Thursday, January 11, 2007

Update as of Thursday 11, 2007

Hello Everyone,

Today is Maria’s 7th birthday and we thought the perfect day to announce the establishment of our new nonprofit organization, the Prayers From Maria Foundation (see: ).

There aren’t many people who realize that pediatric gliomas are the second leading cause of cancer deaths in young people and 85-95% of these children die within the first five years of diagnosis. I had never even heard the word “glioma” before Maria.

After Maria’s diagnosis, Ed and I frantically searched medical journals, books, articles and the Internet for any sign of hope that we could cling to that might possibly save our daughter’s life. What we uncovered was that childhood glioma (brain tumor) research was grossly underfunded, and there was no organization acting as a clearinghouse or translator of the state of research for newly diagnosed families. There is simply not enough being done to find a cure. It is unacceptable for a child who is perfectly healthy one day to be told that she has months to live the next.

As a mother I can’t rest in my heart knowing this information and knowing that I have the ability to do something about it. Ed and I have continuously thought about our role in the midst of this. We have tried to open ourselves to God’s plan and how we are to participate in it. I believe many successes have come about in medicine for the betterment of all because those who have been personally touched by an illness have decided not to sit on the sidelines, but to do more.

The Prayers from Maria Foundation is charged with funding research into a cure for childhood gliomas, and to advocate for families with such conditions. Initially, it is our goal to gather enough funding to provide grants to research institutions that can demonstrate how they plan to best use the money to find a cure for this child-killing disease. Eight of the very best doctors and biomedical researchers in this area have agreed to be on the foundation’s advisory board. Based on their knowledge and the research that the foundation will fund, we plan to create a destination for newly diagnosed parents to access the most up-to-date information regarding glioma research and options for treatment. Eventually, it is our goal to offer financial assistance to parents without the means to get the best treatment available for their child.

With these ambitious goals, fundraising will be a major concern. So many of you have generously reached out to us personally and for that we are so grateful. Ed and I will be transferring the balance of our Prayers for Maria fund to the foundation. We did not actively seek any funding in the past, but we now begin to do so for the foundation. While individual donations will be greatly appreciated, we will focus predominantly on two areas for fundraising, and can use your help: (1) corporate donations and (2) events.

First, we would appreciate any help in securing corporate donations. The Prayers from Maria Foundation is now established as a 501(c)(3) non-profit corporation, and we have an experienced governance board, as well as a top-notch advisory board in place. We have also established a grant proposal review process (modeled after the National Institute of Health) to make sure we fund only promising research that focuses specifically on childhood tumors.

Secondly, we have witnessed the power of the various events that were held in Maria’s name - from children holding bake sales to bikers riding in poker runs – and we plan to carry on with this type of activity to fund research. We will keep you posted about our upcoming “Kids Curing Kids” campaign, and we encourage you to help us think of events, hold such events, and perhaps volunteer your time.

If you are interested in volunteering, making a donation, or finding out more please visit

On our website, we post various children affected by some form of glioma. These are beautiful children you’d see next door. As we worked on the site we had to keep updating that section as children continued to pass away on a regular basis. This is the harsh reality of gliomas. We have to stop this from happening.

Thank you again and again for all of your love and support.

Love,Ed and Megan

Monday, January 08, 2007

Update as of Monday, January 8, 2007

Hello Everyone,

We want to thank all of you for being so wonderful to us. I am glad that we have a comments section on the site so each of you can witness how much kindness and love comes to our family from so many different people in so many different places. I wish I could share with all of you what I receive from people on a daily basis—kind beautiful letters, cards and phone calls, support and encouragement from those that just want to help in any way they can, meals for our family, thoughtful gifts, loving words from people we know and people we don’t, so many children from toddler to teenager praying for Maria and reaching out to her with so much love in their hearts. Numbers of people who tell us how their lives have been personally touched by Maria’s story. Not a day goes by where we are not the recipient of some act of kindness. I personally have never felt such an outpouring of tremendous love like this before and I want all of you to share in it because it is truly something miraculous in and of itself. I see God at work here and I feel so blessed and lucky to see Him so close up through so many of you. In the midst of the chaos that we often see in this world—there is so much HOPE.

As you know, our last trip to St. Jude was filled with devastating news. Each trip to a hospital brings so much anxiety. We live our life at home from day to day maintaining as much normalcy as we can. We get into our swing and then it’s time to go back to the hospital where talking about the reality of a very deadly disease and our daughter seems to surround us and squeeze out every bit of happiness that we have. Trying to stay above the fray can be very challenging as you sit in an examination room surrounded by the walls of a hospital. Sitting in the exam room waiting for the results of the MRI can be nerve wracking. We sit and joke around with Maria and keep the conversation happy and upbeat as best we can. When the nurse came in and asked Maria if she wanted to go into the other room to color, my heart sank and I knew that it couldn’t be good. Dr. Gajjar soon walked in and confirmed “it isn’t good.” He then went on to tell us that the tumor had grown and Maria would not be here next year. He estimated that she had maybe two to three months left. Current relapse treatments are far from promising. He did not mix words. He is a good man and offered us any help or assistance he could provide. My initial reaction was what do we need to do next to safeguard her, to protect her. We have to do something. My insides hurt. Dr. Gajjar took us to view the MRI and I wasn’t able to hold back my tears any longer. I just wanted to go and be with Maria. To hug her and to kiss her and never let her take one step away from me—ever. I got myself together mentally as I went back to see her. She was sitting at a table chatting away with Dr. Gajjar’s nurse, Valerie, and a Child Life Specialist. She was entertaining them, and me, as I listened to her funny story about her brothers. Always so smiling and unaffected. I could see touched hearts in the faces sitting with Maria. They knew. Their jobs must be so difficult, but how lucky they are to work with the warriors they meet at St. Jude.

Out of any of our trips to St. Jude, this one should’ve been the one that broke me, but instead I looked at Maria and I knew I was not going to give up hope. I’ve written to all of you about struggling for an inner peace and I believe in my heart and soul that it was God who gave it to me that day. For the first time ever I felt true peace. I was comforted and filled with more hope than ever before. As I have told many of you, if Maria was given full knowledge of her prognosis I know she would look at me and say “Mom, don’t you ever give up on me.” And I never will. God tells us not to despair and so I remain hopeful. You can NEVER give up hope.

I hope that by knowing our experience we are giving back to all of you in some small way for your never-ending prayers for Maria. When Maria was first diagnosed I immediately knew Prayers for Maria are what we needed right away, because I very much believe in the power of prayer and what it can do. All of your prayers have made such a difference in our lives and I really believe they are helping Maria.

Maria is back in school now and happier and more energetic than I’ve ever seen her. She is going to celebrate her 7th birthday on Thursday the 11th of January. All this at a time when they thought she’d be in a hospice state. I can’t say what tomorrow is going to bring, but we are very happy today and I will never stop believing in hope and the power of prayer.

I am so grateful to all of you for your prayers. Your prayers have spread like wildfire from one person to the next and I know it has done so much for my daughter. How do we thank you for something like this? Our gratitude could never be measured. It is so deep.

I am attaching a song we’d like to share with you that WGAR in Cleveland put together after they interviewed us for their annual St. Jude radiothon back in early November. What a great place St. Jude is. Please keep all of the children and families there in your prayers and all children and families who suffer from lives touched by cancer.

I’d like to close with my favorite prayer from Mother Teresa that I try to say every day. All of you are such an example of what it is to radiate Christ. Thank you.

Dear Jesus, help me to spread Your fragrance
everywhere I go. Flood my soul with Your spirit
and love. Penetrate and possess my whole being
so utterly that all my life may only be
a radiance of Thee.

God bless all of you for making such a difference in our lives.

Ed and Megan