Saturday, July 29, 2006

Sarah Smith Shines![Post #21 7 PM]

[The surprise party "surprise" has been uttered, and people are clamoring around in my house. And I'm up here on the computer talking about some wonderful kids!!]



Nickname:Princess Groovy Chick
Age 10
Diagnosed:5-02
Relapsed:6-06

Diagnosed with Stage IV neuroblastoma in May of 2002 when she was six years old, Sarah's been through too much and grown up too fast; however, she still manages to sprinkle each day with her special, custom blend of giggles and joy, compassion and courage.

Sarah and her family spent fifteen years traveling full time, doing about 160 concerts in churches every year. She and her brother Nathan, (16) were on the road with her parents since they were about four weeks old and have been in forty states, Canada and Mexico. For seven of those fifteen years, their family lived year-round in a 45 foot, custom-built two-bedroom R.V. pulled by a Kenworth semi truck. In their fifteen years on the road, they recorded thirteen CD's of original music. When Sarah was diagnosed on May 17, 2002, her family left the road so they could dedicate themselves to doing everything possible to help her get well. Sarah's dad, Steve, now pastors First Assembly of God in Smithfield, NC.

Sarah has a wacky, irrepressible sense of humor and loves Sponge Bob, horses, art, music, and writing her own books. She used to be blond and curly-headed but chemo, radiation and a stem cell transplant did away with the old look; her new look is brunette and her new attitude is, "I have survived and I'm glad to be alive!"

Sarah’s mom shares this wonderful quote that she says sums up Sarah very well! A couple of days after Sarah found out she had relapsed she declared, "Just because I'm 10 years old and have cancer doesn't mean it's going to steal my happiness!"

Here’s a wonderful Sarah story, submitted by her lovely mom:

“After our morning meeting with the transplant coordinator, we moved to the area where Sarah would be having her MIBG and CAT scans. The waiting area consisted of two long rows of chairs with about a four foot aisle in between. The nurse gave Sarah two small hospital gowns to put on, one to tie in the front and the other one to tie in the back; I started to go into the little dressing room with her to help but she pronounced, "I can do it myself, Mom!"

“As I sat back down next to Steve, the 70-year old woman beside me leaned over and asked, "Your daughter doesn't have cancer, does she?" When I nodded in the affirmative, her face filled with such sadness. She said, "Oh how terrible for a child so young to have that disease. I was just diagnosed with breast cancer myself and am facing a mastectomy." I could see the fear and anxiety in her eyes and expressed my compassion to her with much more empathy than I ever could have done before Sarah's diagnosis. The lady wanted to know more about Sarah so I told her that she'd been through seven rounds of chemo, was getting her nutrition through a feeding tube, had been through two major surgeries and was facing a stem cell transplant. As I listed each thing, I could see the sadness growing on this woman's face as she thought about a small child having to face so much pain and so many challenges.

“Suddenly, right in the middle of our conversation she stopped talking abruptly and said, "What's that sound?" I paused to listen and heard very clearly over the top of the dressing room door the unmistakable sound of Sarah's sweet little voice singing a happy, childish, out- of- tune melody. The expression that appeared on the lady's face was priceless. Tears welled up in her eyes and she whispered in disbelief, "I can't believe your daughter is singing!" I could see the change in her taking place--instead of being consumed with anxiety and dread this woman sat in the hospital waiting room and filled her ears and heart with the sound of a cancer-ridden girl singing with uninhibited joy.

“A few moments later, Sarah flung open the dressing room door with her characteristic panache and stood cheerily in front of us in all her glory. Her hat was on lopsided revealing most of her cute, shiny head, her feeding tube was nonchalantly tucked behind one ear, and the two mismatched, wildly clashing robes were scrunched all together around her waist. The only clothing of hers that remained was her little navy shoes and white socks, which appeared at the end of her skinny, pale legs, which looked all the thinner because the robes were way too short. She, of course, was completely oblivious to her comical appearance so I gallantly suppressed my strong urge to giggle.

“The nurse saw that she was done changing and told her that she should use the restroom before the scan started because she would have to lie perfectly still for forty-five minutes. Since the restroom was at the far end of the two rows of chairs, I asked Sarah if she wanted me to go with her. She blithely responded, "Oh no, I can do it myself."

“She then turned to go but instead of walking sedately as all of us boring grown-ups would have done, she deciding that skipping was the best mode of transportation. The lady beside me stared in open-mouthed wonder as my ridiculously dressed, seriously ill, bald child merrily skipped her way toward the restroom. The chairs on either side of the aisle were filled with about a dozen people waiting for their names to be called; the only thing they all had in common was that their faces were filled with sadness and fear. One by one, I saw their heads rise as Sarah approached and as she passed, I saw their fear give way to smiles. She disappeared into the bathroom and when she re-emerged, she shifted herself back into skipping gear and jauntily hurtled her way back to us.

“What did a sight like that do for people facing their own mortality, facing their own fears? I think it gave them a little infusion of courage and joy; it gave them an image to carry in their minds as they submitted their bodies to the machines that would spell out life or death for him. It gave them a reason to smile. And as Sarah has often told me, "That's why I was born, to make people smile." I don’t think there’s any doubt that she is fulfilling her mission!”

Nikki’s Notes: After reading the above story, I really don’t have anything else to say about the lovely Sarah. I think that story sums it all up! Please visit Sarah’s site here: www.caringbridge.org/nc/sarahsmith

4 Comments:

Blogger Anna said...

Keep up the good work Nikki - what a cool way to raise money for such a wonderful cause!

Anna
http://www.curefornb.com (I've linked you in the latest news page)

7/29/2006 07:14:00 PM  
Anonymous Sara said...

I KNOW I'm starting to sound like a broken record, but what a wonderful story!

You are a braaaaaave woman. Blogathon AND party, all in one night?? Go ahead, girl. Work it!!!

7/29/2006 07:15:00 PM  
Anonymous Caryn said...

That story made me cry (most of them do....). You are amazing. How you post touching story after touching story. You really are amazing, nikki.

7/29/2006 07:30:00 PM  
Blogger nikki the red said...

thank you anna!! thank you for sponsoring me!!!

caryn--YOU ARE AWESOME!

sara--you're the coolest monitor ever!

7/29/2006 08:11:00 PM  

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