Tuesday, March 06, 2007

Update as of Tuesday, March 6, 2007

Hello Everyone,

I know there are quite a few of you out there that have heard by now and, yes, the news is true. There is a beautiful little 3 ½ year old girl named Sophie who was just diagnosed with a diffuse intrinsic pontine glioma on Ash Wednesday (Feb. 21st). We knew she lived out in our neck of the woods but did not realize until Ed and her father, Marc, spoke that we live within yards of each other. A short cut-through our neighbor’s backyard. It is shocking to us that such a rare brain tumor (150-200 diagnosed/yr.) could be diagnosed so close to another. It certainly raises questions in everyone’s mind, especially with Avon Lake’s cancer history. We must be diligent and look into this, but there should be no panic.

We have had the pleasure of meeting with Sophie, her little sister and Mom and Dad to help them in any way that we can. They are wonderful people and I instantly felt that we would be friends for life. You can visit Sophie’s site at www.smilesforsophie.com. They left for St. Jude’s last Monday. Sophie starts her radiation treatment this week. Please keep them in your prayers during this extremely difficult time.

The foundation we have started is so important. I cannot stress this enough. There is very little being done to fund a cure for pediatric gliomas. Any doctor you talk to about Maria’s type of tumor is stumped. They just don’t know much of anything about this tumor at all. As I watch Sophie and her family begin their journey, I can’t stand the helplessness of it all. Something has to be done. Please consider donating to our foundation or sponsoring a fundraiser. We are going to see that something IS done about this.

I don’t know why all of this is happening. I don’t know why we are where we are. I just don’t understand the big picture. I think about it often and I am overwhelmed. I have to keep going back to my faith in God or I would be despondent. Seeing Sophie and her family brought back the reality of it all. When I look at Maria, her symptoms, though mild, are there. She is having slight double vision out of her right eye and an ever so slight droop of the mouth on that side. Her laugh and hugs, though, are still the best in the world. Thank God.

When we say our prayers at night at the end I always ask, “What do you want to thank Jesus for?” and Maria, without hesitation, says “my tumor” every time. She is such a beautiful thinker. Way beyond my years. I am stunned that she thanks God for her tumor. Then I ask, “What do you want to ask Jesus for?” And she says, “I’d like to ask Jesus to take my tumor away.” Thank goodness. Please hear our prayers, Lord.

We do love St. Jude’s, but as most of you know they’ve been doing a major advertising campaign on TV showing personal stories. It is for such a great cause. The only thing that went wrong, though, is Maria was watching TV and for some reason Ed and I were both out of the room for a second and Maria flipped on one of their specials and a child was dying from a brain tumor. What are the odds? I heard the boys come into the room and Maria scolded them saying, “You need to get out of here. This is too scary for you to watch.” I called out to Maria and I asked her what she was watching and she came into the room crying, saying, “Mom there was a boy at St. Jude’s with a tumor and he was dying! Am I going to die?! I’m too young to die! I don’t want to die!”. I was so caught off guard but instantly reassured her. You’re ok right now aren’t you Maria? You have gotten better. Don’t worry about things like that. Jesus is always with us and as long as we know He is with us we are going to be just fine. She eventually recovered, but only with some permanent wounds. Even still, she thanks God for that tumor.

I feel like the luckiest Mom in the world because God gave Maria to me to care for and to love. He must love me so much to have put such a beautiful flower in my life. She brings me so much joy and happiness. Maria often stops and tells me for no particular reason, “I love you Mom” “You’re the best Mom in the whole world.” I just don’t feel worthy, but it makes me feel so good inside. There is no better treasure. No better gift. I can’t bear the thought of living without this or living without her. So I beg God to please show mercy. Touch her and heal her. She has so many beautiful and wonderful gifts to share.

I have to believe. I have to pray. I have to hope. For me, there is no alternative. I will not give up. I am Maria’s mother and she can draw her strength from me. I will never give up on God’s ability to deliver us from this painful ordeal. When Jesus and His apostles are in the boat and a storm kicks up and winds are thrashing the boat about, the apostles become frightened and they wake Jesus. He calms the storm and asks them, “Why are you afraid? Have you no faith?” Fr. Tim says instead of focusing on the hurt and the pain, focus on Christ. That is where I will rest my eyes—on Him. I will cling to Him. I will put my trust in Him. But, He is a merciful God and wants us to bring our requests to Him, so I will ask God: Please, let her be with us for years to come. Let her get on the school bus with her brother in the fall. The two of them are so looking forward to it. Let us always be able to hear her funny laugh and her silly jokes. I need to hear these. I need to color and play Polly’s with her. I need our talks and our special times. I need her little arms wrapped around my neck. I need to watch her grow. I need her here. You don’t want me to despair Lord, but to put my faith and trust in you. That is what I am doing, but not without asking You to please show mercy. Know that I not only trust in Your will but also in your never-ending mercy.

Now, during Lent, during this special time of the year when God’s graces are so abundant, I ask each of you to pray as hard as you can for Maria. Lift her up. Ask God to place His healing hands upon her and show His never-ending mercy. Ask Him to pull the bad cells right out of her head. Envision it. Believe in His power to do this. Please ask Him for this, and don’t ever give up. We must always be hopeful, and wait for God to show us the way.

Thank you to so many of you for being such an inspiration to me. When I think about how many of you have chosen to reach out or to take action to help us and others I am humbled and I learn from you. John Gentry (aka Trucker), you are an amazing man and I thank you for the work you are doing for our foundation. The event you have planned for June 16th is really something. We will be posting more details on our foundation’s site to come so everyone please check it out.

God bless all of you and thank you for your continued prayers for Maria.

Love,
Ed and Megan

18 comments:

Anonymous said...

Your faith and hope are such an inspiration. Keep that image of Maria and her brother getting on the school bus together this fall!
Sophie's family is very lucky to have you for support. May God bless and keep all of you as you continue through this journey, and may He touch Maria with His loving hands to bring her healing and peace.

A fellow Avon lake resident

Anonymous said...

Megan--

Your comments about your Maria and her special way of reaching out gave me a thought. Remember the woman who wanted to wash the feet of Christ and how humbled she was to have Christ was her feet. Your daughter lives as a blessing to others, wanting her joys to be their joys. Her blessings, as she recognizes them, to be their blessings.

Perhaps Maria could participate in the Holy Thursday Last Supper Mass and have her feet washed by Fr. Tim. It would be an honor, I'm sure, for both Maria and Fr. Tim to share in this together with the St. Raphael community.

Your faith is an example not just to all of us, but to Maria. Do not be amazed at her spirit and grace without recognizing that she has gained such strenght of faith through you. During this Lenten season, especially, you are never far from my thoughts and prayers. Not being alone on this journey is pivotal...remember there is strength in numbers and the number of people your family has touched means you're working with Herculean strength by now.

God bless, Sheila Fenton

Anonymous said...

You are so right to cherish and pray for your daughter as you do. My you continue to do so, and may God grant you the mercy you desire. We still pray daily. Thanks for the beautiful update.

Love,
Aunt Pam

Anonymous said...

Thank you for the update and the courage and strength you show to everyone. We will pray even harder now for your beautiful Maria, and for all of you. Love, Rosaleen

Anonymous said...

I have been anxiously awaiting on update on your site, and was touched by your words today. You don't know me, but as a mother of two little ones, I have been following your story. I wish nothing but the best for your family, and I am sending positive, healthy thoughts Maria's way.
~A mom in Denver, CO

Anonymous said...

We hope you are having a wonderfully wonderful day!

The Simmons' Family
Woodhaven, Michigan

Anonymous said...

Every time I share the story of Sophie and Maria someone always comments on the possible environmental link. The amazing connection to me is this: Sophie's family, who has moved often, landed in your backyard. Long before either girl's diagnosis, God put Marc and Emily in the arms of another family grounded in their Catholic faith. It is clear from both of the girls' stories that this shared faith is what has given you hope and peace during your unexpected journies. My prayer is that your families do remain friends throughout your lives-and that Maria and Sophie grow up telling the story of their shared miracle!
Thank you for the beautifully written update. Maria is an inspiration!
Paula Eckard Koziol

Anonymous said...

Thank you for the update on Maria. She is amazing, to say the least, and I am so happy to hear that she is still doing well. She certainly has beaten the odds so far! The Sophie story is unbelievable...thank God they have your family for support. I continue to pray to St. Jude for Maria's recovery and I have added Sophie to the list, as well as all the children on your website. I read their stories and cry, and it makes me thank God even more for my own blessings. You are all in my prayers.

Anonymous said...

Maria,
You are the light of Christ to this family. We look for you at Mass and love it when we see you. Keep that smile. Keep that faith. This lent our family devotes the first favor asked in our rosary to Maria and our last prayer at night to your complete healing. We love you.
M&DC
F,A,H & K

Anonymous said...

Prayers for Maria...

We trust our doctors and have to believe in them but PLEASE remember that the FDA controls what methods we have here. Not far from San Diego over the border there is a clinic that cures (they are almost ready to say 100%) No pain will be had. Please trust that The US doesn't have all of gods answers. We pray but we MUST act to. We can pray to be saved but if we don't board the lifeboat we'll sink with the ship. Please hear this.

Sophie's Aunt Leslie said...

Ed and Megan-

We have yet to meet but I am in awe of your support for my brother Marc and his family. I have been so touched by your generousity, your will, your strength and your spirit. Sophie had only been diagnosed for two days when Marc made me aware of Prayers for Maria. Within a day, I had read every word of your blog and I can't begin to tell you how it helped me better understand what challenges Marc, Emily and Sophie have ahead of them but also how powerful hope can be. Thank you for being there for them. Even considering the circumstances, it is a blessing that your two families have been brought together. I look forward to the day when I can thank you in person. Hugs to Maria.

Kristin Van Euwen said...

I am visualizing Maria's complete healing. We will continue to keep Maria and your family in our prayers every day. Maria is very lucky to have such a great Mom & Dad. God Bless You!

Gina Williams said...

You are definetly an inspiration to us all. Your strength and faith shine through your words. I only wish I had more of it. I am so glad to see what you are doing with the foundation. We have to get the word out there! This shouldn't be happening! I pray Maria and all of our children get the miracle they so deserve.
With love, Gina (Brooke's mom)

Anonymous said...

I will continue to pray everyday for Maria. God has blessed you with an angel. You are an inspiration to so many people. How wonderful of you to reach out to Sophie and her family. People you don't know are there everyday, every hour, every minute in thought and prayer for Maria.
God Bless You
Jean, Avon Lake

Anonymous said...

Dear Maria and Family,
You dont know me but i've heard about you. I am 12 years old and last year my aunt Christine told me about you and my heart was aching. Then she told me about your website and I went on right away. Now, everytime i see it, I just thik that if that was me I dont think I could ever be as strong as all of you right now, especially Maria. You are an inspiration to me and I wish you all much good luck!!
Best Wishes,
Nina Koester

Anonymous said...

Your family is such a wonderful example of trust in God. I sometimes want to cry because of the things I hear that happen to Maria, but I have to remember, Megan, what you and Ed say, "Trust in God." I pray for you everyday and will continue until Maria is healthy once again.

God bless you!

Lynne said...

god bless Maria and Sophie. I'm praying for both little girls with all my heart.

Anonymous said...

Maria,
You dont know me, but my aunt christine tld me about you and my heart started aching for all of you. I am 12 years old and have much faith in you!You are such an inspiration to me! You have been so strong, all of you. Maria you are wonderful. I pray for you and your family all the time. Best Wishes