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.
Ed and Megan