Wednesday, November 29, 2006

Update as of Tuesday, November 28th

Hello Everyone,

Today was a very sad day. Maria’s tumor is no longer stable. It has grown and Maria is now considered in relapse. We hesitate to tell everyone because we don’t want anyone to give up hope or to stop praying. We have not given up hope and we never will…no matter what. This has been and will continue to be in God’s hands.

Currently Maria is happy. She is full of life and is feeling great. Her blood counts were actually quite good and she has not lost any motor skills of any type. Dr. Gajjar tells us that he expects she will start to show symptoms in the next few weeks and that she will not be with us much longer. He is predicting two to three more months.

We will say this. The more time we spend at St. Jude and the more we get to know the people here, the more we know Maria is in the best possible place in the world. We received strong words today and we look to God now, more than ever, to guide us.

It is much too early to tell you what our next steps will be. We don’t know. We will need some time to find out all the current relapse treatments available and then weigh the odds of what is best for Maria. This is not about what we want to do or what we might do; it is about making sure that we continue to give Maria the best quality of life possible.

Whether we have 2 months or 60 years, we live every day loving our daughter and thanking God for blessing us with our little Sunflower.

God bless.

Love,
Ed and Megan

119 comments:

lworley416 said...

Am so very sorry about the news that you received. From everything I've heard, yes, she's in the very best place she can be! If anyone can help, it's the Jude!
Won't give up hope and won't give up praying!!!!!! She's in the Lord's Hands!

Know that I am praying so for you! But what's more important is what this passage says. It's my very favorite passage. It says that the Holy Spirit Himself is praying for you! Oh what comfort these verses bring!
Rom.8:26-27: Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.

Anonymous said...

Oh Eddy and Megan, I am so full of sorrow and grief tonight, and am hoping and praying with all my might that things turn around for Maria, and soon. Please let me know if there is anything I can do. I will be making inquiries regarding protocols for relapsed DIPG for the next few days to see what is out there.

Love, your cousin Nora

betsy kaiser said...

I know why I can't sleep tonight... Maria has been in my constant thoughts and prayers. As much as this saddens me and is not the news anyone wanted to hear, I will not lose faith or hope that good things are still to come for Maria and her family. I know not where to turn for guidance except for God's word; I read this earlier this evening...

"When Jesus heard this, he said, "This sickness will not lead to death, but to God's glory, so that the Son of God may be glorified through it."

"Jesus said to her, "I am the resurrection and the life. He who believes in me will never die. Do you believe this?" She replied, "Yes, Lord, I believe that you are the Christ, the Son of God who comes into the world."
John 11:4, 25-27

I am here to help you with anything you need to do, anything at all!

We love you Maria, Ed & Megan!
Love and God Bless,
Betsy & Family

Anonymous said...

Dear Megan and Ed

We will not stop praying for and believing in a Miracle for Maria. Many prayers and hugs go out to you and your family.

Allen Patrick said...

Dear Eddy and Megan,
Ijust would like to tell you that I and my family will be praying with you for Maria and we will never give up hope in God's love and goodness. We feel the pain and we will continue to follow the latest news from you.

Allen
Sabah
East Malaysia.

Anonymous said...

We will never stop praying for your Maria and your entire family. Whatever His will is you have the support of so many people. God bless you all-may He give you strength and hope. I still believe in miracles and am asking all the Saints in heaven to intercede on Maria's behalf.

Anonymous said...

My thoughtsa and prayers will continue for Maria and your family. Others could learn a lot from you about love, support and faith. I know you will continue to keep the faith. Thank you for the update on Maria.
God will continue to bless all of you.

Janet Terry (Friend of Katie's, who is Maureen's friend)

Michelle Pachter said...

My heartbreaks with this news! Know that we will never stop praying for Maria and will never give up hope!!! Though I have never met Maria I have come to love her through your postings and the stories shared with me by Maureen and the rest of her family. She is constantly in my thoughts and prayers.

May God give you strength over these next few weeks and months.

Love,
the Pachters

Trish Tartivita said...

Dear Eddie and Megan,

The entire Union Catholic community prayed for you this morning in unison over UCTV. Our religious leader, Mr. Wright, prays with the sisters of Mother Theresa every Thursday. He called upon the community to remember Maria and your family. We love you and are thinking of you daily.

Trish, Carmen, Victoria, and Bella Tartivita

Jennifer said...

Well, there are no words. I just want you to know that my prayer is for your strength, and for God's presence to be near you in all of your decisions. And for Mary to stay very close as well, to help you to be the best mom in a heartwrenching time of your life. My love as another suffering family, Jennifer James

Anonymous said...

I am so very sorry to hear your latest news. You are right, you are in the best possible place. St. Jude's is responsible for the protocol that enables my son to be a 6 year brain tumor survivor (Dr. Gajjar is responsible for saving much of his hearing!!).

A message I send to you is something that was sent to me (I have it attached to a picture of my son when he was going through radiation--I look at it every day)...Faith is trusting God with our lives. We trust that there will be enough strength and beauty amid all the pain to sustain us an to urge us forward.

Prayers and HOPE,

Sandy Barrow...Rocky River,OH

Ted Gordon said...

We'll never give up hoping and praying and praying and hoping that our little girl is going to receive her miracle!
Keep the faith, Ed and Megan! The circle of prayer that surrounds you is larger than life, and you have no need to worry about it going anywhere. And we all know that God's
plan is nothing but wonderful for all who believe!
Love always,
Ted, Deb and Teddy Gordon

Laura Lawlor said...

Ed and Megan-

You are in our thoughts and our prayers as always. Please do not hesitate to call Chris if you have ANY questions; anything we can do to help goes without saying. We love you!

Laura and Chris

Anonymous said...

We are all so very sorry to hear this terrible news. We are here for you in whatever capacity you need...now or down the road. We will not give up hope nor will we ever stop praying for your little Sunflower. I know that God is with you each and every step and I pray that you see this in your beautiful Maria. All our Love and Hugs! Rosaleen, Brian & Johnny

Anonymous said...

Hi Edward and Meghan
Your cousin Rose let me know the latest update. I actually knew Megan in grade school (my maiden name was Patten) I wanted to reach out and let you know that I do clinical trial research for Oncology for Johnson and Johnson. I have spoken with a friend who is a pediatric oncologist at Dana Farber regarding Maria. He suggested that you may want to reach out to a physician at Univ of Pittsburgh who specializes in brain stem gliomas for a second opinion and may have an option for refractory disease in cases like Maria's. If you would like his contact information please feel free to let me know and I can gather that information for your. He felt this might be a reasonable option as it would keep Naria at home with her family on a more consistenet basis.
You are always in my thoughts and prayers
Sincerely
Kathy (Patten) Hennessey
khennes2@obius.jnj.com
Home: 440-878-9991
Cell: 440-668-2398

Anonymous said...

Megan and Ed,

How my heart hurts for you right now. If it can be of any comfort, always know you have the support and love from so many--and so many you do not personally know.

It is in these situations that as human beings we want to know why, and question the reason for this pain. But ultimately, through our faith we know it is not for us to understand, and just as we are parents to our children, God is the parent of all of us. We have to trust in His goodness, which always prevails. We don't always get the answers in our own timeline, but in His own fullness of time.

Maria has been imprinted on the hearts of all of us. We will all continue to have faith and hope, and most importantly prayer that Christ continues to carry you through.

With much love,

Lori, Garon, Ellie and Maddie

Anonymous said...

Please know you are in our thoughts and prayers NOW more than ever.

Love,

Vickie, Rich, Emma and Kate Londino

Anonymous said...

Tonight, the 2nd graders at St. Richard will make their First Reconciliation. As we sit in the church, please know the many prayers that will be said for Maria during that time of peace and love. Rather than a standard crucifix, our church has the resurrected Jesus, with his arms open wide, looking out over the congregation. In times of doubt or sadness, I imagine myself doing a running leap and being enfolded into His arms. Sometimes the only comfort is to allow ourselves to be wrapped in His arms through our faith. I imagine you will find tremendous comfort because your faith is so strong.

Much love, The Fenton Family

Anonymous said...

Oh Maria, Ed & Megan -- my heart hurts for your family right now, I can't imagine the anger, frustration and all the other emotions that you are all feeling, as well as those of us that have grown to love all of you, through a website of friends. The prayer chain is NOW stronger than ever!

Caroline Pallotta said...

McNamara Family,
I just thought that you should know that the Saint Raphael School community is praying for your sweet Maria and your whole family. Today at 2:50, the wntire school gathered in the church to pray a decade of the rosary for Maria. Everyone has been touched by Maria. When I heard the news, I was of couse sad, but I still think that there is a miracle or two left in her. The only thing that we can do know is trust that God knows what he is doing. I know that He has a plan for everyone of us and definitely has one for Maria. I found the following webpage very inspirational(note the first line!):

What is a miracle? It is when the impossible happens.

It’s when doctors have given up on a sick child and for no scientific reason, that child gets well.

It’s when you’re down to your last dollar, have piles of bills to be paid, and a check arrives in the mail from some unknown source.

It’s when a hurricane comes through a town and your house is left standing with desolation all around it.

It’s when a child is born and you can’t believe how exquisitely miniature this new life appears.

It’s when you’ve prayed for a specific purpose and that prayer is answered.

It’s when there is no earthly reason something wonderful has happened.

Miracles take place everyday. Sometimes they’re very subtle and quiet, sweeping in like a touch on the face. Other times, it’s very evident and public. It doesn’t matter who you are, miracles can happen to anyone.

Why do miracles take place? It may be that God wants your attention!

When you believe in God, you gain an awareness of Him. You see everything in a new light. He shows His great power through the trials and tribulations of life, through nature and science.

God is in the impossible business. What is a miracle? Someone once said, “Coincidence is when God wants to remain anonymous.” Well, miracles are when God reveals Himself.

All glory and honor and praise belong to Him. Without Him there would be no miracles!

A note to Maria:
Maria,
We all love you and want you to get better. We will pray for you everyday. Your mom and dad are there for you, and so is the rest of your 'family.'

God Bless you all!

The Scalise Family said...

I'm so sorry about the latest news. The Lord does give us hope still because is the almighty King. He is more powerful than any illness. He has wishes and hopes for each and every one of us and he has a plan for Maria. We just don't know what that plan is yet. Please stay strong. We pray for Little Maria Every Single Day! With much love and prayer, The Scalise Family

Anonymous said...

When I heard the news, my heart was filled with sadness. Not for me, but for what you and your family must now face. Maria and the family will remain in my daily prayers. Do not lose faith. God has a purpose in all this, and it is good, even if we do not understand. We must keep faith. Many are supporting you through prayer so you are not alone in the spirit.

God Bless and may He give you the strenght needed to make the best decisions and move forward.

Anonymous said...

Ed & Megan - I'm very sorry to hear about Maria's prognosis. Please know that she is in our prayers and our hearts. I think of Maria daily and check the web site for updates. We are all here behind you praying and hoping for your miracle. If anyone deserves a miracle, its Maria. She is so lucky to have you two as parents - never giving up, even when times get tough. Please let us know what happens now. We will be thinking of you.
Cheryl Wirth (friend of Sheila O'Malley Fenton)

Anonymous said...

Dear Ed and Megan,

Words cannot express the sadness I feel for you, and for all of us who love Maria. I can't wrap my mind around the possibility of her not being with us, even though it has been hanging out there in the shadows all along. I want so much for this just to be a bad dream, and not reality. My family and I will pray even harder for you, and Maria.

The picture of Maria in the pilot seat is priceless. She looks confident, and so in control,yet she has an angelic glow about her. My daughter made it our screen-saver on our computer.

Just know that we all love you so much.

God Bless your family.

Love,
The Pallotta's

Julie Davanzo said...

I have been updated by St. Monica's prayer chain in Duluth, Ga. I am so sorry to hear this bad news. But we will all continue to pray for Maria, and never give up. She is such a beautiful soul with the promis of a great future.
All we really need to get through life is HOPE. We will always have hope for her and your entire family.
Julie

Anonymous said...

Please don't worry that prayers will stop for Maria; if anything, we're praying harder than before! She is in our thoughts, and in our hearts, constantly.

Bunny said...

Dearest Megan, Ed, Family and Friends, Let us pray together for Maria to receive that miracle now.
For 30 years I have been praying the following prayer from November 30 to Christmas, and God has always granted my needs and wishes. It is piously believed that whoever recite this prayer 15 times a day will obtain what is asked.
Hail and blessed be the hour and the moment in which the Son of God was born of the most pure Virgin Mary, at midnight, in Bethlehem, in piercing cold. In that hour vouchsafe, O my God! Hear my prayer and grant my desires, through the merits of Our Savior, Jesus Christ, and of His Blessed Mother. Amen

cecile birchler said...

Dearest McNamaras,

I beleive! I believe that this news is what it will take for a TRUE miracle to take place. The doctors, medicine, research, treatment have all done what they can do. It is only GOD, that can perform the miracle that I know deep in my heart WILL HAPPEN!

God loves for us to thirst for Him. He is calling the thousands of us who know Maria to keep thirsting. He is SO good and the source of all hope.

I know that this is the beginning of your TRUE miracle.

I believe! I thirst!

Love and undying prayers,
Cecile

Anonymous said...

Dear Ed and Megan,

I am writing because I was e-mailed to pray for Maria thru GESU school and because I too was affected by cancer. I recently lost my sister-in-law to a 3 1/2 yr battle with breast cancer. I feel for you and your family. We never gave up hope for our miracle and I am sure we got it...she is no longer in pain and I know she is an angel. your words thru your website are very touching. i am sure it does you good to write them down. keep your faith and do not sell your soul...Maria would not want you to do that. Children are so resiliant and trusting. Take comfort in her strength. She is a beautiful girl. With heartfelt empathy and love, I will keep praying for your Maria. God Bless and Strength.

Anonymous said...

What a gift Maria is giving to us all...yes, the present, pre-sent if you will. She is teaching us all so much about love and the perfection of the present, her gift. Her soul is on a journey of completion and how beautiful that you are the pieces of that puzzle, interlocking faith, hope and love...putting it together for all of us. We of course, are praying for you all, for peace and for joy and are sending more and more and more love.

Erin Sullivan Lally and family

michelle said...

Won't ever stop praying, won't ever stop believing in your miracle however it comes. Love you guys--big day today, my fingers are crossed and my positive thoughts are yours. The prayers are God's, but He'll know what to do with them. <3

Anonymous said...

Thank you for keeping this community updated. Please know that we will not give in and will continue to pray. As these postings may get harder to write, please note that they help so many people - even when the latest news isn't so rosy. It isn't in selfish or nosey way - that we just want to know "the latest" - but that it helps us to pray for Maria, for Megan and Ed, and for the boys. It is a way of letting us (this whole community that has united) assist you through the power of our thoughts and prayers.

Anonymous said...

Ed & Meghan, I was so sad when I read your update this morning. I wish the news was better. I will not give up hope for Maria, she can beat the odds, there are still miracles happening every day! Please know that you are in my thoughts and prayers daily and this will not change.

With never ending hope,
Jeff Bissett (Justin's dad)

Maureen Androsik said...

Your strength and faith is an inspiration for all of us. We will pray for your family. The Androsik Family

Anonymous said...

We will continue to offer our prayers and hope for Maria.

Anonymous said...

I was just given the information about your site and have been reading through it. We have had a very tough year helping our son recover from a traumatic brain injury and it was the help of so many loving and caring people who helped us each day, and continue to do so. We set up a site for our son also and just knowing that people were offering up prayers and Masses for our son was so powerful. It literally has sustained us to this day. I want you to know that while we have never met, all of you will be in our daily prayers and we will have our son pray for your daughter too. He loves to pray now since he has suffered so much pain. He always is so happy when he can 'pray forward' for others who are suffering. We will be in adoration on 12/1 and we will lift your family up in pray all the while. We will ask the angels and saints in heaven to join us, so that our prayers will be made perfect before Jesus.

The grace and peace of our Lord Jesus be with you all.

Anonymous said...

McNamaras--
I have been blessed to have Mrs Ritzler as my best friend for over the last 20 years. As she has shared her stories of many students over the years, no one is as dear to her as your lovely Maria. Over the last year, Mrs Ritzler has kept me in touch with Maria's progress and I check the website a few times a week to keep myself spiritually grounded. Although your posts have sometimes been difficult to read and harder to accept, I am amazed by your faith, spirituality and dedication. Through Mrs Ritzler and your family, you have touched my family's lives. We thank you. As you look to make difficult decisions, I have tremendous respect for your dedication to Maria's normalacy and her quality of life. We contine to pray for you.
The Robinsons,
Vannessa, Richard and Michael

Anonymous said...

Dear Megan and Ed,

We are very sorry to hear that Maria's tumor is growing again. She is such a wonderful gift, and each day with her is so precious.

We wanted to let you know that our daughter Katya had good response (three wonderful stable months) after her recurrence this summer with Avastin/irinotecan combo. This combo is currently on trail for adults with gbm, and shows very good results. Katya had little side effects, and improved significantly after the very first treatment. She was able to enjoy life until the very end.

We're sure you'll do the best for Maria. With prayers for your daughter and your entire family,

Maria and Sasha

Anonymous said...

Ed and Megan,

I am so sorry for your recent sad news. It breaks my heart. I am so inspired by your faith. God is giving you courage and strength. My love to you and the children.
Aunt Kathy Goldbach

Anonymous said...

Dear McNamara Family,
I have been praying for Maria everyday for the last several months and will continue to do so.
I will not give up hope or prayer. You are an inspiration. May God Bless and watch over Maria and your family.
Jean, Avon Lake

Anonymous said...

Please know that my family is praying for Maria everyday. We believe in miracles and we pray that God's plan includes a miracle for your family.

God Bless, Cathy, Bay

Anonymous said...

It wouldn't be called a "miracle" if good things didn't come at times of heavy burden. I have not given up hope for Maria and I pray that you do not either. I have a child in 1st grade at SRS also, and every night he leads my children in "extra Hail Mary's for Maria", and "one for her mom and dad too".
Thank you so much for sharing your story with us. Maria has touched so many people whom she doesn't even know. You have touched my life and taught me so much....and we've never even spoken. I, too, never take even a second for granted that God gives me with my children. He is working through all three of you, and I BELIEVE that he will show us all that if we continue to believe in Him and have faith in Him He will show us this miracle.
We pray for you every night, no matter how tired, no matter how late, because we believe that in Him all things are possible.
Our thoughts and prayers continue to be with you...God Bless.

Anonymous said...

Maria is an angel. Miracles do happen and me and my family will pray for Maria. My heart is with you and your family.
God Bless Maria.

Anonymous said...

I continue to pray for Maria. In fact, the children at St. Joseph's in Avon Lake are praying for her at school Masses. The women in my AA group in Avon Lake pray together for her every Monday evening. I have taken her again to Jesus at adoration, and He has assure me of His love for her and for you. Maria will be healed, in one way or another, and richest blessings will continue to fill your hearts and lives. Thank you for sharing your daughter, your love and your faith with this little corner of the world. You bless us all!
Lorene

Anonymous said...

Know that prayers are being lifted up in Columbus for Maria. Know that your whole family is in my prayers.
Trisha, Columbus

Anonymous said...

Praying for Maria and your family. We are asking God to touch Maria in a mighty way. May you feel His presence and feel His love and peace. God bless you all.

In Christ-
The Frith Family
Huntsville, AL

Anonymous said...

I learned of your site thru our church St. Monica's in Duluth, GA. I will continue to pray for your family's strength and for a miracle for sweet Maria. I wanted to give you a website of another little girl named Payton Wright who lives in Florida, my hope is that each of you can find comfort knowing you are not alone in this terrible battle over cancer.
www.porter-consulting.com/payton
Joy Dodson
Duluth, GA

Anonymous said...

We pray for Maria every day and are thinking of her always. Just remember that miracles do happen. When my grandfather was diagnosed with cancer, they said he had six months to live. He lived for six more years.

Anonymous said...

My heart goes out to you and your family. I know how hard your journey has been. One of my kindergarteners (I'm a teacher) was diagnoised with diffuse pointine glioma last school year. The similarities between Alyssa and Maria are amazing. Same age, same interests, same angelic look about them. Maria is about 6 months behind Alyssa in her battle. All of Alyssa's loved ones NEVER gave up hope as she endured various chemo treatments right up to the end. Don't lose hope, but know that this "monster" creeps up quickly. Have her teacher takes lots of pictures and get lots of hugs. Record her voice singing a favorite song. Keep all of drawings that she's made. I will continue to pray for Maria and for a cure. No one should ever have to see their little one go through something so awful. Stay strong and know that Maria, like Alyssa, has made a difference in this world. People now hug their own a little tighter, pray a little harder and stop to thank God a little more often. God Bless. Marcy (mmooney1@rochester.rr.com)

Deb Gordon said...

Dear Megan,
I will never forget what you told me about Mother Theresa! You told me that her faith remained and grew stronger even when she did not hear the lord speaking. Hold tight to what you know in your heart to be true. It's a miracle in itself to have worked beside one of the greatest miracles of our time. Remember that she has one more miracle to go and that is and will be Maria!
As I told you when we first got the news, I see Maria not as I do now every morning from the school bus, but as an older, beautiful girl!
All my love,
Deb

Anonymous said...

Dear McNamara family,

I learned about Maria over the summer and visit her website often. Today, my six year old son and I checked it together. I am very sorry the update wasn't better news. Maria and your family are in my thoughts and prayers and I will not give up hope. You are truly an inspiration and I thank you for sharing your family with mine.

Stay Strong,
Jennifer (Craft) Denning

Anonymous said...

Hey Maria,
It’s me, Kati. I just want to tell you how much you inspire me. You are the most lovable and adorable first grade I have ever known. You are so mature and so fun loving. I remember once during VBS I asked our group who Zachariah was and no one knew so I was going to tell everyone who he was and you raised your hand and said, “Hold on, Kati, I’m still thinking!” I thought it was great how even though you weren't sure of the answer, you still wanted to see if you could remember. I always think of this when I can’t remember something, I say, “Hold on, Kati, you are still thinking!” Maria, you are amazing and I love you so much!
Lots of Love to God's Little Angel.
Love,
Kati Corbitt

Anonymous said...

Today in church, I loved your shirt that said HOPE...you are so amazing. We all have learned so much from you and your family. THANK YOU.

Anonymous said...

Today in Church, Father Craig's words were so appropriate as I watched you and Maria. Mother's really are like magnets, although he spoke of the invisible strength of a magnet....I see that your strength is very much visible. Our family will continue to pray for you, Maria & the rest of your family so that you can continue to be strong. With Love....

Anonymous said...

We were saddened to see your last post about Maria. We continue to pray that miracles will happen for Maria and your family.

Toby & Ken

Anonymous said...

We are all witnesses of the miracle of Maria. She has forever changed the lives of many people and has made this world a better place. When we look at her pictures we see an angel of God. Her beautiful eyes shine the light of God upon us and her smile fills us with love.

Anonymous said...

Maria and family-
I continue to pray for you and your family. My heart breaks for you as you deal with the latest news and make choices for Maria. Our prayers will continue for your little Sunflower. We will continue to pray for a miracle for your family. Your faith and courage continue to inspire us. We pray more often, reflect on our blessings more frequently and look to your example of faith to guide us. Thank you for sharing your heart and your faith with us. Maria already is a miracle to us.

Anonymous said...

My name is Debra. You don't know me and until today I didn't know you. I live in Sagamore Hills and my children were in a playgroup with Lauren and Kyle Betz until the kids started going to school. I was sent Maria's prayer site and just wanted you to know that my thoughts and prayers go out to you at this time. I read a few of the stories and one of my favorite's is about "Trucker". It shows that there are good people out there. I also like the one where Maria responded to the child in her class who was afraid to die. Maria sounds exceptionally precious and a very positive, cheerful person. Becuase of her attitude and outlook she is truley an Angel. Hopefuly a miracle will present itself. This is the season for miracles. God will take care of her no matter what. Maria seems to have a lot of love and support which is wonderful. Maria is now in my prayers.

With love and support,
Debra Flynn

Anonymous said...

I learned about your website from a friend of mine. I have so much respect for you and your family. Although you did not sign up for this road to follow, you have ridden with such strength, committment and grace. The scenery may not be what you have hoped for, but you have seen the beauty. You should be confident that you have taught many people along the way about love, faith and hope. How proud God must be.

I am also the mom of an angel. Because of my son,I have met so many wonderful people who I would have never met before. He has taught me what life is about. I am blessed. Please know you have touched my life. Thank you. You are truly blessed.

Forever in my prayers.

Anonymous said...

Maria and family,

I am praying for the entire family. Being a part of St. Jude for the last 3 years, I have seen miracles happen to those who don't give up hope. Your family has more faith and love, which I know will have more effect on Maria than any drug. Keep strong, there are hundreds praying for you.

Jennifer Neal

Anonymous said...

we are praying for a miracle. today the gospel is Jesus curing the centerian's servent who was very ill, please, Lord give us another cure!

Anonymous said...

On Sunday, my pastor preached about Advent and the beginning of the church year being a time for HOPE. I could only think of Maria. We ARE holding onto hope and praying for a miracle. Thank you for sharing Maria with us and allowing her to touch so many of us with her story. May God bless you and give you strength and courage.

Anonymous said...

Hello Ed and Megan,
I met you two and Maria at St. Jude this past spring(in the radiation waiting area). My name is Jody, from Illinois, and my son Brock just finished up his chemo treatments for medulloblastoma. We've been home now for about 2 weeks. I've been checking in on some sites now that we're home, and am profoundly sad about the news from your recent trip back to St. Jude. You can never hear this too much....please, please hold on to hope and for a miracle. I continue to pray for Maria and your family every day!
Jody Bugaieski
jomar@dpc.net
PS: I'm wondering if you ever met up with the 13 y/o at St. Jude, who's also being treated for the same tumor as Maria?

Anonymous said...

I am heartbroken, but have not given up hope for your miracle for Maria. Our family will continue to pray for Maria and your family. May you receive all of God's Blessing's during this difficult time.

All of our love and hugs to you!

The Eisele Family

Jolliffe said...

Megan and Ed--

Our thoughts and prayers are with you at this difficult time. You have said to me before, "please don't ever forget", and I hope that you know that for every one post here, I bet there are at least 100 more people who want to post, but cannot find the words. You have invited us along on this journey, and no one will ever forget. You have changed the lives of many people in ways that you may not realize. We are all a bit more patient, hopeful, prayerful. We let go of the "little things". We hug our children tighter.
We continue to pray for the "Miracle that is Maria".
Love, The Jolliffe Family

Anonymous said...

Megan and Ed -
I wish I was able get the words down that I think in my head for your family. I pray and think about Maria as well as you both often and will continue to pray for that miracle. I hope you both realize what a true blessing and inspiration you are to so many. You have such a gift and I know Maria see's that in both of you. I am Catholic and I know you are as well, but if you get a chance in the next coming weeks there is a church called Church of the Advent in Westlake on Dover and Father Joe Miacco is one of the most inspiring preachers I know and has a way with healing prayers. He has prayed with my family on many occasions and has a comfort I can't explain. I know he would encourage anyone to come pray with him. My prayers are with you all.

Holly said...

Ed & Megan:
My prayers are with you during this very difficult time in your life. It is hard to watch your child sick and be helpless but you are not alone in this walk. God is holding your whole family in the palms of his hands. I will pray for you and your entire family that he will protect you and guide you. God is our Lord and Savior. Please believe him and. He is the reason for our life. I will pray for you and your family and pass this on to everyone I know.

Thank you and God Bless You!!! You are an inspiration to us all. Kiss your daughter for me. I have a 7 year old and I will be hugging and kissing her. Your story makes me realize how precious life truly is and she was truly a miracle, a gift from God. I am going to love her and appreciate every minute I spend with her.

Anonymous said...

God bless you and your little girl. I can't imagine how hard it must be for you, but you continue to have strength and I admire you for that. I have two small children of my own and as I watch them sleep at night, I thank God for the time he lets me have with them. I will pray for your little girl and your family. Happy holidays and again, God bless you. My daughter Emily says to tell Maria hi for her. I do believe in miracles, and I will ask God for a miracle for Maria.

ackmac said...

Megan and Ed,

Your example in working through this diversity is inspirational.

Prayers & blessings for Maria and your family,

Kirk and Mary MacLean

Kristin Van Euwen said...

Dear Megan & Ed
Not a day goes by that I don't say many prayers for Maria and your family. Stay strong and keep smiling. Thank you for everything that you have taught us about GRACE. We will never give up HOPE for a cure for Maria and all the others with this awful disease. God Bless you and know that he is holding you close during this awful time in your life.

Anonymous said...

If Maria had been cured immediately after her treatment, so many people would attribute that cure to science. Now that science is through and can not do much more for her we wait for the miracle! I believe it is coming for her. And those who would have questioned God's intercession cannot do that when he sends her health back to her now. He has to give you this challenge so that all will see it is his work that will cure Maria. Deep in my heart I believe you will get your 60 years.
God Bless you and do not give up hope!

Anonymous said...

Ed and Megan,
Maria has surely captured my heart. What a beautiful little girl. As I visit your website, I feel truly honored to share this journey with your family. I will continue to pray for Maria's recovery, GOD BLESS all of you!

Anonymous said...

Dear freinds,

You are in my prayers and heart.

Anonymous said...

Dear Megan & Ed,
Miracles happen all around us big or small. You and Maria work miracles on a daily basis. By letting all of us shadow you on this road that you are on, you have touched and changed so many lives forever. The full scope can never be fully measured because it truly keeps on growing and will forever. So you and Maria in just a very short amount of time have made a bigger impact on the human spirit then many can ever hope to achieve in their lifetime. You and Maria will live in all of us forever!

I truly believe that we are all children of God. As parents, we are blessed by God to have the opportunity to nuture, love, adore, guide and protect his beloved children on a daily basis. You and Maria have reminded us how precious our roles of being parents are just that.

Always remember that you are not alone! There are so many people who hold you tighly in their thoughts, in their hearts, and most importantly in their PRAYERS. We will never give up on the power of PRAYER or the HOPE for a miracle for all of you.

May God continue to bless all of you now and always!

The Hall Family

Anonymous said...

I am so sad to hear that your daughter is so sick. I hope you gain some encouragement from my words they come with every good intention: each and everyone of us was born to one day meet our maker. Not one of us who believes in Him and Loves the Lord, is able to say we shall not pass on into Heaven but live forever. Maria's time on earth is not known, none of us know how long our time on earth shall be, but what we do know is that each and every good Christian shall one day meet in our Father's home of many rooms. Live your life in the present, enjoying every minute of your time on earth because Graduation day will come for all of us, young and old, sick or healthy, big or small.

God Bless Maria and her family forever, until we ALL meet in the house of the Lord one day.

Anonymous said...

Ed and Megan,

Our prayers for Maria and your entire family will never cease. We will contue to hope and pray for a miracle.

Anonymous said...

McNamara Family,
I'm terribly sorry about the news that you have recently recieved. The students of Saint Joseph's school in AL are continuing to pray for Maria everyday. We hope and pray for a miracle, and for your family to stay strong.

Anonymous said...

Dear Mcnamara Family,
I am an eighth grade student and St. Joseph Avon Lake and i wanted to tell you how deeply sorry I am. All of my friends and I have been praying for Maria and Your family every morning. I hope that you all stay strong and keep your faith in God.
Love and Prayers Always!

Tim DeBarr said...

Megan, Ed and Family,
We are always praying for you and your Miracle Maria. She has inspired many and obviously has given great joy to all who have met her. We will continue to pray for all of you.
Love,
Shelly, Tim, Abby, Matt and Isabella

Anonymous said...

I am so sorry to hear that Maria's tumor has relapsed. My heart goes out to your family. I will continue to pray very hard for a miracle, and a cure. I will never stop.

After reading your post, I heard a song that I haven't heard in a very long time. It is called Next Five Minutes by Steven Curtis Chapman. It really seems to suit your situation very well. It talks about how everything comes down to right now, and living in the moment. Living like the next five minutes might be all you have. It's all about God, and it's all up to Him.

It is all in his hands now. and I know that he is going to do exactly what is right. and even if it isn't the outcome that you are hoping for, it's for a reason. and he will be there with your family all the way through. he loves you. he loves maria, and most of all, he loves the fact that you have turned this situation completely over to him. I know he is very proud of you for giving it all to him and trusting him in this time of need.

So, live the next five minutes to the fullest. and know that Maria is happy right now, she is having fun, and everything that she is doing is pleasing to christ.

please know that for each prayer you say for your daughter, there are hundreds of other people praying at the same time. So many people love your daughter. she truly is a miracle, regardless.

Never give up Hope.

Anonymous said...

Dear McNamara Family,

My 7-year-old son lit a candle for Maria last Saturday during mass and asked for a miracle for you. Then we went outside and prayed to the Virgin Mary for the same miracle, we have asked her for a couple, and believe it or not, they happened in the past. Both of my kids touched her hands and asked her to heal Maria. Our prayers are with you, God bless you and have a wonderful Christmas with your beautiful children.

Anonymous said...

Ed and Megan,

My thoughts and prayers are with you and your family.

God bless,

Arlene (Conlon) Dudas

Anonymous said...

Dear McNamara Family,
We are truly sorry to hear about the relapse. We have suggested at St.Joseph School, to our principal, to offer a decade of the rosary for Maria every morning with the whole school. We encourage you to never lose hope no matter what happens. Also we want you to know that your courage and strength are an inspiration to us and to all. Good luck and stay strong!

With love,
Students of St. Joseph School

Anonymous said...

Praying for Maria and your family today.

In Christ-
Jenny Frith, AL

Anonymous said...

Dear Mr. and Mrs. McNamara,

I am a tenth grade student at Westlake High School, and would just like to tell you, your children are precious, and your daughter is one of the most beautiful girls in the world. She is so full of life, and for that, I truley admire her. I'm very sorry your family has to go through this terrible experience, but there is no doubt in my mind that Maria will be the first miracle of this horrible cancer. Keep being strong, and hang in there, God will answer the millions of prayers for your family.

Your family is in my prayers everynight, and I know you're in many others.

God Bless, and have a wonderful Christmas!

Anonymous said...

Maria is such a beautiful girl! My heart and prayers go out to your family.

Anonymous said...

Maria is so adorable, I wish you the best of luck. Don't give up just yet. My heart and prayers go out to your family.

Anonymous said...

I am a 7th grader at Learwood Middle School. After reading about Maria I was in tears. She is such a beautiful girl! I wish things like cancer did not have to happen. All of my friends have been parying and many have links for your websight. My heart and prayers go out to your family. Good luck with Maria and in everything you do! Don't give up faith!!!! :]

Anonymous said...

We too have a daughter diagnosed with a diffuse intrinsic pontine glioma and can relate to your heart ache. Please never give up and know you have been an inspiration to our family. Also know that you and your family are always on our mind and in our prayers.

sjsherrard@adelphia.net

Anonymous said...

While we were looking at cards to send to our friends and family I came across the Target cards that donate 100% to the Target House at St. Jude's Hospital.. I have been praying for your family for many months now and it was the perfect choice to make... the cards are all designed by current St. Jude patients or siblings of patients ...my daughters' school in Rochester, NY has kept you in their prayers as well ~we believe in Maria and miracles God Bless all of you~

Anonymous said...

Dear Ed and Megan,
We continue to pray for you and your family. Your strength as a family and the inspiration and faith you pass to others is truly a blessed gift. Lets us all continue to pray for a miracle for your little angel.

Anonymous said...

I am so sorry to hear the news.
Please know that there are thousands of people that are behind you, and if you fall, we will all catch you. I continue to pray for you as much as I can, and my friends pray also.
I was looking back at an event that I attended for Maria, the 5k 1m fun run. I had accidentally fallen into the wrong group. I thought I was going a mile, when i was going 5k. The whole time, i was thinking, gotta do this for maria, i know i'm tired, but i have to keep running for maria.
I pray she never leaves you. God is alway there and has truly wrapped his arms around you and your family. You touch so many people in so many ways. Thank you for gathering the courage to inform us of her story so we can help fight in the battle with our prayers.
God loves you and is always there, I promise.

Anonymous said...

I believe in miracles and have seen God at work! Good luck to your family and Maria. Your in my prayers.

Anonymous said...

Maria is an angel here on Earth. I pray for strength for you and your family every day. My kids and I pray for Maria every day, she is such an inspiration.

Cathy Thompson, Va.

Anonymous said...

Hi,

We are praying for your family.

Mathew

Anonymous said...

Maria did a fantastic job at the Christmas Concert Last night. We are are still praying for her and your family everyday. I can't even imagine being in your shoes even for a day. Please know we are all here to help in whatever way we can too! I admire your strength and persaverance!
A mom from St. Raphael's

Anonymous said...

There is so much i want to say, but dont really know how to express it in words. Your strength is amazing to me. I am not a person with a strong faith, but your strength and conviction has made me question my own values and what I believe. Reading your blog and following you on this journey has made me parent in a completely different way. I hug my three kids a little tighter and a little longer than i used to. I play games when i used to say i was busy, I dont get upset about the little things so much anymore, and i let them go out and play in the rain. I will always remember Maria in my heart as she has changed me as a person and as a parent. If I were given the opportunity to meet anyone in the world it would have to be Maria. She cant be aware of how many lives she has touched or changed with this website. I think of Maria and your family often especially at this time and hope for this miracle happen for everyone. especially Maria.

Anonymous said...

Dear Ed and Megan,
My thoughts and prayers are with you and Maria. My heart goes out to Maria. She is in God's hands. God Bless her. I pray for a miracle for Maria.

Sincerely,
Connie Patrick, Ohio

Anonymous said...

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Anonymous said...

That was the most beautiful story about the little soul in heaven. If ever there was a story for Maria, this would be it. She is the miracle and our angel on earth. Please know that thousands are still praying for the miracle. I also pray for all of you to keep the stength and faith you need to make it through each day. May God Bless you with a most peaceful miracle filled Christmas.

Jolliffe said...

McNamara Family,
Thinking of you all again today, and praying that you are experiencing the joy of the Christmas Season.
With much love, The Jolliffe's

Anonymous said...

Maria IS the miracle. She has touched so many lives including mine. I will continue to pray for her and your family. The Brave Little Soul is a message sent from heaven. How beautiful this story is. It helps to understand Gods ways. You have been blessed with an angel from heaven. Merry Christmas and may God bless your family.
Jean Avon Lake

Sunshine36 said...

Stopping by to check in on Sweet Maria...I am praying she and the rest of you will have a Wonderful Christmas and A Blessed New Year..
Much prayerbear ~HUGS~ to you~
Teresa

Anonymous said...

The miracle of maria is entwined right here in these over 100 comments. the stories of how Maria has made their lives and relationships better speaks volumes. God's purpose is right here, and even if maria doesn't get the miracle everyone has been hoping for (which i still believe she will!) she still will have made miracles happen for someone else. that truly is a gift from God.

i hope all is well. Happy Holidays!

Anonymous said...

Dear McNamara Family,

Enjoy the Christmas holiday with your precious children. You are incredibly wonderful parents, and such an example to everyone. God Bless you all, and know that you are surrounded by love and prayers. God Bless Sweet Maria. She is truly an angel on earth.

Anonymous said...

Dear Megan and Ed, We have been following the progress of Maria for several months now after hearing about her illness. Please know that she has been in our prayers and will continue to be. Have a beautiful Christmas with your children and your family and hopefully the coming New Year,with the grace of God,will bring better news. Our Mass on Christmas Day will be offered up for Maria that God will shine down on her and heal her. Love Mr. & Mrs. Biggs (Jerry, Kevin, Brian, Colleen, & Bridget)

Anonymous said...

Merry Christmas

With Love,

JJ, Jim, Diana & Nikki

Anonymous said...

Merry Christmas McNamara Family!

I pray that you have a blessed holiday and new year.

My family and I continue to pray daily for Maria and for her complete healing.

Anonymous said...

Dear Ed and Megan
Just wanted to wish you and the Family the best over the holidays, and please give a hug to Maria for me. I know you both have got to be exhausted by now, but keep your chin up...A new year is coming, along with a whole new sack of Miracles.

John Gentry...aka Trucker.

Anonymous said...

We are sitting watching a family movie and Maria came to my mind. We stopped and all said a prayer for a miracle this New Year. I hope you enjoyed Christmas and felt the love and prayers from all over the world. We know HE will answer our prayers.

Love to you all,

Anonymous said...

Maria is in my prayers and i will not give up hope i will pray and pray and pray till she is much better.

God Bless you, you are in my prayers

Anonymous said...

i'm very sorry for the news you found out but you are in my prayers

God bless you

Anonymous said...

I just read an article in the National Foundation for Cancer Research newsletter regarding pontine glioma that gives hope for the future. I wish that this could help Maria, but I think you would be happy to know it could help other children in the future.
The article is titled "New Frontiers in Cancer Drug Development" by Michael Wang, MD, PhD. Here's an excerpt: YM BioSciences Inc. has recently received the approval from the Office of Foreign Assets Control (OFAC) of the US Treasury Dept to import nimotuzumab (TheraCIM hR3) into the US for the purpose of clinical trials in pediatric patients with pontine glioma. Nimotuzumab, a monoclonal antibody that inhibits the Epithelial Growth Factor Receptor (EGFR), has shown great potential in treating this fatal childhood brain tumor. A monoclonal antibody is a type of protein that is capable of specifically recognizing its biological target. The target IGFR is a molecule that plays important roles in stimulating cell growth and has been shown to be highly expressed on the surface of pontine glioma cells. Nimotuzumab specifically targests and inhibits EGFR, thus stopping the growth of pontine glioma cells. Preliminary results derived from a phase II clinical trial conducted in Germany using nimotuzumab have shown great efficacy in shrinking pontine glioma tumors in children. Currently a large scale phase III clinical trial is ongoing in Europe testing nimotuzumab in combination with radiation for the treatment of this type of cancer. Nimotuzumab is currently being reviewed for clinical trials in the US for treatment of childhood pontine glioma.
Anyway, you may be aware of this already, but if not, I thought you might be interested to hear about it. Prayers continue for Maria.

Shana Hqaywood said...

Maria-
I missed seeing your smiling face today Dec 28,2006. I hope you and your family are doing okay. My thoughts and prayers are with you. When you come back to St. Jude, I want to hear all about what Santa brought you.
Love,
Shana Haywood RN, Sedation Team

Anonymous said...

I have been praying for Maria and your family since hearing about Maria's illness through a friend. I hope and pray the new year brings the miracle that will make Maria well. God Bless you all.

Anonymous said...

don't give up hope

Kory Betz said...

Ed & Megan,

Over this past Christmas holiday you all were in my thoughts. The strength you have is amazing and Maria is so blessed to have you as her parents.

No matter what the days bring ahead, God will be there for you as you look to Him. Stay strong....the Lord will never leave your side as long as you keep putting this in His hands. I too am going through a personal struggle of hope and faith and what I have gone through in my life does not in any way equate what you are going through, but it still requires strength, courage and complete trust. I hope that you know deep in your heart that no matter what our futures hold, God has a plan and a purpose for our trials. Even when they seem unfair and hard to believe, there is a purpose.

I was married to Edward's cousin Ted and because of that I was able to go to your wedding and Megan, you and I were pregnant for our first children at the same time. I have grown to care for you over the years through family and this web site and I wish at times that I could take your pain away. As close as I am to God, I too question at times the reasons for God's purpose in our lives but I try and stay strong for my children as you are doing for yours.

You have so many people out here-- all over who are holding you up in their thoughts and prayers. When I turn in tonight for bed, Maria and your whole family will be on my mind and in prayer through the months ahead.

You are giving Maria all the love and support that she deserves and the best life possible.

As you pointed out in your last update,who really knows how long we are here. Even though it sounds all too familar, it is what it is. Live your life to the fullest and tell people and family as much as you can just how much you care and love for them like I am expressing today for you and your children. Many of us have been there right along with you so are never alone.

Love and prayers,
Kory, Lauren and Kyle Betz
(Cousins thru marriage on Edward's side)

Anonymous said...

Your daughter is adorable and I will pray for her all my life untill she gets better!! Love and Praying for you guys...

s long ago friend

Joanne Critomer said...

She will get better. God looks down on what you are doing and he will make things better. He is watching everything you are doing and hears everyone's prayers. He won't take Maria. She has a brilliant future ahead of her.