Childhood Cancer Awareness Day is this Saturday

According to the American Cancer Society, more than 10,700 new cases of cancer will be diagnosed in children under age 15 this year.  And while rare, cancer is the second leading cause of death in children, exceeded only by accidents.  

We know how deadly this cancer is.  We know that it can happen to anyone, because it happened to us.  For us, we focus on pediatric brain cancer, as diffuse intrinsic pontine glioma is one we are all too familiar with.  On this national day of awareness we ask that you take a minute to do something that might help lead to a cure.

You could write a letter to a Congressperson asking for research funds.  You could make a donation to an organization (like Smiles For Sophie Forever, or St. Jude) that is committed to curing cancer.  You could raise awareness by telling just one person about Sophie and/or all the other children afflicted with cancer. And most importantly, you could say a prayer for the children battling cancer.

We also ask you to take a minute to give thanks for the healthy children in your life.  Look them into their eyes, hug them, kiss them,  tell them you love them.  Let them know there is nothing you wouldn't do for them.  Tell them you will be with them and there for them no matter what.  We learned first hand how precious life is, and how cancer changes everything. As parents we want to fix things, and make things better.  However, cancer is often times something that cannot be fixed.

As it is with life, one person can't do everything, but everyone can do something.  Please do something to recognize National Childhood Cancer Awareness day, this Saturday September 13, 2008.

God Bless.

Almost a Year...

I can't believe it has been 11 months since we lost Sophie's physical presence.  The next time that the 6th of the month rolls around, it will have been one year.  One year.  That sounds so long.  

I can't believe it.  I want the days to stop going by.  

I want to go back to last year. Will the pain ever go away?

Will I ever not feel angry when I hear a mother or father "yell" or raise their voice at their child, because I long to tell them how blessed they are that their child is still with them?  Will I ever stop feeling guilty because I couldn't do anything to help Sophie?  Will I ever have a restful night's sleep? Will I, will I, will I...

These are the questions that continue to flood my mind as I try to deal with the grief of losing Sophie.  I don't want another family to ask the questions I ask.  Recently I joined the Yahoo DIPG group.    Somehow I hope to be able to help other families fighting this battle, and once we have our application process finalized, it will be a great way to communicate our support to families.  However, the contact that I have had with the families currently faced with a DIPG diagnosis, makes me so sad.  I feel so helpless because most of the parents are in the same shoes we were in 2007.  They are searching for answers and there are none.  They are asking questions to doctors, and to themselves, and there are no answers that can help them.  They are becoming all too familiar with words and phrases like , protocols,  medi - ports, blood counts, palliative care, relapse, steroids, clinical trials, withdrawals, MRIs, sedation, NPO, and so on and so on.  I feel their pain in such a deep way and I long to do something; something, so one day they won't feel how we feel every day.

I've been getting out the Rubbermaid tubs to make the change from summer clothes to winter clothes in Sarah's closet.  These "jobs" that I have, bring back so many memories as I pull out each outfit that Sophie used to wear, and I can vividly remember a specific time that she wore it.  Sarah is reminding us more and more of Sophie each day.  So many people tell us how much she looks like Sophie, and her personality is similar as well.  She is very shy around new people, which is how Sophie always was.  She repeats old sayings that I used to say with Sophie, and she sounds just like her.  The other day she was out with Marc and she called me on the phone.  I couldn't believe how much she sounded like Sophie.  I instantly thought of the time when Sophie was two, and she and Marc called me while I was out running errands.  I sang "Twinkle Twinkle" to her the entire drive home, and when I walked into the house and upstairs, she was falling asleep in Marc's arms as I sang.  

Sarah plays with Sophie's old toys, and begs to watch video after video in Sophie's Dora collection.  While Sophie was sick, TV was what she loved, and I believe she collected over 30 Dora DVDs during that time.  I remember which ones she liked the best and how she would sing along to the songs.  I hate that Sophie is not here to play with Sarah.  I can't even begin to imagine the fun they would have with each other.  

The other day I needed a box to mail a package, and the biggest one I could find in my stash was one addressed to "Ms. Sophie Quayle".  I had saved it from last year after Sophie received a collection of toys in the mail.  Those little things are so hard.  And they happen all the time...each one as hard as the last.

So I can't say it gets easier.  The grief is a part of me.  Something I will always have.  Some days I handle it better than others, but it's hard to explain , or to understand unless you've experienced this loss.

We continue on with the foundation channeling our grief in a way to somehow, someday help families and find a cure.

We want to thank our supporters who came out to the golf outing in Grand Blanc Michigan on August 18.  It was a gorgeous day, and everyone had fun.  We gave Smiles For Sophie Forever bracelets to each of the participants, and it was touching to see so many men (and women) wearing their pink bracelet at the end of the day.  It means so much to see people showing us their support by wearing their bracelets.  We notice them, and it lets us know you are still with us in this journey, 18 months later.  Thanks to Marc's Mom Kathy, and Dad Bob, and brother Brett and sister-in-law Amy for planning and organizing this event.  

Michelle Redfearn and Chris from Deluca's Place in the Park, hosted a delicious steak fry for the foundation on Saturday August 30th.  Thank you Michelle.  The steaks were delicious and the company was great.  Thank you to those of you who were able to attend.  We are so excited that Deluca's will be the location for our winter 2009 fundraiser.  More details will be coming soon.

Tamara and Brian Ekis and their boys Colin and Garrett (parents and brothers of Grace Ekis) made the drive from Pittsburgh for the steak fry!  It was great to see them and refreshing to talk to a family who honestly understands.  Tamara was able to share Grace's story with some of the people in attendance, and I think it helped show that these are real girls, real daughters, who were once here, but who were taken from this Earth after their battles with DIPG.  They are such a nice family and one I wished we could have met in a "normal" situation.  Their boys were so great, and Sarah had fun with them!  I mentioned earlier how shy our Sarah is becoming, but the Ekis boys won her over with no efforts.  I was impressed, as I didn't know how Sarah would react to teenage boys.  She was laughing and tickling them, and they were tickling her.  It was sweet to see.  I know they were great big brothers to Grace.

We are in full swing with the planning of the 2nd Annual Fall Festival here in Avon Lake, OH.  

A full day is planned with a wide variety of crafts, activities and performances available for children age 2 and up. Admission for each child is only $10.00 and the event runs from 11-4. There will be food for sale, and a number of vendors on hand to sell their creations.  We will also be a feature in the Avon Lake homecoming parade to be held just prior to the start of the festival.  If you would like more information, or would like to volunteer, sponsor, or sign up as a vendor to sell, please contact Elizabeth Gedeon at gedeon4@oh.rr.com.

We are also still selling the Macy's Shop For A Cause coupons.  Please see the Smiles For Sophie Forever website for more information.  If you are willing to sell these coupons to your friends, family and/or co-workers, we can send you some to sell.  They are only $5.00 and entitle you to 10% or 20% off your purchases (some exclusions apply) all day September 20th at any Macy's across the country!  ALL the proceeds go to our foundation.  Macy's will not have their usual 15% off coupons in the paper that week end.  Please contact us for more information.

I sat and watched Stand Up to Cancer on Friday night.  I thought there was some very important information included about how we are all affected by cancer in some way. Obviously some of us are more closely affected than others.  I did think that not enough was said about cancers (like DIPG) for which there has been NO progress.  Hopefully some of the millions of dollars that was raised will be allocated for pediatric brain cancers.  I was thinking how valuable it would be to DIPG research if we could find someone of celebrity status to promote our cause.  So many people still have not heard of DIPG and it's grim prognosis.  We need to hear about it as much as we hear about other forms of cancer so that some progress can be made.  Unfortunately TV and radio time is expensive, and hard to come by.  One day when I feel like I have a handle on the logistics of running a foundation, I will spend some time contacting celebrities, asking them for their help.

I realize that we have many people who follow our website from the Cincinnati, Ohio area, and so I thought I would share with you an opportunity to help raise funds for pediatric brain cancer.  Ironically enough, they was a little girl named Sophie who was from the Cincinnati area and died of a different type of rare brain tumor.  Her family is holding it's second "Sophie's Angel Run" on Sunday, September 28 at 1:00 in Bridgetown, Ohio.  Also, ironic is the starting location of the race - St. Jude Church in Bridgetown, OH.  You can visit their web site to read more and to register for the event.  It is www.sophiesangelrun.org.  The Meinhardt family drove up here to Avon Lake for our race on July 4th, and we will be heading down to support them in their endeavor. It would be great to see some of our old friends from Cincinnati at the event.

Well, we continue on in this journey, reflecting on where we have traveled the past two years. We have had our share of obstacles, which have come and gone, but the one thing that has remained is our faith in God, and the support of our family and friends; for that we are forever thankful.

Below is a youtube link to a slideshow of the race.  I'm disappointed with how it turned out because it is so blurry.  Somewhere in converting the format, we lost a lot of detail.  Never-the-less, some of the pictures are cute. One day, I will fix it.  One day...

I saw this somewhere, and I thought it was worth sharing.  

"God, please give me patience to deal with my blessings."

God Bless you all.

Steak Fry!!

You’re Invited!!

What: Steak Fry for Smiles For Sophie Forever

Catered by Deluca’s Place in the Park
There will be kids activities too: bounce house, games, etc

When: August 30, 2008 at 3:00 p.m.

Where: Michelle Redfearn’s
2821 North Hayes (Centennial Park off Detroit)

Avon, OH

Cost/Donation: $25 per person includes (proceeds to benefit SFSF):
14oz strip steak, baked potato, salad, roll, and beer

$5 kids option: hot dog, chips, and drinks

Deadline: Headcount and payment needed by Thursday, August 28th

Please mail checks to:
Smiles For Sophie Forever
31722 Leeward Court
Avon Lake, OH 44012

Feel free to pass this invitation on to family and friends!!

For more information, please contact Michelle at redfearn_michelle@yahoo.com

Time Marches On

I feel like I start each post apologizing for not updating sooner. The 6th of August came and went and I couldn't update. As always, I have been meaning to. Usually my excuse is time, but this month when I sat down to write, my thoughts were those of despair and sadness so I have been putting off writing.

We're approaching the one year anniversary of Sophie's death. I cannot believe how fast time goes by. I still say it seems like I haven't seen Sophie in many years, while at the same time I remember every detail about her as though she was just here. This time last year was not a good time, as Sophie's cancer was progressing fast and she seemed so helpless most of the time. Labor Day was the last time I heard her voice. It was very slurred and hard to understand, but at least she was talking. Then one day she woke up and could make no sound. Thinking back to those times pains me because I still wonder and wonder about how scared she was.

It still is not getting any easier. I long for her, to hug her, to smell her, to hear her. Many times I hold the nightgown that she was wearing when she died close to my face. I used to be able to smell that and feel close to her, but after 10 months, the "Sophie smell" is going away and all I have left is the nightgown. They tell us that grief is a process and that it takes time to heal. I don't know if I believe that. Right now, time is doing nothing but making me miss her more and more.

I got a post card in the mail from Bob Evans. Sophie was part of the birthday club. It was wishing her a happy birthday and said to bring the postcard in for a free kids meal. That was really hard to receive. It symbolizes how life goes on for everyone else, but my world without Sophie stands still.

It's hard to come to terms with the fact that this fall would have been such a big year for her. Sophie would have been starting kindergarten and she was so excited to ride a bus to school.

Earlier this week the Avon Lake Early Childhood PTA was having an ice cream social. I went thinking I would be okay. I knew it was going to be at the "Lake House" which is where the picnic was that we all went to the day Sophie died. I had never been in that building before the picnic, and obviously hadn't been in there since. That building was the last place Sophie went, and it was where she ate her last meal. I had to get out of there before the sadness overwhelmed me. It's those things that I can't imagine not feeling or "getting over" one day.

I was driving with Sarah in the car this evening and I told her to look out at the pink, red beautiful sky and sunset. I then said "Sophie did that." I know that is something hard for a two year old to understand, but we talk about Sophie all the time, so I didn't think it would be a big deal. Sarah said to me "Fofie, heben. Come here now." And then she started crying saying, "Mommy call Fofie, Mommy call Fofie, come here now, no heben, no Jesus." I was so sad. Sarah wanted to see Sophie and of course I couldn't explain why she just couldn't "come here now". I think about how much fun those two girls would be having and I'm saddened by the loss in Sarah's life, especially because it seem like she is finally starting to realize that "Fofie" once really was here.

Many of you know of my pregnancy that ended at 15 weeks in the beginning of June. I didn't mention this on the blog before because I am not one to try and bring more attention to myself, but I bring this up because I realized that so many of you were so kind to me and sent such nice cards and showed your support. I feel like I never thanked many of you for your support during yet another difficult time. I told Marc not many people have 3 children in heaven like we do. (I miscarried a baby at 12 weeks when Sophie was just 7 months old.) When I feel sad, I pray to those little saints and ask them for guidance. I know that Sophie is an amazing big sister to those in heaven with her, and that makes me smile.

And when I'm feeling sad, I remind myself how blessed I am to have my family and so many caring friends in my life. One time my sister said to me, "you've met some awesome people in Ohio" and it's true we really have. I know that surviving this ordeal would be a lot more difficult without people who surround us with their love, and for that I am thankful. So, it's not all doom and gloom here.

We are excited to announce the 2nd Annual Fall Family Festival that will be held here in Avon Lake on October 4. Please click on "Fall Festival" under Upcoming Events on the website to read more about it. Some amazing girls are putting this together in record time, and it is sure to be loads of fun for the kids. I remember how much Sophie liked it last year. Even though she could not longer talk, eat, smile or support her body weight, I will never forget when my Mom told me, "I could tell Sophie was smiling by looking in her eye."

Within the next week or so, we will be selling 20% off coupons for Macy's. They have an event called "Shop for a Cause" and this year the Smiles For Sophie Foundation will be participating. It is really easy. All you do is buy a shopping pass from us for $5.00 and we will give you the pass to use at any Macy's in the country and you will receive 20% off your purchase all day. Macy's will be having some raffles and prizes of their own at each store. It's a quick way to donate to our foundation and get something back in return. Amy Schmidt will be heading up this fundraiser. She will be accepting cash or checks for payment. If you would like to purchase a shopping pass, or if you would like to help sell passes, please contact her at schmidthouse5@oh.rr.com or 440-930-2447. (Please see the SFSF website for more information.)

I've been working on putting a slide show together with pictures from the race. So many generous people have given me CDs with hundreds of pictures on them. I am trying to wean out duplicates and put them in some sort of organized fashion. When I do, I will post them on the website, or on this blog.

We still have race t-shirts available for $5. We ordered a few more because many people said they wanted one. Some people have actually purchased them, but we haven't heard from some of the others. So, if you want a t-shirt from the inaugural Sophie race, please email or call Kristin at pkvaneuwen@oh.rr.com or 440-781-1179.

Thank you all for your continued support and prayers.

2008 Race T-shirts!

We know there were many people who registered late or who just came for the after race activities, and didn't get a t-shirt, but were interested in one, for themselves or for friends. Well, we ordered more!!

At this point, we have talked to or left messages for all those who were actually on our list for t-shirts, however, not all of those are still interested. So, that means there are t-shirts available for anybody...first come, first serve!!

The t-shirts are available for a minimum $5.00 donation and there are still a variety of sizes left, except XXL. If you are interested in a t-shirt from our first annual Smiles For Sophie Forever 5K Run/1 Mile Walk, please contact Kristin Van Euwen at pkvaneuwen@oh.rr.com or 440-781-1179.

Thanks so much for your support!!

Love,
Sarah

Happy Birthday Sophie!!!!!

Wow is all I can say! For those of you who weren't with us on Friday to remember our little girl, I want to take a moment to tell you how awesome the event was.

The weather was perfect, and over a thousand people of all ages came together to run, walk, eat, and/or play in honor of our Sophie who would have and should have turned five that day. We don't have the exact amount, but it is safe to say that close to $50,000 was raised through the dedication of so many different people. It truly was amazing, and we couldn't have asked for a better way to kick off our Smiles For Sophie Forever fundraising efforts. Equally important was the fact that the children in attendance had fun. That makes me smile, because I know that is something that Sophie would have wanted. She loved birthdays, parties and decorations. The fact that we raised money for our cause and had fun doing it is what we want our foundation to be known for.

Our next step now, is to develop our application process so that we can begin providing financial support to those families fighting the battle we fought. Our plans are to form a board of directors so that we may collectively decide what families and organizations will be given money so that we may fulfill the mission of Smiles For Sophie Forever.

We want to express our gratitude to the many people who have helped us these last few months to get the foundation off the ground and plan our maiden fundraiser, but most importantly we want to thank God for giving us the strength to continue on this journey by giving us the support of our family, friends, and even strangers. When I stopped periodically throughout the day to reflect on just how awesome it was, all I could think about was how inspiring it is to see the good in so many people.

There are so many people we have to thank, some we know, and others we don't. I am including below the "thank you" that we wrote for the race program, as a way to express the gratitude we feel.


We wish we could say a personal “thank you” to each and every one of you who made today’s event possible. We know we could never have pulled this off without the dedication, love, and support of so many. Nor would it have been successful without all you runners, walkers and children who made this event part of your 4th of July celebration. Thank you to all of our supporters.

We would also like to thank our family and friends, who supported us from the beginning, when the thoughts of this event were still just forming in our heads, and who continued to support us throughout the months leading up to today. We are grateful to all of the volunteers who made sacrifices to attend the planning meetings, made phone calls and wrote letters on our behalf, and worked on the various race planning committees, as well as those who worked today.

We’d like to say a special thank you to Kristin Van Euwen, who stepped up to the plate and volunteered to be the race director/event coordinator. Since this is our first annual run/walk, it sure did take a lot to make it happen! Kristin, and her husband Pete, who diligently worked on the legal paperwork to make us an official non-profit organization, have been dedicated from the get-go. We certainly would not be here today without all their hard work.

Finally, we express our gratitude to all of you who took the time to create a fundraising page through activegiving.com. We appreciate your dedication to our cause and your efforts to solicit donations from your families and friends. We were astounded by the response this year, and next year hope to meet our goal of $50,000. We are also grateful to those of you who made personal financial contributions to the foundation. We cannot wait to begin awarding this money to families and research facilities in an effort to fulfill our mission.

Today’s event was more than we had imagined and we owe it to all of you. Thank you from the bottom of our hearts. We know Sophie is smiling down on us all from her special place in Heaven!

In addition to the race and the kids activities, we had some special touches that completed the day. We sang "Happy Birthday" to Sophie before the race. I know Sophie heard us loud and clear, and I know she was smiling when she heard Daddy singing in the microphone!

Some local florists donated colorful carnations that a few volunteer girl scouts passed out to the runners and walkers before the race. The race course went past our house, and we asked the participants to drop their flowers on our grass as a memorial to Sophie. Over 500 flowers were placed on our lawn and it was beautiful. (My Mom, Dad, and sister and I took the carnations to the cemetery and placed them in front of Sophie's headstone.)

There was also a group of local high school students who came together to play their instruments in our driveway as the runners and walkers passed. I wasn't there to hear them, but have heard from many people how great they sounded. After the race, the participants were invited to enjoy a cupcake from a couple local bakeries who donated them. There was a DJ, a ton of activities for kids, and food for sale. It was quite a sight as we came together to "race towards FREEDOM from pediatric brain cancer." All in all it was a huge success, and I've heard great things about the event from many people.

This is a link to a short video recap of the day's events created by my friend Andrea. I was told that it took over 4 minutes for all the participants to cross the start line. Pretty unbelievable for a first time event.
http://app.talkfusion.com/talkFusionStudio/view.asp?221888_1827609

I know there are many of you who like to keep on giving and making a difference. We have the perfect way for you to do so. If you haven't already registered for the Prayers From Maria Foundation 5K and 1 Mile that will be on July 12 in Bay Village, you can still come to the event and register that day and continue to raise money to find a cure. You will find more information on the www.prayersfrommaria.org website. Hope to see you there!

A friend of mine sent me a card saying that Sophie was like the sparkler she would light on the 4th of July...a beautiful light enjoyed by all who see it, but a light that would be gone all too soon. I couldn't agree more, and I am grateful to those of you who sent us cards and emails wishing us peace on Sophie's birthday. It is comforting to know that we are loved and thought of by so many.

I have to say that Sophie's birthday ranks up there in the "hard days" category, even though every day is a hard day when you've lost a child. I was able to put on a strong face for the day, and the business was a needed distraction, but as always, the quiet moments alone were the most difficult. I'm grateful for all that has been done in Sophie's honor, but I must admit, I'd trade it all in a heartbeat if I could have my little girl back.

Sophie I know you were with us yesterday as we celebrated your birthday even though we couldn't "see" your beautiful face. I could feel you and see you in the faces of so many wonderful people. Your birthday celebration was awesome, and the only thing that could have made it better was having you there with us.

So many people came together because of YOU. You are the reason that people feel compelled to give, compelled to do something to find a cure and to help other families. Happy birthday sweet Sophie Girl. I love you, I miss you, yet I find some comfort knowing that your 1st birthday celebration in Heaven was even better than the one we had here, so it sure must have been something spectacular!

Updated race information!

Hi everybody!

Kristin, the race director, sent out this information via the Active email option, however we don't think everybody got the email. So, we're posting this information here as well, so hopefully everybody will get it.

We are so excited about the awesome turn-out and we can't wait until Friday! See you there!!

Love,
Sarah

Early Packet Pick-up:
(We will take late registrations during these times too with an entry fee of $25.)

Wednesday, July 2, 2008, 6-8 p.m.
Dairy Queen
33720 Walker Rd
Avon Lake, OH 44012

Thursday, July 3, 2008, 12-2 p.m.
Swingos Grand Tavern
32858 Walker Rd
Avon Lake, OH 44012

If you are unable to pick up your race materials early, pre-registration check-in will be from 8-8:45 a.m. on July 4, 2008. We will also be taking race day registrations during that time, for an entry fee of $25.

Parking:

If you live in the surrounding neighborhoods, we encourage you to save gas money and walk or ride your bike over to the park. There are approximately 200 parking spaces for use at Walker Road Park. At 8:45 a.m. or when the Walker Road Park lot is full (whichever come first), the lot will be closed. Holy Spirit Catholic Church (410 Lear Rd, Avon Lake, OH 44012) has graciously allowed us to use their parking lot. Avon Lake City Schools has donated a bus and driver to shuttle racers to and from Walker Road Park. The shuttle will run from Holy Spirit to Walker Road Park from 7:30 a.m. until 12:15 p.m. The bus will not run from 9-10 a.m.

Kids Activities:

Just a friendly reminder that all children participating in the activities after the race must make a donation and have a waiver signed. If the child is registered for the race, the wristband is included, but we still need a signed waiver. We have many exciting activities planned: bounce house, animals from the Lake Erie Nature and Science Center and Columbus Zoo, face painting, sand box, cotton candy and snow cones, just to name a few! Hot dogs and drinks will be for sale for a small fee.

Door Prizes:

Carefully check out your goodie bags to see if it contains a winning door prize postcard! All prizes will be distributed on race day. We will be giving away some of the following items:

2-month Curves membership, Cleveland Browns gift package, gift certificates to: Winking Lizard, Playground World, First Watch, Copper Cup, Ironwood Cafe, El Metate, Rush Inn, and Absolute Dance, overnight stays at: Holiday Inn Select City Centre, Sheraton Suites Cuyahoga Falls and Crown Plaza Cleveland City Centre, Cleveland Indians tickets, a NASCAR lunchbox with Stewarts Electronics gift certificate, a spa package at Brown Aveda Institute, Agave gift card, 1-year subscription to Travel & Leisure and Food & Wine, Cleveland Zoo tickets, Cleveland Orchestra tickets, Ipod, autographed Z Cavaliers jersey, Cherished Teddies figurine and watch set, Dr Seuss books and stuffed animals, a custom decorated cake from Crazy Cakes and even more!

Hotel deadlines

Hi everybody!!

This is just a reminder that the hotel room blocks that we have set aside will be released this week. So, if you are planning on participating in the events on July 4 and think you will want to stay overnight, please call one of the two hotels ASAP. The hotel information is on Sophie's website on the events page...scroll down towards the bottom for locations and phone numbers.

The two hotels are:
Courtyard Marriott (JULY 3 ONLY): rooms need to be booked by JUNE 19
Hampton Inn (JULY 3 and 4): rooms need to be booked by JUNE 18

There are of course other hotels in the area, but these are two of the closest that had some availability and were willing to give us a discounted rate.

Thanks so much to everyone that has registered and/or donated! For those of you that haven't...you still have time!! Please visit http://www.smilesforsophieforever.org/ to register and/or donate!!

Love,
Sarah

Happy Anniversary?

Well the 6th of each month is normally a day I dread. I start thinking about it the night before and continue to think about it throughout the day. I hate that time keeps on going without Sophie. I long to be able to go back in time and change the course of events. I know I can't so the 6th of the month is often even more heartbreaking than all the other days when my heart aches of missing Sophie, and I replay the events of the day she died, which was now 8 months ago.

Today is different. Today I miss her as much (if not more) than I always do. Today though, I long to give her a hug and say thanks...why? Because I am so excited to say that just today we received the letter from the IRS stating our foundation paperwork has been approved, and we are now an "official" non-profit foundation!!!!! I know Sophie had something to do with us receiving this news today. We are more than excited. So in a way, today is a "Happy Anniversary." We owe a HUGE thank you to Peter VanEuwen, the attorney (and friend) who provided us the necessary help and guidance to get the paperwork submitted correctly, and in a timely manner. We are so blessed and grateful to know Peter. Without him, we might very well still be spinning our wheels, knee-deep in confusing paperwork!

The planning for our race is coming along great! We realize we have less than a month until the big day, and there is still work to be done, but with all the effort from so very many willing volunteers, we know it is going to be awesome!

In addition to the race (run and walk) we will be having some kids activities to entertain the little ones after the race. Our "activities committee" has been working hard at planning some fun things for the kids to do, and here are just a few of them: animals from the nature center, face painting, balloon art, magic shows, cotton candy machines, snow cone machines, the Life Flight helicopter, a giant bounce house, birthday cupcakes, and more!! All of this will be available to children who make a donation to the foundation in exchange for a wristband. Parents must accompany their child(ren) so that a waiver can be signed before the activities begin. For those children who have registered for the walk, or run, the wristband will be provided as part of the registration fee, but the additional waiver will still need to be signed on race day.

Those who have pre-registered for the event (those received prior to June 27) will receive a goodie bag, t-shirt, birthday cake, water, fruit, bagels, and 2 entries to the live drawing which will be held after the race. So far we have some cool things to give away, and I will update the blog in the next few days, once all the items have been collected. Here is a sneak peak: gift certificates to local restaurants and stores, gift baskets, tickets to an Indians game and more!

Those who register between from June 28 and July 4 will pay an additional $5, and unfortunately, we cannot guarantee the perks of "pre-registration" to those who enter after June 27.

There will be a DJ to provide music, as well as live music from some talented local high school students. We also will have fresh squeezed lemonade and jumbo grilled hotdogs for sale, in addition to our "Smiles for Sophie Forever" car magnets and headbands.

Today, with the help of so many people dedicated to our cause, combined with our activegiving.com campaign, we have raised over $10,000 for the event. Our goal is $50,000 and to some, that seems crazy, but we set that goal with the motto "Shoot for the moon. If you miss, you will land among the stars." in mind. We still have time to raise additional funds, so if you feel called to do so, please visit http://www.active.com/donate/SmilesForSophie

In the works are some incentive prizes for individuals and/or teams who have achieved various fundraising goals.

Each member of a team, or individual who meets the following amounts, will be entered into a drawing for the prizes listed below. And they are pretty cool prizes! These are just some of the things we have so far, and more may be added as we receive them.

Fundraisers raising $2000.00 or more will be entered into each of the following drawings:

1. a Columbus Zoo family entertainment pack for 7 including a behind the scenes tour of the Jack Hannah Animal Promotions Complex valued over $1000.00
2. steak and lobster dinner for 8 prepared at your home by the chef from Delucas in the Park valued at $1000.00

Fundraisers raising at least $1000.00 will be entered into the following drawings:

1. 4 Indians club seat tickets valued at $440
2. a one night stay for two with breakfast at the Marriott Cleveland East

Fundraisers raising at least $750.00 will be entered into the following drawings:
1. Charles Scott Salon and spa $125 gift certificate

2. Little Gym of Avon Birthday party gift certificate valued at $225
3. I-Pod Nano with case

Fundraisers raising at least $500.00 will be entered into the following drawings:

1. an overnight stay for 2 with breakfast at the Cleveland Hampton Inn
2. one of 2 Sony mp3 players
3. one of 2 $100.00 Little Gym of Avon gift certificates
4. autographed Victor Martinez baseball

If you haven't set up an active giving fundraising page, you still have time, and your support will mean so much. If you need help creating, customizing, or updating your page, feel free to contact my sister Sarah at smiklaski@cox.net. She will be glad to help.

Our next planning meeting will be held at Swingos Grand Tavern in Avon Lake on Tuesday June 17, at 7:00. If you have ideas to share, all are welcome as we put all the final details into place.

If you are interested in helping the day of the event, please contact pkvaneuwen@oh.rr.com . We are in need of many volunteers, and would love your help. If you are volunteering, you can still participate in the event if you wish to do so.

More information will be coming soon regarding early packet pick-up.

Thank you to all of you who have continued to send thoughts and prayers our way. Please take a minute to pray for the families who are fighting the battle of pediatric brain cancer this very moment.

With your continued help, and support, we hope one day, the battle for these families will be a victorious one. We cannot wait to begin allocating the Smiles for Sophie Forever funds to families fighting this battle, as well as organizations like St. Jude who are working to find a cure for pediatric brain tumors.

Thank you again to all our supporters. God Bless you all.

How long is 7 and a half months?

I know today is not a "significant" date as far as milestones go for living without Sophie.  This month I had decided not to post on the 7 month anniversary just because I wanted to wait until it had been 7 and a half months, as a reminder of how short 7 and a half months is, and that Sophie only lived 7 and a half months after being diagnosed.  (Obviously it hasn't quite been 7.5 months just yet, but I wanted to post anyway.)  Many people say to me that they can't believe she's been gone 7 months already; like the time has gone so fast.  There are times when it seems that way to me.  But for the most part, I feel it, and remember it like yesterday. 

Think back to what you or your loved ones were doing on October 6, 2007.  If you, or your loved ones were given Sophie's diagnosis on a day in your "normal lives" of October 6, today you/they would be suffering like Sophie, and would be on your death bed paralyzed in every physical sense, and about to take your last breaths.  Most of us can't even remember what we were doing 7 and a half months ago.  But a DIPG diagnosis changes that.  You count every day. Not wanting to get to the 9-12 months past diagnosis knowing that the end may be near.  Then suddenly you take a turn for the worst, and then you are gone.  That is what DIPGs do, and that is why a cure needs to be found.  Everyday I remind myself that 4 years, 3 months, and 2 days is WAY too short of a life time.  My prayer is always that something good might come from Sophie's  pain and suffering.  Right now, we focus our efforts on the foundation, easing the burden on other families and raising money to search for the cure.

I want to say thank you to all of you who commented to my last post describing Sophie's last moments with us.  From all the comments and emails, I realized just how touched so many people were.  Many people have commented that it made them more aware, more appreciative, more dedicated to the cause.  When I write these posts, I do so with the goal of having something good come out of it.  I don't do it as therapy for me.  I don't do it so people we feel sorry for us.  I do it to educate the people about the disease that took Sophie's life, and to encourage people to listen to the calling to help try to save another child's life.  I thank those of you who show us your support by responding to the blog and encouraging us to continue to share the deep emotions that make this storm so real to the many of you who admittedly say you can't even begin to imagine living this nightmare.  And we also want to say thank you to those of you who have made positive comments about the new site.  Just the other day, a friend of mine, said she sometimes goes to the site just to listen to the song and look at the pictures of Sophie.  Again, we are honored that you take the time to comment.

Race planning is coming along.  Soon I hope to post all the details for the kids activities as well as some of the door prizes and fundraising incentives.  All of our committees have been working so hard to make this an unbelievable event; not just for the runners/walkers, but also for the children.  After all, it is in a sense a "birthday celebration" and I know Sophie would want the kids to have fun.  We have received many race registrations, but are still looking for so many more.  I wasn't surprised to see my Mom, Dad, sister and brother among the first to register.  They have been there to support me through thick and thin.  I was pleasantly surprised (and also very excited) to see the names of people who I haven't met registering.  And I have to say I was surprised that many of you who have told me you plan on participating haven't yet registered.  (You know who you are =0)  and it only take a few minutes.)  As Kristin and Katy's Team Fundraising page is entitled "DIPG - Don't Ignore, Please Give.  I encourage you to embrace that motto and give to the cause that could one day save a life.  

Magnets are still for sale on the site, for those of you who are interested in purchasing one for the cause.  If you live in near my Mom in Trenton, MI, or here in Avon Lake, near me you can now purchase them directly from one of us.  My sister is in the middle of a move to Washington D.C. so she has temporarily given us the supplies to manage while she gets settled.

I have to say that I have some sad news.  Little Ashley Boross lost her brain cancer battle this morning.  Everytime I hear of another child dying, my heart aches.  It aches for the parents left to grieve, and it aches for the life lost and what could have been.  Please remember Ashley and her family in your prayers.

I also have some heart warming news.  My good friend Jen has a daughter, Maria, who is 3 months older than Sophie.  This past month, her preschool - Red Bell - in Plymouth, Michigan held their second annual trike-a thon for St. Jude, and this year they decided to donate the money to St. Jude in Sophie's name.  We were touched, and honored.  The students raised $5360.00.  A friend of mine once told me that she read that it costs St. Jude 1.2 million dollars to run their facility for ONE day!  We know we were so blessed to receive the care for Sophie at St. Jude.  We thank the owner of the preschool, its staff and these children and their families for all their efforts, and hope they fully understand how every little bit helps a family at St. Jude with a child battling cancer. 

I spent last week up north at my parents cottage with Mom, Dad, sister Sarah, Baby Zach, and my little Sarah.  It was nice to get away, but strange being there as it brought back so many memories of the times we spent there with Sophie.  Sophie loved "grandpa's cottage"  and so it was hard to be there without her.  The week was a little rough, and then this Mother's Day was certainly a hard day for me.  Probably the hardest "holiday" we've had.  I could clearly remember every Mother's Day that I spent with Sophie, and couldn't get it out of my head that I couldn't give the little girl, who first called me Mom, a hug.  I do want to say thank you to those of you who thought of me on Mother's Day.  I read each and every card and email and thanked God for putting so many good people in my life.  My Mom bought me a rainbow/star garden spinner that I love, and Marc's sister Leslie made a contribution to St. Jude in my name and Marc's Mom, Susan Turner, in Seattle made a contribution to Smiles For Sophie Forever. Those were the best gifts.  So thank you to all of you who showed your love and support.  I truly appreciate it.

While my sister was here, I took advantage of her awesome painting skills, and I helped her paint my guest room a couple crazy bright colors and then I put the rainbow comforter I found on the bed.  I wanted to have a place that will always be "Sophie's Room".  I ordered some quotes to put on the walls.  These are the 3 I chose.  I think they are all so fitting and serve of the reminders we need every day.

"The work will wait while you show the child the rainbow, but the rainbow won't wait while you do the work."

"The soul would have no rainbow if the eyes had no tears."

"Somewhere over the rainbow, way up high, there's a land that I heard of once in a lullaby."

Every time I make a post, I never intend for it to be so long.  But once I start writing, I realize there are so many things I would like to share. Tonight I am too tired to even proof read, so please ignore my mistakes. I will leave you with this last story - it's a comment that we received on the blog.  I know many of you read through the comments, but for those of you that don't, I thought the shoes story, and the relation to all the "shoes" we will see on race day was worth posting for everyone to read.  It made me cry, as I related too well to the mother's sentiments. Pray for little Isabella.  

Marc and Emily,
I don't know any other way to get an email to you, but I wanted to share a story with you that a friend of mine shared in her blog. Monica Battle's 2 year old daughter, Isabella, has leukemia. They've been fighting since December 2007. I've kept up with Sophie's blog since the beginning and I'm keeping up with Isabella's. Monica shared a story in her latest that I think would resonate with you, especially Emily. I find that her observations and attention to detail match yours (you once talked about taking a walk and noticing a leaf or pinecone that Sophie would've liked or picked up, I remember that fine detail in your writing). And after you read this post I hope that you take a look at Sophie's shoes and thank the Lord that he blessed you with her, a Saint. She surely blessed my life here in Cincinnati, and I share her story whenever I can...perhaps even at your race in July everyone can look down at their (racing) shoes and see that by running they are contributing to such a wonderful cause, but most importantly to remember such a beautiful, beautiful girl.



"Isabella is sleeping and I am thinking…thinking…thinking…. I hope that you all are well and that your week is off to a good start. I found out today that we may be heading home as early as Wednesday this week. We go for a full body CAT scan on Wednesday morning and if her counts continue to rise we’ll be discharged. Isabella is still on three antibiotics and her regular anti fungal but she is feeling good. I’m not sure yet how much time we will have at home in between rounds, I’m hoping for another week. Thanks for the continued support for my family. It means so much to all of us.

Tonight I want to share a story with you.

Shoes
While shopping for a new pair of summer sandals for Isabella (she has outgrown her other ones since we’ve been here. Actually, she is growing like a weed), I over hear a woman talking about another child’s shoes. She mentions that she wished her kids could keep their shoes so clean. I politely smiled all the while silently thinking, get down on your knees and thank the Lord your children are able to get their shoes dirty. What I wouldn’t give for Isabella’s shoes to be filthy. Why? Because that would mean she could play like normal kids, she could get dirty and not worry about her counts, not worry about potential life-threatening bacteria … just play. Then I realized I needed to get down on my knees and thank the Lord. I know there are countless parents out there who would give anything to have their children’s shoes be “clean” because that would mean they are still here, instead they have been taken from this earth. Cancer changes everything. Even the way you look at shoes.

When you finish reading this take a moment and go look at your children's shoes and say a prayer of Thanksgiving for them. For "clean & white" shoes, filthy shoes, outgrown shoes, and to grow into shoes. Give thanks for your children's need for shoes.



Good Night All! Hold your loved ones tight!
Monica"


Love,
Sarah Regan
(Maria Holaday's past babysitter in Legend Hills)

God bless you all, and your need for shoes.