Save the Date!!!!!!

Announcing the First Annual Smiles For Sophie Forever 5K Run/Walk!!!!!!!!

We are so excited to share with you this preliminary information about the first event we will be having as a part of our new non-profit organization that is currently in the works.  We are hoping that the State and IRS paperwork will be approved sometime very soon!

The run/walk will be held on the morning of July 4, 2008 here in Avon Lake, Ohio.  This idea has been in the back of our minds for some time now, and we weren't sure how to go about it. But after some tremendous support and encouragement from some very special people, we decided to make it a go.  Many of you know that Sophie was born on the 4th of July and we thought this was a perfect way to celebrate her first birthday in heaven, as well as launch our latest endeavor...Smiles For Sophie Forever  --- A Foundation Confronting Pediatric Brain Cancer.

The picture I posted was taken in May of 2006 when Marc ran the Cleveland Marathon. Marc stopped when we met him along the route to have his picture taken with Sophie in the rain.  Sophie was excited to wear the "Run Daddy Run" shirt and I know on July 4th, she will be watching us and saying, "Run, Supporters Run!"

In addition to the Run/Walk on July 4th, there will be other ways for adults and children to have fun; in case you aren't a runner or walker.   We want this event to be for the entire family so we will have something for everyone and of course we will have either a giant birthday cake, or tons of cupcakes!

We do realize that this is a holiday weekend and a time for family, celebrations and traditions. But it is our hope that you will realize the importance of our mission of raising awareness and funds to cure pediatric brain cancer, and to help those afflicted.  Perhaps this event could become one of your new "traditions" as we plan to hold the race each year on July 4th.

We are currently seeking volunteers to help with our cause.  We need help with planning the details of the event, as well as volunteers to work on race day.

If you are interested, in helping, please contact Kristin Van Euwen at pkvaneuwen@oh.rr.com or 440 781-1179.

We will be having our first planning meeting on Wednesday April 9, 2008 at Swingos Grand Tavern on Walker Road in Avon Lake.  We will start the meeting at 6:30pm.  If you are planning on coming, please RSVP Kristin, so we know how many to expect.  If you cannot be there at 6:30, please feel free to come any time after.  We'd be honored if you would share this information with anyone who might be interested in helping with our cause.

We thank you all ahead of time for your commitment and dedication.  Of course we would like to give a huge thank you to Kristin Van Euwen and Mo Loesch for all the work they have done already!

Also, while I am thanking people, we want to express our gratitude to those of you who have bought the "Sophie" magnets.   In addition to our family and friends, many "strangers" have bought them too, and that is awesome!  Just the other day I was driving and saw a magnet on the back of a car that I did not recognize, and that made my day.  I love to know that awareness is being spread by people who we've never met!  Thank you! Thank you!  There are still magnets available, so if you would like one, we encourage you to place your order.

Each holiday without Sophie is difficult.  On St. Patrick's Day, I remembered that last year we were at St. Jude and Sophie participated in a few activities in the patient lobby.  I vividly remember her wanting to stop at the "nail painting station" where she picked the brightest green they had.  She was so excited, even though she was tired after having just woken up from sedation/radiation.  This St. Patrick's Day, Marc and I went to pick out the memorial monument for Sophie's grave.  Boy how things have changed.

We have been receiving Easter cards from so many very thoughtful people.  And we are thankful for the support and prayers you send our way.

Last Easter we attended the Easter Vigil for Marc's confirmation.  I remember Sophie was so excited to put her Easter dress on and have her hair curled.  She was so good in church even though it was a long service.  We miss her so much.

Happy Easter to all of you.  May you realize the miracle of this day, and how truly blessed we all are.

Don't forget to save the dates: July 4th, 2008 and April 9, 2008.

Website Help

Well, we are still in the process of making the changes to Sophie's site and have all our ideas in place, but we've realized we need the help of a willing professional. This current site is really just a template and we can't quite make the changes to it that we'd like, to really honor Sophie's memory and focus on doing our part to help find a cure.

We know many of you check in on this site regularly, so we thought we'd start here. If you or anybody you know would be willing to donate or discount your/their web design services, please contact Sarah at smiklaski@cox.net. Although we've been trying to teach ourselves and pick through the computer language, we think it would be months before we'd ever get anywhere. And we don't really want to delay any longer as I've been saying I wanted to change this site since November. Plus, we're slowly working on more and more fundraising events and ideas and want a good place to get the word out. We so greatly appreciate any generosity in helping our cause.

Thank you!

More Thoughts After 5 Months Without Sophie

I thought of something that I wanted to include on my post yesterday.  We finally talked to the doctor at St. Jude who is the head of the pathology/biopsy study that we donated Sophie's tumor to after she died.  (A wonderful foundation called Tyler's Treehouse funded this study; see http://www.tylerstreehouse.org/about.asp for more information about another DIPG warrior.

Marc talked to Dr. Broniser and he confirmed it was indeed a high grade glioma, very aggressive and the fast growing kind; and in good condition too (whatever that means).

  

We have heard mixed sentiments about our decision to donate Sophie's tumor.  Believe me, it was not an easy one.  First because we did not have the paperwork ready and we were under a time crunch, and also because on the night she died, the last thing I wanted to do was ship her body off to a hospital without me.  Something kept telling me that donating the tumor was what we should do, and in my heart I knew that Sophie would really want to help someone else if she could.  My parents accompanied the hearse down to Akron where the biopsy was performed and said that the doctor there (who came it at 4:00am to do the surgery free of charge) was wonderful.

  

On another note, I had asked the question to Sophie's doctor at St. Jude while we were there for radiation if Sophie's organs would be eligible for donation in the event of her death.  At the time, it was hard for me to think of her dying, but still I wanted to know.  I was disappointed to hear that because her body had been exposed to chemo and radiation her body could not be used for anything.   On the night she died, I remembered the conversation we had had, and knew that since we couldn't help another child by donating Sophie's organs, we should probably donate the tumor in an effort to help someone else.

  

I would like to call Dr. Broniser again at St. Jude to ask him more specific questions...if I can get the courage up.  You know the information that it provides us won't help us now, but there are still things that I still would like to learn about that stupid tumor.

 

After Sophie's diagnosis, we thought that maybe Sophie's tumor was slow growing because the symptoms had a longer period of onset.  It all makes sense now though, because she only survived 7 months; which would be indicative of a fast growing tumor.  It makes me think that the answer to our question, "Has she had it since birth?" is "No."

I also wanted to post this story from Tamara Ekis (Grace's Mom).  I was so touched when she told me this at the Soiree and I wanted to post these rainbow pictures as well.  Below are Tamara's words...

On February 6, we were having odd weather in Pittsburgh.  It was raining, snowing, and the sun was shining all at once.  As I looked out of our back windows, I saw a beautiful, full rainbow over the new houses behind us.  I ran to the couch to get Grace so that I could take her out on the deck to see it.  Brian said to get the camera and he would get Grace.  So, Brian picked her up and we all went out.  When we got out on the deck, there was not one rainbow, but two.  Two beautiful, perfect rainbows.  The colors were so vibrant, it was incredible. 

 

Unfortunately, I had not realized that the SD card was still in the computer, and not the camera.  By the time I realized and got the card out of the computer, the second rainbow had faded and one stood alone.  We took pictures of it, feeling a bit sad to have missed the two.

 

The kids were so excited to see the rainbows and, even though I marveled at their beauty, I instantly knew that Grace would only be with us a short while longer.  I knew in my heart that the two rainbows were Maria and Sophie, coming to get Grace and take her to heaven with them.  You see, I had been very worried about Grace going to heaven without me being there to hold her hand, and distraught about the fact that she wouldn't know anyone.   As the warm tears streamed down my face, I told Brian that I knew it was them.  They would be coming back very soon.

 

Additionally, a neighbor had called to tell us that there looked to be a rainbow coming right out from Grace's bedroom window and Susan (our good friend you met at the Soiree) told us that even though she was on her deck a mere two houses away, she did not see the second rainbow. 

 

We saw a second rainbow....we saw the signs of Sophie and Maria..... 

5 Months Without Sophie

For those of you who didn't get to attend, I thought the Sunflower Soiree for the PFMF was pretty awesome...and I can't wait for next year's!  In addition to raising money which is so important for funding research and finding a cure, I think the event raised something which is equally important.  And that is awareness.  My hope is that everyone who attended the fundraiser and everyone who knows of Sophie and Maria and their stories, will tell at least one person what a gray ribbon means, and how underfunded pediatric brain cancer research is. Thank you to those of you that came to support us as well as this very important cause.

While we were at the soiree, we had the honor of meeting yet another family traveling the same road we are.  Tamara and Brian Ekis lost their beautiful little Grace to DIPG this past Valentine's Day.   I asked Tamara for permission to copy her explanation of how this illness makes a parent feel.  I related so well to her description; she said this about Grace's journey to heaven. "For almost 14 months we felt as though we wanted to wake up from a nightmare.  Now it is like her life was but a beautiful dream that we cannot get back to..."  I am amazed at how she described to a tee what I feel every day.  The only difference for us is that our nightmare lasted 7 and 1/2 months...I don't know if that is good or bad.

Even though I've had over a year to process Sophie's diagnosis and prognosis, it still shocks me when I think about it.  The fact that the doctors at St. Jude, this great facility known for breakthrough discoveries in cancer research, told us there was nothing they could do for us is shocking.  As a parent, we come to expect that taking our child to a medical professional will make her better or cure her.  Unfortunately for us, there was no cure, and nothing the doctors could do.   I will never forget the feelings of despair when we were given the prognosis and the overwhelming feelings of anxiety and responsibility as we realized that we had to try and find our own cure, all while taking care of Sophie.  These feelings of helplessness are something that I really hope another family will not have to feel.  My hope is that by raising awareness and money, someday we will be able to say that we have accomplished this goal.

Two weeks ago, we had a big snowfall, so I bundled Sarah up and took her out for a walk around the block in the sled.  As we got to the other side of the block my mind began to wander and I started thinking about Sophie and how throughout her last months we would put her in the stroller and take her around the block.  She never really wanted to go, but we always thought that the sunshine was good for her.  I remember how she would reach her hand back to hold mine as I pushed her.  She really didn't want anyone else to push her, and this was her way of making sure she got her way.  During September, she could no longer support her body, or turn her head around.  Somedays I feel bad that I took her for these walks because she really was way more content snuggled up in bed or on the couch.  As I pulled Sarah in the sled, I was having one of those moments of guilt, so I started telling Sophie again, that I loved her, and that I was sorry.  As we approached the corner, I saw a truck turning toward us.  As I looked at the truck, I could see that there was a rainbow on the side of the truck and it said something like "...Rainbow Rentals" and this truck was pulling a trailer of 2 porta potties.  I smiled because I knew Sophie was with me in that moment just as I was thinking of her.  I had seen this truck once before...on the way to the cemetery for Marc's Grandpa's funeral.  Then  I was thinking of Sophie as we passed Rainbow Babies and Children's Hospital - where I hadn't been since my last clinic appointment with Sophie in September.  I know she is with me every day giving me more reminders somedays than others.

We went to Michigan last week end for the funeral of Sam Jones.  He was another courageous warrior fighting the DIPG monster.  We met Sam and his parents at St. Jude when we were there for radiation.  At the time, Sam was there for a follow up MRI and was doing so well. Another reason why I hate this tumor...he was doing so well, and then the tumor came back with a vengeance, and now he is gone. 

Marc's parents watched Sarah for us while we went to the funeral, and on Saturday morning Marc's Mom who is a realtor went to show a house.  When she looked up the address, it was 1111.  And while she was showing the house, she went into one of the bedrooms, and on the wall, in large letters, it said, "remember the name...Sophie Elizabeth"  The little girl who lives in the house must share the name of our little Sophie...I don't believe that was a coincidence as Sophie was heavy on our minds as we attended the funeral.  Please pray for Sam and his family as the initial shock wears off and the extreme feelings of loss set in.

Today Sarah and I visited the cemetery.  The snow was very deep, and covering the Easter flag and decorations I had placed at her grave.  The ground was frozen, so I couldn't "fix" anything...I wrote in the snow "I love you Sophie"  and do I ever.  We miss you Sophie girl.  Sometimes 5 months feels like 5 minutes and other times it feels like 5 years...

Thank you to those of you who continue to show us your support, and for those of you who have already purchased the magnets.  My sister is going to be busy shipping them, but that is a good thing.  I can't really put into words just how meaningful your support is.  God bless you.

The magnets are in!!

Just wanted to post a quick update to let you all know that the magnets are in and they look great!!

So, the paypal buttons are up, but we're still working out a few bugs to make it less confusing. Hopefully we'll get those fixed soon, but until then, on the right hand side of the page you will see two "add to cart" buttons. The first button is to purchase one magnet for $8 and the second button is to purchase two magnets for $15 (if you only want the two for $15, then you must use the second button). Depending on how many you want to purchase, you can use just one button or both (you can change the quantities once you click the button). I know this is a little confusing, but hopefully we'll get it fixed soon! You don't need a paypal account to purchase as the checkout page will give you the option to use a credit card.

If you'd rather pay by check, please contact me at smiklaski@cox.net.

Thanks again for your patience and your support!!

Love,
Sarah