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

Sophie's Rainbow Magnet

I am slowly but surely putting some of the ideas I had into something real. As I said before though, things just seem to take much longer than I anticipated.

Anyway, the above picture is of a car magnet that is currently in production and should be available for purchase through Sophie's site in a few weeks. This is just the first step in raising funds for a new project that I am starting to help other families dealing with what our family did last year. The funds that we raise will be divided into three parts to be used to support and help families in three different ways.

I am planning to give one third of all funds raised per year to St. Jude. You know how strongly we feel about supporting St. Jude because of the wonderful care they gave to Sophie, and for all the help they give to families who are faced with catastrophic diseases.

Another third of all funds raised per year will be given to the Prayers From Maria Foundation. This is another foundation that is very near and dear to our hearts because of the relationship we have with Ed and Megan and because of the personal help we received from them and their foundation. You also know that this foundation helps families through their website, and also provides money for grants so that further research can be done, through "traditional medicine" as well as alternative therapies.

The final third of the yearly funds raised will be dedicated to funding a meal program to provide a small amount of help for families afflicted with gliomas.  The idea is that the family can apply for a dinner here or there as needed and we will ship it to them on dry ice.  I know I was greatly blessed by Kim Walters and all the women who so generously volunteered their time and talent to provide meals 3 days a week to my family for many months while we were spending all our time caring for Sophie when she was battling her tumor. Those meals were a Godsend as it was one less thing I had to worry about each evening (as most were large enough for 2 nights!!) Because I know how much of a help it was, and also because I think this is a great way to honor Sophie's love of cooking, (she always wanted to "help me in the kitchen," even as a toddler), I want to be able to do the same for families all over the US. I am looking for a company to be the supplier of the meals that we can purchase...hopefully at a discount. My hopes are that regardless of where the family is, the meal can get to them. I am planning to start small and then grow as able.

So, as a way to not only get these projects up and running, but also as a tribute to my beautiful daughter Sophie and as a way to raise awareness, I came up with the idea for this magnet. J.J. Lipski's  parents, who created the gray ribbon for pediatric brain tumor awareness and are selling them through their website icouldbeyourchild.org, were so kind as to allow me to incorporate the ribbon into my magnet design. As J.J.'s mom said, "awareness is not copyrighted." All proceeds from the sale of this magnet will go directly to this Smiles For Sophie fund.

As of right now, we do not have non-profit status, but are hoping to work towards that very soon.  We are going to establish an account with the remaining money that was donated to us during Sophie's illness and will add to that as we find other ways to raise funds.  In addition to the magnets, we will soon have rainbow headbands and the "Sophie & Maria's Rainbow Connection" puzzle available for purchase.

Stay tuned as we again get the website and paypal kinks worked out. We are hoping to be able to sell here on Sophie's website using paypal. If not, we might have to do it the old-fashioned way with mailed checks. Nonetheless, the magnets are in production and will soon be available!!

Thanks for the continued prayers and support!! Together we can all make a difference!

Held

Just a short post to reflect on today as the one year anniversary of Sophie's diagnosis and the day our lives were forever changed. Included at the end of this post is a song entitled, "Held". (You just have to click on the arrow to hear it.) Megan told me about this song a few months ago, and I've wanted to include it in a post since. The lyrics are an accurate description of how I feel everyday. I know I am blessed to be here and to have survived this ordeal. God has gotten me through the past year and reminds me everyday of my ultimate goal of being reunited again with Sophie.

"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." The Lord says, "I will guide you along the best pathway for your life. I will advise you and watch over you." "I command you - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." "When they call on me, I will answer; I will be with them in trouble. I will rescue them and honor them." "Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand."

JER 29:11 PS 32:8 JOS 1:9 PS 91:15 ISA 41:10

I miss Sophie more than anyone could begin to understand, and would give anything to hold and hug her again. Somedays I still get angry that this happened to Sophie, but then I force myself to think about how much fun she is having in heaven. I thank God for getting me through each day. I thank God for bringing so many of you into my life. Often times, I am amazed that I did survive, but I know that it was nothing that I did, it was all the work of God.  Even though Sophie died just 4 months ago in October, I really feel like the "sacred was torn from our lives" one year ago today. Today and everyday I am "HELD," and for that I thank God and all of you.

One year ago today, our life was normal, we were happy, we spent our days with Sophie and she was the highlight of every day. Today, she is only here in spirit and her beautiful body is buried beneath the frozen ground a few miles from our house. Gosh how we miss her. To those of you who are lucky enough to spend each day with a miracle(s) hug them extra tight today and realize how blessed and lucky you are. Live each day as though one year from today you may not be with them.

Sophie, we love you, we miss you, you are forever in our hearts.

NATALIE GRANT lyrics

Happy Valentine's Day Sophie

Happy Valentine's Day Sophie! We miss you so so much. I know you are sending us the beautiful sunshine that we have today.

Sarah wore the Valentine's shirt that you wore when you were her age. She looked so cute. She got it all dirty, so we had to change her into the Valentine dress that Grandma got her. I was sad though, because Grandma said she had another in 5T just for you, because she bought them last year on clearance. I miss not being able to put you two in matching clothes!

These pictures were from Valentine's Day last year. Remember all the snow we had? We had so much fun sledding. You had a hard time smiling for the camera. Now I know why you tired out so easily, and why you had such a hard time climbing up that little hill.

I miss you Sophie girl. You are my tootle bug and you are in my heart always, but today I'm holding you oh so close!
XOXOXOX

One Year Ago Today

I was looking through some pictures as I often do, and found this one from exactly one year ago. Despite knowing what was going on in Sophie's head, I remember this day as a happy one, so I thought I'd share.

I'm sad when I think about the fun Sophie and Sarah would be having.

Four Months Without Sophie

I'm late with my update again. I don't have an excuse, unless Ash Wednesday can be an excuse. Ironic to me that an anniversary of Sophie's death would fall on this significant beginning of time of prayer and repentance. This month not only marks the anniversary of Sophie's death, but also the anniversary of her diagnosis and many "lasts". I cannot believe a year has gone by already. At times I feel like I lost the year 2007. Actually I wish I could lose that year, or just skip over it!

When I think about last February, I now can clearly remember so many things that were "different" about Sophie. Last year, while doing the Valentine's cards for her preschool class, she wanted to stop signing her name after only a few. Looking back, that was surely a sign, because now I can remember how eagerly she decorated and neatly signed her name in cards for people in February of 2006...and she was only two and a half!

Sometimes I wonder why she was given the gift of such intelligence. Why was she chosen to be the child who had an amazing memory, and knew all her letters by 18 months? At the time, I didn't know that it was a big deal, until Sarah turned 18 months in January, and couldn't identify her letters, yet we consider her to be very bright.   I think Sophie was an old soul, filled with wisdom beyond her years. When I reflect back on her intelligence, kindness and vocabulary, it's hard to believe she was only three and a half when diagnosed and four years old when she died.

The hurt and the pain do not go away, and it still hasn't gotten any easier. I miss her just as much, if not more than the day she died.  Lately, I have been haunted by all the "what if?" questions that seem to flood my mind. Even when she was healthy, it was my nature to second guess decisions, but after having been through a terminal illness and death of a child, I go over and over every decision we made regarding Sophie.

When Sophie was diagnosed, and we were given the prognosis, I believed the doctors when they told me she would only live 6-12 months.   I didn't stay positive and think that we could prove them wrong.  Initially it was not an easy decision for me to do radiation.  My first instinct as a parent was to forego radiation and allow the disease to run its course with the comfort of knowing that we could spend as much time at home with Sophie in her familiar environment.  I just wanted her to be happy.  I instantly realized that selfishly I wanted Sophie with me as long as possible, but that her ultimate home would be in heaven; a place that I believe is happier than I can even begin to understand. So I struggled with the question, "Why would we put her through this?" if it would only be to give ourselves time with Sophie.   

After much discussion, encouragement, and great recommendations about St. Jude, we decided to continue with radiation. Only because then, I changed my thought process to believing that maybe through prayer and a miracle, Sophie might be cured. I prayed and believed that radiation might buy us time to find the cure.   It was then that I thought we could prove the doctors wrong.

When radiation did little to shrink Sophie's tumor, and she continued to show symptoms, I felt very guilty that I had put her through all the days of sedation, blood draws, steroids, not being able to eat when she wanted to, our limiting food when her body said she was hungry, torturous baths and the dreaded enema.  I wondered if the radiation did an adequate enough job of stunting the tumor growth just enough to give us the time we needed to find the cure.

People tell me "If you didn't do radiation, you would be asking yourself the same questions." That is possible, but I always have a gut feeling about things, and I had a gut feeling that radiation wasn't going to help her.  I'm writing from my heart, telling the feelings that a parent who has a child diagnosed with a terminal disease has when forced to make medical decisions with their child's best interests at heart.

After radiation, all the treatments we pursued were in the hope of a cure. When I saw Sophie getting worse, I didn't for once want to prolong the inevitable, but I did think that since we tried radiation we should try the other alternative therapies that we discovered.  And although it is obvious that they didn't work, I do believe they made Sophie's physical suffering less. She really never complained of pain in the months after progression. It was only in the last weeks that it seemed she was trying to tell us her leg hurt. But still, we aren't sure. I know that the last hour of her life, with the labored breathing, must have been painful and scary. Her emotional suffering is what I worry about. Especially because she lost the ability to speak the last months of her life, as well as the ability to walk, eat, drink, swallow, and use her arms...things that so many of us often take for granted.

I say to Sophie every day that I am sorry. I am sorry that she was the one who had to suffer. I am sorry I held her arms down so that the nurses could come at her with a needle to put in her chest. I am sorry I gave her so many bites of applesauce with medicine in it that she hated the food she once loved. I am sorry that we had to go away from home to a place that was unfamiliar. I am sorry that we pushed you to walk as much as possible, even though you didn't want to. I am sorry that you couldn't eat what and when you wanted to. I am sorry we had you sit through numerous exams with doctors and nurses asking you the same questions over and over while you should have been playing Dora House. I am sorry you threw up every day and became accustomed to having a bowl at your side at all times. I am sorry you had to suffer. If your true calling was to be home with the Lord, then I'm sorry I didn't let you go sooner.

What comforts me today, even though I am haunted by many of the decisions we had to make, and the suffering Sophie endured, is the fact that she is in heaven with Jesus, and all those who have been welcomed into God's heavenly home.

Please don't forget about the prayersfrommaria.org Sunflower Soiree Fundraiser that is coming up on February 23.  All are invited to attend and show your support for the foundation that is dedicated to helping families and finding cures for gliomas.  We will be there and hope you will too.  If you cannot attend, please consider making a donation to the foundation.  For more information please visit  www.prayersfrommaria.org/docs/invite.pdf

We thank you for your continued prayers and support.  Please pray for the families fighting this battle and for those who have lost children.  May God bless you and keep you healthy.

3 Months Without Sophie

I started this post late Sunday night, and never finished it. I was having a hard time putting my feelings into words, because there are only so many times I can write that I miss Sophie and that losing a child is certainly the hardest thing in the world. A chance to sit and visit with Megan (Maria's Mom) was the perfect excuse to take a break. So I left the post as it was, thinking I would get back to it in a few days when I had something to say. I didn't plan on writing today, but as it often does, the "Purpose Driven Life - Daily Devotional" that I received via email this morning was very thought provoking and indeed provided me with a purpose for writing.

As I sat and talked with Megan, we agreed that it is NOT getting any easier. We talked about our girls, how they suffered and how they taught so many, so much. We commented on how we both reflect back on our time with our girls, and how there is a distinct line drawn in our book of memories. On one side are all the memories of the daughter we had "before diagnosis" and on the other side are all the memories we have "after diagnosis". Even though I never explained the severity of Sophie's diagnosis to her, I am astutely aware of how her knowledge and level of maturity changed after diagnosis. The memories on the side after diagnosis are the ones that are so clear and often the ones I would like to forget. We asked ourselves the torturing question, "What could we have done differently?"

I told Megan about one of the many books I have been reading, called "Holding Onto Hope" where the mother (who also lost a child) says that she finally realized she wouldn't have wanted anything to be different because she accepted that the way things happened was the way God meant for them to happen. I try to remind myself of that every day and really allow myself to be used for God's purpose (just as Sophie and Maria did) so that I may someday get to heaven.

Even though I have my moments of asking the questions "When will I wake up from this nightmare?" and "Why...and How did this happen?" A devotional email can set me straight...at least for awhile. When I read what is written below, it made me stop and consider how I live my life. Obviously I have a long way to go, and I will need to be reminded often. But when I stop to consider how Sophie responded to her situation, I can't help but at least TRY to do "Whatever it Takes"

Below is the email I received. I hope you take the time to read it and consider what it is asking. It really opened my eyes to all the things I am NOT doing.

Tell God: Whatever It Takes, Anytime, Anywhere, Anyway.
by Jon Walker


Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. (Philippians 3:13b-14 NIV)


~~~ ~~~ ~~~


When Saddleback Church celebrated its 25th anniversary, Rick Warren called for a radical commitment from God's people — all over the world — to tackle the giant obstacles that keep people in spiritual darkness.

In this new year, we can “press on toward the goal to win the prize for which God has called [us] heavenward in Christ Jesus” (Philippians 3:13b-14, NIV). We can, once again, affirm our commitment to the work of the Great Commission. My prayer is that we will view this declaration as a covenant with God, promising him that from now we will do whatever it takes: anytime, anywhere, anyway.

A Call to Radical Commitment

By Rick Warren

Today I am stepping across the line. I'm tired of waffling, and I'm finished with wavering. I've made my choice; the verdict is in; and my decision is irrevocable. I'm going God's way. There's no turning back now!

I will live the rest of my life serving God's purposes with God's people on God's planet for God's glory. I will use my life to celebrate his presence, cultivate his character, participate in his family, demonstrate his love, and communicate his Word.

Since my past has been forgiven, and I have a purpose for living and a home awaiting in heaven, I refuse to waste any more time or energy on shallow living, petty thinking, trivial talking, thoughtless doing, useless regretting, hurtful resenting, or faithless worrying.

Instead I will magnify God, grow to maturity, serve in ministry, and fulfill my mission in the membership of his family.

Because this life is preparation for the next, I will value worship over wealth, “we” over “me,” character over comfort, service over status, and people over possessions, position, and pleasures. I know what matters most, and I'll give it all I've got. I'll do the best I can with what I have for Jesus Christ today.

I won't be captivated by culture, manipulated by critics, motivated by praise, frustrated by problems, debilitated by temptation, or intimidated by the devil. I'll keep running my race with my eyes on the goal, not the sidelines or those running by me.

When times get tough, and I get tired, I won't back up, back off, back down, back out, or backslide. I'll just keep moving forward by God's grace. I'm Spirit-led, purpose-driven and mission-focused, so I cannot be bought, I will not be compromised, and I shall not quit until I finish the race.

I'm a trophy of God's amazing grace, so I will be gracious to everyone, grateful for everyday, and generous with everything that God entrusts to me.

To my Lord and Savior Jesus Christ, I say: However, whenever, wherever, and whatever you ask me to do, my answer in advance is yes! Wherever you lead and whatever the cost, I'm ready. Anytime. Anywhere. Anyway.

Whatever it takes Lord; whatever it takes!

I want to be used by you in such a way, that on that final day I'll hear you say, "Well done, thou good and faithful one. Come on in, and let the eternal party begin!"

What does this mean?

Today, I affirm this commitment to God and submit to his plans and purposes for my life, no matter what it takes.

________________________________

Signature

________________________________

Date

© 2007 Jon Walker. All rights reserved.


If you feel the calling to help those children and families dealing with the crushing diagnosis of a brain tumor, I urge you to consider helping with the Prayers From Maria Foundation Sunflower Soiree Fundraiser that will take place in Cleveland on February 23, 2008. This is an event designed to raise awareness as well as lots of money so that the foundation's purpose of "Helping Families, Finding Cures" will be fulfilled. The foundation is currently seeking corporate sponsors, as well as donations of big ticket items for the auctions. If you are able to help in any way, please consider visiting the prayersfrommaria.org website. Here is a list of the types of items they are looking for.

Art work
Autographed sports items
Babysitting services
Chef to cook for you and your guest
Cleaning service
Creative memories basket
Dance classes
Fitness center membership, Five Seasons, Bally's, EMH, YMCA,
Four seasons of flowers from florist
Gift baskets
Gift cards/certificates for restaurants, stores, salons, hotels, etc.
Golf clubs
Golf outings
Gymnastic classes
High school football tickets
Hotel overnight stay
Interior design session
Jewelry
Karate classes
Kids birthday parties, My Gym, Pump it Up, Bowling, Chuck E Cheese, etc.
Lawn service
Massage service
Movie rentals
Movie tickets
Pampered chef basket
Personal trainer
Photography photo session
Pizza certificates
Salon services, manicure, pedicure, haircut & style, facial,etc.
Sporting event tickets
Sports memorabilia
Tanning sessions
Tastefully simple basket
Technology equipment, Ipod, Tivo, Camera, laptop, etc.
Theater tickets
Vacation packages, homes, cottages, boat trip, ski trips, etc.
Wine tasting for ten, bottles of wine


And of course your attendance is a great way to show your support. For us, the timing will be bittersweet as Sophie's date of diagnosis was February 21, 2007. When I look back to February 23, 2007, we were at Rainbow Babies and Children's Hospital making decisions about how Sophie would spend the remainder of the time she had left on Earth. And at the time we were certain that if we did radiation she would most likely make it to Christmas, but instead it's already been 3 months that she has been gone.

Please, consider helping with this fundraiser if you are able.


For us personally, December has come and gone, and now a new year is upon us. We missed Sophie so much during the holiday season. It's difficult to do the things we did when she was here with us. We had Marc's work party here at our house (as we have had in years past). Sophie was always a part of the party, so we all missed her. A group of us played the game "Catchphrase" (something we hadn't done in years past), and it was obvious that Sophie was indeed present at the party when the clues, "rainbow" and "4th of July" came up. We continue to get signs from her, especially the appearance of 11:11.

Taking down the decorations was tough...maybe even harder than putting them up. It was a rough couple months, but somehow we survived our first Christmas without her. Florida was a much needed distraction; it was good for us to get away. The weather was perfect with the first 4 days being sunny, and although it rained on Christmas day, I saw periods of sun peeking through the clouds, and I just knew that somewhere there was a rainbow. I wouldn't have had it any other way. Sarah had a great time, so we're considering making a trip in December a yearly tradition.

It's strange to think that the year 2008 will be the first of many years in which Sophie will not be with us here on Earth. When I think back to January of last year, I remember Sophie beginning to show signs of her tumor, even though we didn't know they were signs then. She was more tired, and a little grumpy and didn't want to do the daily things she had always done. It is so sad to look back and wonder what was going through Sophie's head, as her body and mind slowly began to fail her. From this point on, I won't be able to look back at "this time last year" and have memories of the Sophie we knew before diagnosis.

Still we press on, mostly because we have no choice, and because our Sarah needs us. We hope and pray every day that another child and family will not have to endure a year like we did in 2007.

We thank those of you who remind us that you are thinking of us by posting to the blog, calling, or by sending us cards and/or emails. It really does mean something to us that you haven't forgotten Sophie, and that you are aware of what a struggle this is.

May you find many blessings in the New Year.

Two Months Without Sophie

Another anniversary...aren't anniversaries supposed to be "happy?"

We thank all of our friends and family who have continued to provide support since Sophie left our world just two short, yet very L-O-N-G months ago. We have spent the last couple months trying to figure out how we can go on without Sophie. It certainly has been difficult, if not impossible, to adjust to the emptiness in our home. We faced the loss of Marc's Grandpa who succumbed to cancer after a very short battle. Two deaths in one family in just over a month really take a toll on one's psyche.

We spent Thanksgiving here at our home - just the three of us. We ate honey baked ham and frozen side dishes. It was relaxing, and what we needed, but my mind wandered often to the thought of Thanksgiving 2006 when we hosted my family here. Sophie was so excited to set the table and line up all the silverware and dishes. And then she was even more excited to place the little candle centerpiece she had made at Little Learners, on the table. I am going to keep that "centerpiece" forever.

We have been decorating the house for Christmas, little by little. And although it is hard to do without Sophie, it is something that she enjoyed and appreciated very much; so we're digging out as much as we can in her honor. When I was up in the crawl space sorting through rubber maid tubs, I came across the pink mini golf clubs that I had bought on clearance after Christmas last year. We were saving them to give to Sophie this Christmas. Marc was so excited to take her golfing with him. I also found the ornaments that Sophie had made last fall in preschool. One has a picture of the two of us on her first day of school on the front, and on the back, it says, "I'm thankful for you!" It's moments like those, that my heart just stops beating and I loose my breath.

We've decided to take a short vacation to Florida over Christmas. We think we will fare better emotionally if we don't wake up here in our house, without Sophie to come down the steps to see if Santa is still there. (Last year she was nervous to come down because she thought he might still be there!) We're fortunate that Sarah is young enough to not need an explanation.

My sister Sarah and I took my little Sarah to put a wreath at Sophie's grave. When I go and "visit" Sophie, the reality of the situation is overwhelming. Sometimes I can't believe that my little "Sophie Girl" was diagnosed with a brain tumor nine months ago and now she is gone. It seems surreal that I am there visiting my four-year-old's grave. I still find myself somehow believing that one morning I really will wake up and find this while thing to have been just a nightmare.

So that's how we are down here on Earth, while Sophie is in heaven happy and wishing we could be too. She continues to send me winks from her special place over the rainbow. I have seen more pictures of rainbows in books, magazines, catalogs, billboards, trucks, the Internet, you name it then I ever remember seeing. I visited Sophie's grave with Marc's Mom and sister on November 13th. While we were standing over her grave, a tiny yellow butterfly fluttered by. I don't know about you, but seeing butterflies in northern Ohio in November has never happened to me before. I know she sends me those winks to say "Hi Mommy," and to let me know she is smiling.

I sent a note to my CRHP "sisters" in Cincinnati a couple weeks ago thanking them for a memory candle that I placed in the center of my Advent wreath. In the letter I mentioned the fact that Sophie will be at the real birthday party on December 25th. That thought pops into my head many times each day, and brings a smile to my face. Sophie loved parties, dressing up, decorating and celebrating. I know that being at Jesus' birthday party in heaven is a great reward for the suffering she did on Earth. Each day I remind myself that I need to somehow, someday get to that party.

We thank those of you who continue to make donations to St. Jude in Sophie's name. We are honored that you are supporting this facility that offered us so much during Sophie's illness.

Please please continue to pray for those families fighting this battle. I know I've asked before, but I am asking for prayers again. There are children being diagnosed every week with this disease and all will be given the same prognosis we were. We really need to raise awareness so that a cure may be found. My prayer and wish this Christmas is that someday in the near future, you will see as many gray ribbons as you do pink, and that somehow a cure will be found. Please also pray for those families whose children will lose their battle. It breaks my heart to know that more families are facing the devastating pain that we feel.

We are continuing to work on the changes to Sophie's site, and to figure out the best way to honor her memory. I guess it will be a memorial in the making. I have an idea of how I want it to be, but getting there is a longer process than I thought.

Below is a video clip of Sophie that I found while trying to organize all the "stuff" on my computer. It is how I remember her, and the precious voice and spunk she had.

God Bless you and your families this Christmas. Hug those children in your lives, both young and old, and count your blessings.