fall header

Fall, 2012                                                                                                   

Issue 16

Emily's Intro...

ecard spreading awareness

Greetings, loyal Smiles For Sophie Supporters!

 

As I sit down to write this introduction, I find myself amazed that we are half way through September.  We are usually slowing down this time of year with Foundation events, yet this year, we are still going strong.  After all, it is Childhood Cancer Awareness Month, and seems there is no time to slow down.  Strange to think, I am still writing race thank you notes, while at the same time thinking about selling this year's Christmas ornament!  We have our first Ohio golf outing going on this weekend, most probably another pie sale in November, and between now and December 1, I have to find the time to train for the St. Jude marathon!  I know I will blink my eyes and it will be January, so for that reason I must force myself to slow down.  And writing this introduction is a good way of forcing myself to sit down and reflect. Yes, it is Childhood Cancer Awareness Month, and helping spread the word about this number one killer of our children through this introduction is the best reason of all to slow down.

 

I love fall and the weather in September in Cleveland is usually ideal.  Yet this month always brings me sadness, as I often think back to September of 2007 and how that last month with Sophie was.  Labor Day - a day, which is for most a "day off" and a day filled with relaxation and time with family, was for us, in 2007 the last time we would hear Sophie's voice.  She had been struggling to form words and speak clearly for most of August, but it was that Labor Day wee end when she could no longer make a sound.  Yet she held on for another month battling that tumor with everything she had left.  

 

Just last week it cooled off a few days and I had to dig through the bins to look for some warmer clothes for Marie.  Down in the bottom was the black corduroy jumper with pumpkins on it that Sarah wore to Sophie's funeral mass.  We buried Sophie in a matching one.   Those memories are why I am personally and painfully aware of the burden of childhood cancer, especially in September and all year throughout the year.  There are days upon days when I wish I could live a "normal" life.  I long for the days when I thought life was hard, knowing now, how easy it was.  I don't have the option of forgetting Sophie's battle, or not being aware.  As hard and as time consuming as it can be to run SFSF, I don't have the option of quitting.  I don't have the option of "just being a stay at home Mom" to Sarah and Marie - which many of you know is a full time job in itself.   Smiles for Sophie Forever is always in the back of my mind, and something that is part of my job of being Sophie's mother too.  Of course I never in a million years thought I would have a child with cancer.  Most people don't think that way, yet if you read the statistics you would be amazed at just how prevalent it is.   We cannot ignore this anymore.  Chances are, if you are reading this, you do care, and you do try to spread awareness about this disease.  If you feel compelled to join us in the fight, we are always looking for people to help us with our cause.  We thank those of you who have embraced our cause already, and find the time in your crazy busy "normal" lives to support us.  As president of this foundation, I humbly realize that 99% of the work of Smiles For Sophie Forever is not done by me or Marc alone, yet it is a combined effort by a few amazingly dedicated people, and for that I am grateful that these individuals are indeed aware.  

 

Below I am sharing the link to an article written by a father who also watched his daughter battle DIPG.   I think he really drives the point home.  (Thanks, Jonathon Agin)  We owe it to our kids and all the kids in our lives to be aware.  After all, no one plans to be the parent of a child with cancer.

 

http://www.huffingtonpost.com/jonathan-agin/childhood-cancer-awareness-_b_1818540.html

 

Fully aware of childhood cancer,

Emily Quayle

SFSF Board President

Sophie, Sarah, and Marie's Mommy

 

Alivia Gibson fall 2012 spotlight 

DIPG Spotlight: Alivia Gibson

  

Meet Alivia Gibson, a sensitive, lovable 3-year-old diagnosed with DIPG just days after Christmas, 2011. Living in Illinois with her mom, Amanda, her dad, James, and her nine-year-old brother, Jayden, Alivia loves drawing, coloring and Play Doh.

 

Alivia's symptoms of balance problems and draining and drooping eyes first appeared around Thanksgiving. After several visits to the doctor, with a diagnosis of an ear infection, her parents demanded more testing after an emergency room visit just days after Christmas. When a CT scan indicated a tumor, Alivia was sent to St. Jude in Peoria for an MRI that confirmed the DIPG diagnosis. The family then headed to St. Jude in Memphis for six weeks of radiation. Before their return home, three months later, the family enjoyed a Make-A-Wish trip to Disneyworld in Orlando. Upon their return, Alivia was doing quite well, and her parents' only concern was with providing quality to her life. By the end of April her steroid dosage was down to 1 mg, and by mid May Alivia was off the DEX and was again sleeping through the night. Although the tumor had shrunk considerably, St. Jude doctors said that the necrosis progression indicated a Stage 3 or 4 tumor. The post-radiation MRI done in Peoria and evaluated by doctors in Memphis indicated a 40% tumor shrinkage.

 

Enjoying Alivia's honeymoon period, the family was constantly, according to Alivia's singing, "on the road again." Trips to Colorado to see Jim's relatives, and to the Wisconsin Dells with Amanda's relatives, going to an NBA Pacers playoff game in Indiana, and watching Alivia throw out the first pitch at a Cornbelters game all happened before the 4th of July. Alivia was laughing, playing, visiting, and enjoying life.

 

When Jayden had to have his tonsils and adenoids removed in July, Alivia enjoyed playing nurse for her brother.  Incidently, Jayden managed to do well in school, earning all "A's," despite the three months at St. Jude and the repeated bouts of strep throat.

 

In mid July Alivia had her long (down to her bottom) hair cut and styled. Her new look was accompanied by new desires and she began spending days and eventually a night with her grandparents.  Sharing time with family became so important to little Alivia.

 

After attending the St. Jude run in Peoria, the family headed south, dropping off Jayden at Amanda's relatives in Kentucky and then heading to St. Jude for a second MRI which indicated further tumor shrinkage, which by her actions was easy to see.

 

Even though the quality of Alivia's life was good, her parents worried about the future, all the while placing their faith in God, their church, and prayer.United in prayer,the family carried on.

 

Amanda returned to almost full-time work (34 hours a week) and Jim took on side jobs, often taking Alivia along as his helper. When Alivia became ill in August, her parents were relieved with a diagnosis of croup.

 

Although Alivia continues to do well, Jim and Amanda have noticed some minute changes in her balance and speech; for the first time since May she has complained of a headache. Both concerned and frightened by these changes, the family continues to be loving, supportive, and filled with the promise of a miracle for Alivia.

 

Stay updated by visiting www.colespages.org/aliviagibson/journal/view

 

Well Worth Noting...  

   

Michigan Golf Outing

 

The Sixth Annual Michigan Golf Outing, held June 18, 2012, attracted 28 teams to its new venue at Warwick Hills Country Club in Grand Blanc, MI, and added $7,122.28 to SFSF's coffers. SFSF thanks Bob and Kathy Quayle (Marc's parents) and Brett and Amy Quayle (Marc's brother and sister-in-law) for planning, organizing, and executing another successful fundraiser for The Foundation. Golfers who may have missed out, or want to experience this terrific course, food, and atmosphere again, pencil in June 17, 2013 for the Seventh Annual SFSF Michigan Golf Outing.

 

Chili's Pepper Campaign

 

Susie Miklaski's create a pepper online
Board Secretary, Susie Miklaski's entry into the online Create-a-Pepper Campaign.

Chili's is once again sponsoring its Create-a-Pepper Campaign both on-line www.createapepper.com 

and at all Chili's locations throughout the US. All peppers created are eligible to win a VIP trip to St. Jude Children's Hospital in Memphis, based on public voting, which will begin on Sept. 17. In addition, Chili's has set aside Monday, Sept. 24 as the date when 100% of Chili's net profits will be donated to St. Jude. Here's another way to observe Childhood Cancer Awareness Month in September and support a cause dear to SFSF.

 

SFSF Gift Store

 

bumper sticker
A bumper sticker on display sporting the newly-created SFSF logo.

The SFSF Gift Store ordered a number of new items just in time for  The Foundation's summer fundraisers, and all will soon be available on the website. All the items sport a newly-created, updated SFSF logo, among them four adult T-shirts, including a men's and women's dri-fit shirt, a children's tie-dyed T-shirt, an insulated drinking cup, a bumper sticker, headbands, beach balls, foam footballs, and much more! Stay tuned as the new items will be available in the SFSF Gift Store very soon.

  

Silpada Sales

 silpada

Amy Cashman, an independent representative for Silpada Designs  Jewelry, in kepping with her promise to support SFSF (Smiles For the Season, Fall 2010) recently sent $50 to The Foundation. Amy offers 50% of the proceeds of Silpada Jewlery sales, ordered through her, to Smiles For Sophie Forever. Anyone who schedules a catalog or home show through Amy will also be helping Smiles For Sophie Forever, plus be earning some jewelry for herself. See the jewelry catalog by visiting www.silpada.com. Contact Amy, on that site, by clikcing on the "Contact Silpada," box and typing "Amy," "Cashman," and "Ohio" in the appropriate boxes or email Amy at amycashman@insight.rr.com and she will send the link.

 

Possible Pie Sale

 mama jo pies logo

Watch for information on the Thanksgiving Pie Sale. Remember the  Mama Jo's Pies from last year, the ones that may have been served at Thanksgiving? SFSF is in the process of looking into another sale for this holiday. All who like to plan ahead, stay tuned for details to follow.

 

Hot Air Balloon Raffle

 

Tickets are still available for the SFSF Hot Air Balloon Raffle, and are only $10 each. Drawing will be held after 100 tickets are sold. Remember the balloon ride for two is valued at $400, is valid for one year from the date of delivery, and may be used at over 200 locations nationwide. Contact Emily at emily@smilesforsophieforever.org to purchase a ticket.

updated hot air balloon info

 
 

 

Every year 10,400 children are diagnosed with cancer. 

                                                                        

 
 

SFSF 2012 Christmas Ornament Is Here!

 

 2012 Christmas Ornament

The 2012 SFSF commemorative Christmas ornament is here; one gift or personal item available before the hustle and bustle of Christmas begins. Fifth in the SFSF collection, the 2012 edition is a white, glossy three and inch glass ball depicting Sophie's full-color, hand-drawn rainbow. Selling for $12.00 each with a $5.00 shipping charge, the ornaments will soon be available online in the SFSF Gift Store or now, by contacting Emily at emily@smilesforsophieforever.org.

 

Sophie, who loved rainbows, drew the rainbow in June of 2007 with her left hand, as her right hand began failing her. It is one of the last of Sophie's works of art and had been used on a refrigerator magnet and on Team SFSF St. Jude Marathon shirts. According to Emily, Sophie's mom, "This year's ornament is very special."

 

Ornaments from prior years are still available, with the exception of the first 2008 rainbow ornament.

 

Fundraisers Reap Rewards  

fundraisers dri fit shirt
Dri-fit tee design in light blue.

In an effort to increase individual fundraising for this year's Bash & Dash, SFSF offered special incentives for all participants who created fundraising pages and raised $100 or more. The one-of-kind, SFSF dri-fit tees were given to all participants who raised at least $100 through their page. The shirts, dark blue for women, red for men, and light blue for children were special-ordered following the race and have been delivered. Earning the "special" shirts were: Melissa Belas, Kayla Bucci, Debbie Cartwright, Leslie Farmer, Laila Fiorentino, Mike Fiorentino, Pete Grasso, Stacey Green, Jeff Grove, Lynne Jeric, Jennifer Kaczmarek, Krista Konsen, Melanie Leonard, Kelly Matus, Susie Miklaski, Julie Osoteo, Betsy Pajak, Emily Quayle, Sarah Quayle, Aileen Smith, Kate Smith, Sarah Smith, Kristin Van Euwen, Dawn Watson and Taryn Wilson.

 

Those participants who raised more than $100 were entered into a drawing for two i-Pad Nanos. The lucky fundraisers were Kate Smith and Aileen Smith.

 

SFSF thanks all who participated in this first-time fundraising incentive program and hopes to see it grow for next year's race!.

 

SFSF grants surpass $310,000

 

Since June 1, 2012, the Foundation has helped 19 families and awarded $18,950 in grant money, bringing the total amount of family grants awarded to $239,878. The grand total donated by SFSF, including donations to The Cure Starts Now ($37,000) and St. Jude ($35,000), is $311,878.

 

Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. The children of the families who received grants in June, July and August 2012 are: 

  • Mary, age 18 - anaplastic astrocytoma grade III
  • Zakiyah, age 5 - passed away from DIPG June 2012
  • DeJahanee, age 16 - medulloblastoma
  • Brannon, age 15 - astrocytoma
  • Blake, age 3 - optic glioma
  • Ash'lee, age 15 - right temporal brain lesion
  • Easton, age 8 - ganglioglioma
  • Ava, age 5 - DIPG
  • Colt, age 4 - medulloblastoma
  • Connor, age 6 - ependymoblastoma
  • Alivia, age 3 - DIPG
  • Austin, age 10 - pilocytic astrocytoma
  • Emalee, age 5 - neuroblastoma
  • Darion, age 8 - passed away from DIPG Aug 2012
  • Anonymous, age 2 - ependymoma
  • Nathan, age 5 - ganglioglioma
  • Kaylee, age 11 - astrocytoma
  • Amari, age 2 - astrocytoma
  • James, age 13 - ependymoma
grants map
SFSF reaches across the nation, to 32 states, with its family grants as shown in this map colored red by Abby Green, daughter of Vice President of Giving and Grant Committee Chairperson, Shawn Green.

 

 

In This Issue
DIPG Spotlight
Events and Updates
2012 Christmas Ornament
Special Tees For Fundraisers
SFSF Family Grants
September is Childhood Cancer Awareness
Tastefully Simple at Bowling Green
Bash and Dash Meets Its Goal
St. Jude Marathon Weekend

SFSF Golf Outing Is This Saturday!!

     Mallard Creek Ohio Goflt Outing 2012  

Time is running out, but there are still openings for the first SFSF Ohio Golf Outing, to be held this Saturday, September 15, 2012, at the Mallard Creek Golf Club in Columbia Station. The $125 registration fee includes 18 holes, a cart, lunch on the turn, dinner, and unlimited beverages of beer, soda, and water. Registration opens at 8:30 am; shotgun start is at 10:00am.

 

In addition to a day on one of the finest courses in northeastern Ohio, participants will also have the opportunity to win prizes, bid on raffle items, and purchase SFSF gift store items.

 

Mallard Creek was rated number four among over 100 Cleveland area golf courses by golf writer Pat Galbincea and boasts of being a course designed with a "perfect balance of challenge and forgiveness."

 

Registration is still available online or by contacting Mike Bova at 440-476-1611 or Marc Quayle at 513-260-0649.

 

Weather forecasters promise partly sunny skies with a temperature high of 71 degrees...perfect weather for a great day of golf, for an even greater cause --- Smiles For Sophie Forever.

 
 

 

Cancer remains the leading cause of death by disease for children under age 15.

 

 
 

Something To Do for

Childhood Cancer Awareness Monthchildhood cancer awareness month

 

Although there are many suggestions and ideas for commemorating Childhood Cancer Awareness Month this September, SFSF is asking all readers and their friends to do this one special thing: Visit and like the Chase Community Giving Website on Facebook, www.apps.facebook.com/chasecommunitygiving/, and vote for Smiles For Sophie Forever as one of the charities to share in the $5 million that Chase will award to the top 196 vote-getters. Awards range from $250,000 to $10,000, depending on placement in the number-of-votes list. Each visitor to the site will receive two votes, but each vote must go to a different charity. To help SFSF in the running, SFSF suggests using only one vote, with that vote going to Smiles For Sophie Forever. As an added incentive, visitors who share the site with Facebook friends who in turn like Chase and vote will be allowed a second vote which may also be given to SFSF.

 

When voting began on Sept. 6, Chase was overwhelmed with the number of visitors and some glitches occurred. However Chase's website posted this message:

 

Fans, thank you for your feedback. We know some of you have been experiencing technical difficulties with the voting app -- and we appreciate your patience as we worked through the issues. We think we have worked through the kinks and look forward to your votes!

 

Voting is open and ends on September 19. Cast your vote to help SFSF share in the $5 million in grants. It only takes a minute, and voters will be doing something positive for Childhood Cancer Awareness Month. Don't delay, vote today! www.apps.facebook.com/chasecommunitygiving/  

 

chase community giving voting pic 

 
 

 

Every day, four children will die of cancer. 
 
                                                                              

 

 

Local Gal Takes SFSF to Bowling Green    

  BGSU NSSLHA

Bethany Karl, a former employee of The Little Gym in Avon, OH, became very familiar with Smiles For Sophie Forever as she taught Sarah, Sophie's sister, and many of her friends, gymnastics. Bethany befriended Emily, Sarah and Sophie's mom and many of the other parents who were friends of The Quayles. Moved by Sophie's story, Bethany participated in the Bash & Dash for the last four years, but she wanted "to do more."

 

Now a student at Bowling Green State University, studying communication disorders, Bethany is also fundraising chair of BGSU's chapter of the National Student Speech Language and Hearing Association (NSSLHA). Bethany was given the responsibility of selecting a charity to benefit from the NSSLHA's Tastefully Simple Fundraiser which runs through October 6. She was more than happy to name Smiles For Sophie Forever as the recipient of the fundraiser, while spreading awareness of SFSF and pediatric brain cancer.

 

The on-line fundraiser simply involves ordering Tastefully Simple products through consultant Claire Goberman who is donating a portion of the profits to NSSLHA for its SFSF charity.

 

"Tastefully Simple's products are convenient, easy to prepare gourmet foods which are great for entertaining, gifts for the holidays or just bringing your family together at the dinner table."

 

To order items, visit www.tastefullysimple.com/web/cgoberman. In order to guarantee that credit is given to NSSLHA and ultimately to SFSF, follow these simple directions:

 

1.) Choose your products;

2.) Go to the shopping cart;

3.) Select "FindHost/Event";

4.) Enter first name: "BGSU" and last name, "NSSLHA"

5.) When above appears, click "select" to associate your order with the fundraiser.

 

Smiles For Sophie Forever extends a hearty thank you to Bethany for remembering SFSF and helping to spread Sophie's story as well as the mission of SFSF. Bon Apetite!

Tastefully Simple 

 

Bash and Dash Meets $50,000 Fundraising Goal

race 2012 

Although having fewer runners than last year's 903 participants, the 2012 SFSF Bash & Dash raised $51,556.13 to further its mission of helping families of pediatric brain cancer victims, supporting brain cancer research, spreading awareness, and supporting St. Jude. Increased revenues from fundraising incentives (see related story), increased donations and matching donations (Nordson increasd its matching donation  up to $10,000 this year.), and increased sales of newly-added gift store items were, in part, attributed to an increase in profits.   

 

Once again the weather cooperated, although Mr. Sun could have been a little less bold for the participants who walked and ran through Sophie's neighborhood.

 

The kids' activities included bounce houses, face-painting, candle scramble, hay piles, a 50-yard dash, a coloring station, live animals, and new this year, a cookie walk.

 

Bash and Dash traditions carried on, with the red, white, and blue arch, birthday cupcakes and smoothies, picnic foods, sno-cones, cotton candy, the Chinese and Silent Auctions, the Awareness tent, and most of all, the dedicated volunteers, supportive families, friends, and neighbors and the 775 registered participants who endured the heat, "racing toward freedom from pediatric brain cancer" on July 4, 2012, Sophie's should-have-been ninth birthday.

 

SFSF extends a heartfelt thank you to all with an invitation to "see you next year."  

kids 50 yd dash 2012
Kids line up for the 50-yd dash...just one of the many activities for kids during the annual Birthday Bash and Dash.

 

St. Jude Marathon Weekend

 

For the fifth consecutive year, Team Smiles For Sophie Forever will be participating in the St. Jude Marathon Weekend, Nov. 30-Dec.1, 2012. This year's team is once again captained by SFSF Board President Emily Quayle. Joining her are veteran participants Amy Wilson and Sarah Smith, as well as newcomers: Trent Wilson, Amy's husband, and high school friends, Jennifer Slater and Kathy Farquhar. As of today's date, the team boasts of four, full marathoners: Emily, Kathy, Sarah, and Trent and two half-marathoners, Jennifer and Amy, although Amy completed the full marathon at St. Jude last year. Some other high school friends are considering running the 5K.

 

SFSF has donated $10,000 to the Team's fundraising efforts in keeping with its mission of supporting St. Jude; all members have registered as St. Jude Heroes and have created personal fundraising pages, hoping to exceed last year's $2500 per team member. You can donate to St. Jude in support of Team SFSF as they train for their races by clicking here.

 

In the words of Sarah Smith, SFSF VP of Awareness, "Running through the St. Jude campus, where patients hold signs of thanks, cheering you on, is simply an awesome experience."

 

St. Jude Heroes 

 

 

 

The survival rate for DIPG victims is 10%. 

                                                                

 

 
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