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Emily's Intro...
Happy September! I know it sounds cliché, and I feel like I say this all the time, but it really feels like I was just writing the May newsletter intro and prepping for our summer fundraisers and the birth of our baby girl. And today, both events seem like they happened so long ago; and so it is with the passing of time, another season will soon be upon us.
What a busy and exciting summer it was for the Quayle household. On June 13, our precious daughter, Marie Elizabeth (named after my Mom's middle name and Sophie's middle name) was born and we were so excited to welcome her to our family. When Sarah said she was sad that Sophie never got to see Marie, I was happy to share my thoughts that certainly Sophie did meet Marie - up in heaven before God put Marie in Mommy's tummy! From her arrival up until just last week, it's been one SFSF event after another: the Max and Erma's fundraiser, the Best of Lorain County competition, the Fifth Annual SFSF Bash and Dash, and the Michigan Golf Outing! Whew! To all who were involved with these events, one way, or another, I say, again: "Thank you! We couldn't have done it without you." (Please see all the related articles.)
Of course we continue to miss Sophie everyday, and it seems surreal that she has been gone from us for almost four years. Sarah started full day kindergarten last week, and that was another bittersweet moment. When Sophie died, I remember thinking that one of the many things she never got to do was start kindergarten and ride the bus to school. As I watched Sarah climb the school bus steps, I couldn't help but long for her older sister Sophie to be there with her, helping her on her first day. Those thoughts and memories will never go away, and so we continue to fight the battle through SFSF. Parents, look respectfully upon the teachers to whom you entrust your children; they're the adults who will spend the greater part of the day with your children. It was Sophie's pre-school teacher, Miss Kelly, who observed and noted many of Sophie's early symptoms.
So as September begins and children across the nation return to their classrooms, let us consider those children who will not be in school because of a diagnosis of cancer. September, fittingly so, is National Childhood Cancer Month. And although our Foundation doesn't have any fundraisers in the works, I along with some friends and family are setting out to raise funds for St. Jude in honor of Sophie and all kids with cancer. On October 6, it will be four years since we held Sophie as she took her last breath. I've said it many times before and I will keep on saying it...I do what I do (with the help of so many, of course) so that no parent will ever have to hold their child dying from brain cancer in their arms as they barely hang on. I honestly feel that St. Jude is an amazing place that will do great things to continue to find cures for the thousands of kids diagnosed with cancer. You can read more about our efforts in this newsletter.
We have had some beautiful weather these past few days, and I am so grateful for the big and small things. I wish you all a safe and happy holiday week end and an enjoyable fall. Don't forget to check the website now and then for the latest happenings!
Sincerely,
Emily Quayle,
SFSF President and
Sophie, Sarah, and Marie's Mommy | |
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DIPG Spotlight: Jackson Moore
September's Spotlight features four-year-old Jackson Moore, whose bright, red hair parallels his bright personality! Jackson lives in St. Clair Shores, Michigan, with his Mom, Abby, Dad, Joe, and seven-year-old sister, Allie.
Jackson was diagnosed with DIPG (diffuse intrinsic pontine glioma) on April 26, 2011, following an MRI at St. John Hospital. Two days earlier, his mom took him to the doctor because of his lack of motivation, tiredness, and "odd" look to his eyelids. Those symptoms were thought to be virus-related. However, his loss of balance, choking, and drooling sent them back to the doctor who then ordered the tell-tale MRI.
A regimen of 30 radiation treatments and daily dosage of Decadron began the first week of May. His early May treatments found Jackson in good spirits, and he actually looked forward to drinking his "magic milk," visiting with the staff, collecting his "gift," and getting his special treats and treatment. Making friends with the hospital personnel, Jackson's smiles and laugh were contagious. What's more, he enjoyed being "funny." Jackson was glad to come home and give his daily gift to Abby.
Lowering his steroid dosage affected Jackson's walking and smiling. Some painful ear problems, a side effect from the radiation, didn't hold Jackson down too long. Being able to attend his pre-school graduation in mid May and seeing his pre-school friends found Jackson smiling, happy, and stronger. Jackson was honored and excited to attend Allie's belt ceremony. Allie earned her purple sash, and in addition to her karate, has been earning and learning so much being a big sister to Jackson. They share great times together, and the family's activities always include good, old-fashioned fun, like a camp out under a tent made of sheets. Jackson enjoys videos, especially the Toy Story series and his Wii game.
Completing radiation in June, Jackson enjoyed many upbeat days of swimming, barbecues, visiting with relatives, attending fundraisers, and watching movies, amid his medical appointments. A June 28, post-radiation MRI indicated possible tumor progression, so his Make-A-Wish trip to Disneyworld was set for early July. Top priority was Toy Story Mania! The entire family enjoyed the trip so much that another Disneyland trip was already in the works.
Mid summer days were ups and downs for Jackson as the doctors attempted to wean him from the steroids, still not certain whether the MRI was indicating growth or necrosis.
Since Jackson was not experiencing the typical "honeymoon" period, Abby and Joe decided to research other alternative treatments. Contacting St. Jude, the Moores discovered that Jackson would be eligible for a St. Jude clinical once he was three months past radiation.
However, when Jackson had good days, he remained brave, strong, and funny, and his parents and his extended family embraced life to the fullest. The early part of August brought the family back to the Magical Kingdom where they all met another 4-year-old Jackson with DIPG. The two families shared some great moments together.
An interview on radio station 96.3 (Abby's favorite), a visit from a real, live horse from Camp Casey, and a new puppy, Nemo, were just some of the many special August activities following the family's second trip to Florida, where Jackson met the dolphins at Sea World.
In the last several weeks, Jackson has become weaker and more difficult to understand, sleeping more and eating less. A second MRI on August 26 has not produced definitive answers, which has become frustrating for his parents. However, Grandma, Grandpa, Nana, aunts, uncles, cousins, and friends have been very helpful and supportive. Abby and Joe are grateful for all the loving and caring, giving and sharing, helping to make Jackson happy, comfortable, and loved.
Follow Jackson's story at http://m.caringbridge.org/visit/jacksonmoore1 |
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By all these lovely tokens,
September days are here,
With summer's best of weather,
And autumn's best of cheer.
~ Helen Hunt Jackson
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Fourth Annual Birthday Bash and Dash - another sunny, successful SFSF event
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All particpants are given a carnation to place at the flower drop in front of the Quayle's house, in memory of Sophie. |
A record number (320+) of children participating in birthday bash activities, along with a record number of registered runners and walkers (905) taking part in the dash, enjoyed the beautiful summer temps and sunny skies at The Fourth Annual SFSF Birthday Bash and Dash, July 4, at Walker Road Park in Avon Lake, Sophie's home town. Profits from The Bash and Dash added more than $47,500 to SFSF coffers, allowing The Foundation to help many families of pediatric cancer victims, support St. Jude, fund pediatric brain cancer research, and spread awareness of the devastation of pediatric brain cancer.
The event featured many traditional activities for the children, including, sidewalk art, face-painting, duck pond, candy scramble, a rainbow craft, caricatures, bounce houses, sand table, balloon animals, sno-cones, cotton candy, live animals, and an Avon Lake fire truck. New this year were a personalized, hand-made corn hole toss and a 50-yard dash for the youngsters. With the number of participants and enthusiasm, it appears as though SFSF is gearing up the youngsters to be registered runners in future SFSF races and champion bean-bag "tossers."
An expanded tent featured a silent auction, numerous Chinese auction items, a 50-50 raffle, the SFSF store, and of course, an Awareness display, featuring the photographs of children SFSF has aided with financial assistance. Under-the-big-tent events raised over $2500.
Summer picnic foods, complimentary cupcakes and smoothies, music, flowers left at Sophie's home, many volunteers, family and friends, special drawings, an awards ceremony, the balloon arch, and the inspirational signs filled the park as a special tribute to Sophie, on her should-have-been eighth birthday.
Race director, Michelle Polinko, adds, "...Sophie was smiling down upon all, enjoying her birthday in heaven....To all those volunteers who helped, individuals and businesses who supported and donated, and all those who attended, I say: 'THANKS SO MUCH!' I am proud to work with such an outstanding foundation." |
Brief, but bountiful
Annual Appeal
SFSF continues to receive donations from its April Annual Appeal. To date, $8,070 has been received. SFSF thanks all who have made donations.
Audit
An anonymous friend of Board President Emily Quayle's brother, Charly, has completed the 2011 SFSF audit, pro bono. Having a certified audit allows SFSF to apply for available grants, among them, the Jeff Gordon Grant for which Grant Chairman Shawn Green has already applied. If chosen, SFSF will receive $15,000 from the Jeff Gordon Foundation to use in fulfilling its mission. SFSF thanks the anonymous CPA friend of Charly's.
Applebee's and Max & Erma's Update
Profits from the local area restaurant-fundraisers netted a total of $337 for SFSF. The events were held on May 19 (Applebee's) and June 23 (Max & Erma's). At the Applebee's Dining For Dollars Night, tickets for a 50-50 drawing and raffle baskets were sold, adding $352 more to the evening's profits; Deb Ward, 50-50 winner generously gave her winnings back to SFSF. SFSF thanks Applebee's and Max & Erma's, and those diners who participated in the fundraiser. Watch for additional restaurant fundraisers, and mark the dates.
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SFSF Board Members, Andrea Bucci and Susie Miklaski, man the raffle table during the Applebee's Dining to Donate night. |
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Our greatest natural resource is
the minds of our children.
~ Walt Disney
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SFSF grants total $220,000
Since May 1, 2011, the Foundation has helped 25 families and awarded $23,550 in grant money, bringing the total amount of family grants awarded to $172,940. The grand total donated by SFSF, including donations to The Cure Starts Now ($32,000) and St. Jude ($15,000), is $219,940.
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 May, June, July and August are:
- Clinton, age 6 - medulloblastoma
- Nathan, age 3 - desmoplastic infantile ganglioglioma
- Jayden, age 4 - PNET
- Chelsea, age 14 - gliomatosis cerebri
- Anonymous, age 11 - medulloblastoma
- Jorge, age 4 - ependymoma
- Anonymous, age 13 - choroid plexus carcinoma
- Logan, age 20 - pituitary tumor
- Dalton, age 3 - medulloblastoma
- Amari, age 1 - pilomyxoid astrocytoma
- Recus, age 12 - ependymoma
- Anonymous, age 3 - anaplastic astrocytoma
- Laela, age 5 - DIPG
- Anonymous, age 1 - medulloblastoma
- Kyle, age 14 - passed away Jul 2011, oligodendroglioma
- Tony, age 9 - bilateral thalamic glioma
- Diamond, age 7 - astrocytoma
- Kaylie, age 7 - DIPG
- Isabella, age 11 - pilocytic astrocytoma
- Emily, age 7 - DIPG
- Easton, age 7 - ganglioglioma
- Marissa, age 8 - pilocytic astrocytoma
- Kelsey, age 16 - astrocytoma
- Anonymous , age 6 - medulloblastoma
- Asher, age 2 - sarcoma
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SFSF St. Jude Marathon Weekend Team
grows...BIGGER, STRONGER, FASTER
The SFSF team, for the St. Jude Marathon Weekend, Dec 2-4, grows bigger, more daring, and hopefully, faster. The team is comprised of eleven members, pledging as a team to raise at least $10,000 for St. Jude.
Accepting the ultimate challenge and running the full marathon are: SFSF former Board member and two-year race director Kristin Van Euwen (second-year participant, one-time half-marathoner); and Collen Roth, Dana Mueller, and Amy Wilson, all SFSF friends and supporters (and all first-year participants).
Partcipating in the half-marathon are: SFSF president Emily Quayle (fourth-year participant and second-year half-marathoner); SFSF vice-president Sarah Smith (second-year partcipant and first-time half-marathoner); SFSF Board member Elizabeth Gedeon (second-time participant and second-time half-marathoner); SFSF Secretary Susie Miklaski (third-year participant and first-time half-marathoner); Sophie's aunt Leslie Farmer (second-year participant and first-time half-marathoner) and her friend, Jennifer Roncone (both first-time participant and half-marathoner). Another friend of Leslie's and Jen's, Krisit Hehl, cannot make the event, but is an official team member, and is actively fundraising for the team as she did last year.
All team members have registered as St. Jude Heroes, indicating that they are all not just running, but committed to fundraising, and hopefully reaping the more than monetary benefits of being a St. Jude Hero!
All members are seeking financial support. Follow the link to make a donation to the team, or to a specific team member (by clicking on the individual's name). By donating, supporters are helping to fulfill one of the missions of SFSF: of "supporting St. Jude, where Sophie was treated."  |
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School bells signal Childhood Cancer Awareness
It's September!! Summer fun is winding down and the kids are back in school...most kids, that is. Many of those 13,000 kids who are diagnosed with cancer every year are not back in school. Instead they are in hospitals undergoing treatment or life-saving surgeries, or at home recovering from a myriad of procedures and medicinal cocktails, or trying to rest comfortably as they spend their last days here on earth. With the excitement of going back to school, it's easy to overlook or ignore Childhood Cancer Awareness Month.
Cancer is still the number one disease killer of children from infancy to age 15. And although many advances have been made in childhood cancer survival rates over the last few decades, due to the lack of funding for research, many kids are still being treated with drugs developed in the 1960s. Most progress that has been made has come from increasing the combinations and/or dosages of the already-existing, toxic drugs, not from the development of new therapies. Sadly, 1/4 of all kids that are diagnosed with cancer, still die within 5 years of diagnosis.
Certainly raising money for research is important when it comes to finding a cure for childhood cancer, however, another critical step is awareness. Educating people about childhood cancer, its prevalence, and the devastation it causes on entire families and then empowering them to fight back is key in winning the battle against childhood cancer and someday finding a cure.
During the month of September, make it a goal to help raise awareness of childhood cancer. There are several programs in place already...just pick one and show support for those kids who are fighting the uphill battle every day.
- Fight Childhood Cancer by wearing you
 r pajamas!! PJamminfor Kids With Cancer is a program sponsored by the American Childhood Cancer Organization (formerly Candlelighters). It's easy to do and fun! Organize a PJammin Day at your work place or school and everyone who donates at least $1.00 can wear their PJs for the day. "Children with cancer can spend from months to years in the hospital dressed in their PJs as they undergo treatments such as chemotherapy, radiation and surgery" so what better way to show your support and join in the fight to beat childhood cancer than by organizing a PJammin Day to honor those thousands of kids afflicted by cancer. For more information, visit www.pjammin.org.
- Go Gold is another American Childhoo
 d Cancer Organization program in which participants organize a gold-themed initiative, "doing things your way, choosing your own theme, setting your own fundraising goal, and picking a time that works best for you." The ACCO has various "Go Gold" planning materials in addition to free gold ribbon stickers for every event. For more information, please visit www.acco.org/gogold. The ACCO's goal is to host at least 100 awareness events during the month of September. Help them reach their goal by planning an event!!
- CURE's Kids Conquer Cancer One Day at a Time is an initiative of CURE Childh
 ood Cancer with the goals of education and empowerment. Every day in the month of September, CURE will highlight a child within the CURE family who has been affected by cancer in the hopes of honoring and remembering the many children fighting this disease. In addition, money will be raised to fight back as each family participating will, with CURE's help, attempt to raise a minimum of $1000. The funds raised will be directed toward CURE's 2011-2012 research initiative: 11 specific research projects aimed at improving survival for difficult to cure pediatric cancers. To read more and see how you can help, click here.
- Global Leap For Life 2011gives people the cha
 nce to join a worldwide skydiving fundraising initiative - allowing them to "skydive for a cause" and raise money for cancer charities. The two charities that will benefit from this year's Leap For Life are Alex's Lemonade Stand Foundation and Strength For Life. In the past 2 years, Leap For Life has raised over $55,000 for cancer charities. To see how to participate, by either skydiving or donating, please visit www.leapforlife.org
- Chili's Create-A-Pepper to Fight Childhood Cancer campaign supports St Jude Children's Research Hospital each year by inviting guests to make a donation to create a custom pepper design.
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Grandpa Miklaski's Create-A-Pepper shirt, colored by Matt Smith, Sophie's uncle. |
In 2006, Chili's announced plans to raise $50 million over a 10-year period, and just 4 years into the effort, Chili's has already raised $30 million through its Create-A-Pepper campaign efforts. In addition to the ongoing Create-A-Pepper program, Chili's also designates one day of the year where 100% of the day's profits benefits St Jude. So, if you're not feeling too artistic, but are hungry, eat at Chili's on Monday, September 26 to support St Jude and their fight towards finding a cure for childhood cancer! For more information, click here.
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It is the greatest of all mistakes to do nothing because you can only do little -
do what you can.
~ Sydney Smith |
Uncle Charly and Aunt Dawn pay tribute
to Sophie at their wedding in Canada
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Front and back of the Miklaski wedding bookmarks flanking a picture of newlyweds, Dawn and Charly Miklaski, with Charly's parents, Frank and Susie Miklaski (the bookmark's creator). |
Charly Miklaski, brother of SFSF president, Emily Quayle, and his new wife Dawn, married on July 16, 2011, made a $750 donation to Smiles For Sophie Forever, in lieu of table favors. Wedding guests were given laminated bookmarks explaining their gift and telling of Sophie, The Foundation, and her rainbow. Since Charly, Sophie's godfather, and Dawn included all of their siblings and their spouses in the wedding party, along with five of their nieces and nephews, little Sophie had her part as well. Encana, both Charly and Dawn's employer, through its Encana Cares program, will match the donation.
The bookmarks are among the fundraising efforts of The Foundation. Custom-made and color-coordinated, the hand-made bookmarks are available by contacting Susie Miklaski at susie@smilesforsophieforever.org. Orders must be placed four months prior to the event.
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Competition promotes brain tumor awareness
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SFSF Board Members, Stacey Green and Mari Durbin, set up the SFSF display at Lorain County's voting expo to share the Bash and Dash with attendees. |
The SFSF Bash and Dash continues to merit recognition among the best charitable races in both Lorain County and the western Cleveland area, while promoting awareness of pediatric brain cancer. The Bash and Dash was among the top three "best charitable race" selections, in both West Shore's live well magazine and Lorain County's magazine, the pulse.
Area residents nominate the choices, and the top three compete at local expos. The West Shore competition was held on April 12, at LaCentre in Westlake, and Lorain County's voting took place at the Spitzer Center at Lorain County Community College, June 23. Although The Bash and Dash did not earn top honors in West Shore's competition, The Foundation is awaiting Lorain County's results, which will be published in the fall issue of the pulse.
SFSF Board members and volunteers manned displays at both expos, featuring photos of the children helped by SFSF, SFSF merchandise, and SFSF literature. Miniature birthday cupcakes were given to display-visitors in commemoration of the reason for the July 4 Bash and Dash ---Sophie's Birthday.
According to SFSF President Emily Quayle, "Being named among the top three in each competition continues to boost awareness of Smiles For Sophie Forever, but moreover boosts awareness of pediatric brain cancer --- one of our very important missions of The Foundation."
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SFSF Golf Outing blessed with sunny skies,
warm temps and generous participants
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Golf partcipants, Norm Riopelle, Margaux Hamilton, Derek Parks, Marc Quayle and Scott Wright. |
Sunny skies and golfing-perfect temperatures welcomed eighteen, foursomes who participated in the Fifth Annual SFSF Golf Outing, Aug. 22, at Atlas Valley Country Club in Grand Blanc, MI.
For the first time, cash prizes were awarded, several of which were generously donated back to the SFSF coffers, bringing this year's profit to $7,044.
Winners of Flight One were: Jacob Farmer, Brett Quayle, Mike Stone, and Matt Wiley; Flight Two winners were: Derek Parks, Marc Quayle, Norm Riopelle, Margaux Hamilton, and Scott Wright.
All participants received a complimentary sleeve of golf balls and approximately 20 raffle prizes were given away, including golf balls, a golf bag, Michigan football tickets, a rescue iron, and several restaurant gift certificates. Tie-dyed SFSF, commemorative T-shirts were available for purchase.
Following the day of golf and an awards presentation, golfers feasted on a buffet dinner in the Club House.
SFSF extends a special thank you to Bob and Kathy Quayle, Brett and Amy Quayle, and Leslie Farmer who sponsored, planned, and worked the outing.
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Charity sees the need, not the cause.
~ German Proverb |
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FYI: Tour of Homes
According to Board member Kelly Bova and committee head for the ALECPTA/SFSF Tour of Homes, the October event has been "put on hold." Please see SFSF website and newsletter for updates. |
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