Tuesday, April 7, 2009

Looking Ahead

Since I last posted, we have been moving along with the efforts of the Foundation, while taking each day at a time.

On March 7 we were in Cincinnati at The Cure Starts Now gala. It was a fabulous event that raised A LOT of money - over $150,000 for their foundation which is committed to funding research for a cure. At the gala, Marc and I presented TCSN with a check for $10,000 from Smiles for Sophie Forever to fund a specific research study at St. Jude focused on tissue analysis of DIPG. Part of the mission of Smiles for Sophie Forever is to fund research, and that is easier said than done. It's hard to guarantee where the money goes when you give to a research charity. We chose to partner with, and give to TCSN because their foundation has already begun funding this research and they are in the process of renewing the research grant and are in need of more money. Analyzing tumor tissue is very near and dear to our heart. Obviously donating the tumor is important to us, because we did donate Sophie's tumor, and we strongly believe that these biopsies are what will eventually lead the researchers down the right path to finding a medical cure for the dreaded DIPG. Keith and Brooke Desserich of The Cure Starts Now, lost their daughter Elena to DIPG in August of 2007 -a few months before Sophie. Elena, like Sophie was treated at St. Jude and Brooke and Keith have a great relationship with St. Jude. TCSN has invited me to sit on the Medical Advisory Council of their foundation, so that we (SFSF) will have a "say" as to what research should be funded in the future. Our plan at this point is to partner with TCSN and continue to fund research through the research grants that are determined by their foundation. Please visit www.thecurestartsnow.org for more information.

Since we started our "family grant application process," we have awarded over $7,000 in grants to families. We continue to receive requests for applications daily. So to you, our supporters, your money is being put to great use. Thank you! A family with a child with brain cancer can apply for assistance from us by filling out a fairly simple application. We then write the family a check for $1,000, and each family can apply 3 times per calendar year. For many families with medical bills mounting, it may not seem like much, but it is a start. Our goal is to one day have enough money to raise the amounts of these grants, while continuing to raise money for research so that one day we won't have to provide these grants because a cure is found!

We have two events coming up for the Foundation that you can "register" to participate in. One is the Mother's Day/Brain Tumor Awareness brunch which will be held at Avon Oaks Country Club in Avon, Ohio on May 10. You can read more about the event on the website and you can also find out how to purchase your tickets. We have a limited number of seats available, so please if you are looking for a place to take Mom or Grandma on Mother's Day, buy your tickets today. It's a great way to treat Mom and support our foundation at the same time!

The second event is our 2nd Annual Birthday Bash and Dash...aka the 5K and 1 mile Run/Walk. Last year we raised over $50,000 and this year our goal is $75,000 and we know we can do it with your support! Again, visit the website for information on how to register. You can also find some detailed information on how to help us by becoming a fundraiser. We know the economy is tough and money is tight, but imagine the money we could raise if we all became fundraisers and we all found 25 people to give $10. If you stop for a moment and think about your life, and your struggles because of the economy, imagine the added stress and worry if you were also dealing with a child with a terminal diagnosis. I'm sure you realize that life, for many of us, could be much worse.

Having said that, in the next couple days, many of you, our loyal supporters, will find our annual appeal in your mailbox. Please take a moment to read more about us, and how you can help. We urge you to donate to our cause so that we can continue to fight for children and their families diagnosed with brain cancer.

On March 28 we traveled to Pennsylvania to run in the 5k Race for Grace. Wow! I didn't know that Pittsburgh had so many hills! They certainly made the run tough, but seeing those on our "team" wearing the shirts with Sophie's picture on it made it easier. Here is a link to an article about the event. http://www.wpxi.com/news/19036532/detail.html

As for us, we continue to take one day at a time. Have I said before that it doesn't get any easier? When I stop and think that Sophie has been gone from us for 18 months, it hardly seems possible. It seems that by now we should be "getting better" but we just aren't. I know that is not very inspiring to those of you reading, but every moment of every day is another memory, another "what if?" Sarah is growing up so fast, like it seems all kids do, and that is one of the saddest parts of this whole ordeal; that Sarah doesn't have Sophie. Sarah is almost three, and she is starting to ask more detailed questions about Sophie and heaven. She still says she wants Sophie to come here. We tried explaining to her that Sophie was "sick" and that is why she went to heaven, and that once you go to heaven, you don't come back. It's a hard concept for a two year old who takes things so literally. We don't want to scare Sarah, but we want to be honest; just as we were with Sophie. We tried using the "ice cube" analogy for the tumor when we explained it to Sarah. I'm not so sure she got it, because the other day at the bookstore, when Sarah got hot apple cider (and it was too hot to drink, I asked the man for an ice cube) she got the look of fear in her eyes and said, "I'm allergic to ice cubes." (She is used to using that word because she IS allergic to a lot of things.) When I told her she wasn't allergic to ice, and that the ice would cool her cider down, she said, "It will make me sick in my head and I will go to heaven like Sophie." Wow! Try having that conversation in the Starbucks line. I'm sure we have a long line of explaining ahead of us. Sarah is too young to really remember Sophie, and doesn't have a need for grief counseling, but I am realizing it will take a lot of years of explaining.

With Easter coming up, I am reminded of sacrifice and what we do for love. Easter was the last holiday Sophie celebrated. We went to Easter vigil mass in Memphis because we were still at St. Jude. I remember it was so cold. Sophie was nearing the end of radiation and starting to regain some mobility. She was so excited to collect the eggs around "Grandma's apartment." The memories are crystal clear. Oh how I wish she was still here to collect eggs with Sarah.

I think of the struggling and suffering that Christ endured, and I think of the struggling and suffering that Sophie endured. While Jesus understood the suffering and what was to come, Sophie had no idea. She was a child and couldn't begin to understand the madness of it all, yet there was almost always a calmness about her. I know we all face things that we cannot control, in fact I have realized there are very few things in life that we can control. I find myself getting very good at giving it up to God. I remember Sophie singing the song "Were You There?" in church. How cute her voice was when she said "to tremble, tremble, tremble." Of course at the time, she didn't realize what she was singing; or maybe she did. (My sister posted about this song in the "inspiration" section of the SFSF website.) For me, remembering Sophie's death, causes me "to tremble, tremble." Will I ever not feel that way? Probably not. With your help though, I will tremble less knowing that together we can make a difference so that other Moms and Dads will not tremble remembering their son or daughter taking their last breaths. If you haven't heard the song, you can click on the arrow play button at the top right corner of this blog. And while you are there, you can also listen to another song that I've become very fond of. It is called "Where Angels Hang Around." It is a song about St. Jude, and if you have been there, as a parent of a child receiving treatment, the lyrics will touch your heart.

Happy Easter and Happy Spring. Today, I ask you to pray a special prayer for those who are suffering and I ask you to consider making a sacrifice so that you can make a donation to our foundation to help those who do suffer. God Bless you.


Marquez Family said...

We don't each other but, I have followed Sophie's blog. I have wanted to get involved but, I live in Fort Worth Texas. So I did some research and there is 5k for another little girl named Trinity Bright she also lost her battle with DIPG. My point is that yall have really inspired people to get involved to help find a cure. I just want to say thank you. God bless you family.

Anonymous said...

Oh Emily
Your words - your actions - your dedication to a cure is so inspirational.

The song you shared "Where Angels Hang Around" is so touching. I can only imagine the tears, hugs, and smiles that have been shared by the St. Jude Families as they were wrapped in the comfort of those lyrics.

The Simmons' Family

Anonymous said...

We've never meet but I've been following Sophie's story for sometime now. I want to let you know that I often pray for you and your family.
Thank you for sharing Sophie's story.

Kelly Pendley
Arlington, TN

Anonymous said...

Thank you for the update! God Bless!

kls_2017 said...

I have also never met you all. My sister guided me to your blog a while back. I have been following for some time. Your words and what you have gone through have touched me, along with so many others. Sophie looks almost identical to my niece, and watching the sweet videos of her reminds me so much of Annie. I just cannot imagine what you have and are going through. I appreciate your honesty in your posts. Please know you have one other person who is sending up prayers for comfort, a cure, peace, and a lasting happy memory of Sophie. I now cannot see a rainbow without seeing her beautiful face and hearing her sweet voice on the videos. I am so deeply touched. I would love to help in any way...and possibly participate in the St.Jude race whenever it may be. I am not sure if you have an e-mail list of supporters, but I would love to be added to it if so. My email is kls_2017@yahoo.com.

In Christian Love,


Chattanooga, TN

Anonymous said...

Hi Emily,
I am still thinking of you an praying for you and Marc every day. With all of the negativity in the world today, especially living in Detroit and working in the auto industry, I have something to be thankful for everyday and that is healthy children. I took that very much for granted before Sophie's diagnosis but am grateful to have that in perspective now. I know it is not much, but what you went through has made me a better mom and person. I just thought I would let you know.

Love, Misty

Anonymous said...

Dear Emily,

I received the Smiles For Sophie mailer and thought it looked fantastic! What a great job! I showed it to my girls, they know about Sophie and her story. My littlest daughter loved the magnet with Sophie's rainbow and ran to put it up on the fridge. I am so happy to hear about the wonderful things you and Marc are doing to further research and help other families going through this. What a blessing you must be to them! Anyhow, I just wanted you to know how wonderful I think you both are and that Sophie (and Sarah too!) was indeed absolutley and truly blessed to have such caring and devoted parents. It encourages me to be the best parent I can be to my little girls. God bless!

Molly (:

Anonymous said...


WOW!! Things have been crazy with school and I haven't seen you in months... but your strenth ALWAYS amazes me. I just read this post and all I can say is WOW!! I think about you all the time and pray for you, Marc, and Sarah. God has obviously given you an inner strength that is absolutely remarkable. I know that your little Sweet Sophie Girl is sooo proud of all of you!!!
We will get together soon. I miss you and I want to help with the race.I'm sooo proud of you and Marc..You are AMAZING!!!

Love always,

Michelle Redfearn

Anonymous said...

I missed posting this but I thought of you as I do every 6th. I hope you know that many strangers have been touched by your story and pray for you daily.
-a friend in New Jersey

Anonymous said...

Hi Emily

I just wanted to wish you a Happy Mother's Day! You are one of the best mothers I know and have truly inspired me to be a better one. I hope you have a great day and the brunch is a sucess!

Love, Misty