFE!!!!
On another note, we felt the need to bring this information to all of you reading this. AWARENESS AND FUNDING IS KEY TO HELPING THESE KIDS, THOSE BEING DIAGNOSED AS WE WRITE AND THOSE WHO WILL BE DIAGNOSED IN THE FUTURE…WIN THE BATTLE AGAINST BRAIN CANCER. SINCE WE WERE DRAFTED INTO THIS D.I.P.G. WAR, MANY HAVE PASSED IN THE LAST YEAR. SOME WE HAVE PERSONALLY MET AND MANY WE HAVE BEEN FOLLOWING FOR INSPIRATION AND INSIGHT. THIS WAS A HEART WRENCHING WEEK IN THE D.I.P.G. WORLD. FIVE KIDS IN ONE WEEK EARNED THEIR WINGS IN THE BATTLE AGAINST…DIFFUSED INTRINSIC PONTINE GLIOMA.
ONE IS TOO MANY!! FIVE IN A WEEK DEVASTATING!!!!
PLEASE TAKE A MOMENT LONGER OUT OF YOUR DAILY PRAYERS TO INCLUDE THESE BRAVE AND SPECIAL FAMILIES.
1)Brynne Acres-www.caringbridge.org/visit/brynne
2) Skyler Smith-www.caringbridge.org/visit/skylersmith
3) Lauren Bells-www.laurenmackenziebells.com
4) Mara Adams-www.maraadams.com
5) Adam Beiswanger-www.adamupdate.com
Also, we ask that you please take the time to read a letter written by a mother whose son, Andrew Smith, age 7, is also battling a d.i.p.g. tumor. Awareness and funding will give us a CURE one day.
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 fast forward 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
www.caringbridge.org/visit/aws
UPDATE ON FAITH:
This past week was a very busy week for us. Faith continues with physical therapy. Most days she’s not happy going there, but once she arrives, the rest is smooth sailing. She ended her 3 week intensive therapy sessions on Friday 9/26. The director of PTA advised us that all of her therapists are asking “who gets to work with Faith next”. She also mentioned, in their weekly team meeting, they’ve all commented on how inspiring, determined and strong she is. The therapists state “ever since they met Faith they can’t help but think of her quiet demeanor and strong will” when they leave work. We were so touched when Suzanne (director) told us that. Anyway, she’ll drop down to a 4 day a week, 2 hours a day, and 1 day of aquatic therapy program on Monday, 9/29.
She also started her official first week of homebound kindergarten classes. Her teacher, Mrs. Mindy Schriedel, is so sweet to Faith. We couldn’t have gotten a better teacher. She’s soft spoken, gentle, and has the patience of a saint. Faith will continue on a 1hour/2days a week program. We’re so happy the School Board of Broward County has such a program.
Faith hasn’t been feeling well this past week. Maybe it’s the end of her chemo cycle, maybe it’s disease, who knows. What we do know, is we try to make the best of everyday. Like we stated earlier… this is life!
A special thank you, to Father Ed, of St. Bonaventure for a beautiful visit on Saturday with our family. You truly made Faith’s day. Your encouraging words and prayers were well needed after a not so great week.
Also, a special thank you to our prayer warriors, Kathy Solomon, Pastor King, and Rebecca. Your visit on Saturday was much needed. The extra prayers or shall I say the double prayers on Saturday, was exactly what was needed. God as our witness, Faith is feeling much better since Saturday. The power of prayer and anointing is incredible.
Praise GOD!!!
Thank you for getting to this point in the journal. We know today’s entry was a bit much , but we hope you understand our HEART!! GOD BLESS and KEEP YOU AND YOURS SAFE, HAPPY, AND HEALTHY ALWAYS!!
