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.

Love,
Ed and Megan

29 comments:

Anonymous said...

Ed and Megan,
I am so inspired by all of you, especially Maria. The strength you possess is beyond any I have ever witnessed before.
Please know that the students and staff at SS.C & M are always asking about Maria and praying for her. We refer to her as "our special friend".
Maria is a miracle and will continue to be a miracle.
Being a teacher I am so pleased to hear that Maria is enjoying school. School is a place where worries can be left behind.
I refuse to give up hope as do my students.Maria is very blessed to have parents like you two.

God bless you and Maria always,
Gina Edgehouse

Jill Cuadra said...

To the Wonderful McNamara Family,

You all have definitely spread the fragrance of God to all that have been praying for you and Maria. You said that "if you could give back a small part...."- you have given back a tremendous amount! The prayers will never stop. The peace of God is everlasting. We continue to stand together in support of your family, and especially little Maria. Love to you all!

Anonymous said...

MY SON JAMESON IS ALMOST 7 ALSO.HE WOULD LIKE OT KNOW IF HE CAN BUY MARIA A BIRTHDAY PRESENT?I HAVE READ HIM SOME OF YOUR JOURNAL AND HE UNDERSTANDS A LITTLE ABOUT MARIA BEING SIK.HE WITTNESED CANCER IN MY AUNT FIRST HAND.

I ALSO WANED TO ADD THAT WHEN I WAS IN FIRST GRADE MY VERY BEST FRIEND WAS DIAGNOSED WITH AN INOPERABLE BRAIN TUMER.THEY HAVE HER 48 HOURS.THIS PAST MAY SHE GAVE BIRTH TO A PERFECTLY HEALTHY BABY BOY,OUR MIRACLE.WE WILL CONTINUE TO PRAY FOR YOU AND YOUR FAMILY.
AMANDA_HUEBNER@YAHOO.COM

Betsy Kaiser said...

Just thinking alot about you guys today and saying extra prayers for Maria. You know I am right there with you and will never give up hope. That moment we had in April in the parking lot, Megan, is forever etched in mind. I knew then, also, that prayers for Maria was the most important thing for her. I could feel it from you in your voice and see it in your eyes. I think of that moment often. I know that you have strengthened my faith. Thank you.

I am so glad God has given you peace and pray that it continues to spread through everyone that knows Maria and her family.

God Bless You-
Love, Betsy

Anonymous said...

I just wanted you to know that your faith has brought others to God. Others who were not filled with His faith, are now faithful because of you and your family.
thank you for your gift to us.
BELEIVE.

Anonymous said...

HAPPY BIRTHDAY MARIA! That picture is wonderful to see her being a NORMAL child.....I think that prayer is already working for her to be vibrant, and carefree. Keep the FAITH!

Anonymous said...

Happy Birthday Maria
Ed and Megan you are always in my prayers. You are a constant reminder to me to always enjoy my kids because you never know what can happen.

Love always,
Katie Rechin Stric

maria dorsky said...

Happy Birthday Maria!!!!!
We are so glad that you and your family enjoyed Christmas. It is so exciting that you are "7" in "2007." We hope that you have a very special day at school, and fun with your family, too. We pray for you everday. We have friends that go to your school, and thay asked us to pray for you in April, and we haven't forgotten you any day since. P.S. - You and I have something in common, our name. In Italian, it is the name of our Beautiful Blessed Mother. She is watching you and praying for you, too.

To Ed & Megan,
Words cannot begin to describe what you are doing for others. The Faith and Courage that you share is what we have all been taught, but very few are able to walk with the Lord when faced with such a heavy cross.
Your beautiful Sunflower will continue to bloom from which ever garden she will call home.
Love, Courage, Hope, and Prayers are with you. God Bless you & may the Lord hold all of you in His arms and carry you through the days ahead.
Maria Dorsky

Anonymous said...

This is Jody again, from Illinois. Brock "the Rock" (medulloblastoma) is my 12 y/o son. We met you two and Maria in the Radiation waiting room area this past June. I have just read your latest sad entry and want you to know that our prayers continue for precious Maria and your family. May I just say that I am in AWE of you, Ed and Megan. You talk about seeing God at work through other people....well, I am seeing God at work through you two as well, and admire your unbelievable poise and strength. Thank you for continuing to update during this very difficult time!
Love, Jody Bugaieski

Lydia (Nassif) Anderson said...

Happy 7th Birthday Maria!!! Hope you have a wonderful birthday. It is so exciting to be 7!! What a big girl!

Ed and Megan, we pray for you and your family daily. You are such an inspiration to others and your strength in this tremendously difficult time is to be admired. May God bless all of you and just know that you are in our thoughts always.

Love, Lydia, Olivia and Sarah Anderson

Anonymous said...

There were tears in my eyes as I read your last post. There is still so much hope and I will never stop praying for your beautiful family. I will pray for Maria especially hard on her 7th birthday tomorrow!

Anonymous said...

Happy, Happy 7th birthday to Maria, and may she continue to LOVE her life for as long as she is here! What a gift to the world she is - it is incredible to think of the difference one little girl has made in the world! My prayers continue for you and your family, and may the inner peace you found stay with you and hold you through these difficult days.

Anonymous said...

Happy Birthday, Maria! I hope you have a wonderful day! I don't know you personally and you don't know me at all, but my love goes out to you!

Ed and Megan,
You don't know me, I work at The Shamrock Companies and we think and pray for your family a lot. I also know about you from someone who goes to my church. I just want to tell you that God blessed Maria with wonderful parents. Not every parent would keep so positive and do all the research you have done. It is plain to see how much you love your child. Just remember God loves her even more!!! No matter what happens, Maria is going to be right where God wants her. Who could ask for more - keep the FAITH!!!

Anonymous said...

Happy Birthday, Maria!! I pray for you and your Mom and Dad every single day. I hope you get lots of cool stuff for your birthday and that you know how many people like me, that you don't even know, you have touched. You are very special! Have a wonderful birthday!

Sandy Barrow said...

Ed & Megan, I am including a link to virutaltrials.com--don't know whether you've checked things out there or not--but if it's concerning brain tumors, it's there. The link I have included is a list of all brain tumor centers in the US and I think other countries. From there you can go down by state/country and find the center and click and it brings up a list of contacts with phone numbers and e-mail addresses. http://virtualtrials.com/btcenters.cfm

I am also checking on my pediatric brain tumor internet lists that I am a part of for any other information. I do know that there was a DIPG conference back in the fall (?) in California where there were several speakers. I will forward anything I can on.

I am so sorry that the facilities here were not able to help and do seem to be lacking in clinical trials. The folks at UH saved my son's life, but he had a totally different tumor.

You both have the right attitude--like I've posted before, you NEVER give up hope.

Prayers and Happy Birthday, Maria,

Sandy Barrow
Rocky River, OH

Irene Mayher said...

Happy Birthday, pretty girl!! I miss you!
love,
Irene

Anonymous said...

Happy Birthday, Sweet Maria!!! Have a FUN day, honey!

Ed and Megan,

I am always speechless after reading your posts. You are incredibly gifted writers to be able to convey all of the passion, emotion and reality in everything you have gone through over the past 9 months. I pray for your family and for Maria every night. Even when I am exhausted, I make sure I pray for God to place his healing hands on Maria, and to give you the strength and peace you need.

We love you. Kiss your little princess for all of us on her 7th birthday!

anne hart said...

Happy 7th Birthday to your little angel! We continue to pray for Maria and your strength. Reading your thoughts is inspirational. My 2 year old son had a kidney tranplant this past May. He is doing very well now but was given a poor diagnosis at birth. We put our faith in God's hand and never stopped praying. The peace that you are feeling reminds me when I put my faith all in God and knew everything was going to be okay. We continue to pray for your peace and strength.
May God bless you and Maria. She is a beautiful and special little girl. She is very lucky to have you as parents. Enjoy her special day!
Anne Hart

Anonymous said...

happy birthday, maria. we pray for you every day. may god bless you on your special day. love, the fanta family ps. grandma coughlin is watching over you.

Anonymous said...

Just look at the map of visits to this website...if only Maria could know how many people are wishing her a happy 7th birthday tomorrow! That has to be a record number of people hoping for the happiest 7th birthday ever!

Anonymous said...

Hello Megan and Ed,

I have recently been thinking about "out of the box" treatments for Maria. I remember reading an article about the use of a device called "cyberknife" to alleviate/reduce symptoms of Parkinson's disease. I checked the internet and discovered that this procedure was approved by the FDA in 2001 and is performed in 6 facilities in the country. It is now being used on tumors that are considered "inoperable". The list includes pancreatic, liver, lung, and a myriad of brain tumors including gliomas. The most experienced cyberknife treatment center in the world is at Stanford Hospital where it was first developed. The website address is www.stanfordhospital.com (look for cyberknife under the neurosciences option). Georgetown University hospital also has an informative section on the cyberknife on their website [www.georgetownuniversityhospital.org]. I have no idea if Maria would qualify for this procedure and I have no idea what the success rate is but since it is painless, non-invasive, and done on an outpatient basis it might be worth investigating. I will continue to pray to Our Lady of Knock Ireland that she will guide you in your search. God Bless,

Colleen O'Shaughnessy from St. Raphael parish

Anonymous said...

Happy Birthday, Maria. Your mom & dad celebrated your birth 7 years ago and they celebrate your precious life today.
You and your wonderful family are in my daily prayers.

Anonymous said...

Happy Happy Birthday Maria!

May you have the most wonderful day filled with much love, happiness and lots of fun!

Ed and Megan--the prayers never stop. May the Holy Spirit continue to guide you, and Christ continue to carry you. It is so evident in all you say and do how close our Lord is to you now.

Much love to all of you!

Lori Gentzel and family

betsy Kaiser said...

HAPPY 7th BIRTHDAY, SWEET MARIA!!!!!!!

Special wishes for you today that all of your dreams come true.

So many people love you, as we do!

Love,
The Kaiser Family
Rachael, Alec and Evan
Eric & Betsy

Anonymous said...

Happy Birthday Maria! Have wonderful day! We continue to offer our prayers to you and your family.
The Mulgrews -- Kevin, Kathleen and Owen

Anonymous said...

Happy Birthday Beautiful Maria!! We think of you every day and we hope today is full of joy for you and your family!!

Love,
Erin, Claire, Jim, and Marguerite Burtzlaff

Anonymous said...

I am always reading the website to get an update and sharing Maria's story with my friends and co-workers.

I too am a friend of friend. My sister Lori is a friend of Ed and Megans from high school.

Maria is an inspiration.

This year on Christmas, my nieces and nephews went out caroling. Kind neighbors were generous and gave them a few dollars. When they got home, they were SO EXCITED to donate thier money to St. Judes for Maria.

I am obviously a proud Aunt all year. But this was so special. Your family is spoken of often and the kids talk about Maria like a friend the don't see, but one who is thought of often.

You are thought of often. Thank you for helping others in your pursuit for Maria.

Dean Steadman said...

Happy late birthday, Maria! I hope you're doing well and haven't eaten too much cake.

Congratulations on the new foundation. I'm very excited about the direction that you're taking and am confident that we'll see some amazing results.

You've got a whole community of family's who've taken this journey out here to call on. Please know that you're in our hearts at all times and that we're constantly praying for you.

All our love,

The Steadman's

Dr.Trotts Office Staff said...

We really enjoyed having Maria in our office and think of her often. She is in our thoughts and prayers and we would love it if she could come by to visit us here at the office, just to say hi. We were happy to hear she had great holidays and a nice birthday and wish you all the best days ahead. Love, all of us at ENT Health Services.