Happy Birthday Maria!

Maria and Uncle Ryan - Christmas 2006


Maria and Mackenzie - January 2007

Hello Everyone,

It has been a while.

We wish you all God’s blessings in the New Year and hope that Christmas brought joy to all of you.

We went to Florida for Christmas. My brother Ryan got married! He is 14 years younger than me, and the baby of 6 kids. He was very dear to Maria. She held a very special place in her heart for him. I can remember back to her Christmas concert at school the Christmas before she died. She had a reading. Ryan brought flowers for her. We had just received the news from St. Jude that she had two to three months at the most. We of course never shared that with Maria. I can remember that she wanted Uncle Ryan to carry her out to the car. He had to go back to Law School straight from the concert. She did not want him to let her go. She held onto him very tightly. Finally, I told Maria it was time to say goodbye and that we had to get home because it was getting late. It was also quite cold outside. She still did not want to go. It was odd. When we finally drove away Maria suddenly started to cry. I said “Maria, what is wrong?" She said, “I’m afraid I will never see him again.” She was distraught. It shocked me. He would be back after Christmas in a few weeks, but she was afraid. I worried that she was having a sixth sense about things or had heard something. After that, I became firmly determined to continue to focus on living, not on dying, and that made a difference to Maria.

Ryan and his fiancée, Catherine, asked Maria to be a flower girl along with her favorite cousin Mackenzie, who is her age. They were both so excited about it. Maria talked about it all the time. I was excited right along with her, wanting to give her the will to make it and happy she had something to look forward to. I quietly prayed to God to allow her to make it to the wedding. As we know, He had different plans for her.

We went to the bridal luncheon. Mackenzie received a gift with all sorts of goodies that a little girl her age would love. I was so happy for her, but I couldn’t help but think about how much Maria would have loved it too. Aside from the attention walking down the aisle, something like this was so Maria. She would have loved the pretty dress Mackenzie wore. I could almost see Maria with her, smiling. Mackenzie and Maria were very close, like sisters. Mackenzie misses her buddy. My heart aches that she had to experience a loss like this at her age. My sister’s family mirrors mine in children--a girl and then three boys. Our kids are all the same ages. Now when they come into town to stay with us, Mackenzie is alone with all the boys. I know it is hard for her to be without Maria. It kills Ed and me to see her sitting or playing alone.

While in Florida, my mother had a dream. She saw Maria, along with all of her cousins, playing on the beach. Her cousins said to her “Maria, you can’t be here. You are in Heaven.” Maria told them “I can be here with you, and I am.” I don’t know if Maria is always able to be with me, but I did know one thing for certain, and that was that she would never miss her Uncle Ryan’s wedding for anything. I knew she would be there that day, and I felt her presence suddenly when the vows were exchanged at the altar. I felt as though she were standing right there by Ryan’s side. Something tells me she was.

This Christmas I felt a deep gratitude to God in my heart. I thanked Him for loving us so much to give us His only Son. I know He understands how it feels to lose a child who has had to suffer. Because of His unbelievably loving and compassionate act, Maria has a place in Heaven, and hopefully I will too someday. Having a child in Heaven, I think often about what it will take for me to get there. I pray hard and ask Maria to help me.

I will not pretend to say that because I believe in God I am ok. I do struggle. The pain is deep and a kind I have never experienced before. If I allow the loss to penetrate deeply to my core, it feels debilitating. It is not only emotionally, but physically painful. My heart physically aches. I have heard that people can die of a broken heart and it makes sense to me now. I understand it. Somehow you walk forward in life and try to keep it at bay, just below the surface, trying not to allow it to go too deep. There are times, though, when it is triggered and the pain rushes in. I think it’s ok. I need to feel it sometimes. I have also discovered that one of the keys to curing my sadness is to look outward, not inward. Inward to myself and my sorrow is a dead end. Outward has beautiful possibilities. God has so many graces to give.

Maria and I were extremely close. Our bond was special. We had a deep spiritual connection. When I look back on Maria’s life I believe God had chosen her, even before her diagnosis. Maria had a pure and innocent, sincere and unhindered faith in God. She simply believed. He knew what was to come and He took every opportunity of openness to Him to create something beautiful out of her life.

If you think about it, God is Love, and ultimately He can only make what is Good and Beautiful. I think about the Cross. Crucifying people was a disgusting and ugly practice man had come up with. God took it and, through Jesus, turned the suffering of the Cross into the most beautiful act of Love. Now we cherish the Cross. God took Maria’s cross and even in death made it beautiful. After she died, all signs of her illness were taken away. She was the most beautiful we had ever seen her. She was luminous and filled with the light of Heaven. Fr. Tim, Ed and I were blessed to witness this gift. Thank you Lord. This has reassured me. The memory will be with me forever and has lifted my faith.

Maria’s birthday is today, January 11th. God gave Maria to us 9 years ago. It is one of the best days of the year. We make it a Holiday in our home. We want it to be a tradition—a day that the boys look forward to all year and hopefully carry on with their own children. We celebrated her life today and had a fun day planned. The boys remembered Maria with so much love—as they do every day. Our love will never fade. It grows stronger with time.

Happy Birthday, sweet Maria. I tried to imagine what your birthday is like in Heaven. I know it is better than anything I could ever imagine. I want that for you Maria. I hope we are with you. I thank God for letting me share in His creation. He blessed me with the most wonderful daughter in the whole world. I can’t wait for the day when I can reach out and wrap my arms around you forever. I am so lucky to be your Mom. I love you.

We love you. Forever. Because Love never dies.

Love,
Mom and Dad, Eddie, Aidan and Blake

Love

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. Shine through me and be so in me that every soul I come in contact with may feel Thy presence in my soul. Let them look up and see no longer me but only Jesus. Stay with me and then I shall begin to shine as You shine, so to shine as to be a light to others. --Mother Teresa

We love you Maria.

Love,

Mom and Dad, Eddie, Aidan and Blake

Update as of Sunday April 13, 2008

Hello Everyone,

It has been a long time since I have written a post.

Megan does a much better job than I could do if I spend 2 weeks on researching the English language.

But there are some things that I want to tell you, so expect this post to be disorganized, direct and brief.

First and foremost, it is more difficult than I could have ever imagined being without Maria. Every day we feel the emptiness. Maria was the leader, translator, negotiator, disciplinarian, and friend for the boys. They would listen to her, laugh with her, fight with her, draw with her and pray with her. It is like she is still at school or at a friend’s house when I am home and she is not there. I think about her all the time.

I remember when Megan was on bed rest with Blake and I was so lucky to take Maria to the bus stop every day. I would sing the song “Here comes the Bus, do do do do, here comes the bus and I say, it’s alright. Do do do do do, do do do, do do do do do” to the tune “Here comes the sun” a song by George Harrison from The Beatles' 1969 album Abbey Road. And every single morning at that stop, she would complain and say to me, “Daddy, stop singing that silly song”. That memory will never leave my mind.

I love helping anyone with any questions, we get many other families that call our house and ask us our opinions, thoughts, questions, who and how to contact people, what did we do, what did we think about such and such, did we look into this treatment or that treatment, what would we do differently today, etc. And I do it every time and it is never a bother. I can still remember the day we found out the diagnosis of Maria (April 1) and realized how clueless I was…two years have passed and I have met so many great doctors and I have read so much about Diffused Intrinsic Pontine Gliomas that I know I understand the disease better than some doctors…but I also know that I know very little and that the doctors on our medical advisory board and many other doctors know a hell of a lot more than I ever will.

I also get a lot of questions from friends, family members, acquaintances and people I just meet. Here is one I got the other day. “ Ed, how often do you get sad and cry?” At first I said to myself “What the heck kind of question is that, you have a lot of guts to just flat out ask me something that personal, besides, everyone knows men don’t cry and I never get sad.” ……..so I responded to my mother and said, “I am sad everyday, but I can’t let it get in the way of supporting my family. Work is important and is a great distraction from reality.” I also said to her “ the pain has not diminished even a little and at times it feels worse when I see a photo or hear a story about Maria……and I cry almost every single day..usually driving to or from work with the radio playing some song about a little girl or a daddy losing his daughter to marriage or a little girl growing up or going to prom or sometimes hearing about another little girl doing something great…Easter sucked and I didn’t even see that coming…..a million beautiful girls all dressed up at church in their Easter outfits…they all looked so beautiful and I realized that we buried Maria in her Easter outfit…..I actually cried in church…..oh, don’t worry, no one saw me………..

You know what else made me cry recently, an email I received from a young woman named Kati Corbitt. Kati was Maria’s group leader at the St. Raphael Vacation Bible School (it is a week during the summer and the kids have an absolute blast…you don’t even have to belong to the parish to go (at least I don’t think you do) you should send your kids …anyways, Kati took great care of Maria that week and made sure Maria had a great time. Well, we got an email from her asking us if it was OK that she form a relay team in honor of Maria for the American Cancer Society Relay for Life of Bay Village. She has started this team with a few of her friends and Megan and I are so thankful and touched. The picture in this post is of Maria and Kati during that week. The team is called Hugs For Maria.

Please check out everything that Kati is doing for ACS. ACS is a great cause and I am asking you “brother can you spare a dime” and log on and support Kati and her friends to help ACS. Even if it is just a dollar…let them know we appreciate everything.

Here is the link http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeOhioDivision?team_id=233537&pg=team&fr_id=6905

What else is going on……….today was another warm day, must have hit 40 degrees, wow is that warm, I was beginning to think we lived in Alaska…thank God for that global warming.

Our foundation is growing more and more every day. We are so excited that we made enough money from the Soiree and all the other events that we are going to announce the opening of the grant application process and hope to award our first significant grant by the end of the summer, thanks to all of you for your support.

The foundation has so many other events coming up including a jewelry sale, the annual motorcycle poker run (thanks Trucker) and of course We will soon be having our 2^nd annual (third if you combine the one FOR Maria with the ones FROM Maria) 5K run 1mile walk on July 12, 2008. Check that out too http://www.prayersfrommaria.org/events/5k.html# . Mark down on your calendars the 12^TH!!! Some people have asked me if this is the same event that Marc and Emily Quayle are having. It is not. The Quayle’s are working on forming their own foundation with a different focus. They are having their own run to celebrate Sophie’s birthday. They told us it is to raise money to support St. Jude, 501 C 3 organizations and to fund needy families with dinners and other needs. We support their calling and will help them in any way we can.

Our foundation continues to focus specifically on glioma research and providing support to the families. Our main goal is to find a cure! We are very excited with how much progress we have made toward our goal! We will soon announce the opening of the grant application process and are looking forward to awarding our first significant grant very soon! Thank you to all of you for your love and support. We could not be doing this without you!! Know that by helping us in even the smallest way you have contributed to something very great and meaningful.

That’s all folks! I can’t think of anything else to tell you about except to eat your vegetables!!

Thanks for your continued love and support.

God Bless,

Ed and Megan

Happy Thanksgiving...in February

Aidan, Maria and Eddie - Thanksgiving 2006
Hard to believe this was but a year ago. Maria was doing so well.
That tumor came back and we just couldn't stop it.
We were so helpless. I ask every day--
What would have stopped it? If I had only known.
I would have done anything to stop it.
That is why we have to fight for those now and those yet to come.

Hello Everyone,

I wrote the following post on Thanksgiving Day. Due to technical difficulties, I never posted it, but wanted you to know…


Happy Thanksgiving.

Today we think of all of you. We think of the kindness that has been shown to our family and how grateful we are to you. What an impact your kindness has made in our lives! We thank you and we thank God for you.

Last Wednesday I was asked to speak to a group of Girl Scouts at their annual Thanks and Praise Ceremony. I attended the ceremony last year when Maria read a line at the podium of what her troop was thankful for. Her troop was there again this year. Only, of course, Maria was not. This year the girls decided to collect and donate toys to St. Jude’s in honor of what they did to help Maria. What a beautiful thing to do. A troop leader asked if I could talk to the girls a little about St. Jude’s. At first, I was a bit frightened. I did not want to stand up in front of the girls and risk the chance of choking. I thought that perhaps it would be best if I wrote something that could be read to them by someone else. As I sat down to write something, it slowly came to me that it would be best for me to speak to them. I didn’t think too hard about anything because I felt guided, and so I just went where I was lead. There was a little nervousness when I got there. Seeing all of the girls brought back memories and that is hard. I looked at the girls from Maria’s class and they are getting bigger and time is moving on without my girl. Maria was with me though. I could feel her presence. I felt she wanted me to do this and so I knew she would see me through it, and she did.

Though it was the girls’ thanks and praise ceremony, I felt very thankful to all of them. I felt thankful that they are keeping Maria’s memory alive. I felt thankful for their grace in how they have handled the death of their friend. I felt thankful for their parents who have had to see them through the death of a friend. It is not easy to walk a child through something like this, but I know that each parent had to. It was obvious to me that the parents, too, had done it with grace because I saw some of the greatest kids I know sitting there in that Church.

As I looked around at the girls my memory recalled a moment after Jesus Day. We had just finished sharing lunch out in the yard at St. Raphael’s with Maria and it was time for the students to head back in to class to finish up the day. I walked Maria into the school and many students were walking up and down the hallway. I was a bit worried because I knew that with Maria’s eyesight and balance it would be difficult for her to guide herself down the hallway and back to class. Just when I decided I would take her back a good friend of Maria’s walked into the building and instinctively took her hand and said “C’mon Maria, I’ll walk with you back to class”. Maria kissed me goodbye and I watched her friend carefully lead her down the hallway. There was no fanfare. It came as second nature to this little girl. She knew her friend needed help and she helped her. She did not make a big deal out of it, and Maria, who otherwise would never want any attention or help, knew she needed her friend’s help and accepted it. As I watched them walk down the hallway tears came to my eyes, partly because of the affirmation that Maria was slowly deteriorating, but mostly because of the feeling it gave me to see such a pure act of kindness shown toward my daughter. Though it may not seem like much to some, acts like that meant everything to me. This is the way Maria’s classmates are. They loved Maria and they looked out for her. It came naturally to them and because of that there was nothing that made Maria feel self-conscious. It didn’t stop at her fellow students either. Teachers, aides, children in other grades—many people reached out to her and loved her without making her feel different. I thank all of you. It did not go unnoticed by me. It meant a great deal to me that you would care for my daughter the way you did.

The Saint Raphael community has been like one I could never have imagined. Grace, kindness and compassion are the words that come to my mind. You live your faith. I am extremely inspired by the many generous acts I have witnessed and received and I want to pass it on.

Outside the gym door at St. Raphael there is a picture of Mother Teresa and beneath it a quote of her’s that says “unless life is lived for others, it is not worthwhile”. The St. Raphael community understands this well. Ed and I feel blessed to call this community Family. God is at work there. Thanks to the example of this community, I am humbled, and I am learning that when you immerse yourself in a life that is lived for others that is where God lives and that is the only place I want to be. I sure have a long way to go...

As for Maria—

Going forward there are many things we think of that we want to share with you about her. We will do this in time. The journey continues and this site has been a source of comfort to our family--a place we can go to share her story and honor her memory. Thank you for sharing it with us.

Until the next post, a package came yesterday from Pamela in Cincinnati. We opened it today on Thanksgiving. Not a coincidence. You know we don’t believe in them. Thank you Pamela. I hope you don’t mind if we share “Visitor From Heaven” with everyone because we think it captures beautifully what is in our hearts.

Visitor From Heaven
Music and lyrics by Twila Paris

Vocal by Pamela Pretot
Piano accompaniment by Craig White

A visitor from heaven,
If only for a while,
A gift of love to be returned,
We think of you and smile.

A visitor from heaven,
Accompanied by grace,
Reminding of a better love
And of a better place.

With aching hearts and empty arms,
We send you with a name.
It hurts so much to let you go
But we’re so glad you came,
We’re so glad you came.

A visitor from heaven,
If only for a day.
We thank Him for the time He gave
And now it’s time to say:

We trust you to the Father’s love
And to His tender care,
Held in the everlasting arms
And we’re so glad you’re there.

With breaking hearts and open hands,
We send you with a name.
It hurts so much to let you go
But we’re so glad you came,
We’re so glad you came.


We wish all of you and your families a very Happy Thanksgiving.

God bless,

Ed and Megan

Happy Birthday Maria! - January 11, 2008

Happy Birthday sweet Maria,

On your special day I think of you with so much love and gratitude in my heart.

You came into this world so quietly. It struck me that you barely even cried when you were born. I thought something must be wrong, but then you looked at me wide-awake and so peacefully. You had that quiet peace about you right from the very beginning. Maybe because you knew I was not well and did not want to cause a fuss. You always thought of me first. They rushed me off to the O.R. and you stayed very quietly with your Daddy who developed a special place in his heart for you right from that very moment.

You always radiated love Maria. Before you became sick there was a timid and sweet, happy-go-lucky innocence about you. You were excited about everything and genuinely loved life. You were quite the practical joker, yet you were gentle, kind and thoughtful. After you became sick your wisdom grew and much of your happy innocence was taken away from you. I hated to see this. Yet with all you had to endure the love that you radiated to others seemed to grow stronger and stronger. In your most private, difficult and painful moments you reached out to me not to be comforted, but to comfort! Though I kept my face strong and smiling for you, you saw beyond it and you did not want me to worry. I ached deeply. I could not help you. I could not save your life. You put your hand on my cheek and told me that you loved me. In your pain you did not think of yourself. You never wanted me to suffer but you suffered so much. It occurred to me that until you, I never really grasped the meaning of true love. You showed me love in its rawest form. Pure love. Nothing attached to it. A love like that can never be conquered by death and will live forever. You loved me like Christ would. Because of that I am able to understand the beginning of the depths of the love Christ must have for us. Through you I received a glimpse of Christ’s pain and suffering but also His unconditional love. I want to thank you Maria! I see now what I can’t imagine ever having not seen! It is so clear to me that at the end of your life Christ took hold of you and you became one with Him. Just as Father Tim said, He consumed your soul, Maria, and I was blessed to be a witness.

Hold onto me Maria. Don’t let me slip and fall. I want to get to where you are and I know that my life must change. There is a lot of work to do and I am already almost 39. Only through your example have I been able to understand the urgency of how important it is to change my life and live it for Christ. Now I see that this life is not about me, but what I can do for others. It is entirely about LOVE. God has taught me that valuable lesson through you. I pray that I never lose site of the meaning. That I don’t ever fail to remember the lessons I have learned. One day I know God will ask me “What have you done with what you have been given?” I long to hear Him say the words that I know you have already heard: “Well done, my good and faithful servant.”

For your birthday I can not give you any greater gift than what you have already been given--the gift of eternal life. Your life on earth has ended, but your mission, I believe, has just begun. I am here for you Maria, to help you in any way I can. I pray others will too.

Your Daddy, Eddie, Aidan, Blake and I love you and miss you so much Maria. You will always be our glue. We think of you every day. We are so proud of you. We know you will enjoy your first birthday in Heaven with all of the other beautiful children who have walked in your shoes. No more pain. No more suffering. Only love.

Love,

Mom and Dad

Update as of September 24, 2007

"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."
-Mother Teresa

Hello Everyone,

In this world there are so many beautiful and wonderful people. I've heard it said that when you go through an experience like this God is closer to you than ever. This was clearly true for me as I looked out and saw His presence everywhere. When I looked down from Maria's bedroom window on the night after she died to see so many candles lit and to hear the rosary being said I thought what a beautiful way to honor Maria and her story—by honoring Christ and His Mother. For certain They and Maria were there in our midst. On the following nights, to see the beautiful luminaries lit up in the neighborhoods and then to see the numbers of people who lined the streets after Maria’s funeral was inspiring. I knew God was taking care of us all. Thank you. Thank you to all of you.

Please continue to keep Maria and her story alive in your hearts. For a little girl, she had such a great impact, and I believe that is because she was always open to God's love and graces. Through her, He was able to share them with all of us. Keeping that candle glowing in our lives is the greatest tribute we can give to her and to Christ.

Many have asked us to post Fr. Tim's homily from Maria's mass. It is below.

Please remember all children who suffer from cancer and their families in your prayers.

God bless,
Ed and Megan

Fr. Tim Gareau’s Homily
Funeral Mass for Maria McNamara
St. Raphael Church
July 18, 2007

Mass of the Resurrection for Maria

I would like to open the homily today
with all of us gathered here this morning
together let us express a sign of our love and support
to Megan and Ed, Eddie, Aidan and Blake.

My dear friends in Christ,
our dear Maria’s struggle is ended.
There is no more sickness and suffering,
doctors or chemotherapy.
She is complete and whole once again
as our Lord Jesus Christ has called her home.

She has fought the good fight.
She has run the race.
She has kept the faith
and a merited crown awaits her –
the crown of glory in Jesus Christ our Lord.
She now sings and dances,
runs and laughs,
and maybe even jumps rope or plays duck duck goose
with all the angels and saints in heaven.

The movie that was produced early in Maria’s illness
called Miracles for Maria was just beautiful.
We all looked and prayed and hoped for a miracle – didn’t we?
As we put our focus in that direction,
I hope that we didn’t miss something extremely important:
MARIA WAS THE MIRACLE!

Maria WAS the miracle through her response to Jesus
and His response to her.

A seven year old girl was called home
in the seventh month of the year 0-7.
Maria was and always will be a special expression
of God’s love and presence to all of us.

Maria WAS the miracle!
Our Lord is calling all of us today
to look to the miracle OF Maria.
Look to the hand of God in her life
and experience His grace shining through it!

Maria knew, loved, and embraced the cross.
She was given a tremendous cross
that literally took the breadth away from
her family, parish, community, and well beyond
what our minds could possibly imagine.

Maria had a small cross –
the one that was in her casket
and is now on her casket.

When she was most in pain,
excruciating pain, I might add,
Maria took those precious little hands of hers
and wrapped them around her cross
and held on as tightly as she possibly could
so as to gather as much strength that she needed
to endure another bout of pain.

The suffering of our Lord Jesus Christ on the cross
and the suffering of Maria were joined as one.
Maria knew the cross and now she knows the glory.

My dear friends,
hold on to the cross through your suffering.
Let it give you strength and endurance
as it did for Maria.

This gift of our salvation,
The cross of Jesus Christ,
has brought us to our ultimate destiny –
the resurrection, eternal life, eternal happiness and peace.

We see the Miracle of the cross in Maria’s life,
how it gave her what she needed
to endure her illness to the end.

Another miracle was her relationship with Jesus.

Maria never left Jesus
and Jesus never left Maria.
She was steadfast in her relationship with God.
Maria never wavered in her love for God.
“Would you like Holy Communion, Maria?” I would ask.
With those beautiful eyes, headband in her hair,
and rounded cheeks,
in her gentle spirit she would respond:
“Oh, yes, Father!”

“Would you like to be anointed with the holy oil and prayed over?”
“Oh, yes, Father!”

And then we would pray and peace would always enter in
as Our Lord Jesus was giving our precious Maria
another sacramental hug!
His grace was consuming her soul!

Maria loved Jesus and Jesus loved Maria.
The miracle of their relationship was bigger than life
and was wrapped in eternal love.

I’ve heard it said:
“I’m done with God!”
“What kind of God would do this?”
“Why, why, why?”
The pain and heartache that we experience
is so consuming, so penetrating
that we don’t know how to handle it,
so we lash out at God.
We blame God for this.

The Lord will help us in our anger.
The Lord will help us in our heartache.
He will help us in our pain.

God did not will this for Maria,
He carried her through it.
He lifted her up and gave her strength.
Jesus held Maria in His loving arms
and walked with her the journey that she endured.

So many prayers went up for healing (mine included).
We prayed hard.
We prayed long.
We prayed rosary after rosary.
We prayed often.

God did not abandon our prayer.
God did not abandon Maria.
He guided us along Maria’s path of holiness.
He guided us along Maria’s path to heaven.
He was with her and us every step of the way.

My dear friends,
look to the miracle – look to Maria.
She never left Jesus
and Jesus never left her.
My precious, precious child, Jesus promises,
there are one set of footprints
given to all those who are faithful.

A third miracle is the miracle of the saints.
Just prior to her death, Maria asked how to [spell
the name] of Blessed Kateri Tekakwitha.
Blessed Kateri is always pictured holding the cross.
Maria was called home by God on Kateri’s feast day
and Maria’s cross was on her pillow next to her precious face.
Kateri means Catherine in her native Mohawk tongue.
Several months ago, after waking up one morning,
Maria asked Megan [if she knew] St. Catherine of Laboure
because she had a dream about her.
In the dream, Maria saw a beautiful stained glass window
of St. Catherine’s image [and next to her was an Indian girl].

Megan asked Maria how she knew it was St. Catherine.
Maria said it was the person standing behind her
in her dream that told her the name.
Catherine Laboure started the Miraculous Medal
because of her love of the Blessed Mother.

We prayed to Blessed Mother Teresa
throughout Maria’s illness.
Megan worked with Blessed Mother Teresa
prior to meeting Ed and taking his hand in marriage
and having a family with him.

What did Blessed Mother Teresa give to Megan?
A miraculous medal!
The very medal that Maria wore throughout her illness.

What young child knows such names as
St. Catherine Laboure or Kateri Tekakwitha?
It all connects to the communion of saints
and another miracle of Maria.
My friends, look to the miracle,
look to Maria.
A final miracle, amidst many more,
is the miracle of family and community.

Megan and Ed,
your constant and faithful love for Maria
touched all of our hearts.
You did all that you could possibly do
and much more besides.
Hold on to that.
Believe in it
and never waver from it.
You shared your story openly with the larger community
and throughout the world.
So many lives have been touched by you and Maria.

Jesus established family and community.
This was his mission and primary purpose.

Thank you for drawing us in
and sharing your story with us.
Maria’s parish community, school community,
neighborhood, city, and well beyond, know that precious smile
and gift of faith that has carried you through this difficult time.

We will continue to walk with you.
We will continue to do what we can in Maria’s memory.

God has given us a precious miracle in Maria McNamara.
We will not lose sight of Maria’s ability to hold fast to the cross.
To remain close to Jesus as He remains close.
To know that we are an important part
of the community of saints as they help us still.
And, through family and community,
we can find the strength that we need
to endure some very difficult challenges that come our way.

We thank God for the miracle of Maria.
As our prayers move from prayers FOR Maria
to prayers FROM Maria may we find strength and hope
that God has blessed us with the miracle of her life
and, perhaps, with miracles yet to come.

God Bless you!

Update as of Saturday July 14, 2007

Here are the services:

Wake
Monday July 16, 2007 -- 5 PM to 8 PM
Tuesday July 17, 2007 -- 2PM to 4 PM and 6PM to 8PM
at
Chambers Funeral Home
29150 Lorain Road
North Olmsted, OH
(Corner of Stearns and Lorain -- North Side)

Mass of Wednesday July 18, 2007 --10:30AM
at
St. Raphael's Church
525 Dover Center Road
Bay Village, Ohio 44140

Update as of Saturday July 14, 2007

God came today and picked his little sunflower Maria.

She became a Saint in Heaven at 1:30 in the morning.

No words can describe the impact she has left on so many lives.

Maria's brothers, Eddie, Aidan, and Blake and Mom and Dad were with her at home.

Please ask God to give us the strength we need.

We love you Maria. You will be with us everyday.

Love Mom and Dad

Update for Friday June 15, 2007

Hello Everyone,

Thank you for being patient as our updates come less frequently. Thank you for caring. Thank you for your prayers. Thank you seems never to be an adequate word, but, as we have said before, there really are no words to describe what we feel in our hearts.

I want to take a moment to thank all of you who have donated to our personal fund on this site. It has helped us quite a bit with many extra expenses we are dealing with now. It has also helped us in getting our foundation up and running, and in other ways more than many of you will know. Thank you to the wonderful Moms from Eddie’s preschool class who just blow me away with their thoughtfulness and support. Miss Teece from the Nature Center—what can I say to you? You are selfless. Thank you for the love you have for our children. Your help and support can not be measured. People line up to register for your class and there is no wonder why. You are an amazing and caring person. To the Cutter Family—From the Dalmatians and beyond—thank you for always praying for us and supporting us. To April-I don’t know where you came from, but you have eased our burden. We love you. To all the schools, students and their families who have followed our story and created beautiful gifts of love from it. All of you have been such positive support for us and your hope and prayers for the best have lifted us and helped us to stay strong and upbeat and to keep believing! Thank you.

Update on Maria--
One of the most difficult things about our situation is not knowing where we are headed. Many people I see ask me how Maria is doing. I find it difficult to answer this question as each day is different. I think to myself that is how God tells us to appreciate today and not to always look ahead. The phrase “This is the day the Lord has made. Let us rejoice and be glad in it.” comes to mind often for me. God gently reminds us each day that He is at the wheel. Hand it all over to Him.

Maria’s Paschal Pal in eighth grade was chosen to crown Mary at St. Raphael’s May Crowning. Therefore Maria also went up with her. She was very excited about it. She held three sunflowers to give to Mary. It was such a special and beautiful ceremony. Something in my heart felt that Mary was smiling down on Maria. I know she is loved in heaven. Somehow, without really knowing it, Maria has radiated a little bit of that heaven to all of us.

The first graders just celebrated Jesus Day. The parents were invited to attend a prayer service the students put on in the Church. Afterward, we shared a picnic lunch outside. The students had a banner put together with all of the things they had learned that year. My eye kept being drawn to the center of the banner where there was a picture of a heart that seemed to be radiating outward. Underneath it was the word “hope”. By chance I happened to mention to Maria’s teacher after the picnic lunch that I really liked the banner, especially the heart in the center with the word “hope” underneath it. Mrs. Kascak told me that was funny because Maria made that heart. I’ve never seen Maria make a heart like that, but I thought how appropriate it was because, to me, she is like that heart in the center radiating God’s love to everyone around her.

Memorial Day was a great day for us. Ed and I noted how Maria’s spirits were wonderful. She was joking around and happy. She said she wanted to go swimming. So off we went as a family to go swimming and eat dinner together. We had such a wonderful time. It was a beautiful day.

Two days later Maria started to take a difficult turn. She was in school and seemed to be doing well on Tuesday. It came suddenly. She started experiencing intense headaches.

This is very much a test of faith. Words are not enough anymore. You have to live it. I asked Jesus, “Where are you? You are silent. We need You. Help us.” It occurred to me when I looked at Maria’s suffering face and how she was quietly accepting the pain without complaint that I had found Him. There He was. He was in her eyes.

Father Tim came over Thursday evening to give Maria the Sacrament of the Sick (as he has done for us in the past). I knew she was in quite a bit of pain but she managed to sit up and give Father a couple of smiles. It was hard not to. Father was like a breath of fresh air. He was upbeat, happy and positive. It felt good to all of us. We were so tired. Maria really loves Father Tim so it was a nice visit.

The next morning Maria woke up and asked to go downstairs to eat. Since then she has recovered a little more each day. It is an emotional roller coaster ride, but that is ok. I praise God for her recovery. “This is the day the Lord has made. Let us rejoice and be glad in it”. Only God knows what will come of tomorrow. Again He gently reminded me to appreciate the here and now. I’ll keep trying. I know He is walking with us.

I ask that all of you remain positive. Pray for Maria’s symptoms to ease and for her strength to build. Please join us in thanking God for all of the blessings and graces that He has shared with us through an unassuming and special little girl.

Thank you God for today. Please send us an even better tomorrow.

Thank you all for your continued prayers for Maria.

Love,
Ed and Megan

P.S.
I just love this photo so much I had to post it again. We also wanted to include this Song of Love for Maria for all of you to enjoy. We get the biggest kick out of it.

Update as of Saturday April 21, 2007

Hello Everyone,

Today is such a beautiful day. I hope everyone is outside enjoying it!

We have posted a lot less frequently in the past months. A friend of mine said, “You need to post so we can keep those prayers coming!” I am grateful to have this site to come to and post when I feel I need to talk or have something to say. It has been very healing for me to be able to do that. I don’t ever like to force the words, and I’m not one to detail each day. There is so little time in the day for us it seems. Maria has needed us greatly in the past couple months and we are trying to spend every moment we can with her and together as a family. Please understand how appreciative we are to all of you for your concern and prayers. You have all been so wonderful to us! We know how much you love Maria and we will try to post when we can. I ask that you continue to pray for Maria always- even without a post. Prayers are always needed here. Now, more than ever.

The week after Easter we all caught the rotavirus. This was hard on Maria as she could not keep anything down. Dehydration is never good with a brain tumor. We have been focusing on strengthening her and getting her better. The virus took a toll on her and increased the number of symptoms we have been seeing. It has been slow moving but she has shown signs of improvement. We are concerned for her. We do, however, remain as upbeat and joyful as possible, trying not to despair because it will bring no good and we know God wants us to put our trust in Him. Whatever happens will be God’s will and we want to work with Him, not against Him. We are hopeful. I continue to ask God for complete healing. I look to Him to show me the way. We have turned it over to Him. I know she is in the loving hands of Someone who loves her more than we could ever imagine. I always hope that He will allow her to remain with us. No one knows, but Him.

Thank you for your continued prayers for Maria always.

Love,
Ed and Megan

Update as of April 10, 2007

Hello Everyone,

Just a quick but important message that we wanted to get out to everyone. I had the opportunity to meet with Robert Indian of the State of Ohio Health Department. He is the one heading up the Leukemia study for Avon Lake. He has been working in the past year and a half and has gathered a lot of data in regards to Avon Lake and childhood cancer. He is going to have a report out in July with all the details.

As a separate study, he is taking a closer look into all the children’s cancer in Avon Lake. He wants to reach out and talk with every family whose lives have been affected by childhood cancer. So here is what you can do to help. He is going to do a detailed study of every child (15 years or younger at the time of diagnosis) who has had cancer diagnosed while living in Avon Lake from 1994 up through April 15, 2007. He will meet and talk with all of them if they so desire. The only catch is he has to know about them in order to include them in the study. He needs to know who these children are in order to get a better understanding of the numbers. So, we need to help Robert Indian and get him the following information no later than April 15, 2007. We only have 5 days. Please email the foundation with as many children's information as possible. Send the following information to info@prayersfrommaria.org :

Name of Child
Type of cancer
Date of Diagnosis
Address
Phone number

No family has to participate. Robert Indian will contact them to discuss details and ALL information will be kept confidential. He would still like the basic information so that he knows about all the cancers, but you don't have to participate. If you don't want to email this information to the foundation, you can call him directly. Email us for the phone number so that not just anyone will call.

Please send this information ASAP. Even if you don't know all the information, please send us what you do know. You don't have to be living in Avon Lake today, just on the date of diagnosis.

Please call, email and talk with everyone you know in Avon Lake today. We need this information to make sure that the information is accurate.

God Bless,
Ed and Megan

Update as of Sunday April 1, 2007

Hello Everyone,

Thank you to all of you who are checking in with us on our one-year anniversary since diagnosis. Palm Sunday. It is a special day for us and we thank God for the time He has given us with Maria. We are celebrating life today, and we hope that you do too.

Maria’s attitude and the love that she shares are better and stronger than ever. She continues to draw the most beautiful pictures for us and she laughs a lot. We love hearing that laugh. Marc Quayle, Sophie’s dad, was over the other night for dinner and when he got here he asked where Maria was and I told him she was outside playing. We both smiled and he pointed out what a beautiful thing that is, and he is right. We are so grateful to God for each day and every little thing that comes with it. Maria is outside playing right now as I write this post. She just stepped in to get a grocery bag because she is going on a “nature walk” with her friend next door. My smile is from ear to ear.

We continue to prepare for whatever may come our way. A couple of Maria’s symptoms have gotten slightly worse, but we remain joyful, hopeful and positive. It is important to us that the atmosphere surrounding us stays upbeat. No, it isn’t always easy. I struggled a bit at Church this morning, but my good friend said to me, “Believe, Megan. Just believe.” And that is right. If we believe, things will be ok, no matter what the circumstances.

So there may be a few more of those cold winter days left, but we’re looking forward to the Spring.

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

Love,
Ed and Megan

Rosary at St. Raphael's for Maria and Sophie

Please join us in saying the Rosary on Friday, March 16th at 12:00 p.m at St. Raphael's Parish in Bay Village.

The Rosary will be held for the healing and protection of Sophie Quayle and Maria McNamara. Maria McNamara, a first grader at St. Raphael's, and Sophie Quayle, an Avon Lake resident, both suffer from a very serious brain tumor.

If you can't make it to the church then please say a rosary or prayer for the girls on Friday.

Update as of Tuesday, March 6, 2007

Hello Everyone,

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

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

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

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

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

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

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

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

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

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

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

Love,
Ed and Megan

Update as of Thursday February 1 2007

Update as of Thursday February 1, 2007


Hello Everyone,


Time just keeps flying by.

Maria is still doing well. It has been 2 months since we received very bad news that our time is limited with Maria. As we told you, we were not supposed to have a great Christmas or January. Well, Maria is still dancing, singing, laughing, telling jokes and playing with her brothers, everyday. We cherish every second of it and we thank God for it. Thank you for your continued prayers.

I don’t know if it is her age, or her life experiences, but Maria is a comedian. She tells more jokes than I do at a bad alcohol induced Christmas party, AND she is funny! Just yesterday, she interviewed her best friend at the bus stop because it was the first time Morgan was at the bus stop before any of her sisters. Megan kept saying I can't believe Morgan made it to the stop first today. Well, Maria wanted more information and used her reporting skills. So, like a good reporter (or comic) Maria asked the tough question with her thumb microphone in hand, “So, how does it feel Morgan?” No comment from the bus stop star.

Maria is the best little 7 year old girl in the world. This picture is Maria in the Nine West store with mommy trying on hats. She did not buy this one, but I wanted her to.

Quick story time. Last week, Maria and her brothers made mommy and daddy breakfast. It was soooo cute. We closed our eyes and were guided into the kitchen for the great surprise of homemade, gourmet, Cheerios! With milk! We ate like royalty and Daddy had to clean up afterwards. I don’t know how I got that job, but it was worth it.

On a more serious note...Today we ask for your prayers for a very nice family who just lost their beautiful little girl, Kate, (January 27, 2007) to this horrible tumor. If you remember one of our previous posts, Kate is the only other child we have actually met in person with Maria’s diagnosis. We met her and her mother Colleen at St. Jude. Please pray for sweet Kate, her Mom and Dad and twin brother Erik.

Just_before posting today, we learned about another child we lost. John J Lipski (January 31, 2007) JJ’s family has been a great resource for us in following many other children and their progress. They have also been a pillar of strength, love and prayer. Please pray for JJ and his family.


Foundation update –

Thank you to everyone for supporting our new foundation! The response has been incredible and we are very excited about the future. We are so grateful to the numbers of you that are willing to donate your time and talents. We will be contacting all the volunteers accordingly.

We have added a “wish list” of some top items that we are looking for. Check out our GetInvolved link to see how you may be able to help.

Thanks to all of you for your continued support and love.

God Bless,
Ed and Megan

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: http://www.prayersfrommaria.org/ ).

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 http://www.prayersfrommaria.org/.

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

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

Update as of Saturday December 30, 2006

Merry Christmas and a Happy New Year to everyone!

It has been a month since we last posted. We have been busy. We have been spending a lot of time with our family this holiday and it has been great.

We have been very fortunate that Maria has gone a month without any problems. She had a great Christmas. We have been blessed. Maria has been in great spirits throughout this holiday season.

So many people have prayed and supported us and again we thank all of you. God bless you.

What have we been doing? Well, I am glad you asked. We have been doing a ton of research. We had some long and very informative conversations with some of the top doctors in this field. All of them continue to agree that this tumor is horrible and that there is no cure. (Really? Tell us something we don’t know.)

We studied extensively all the open clinical trials available today from the Pediatric Brain Tumor Consortium (PBTC) , the Children’s Oncology Group (COG), and the National Cancer Institute, just to name a few.

We decided to look into the PBTC – 0022 study which works with Avastin and Irinotecan as the next treatment for Maria. We talked with Dr, Gajjar at St. Jude and the study was not open there and would not be open until the end of January. We discussed getting started right away so we elected to go to the closest location that had the study open. That was Children’s Hospital of Pittsburgh. (It is very disappointing that the Cleveland Clinic and University Hospitals are not part of the PBTC and are not a Phase I or Phase II hospital in the COG. In other words, Cleveland is way behind the eight ball when it comes to pediatric brain tumors.)

So, off to Pittsburgh we went on December 21, 2006 for another MRI and possibly a PET scan and to start the Avastin treatment on Friday December 22, 2006. We met with a wonderful Dr. Reggie Jakacki. She is actively involved in the PBTC and knows Dr. Gajjar very well.

We discussed Maria’s condition and what effect the Avastin study would most likely have on Maria’s tumor. She confirmed what Dr. Gajjar had told us 3 weeks earlier, that it may give us a month or two more, but we should expect much more.

So, off to the MRI we went. Our appointment was at 10:45 am at the Presbyterian Hospital (connected to Children’s). It was at this point that we really missed St. Jude. Not only could Maria not eat a thing until her MRI, but they were running 2 ½ hours behind. How could someone be 2 ½ hours behind at 10: 30 in the morning????? Nevertheless, Maria was great and waited while drawing with mommy. After our MRI, we were to return to Children’s to discuss the results and the next day’s treatment and pending PET scan.

During the scan and weeks prior to this day, Megan and I have discussed every option and every scenario we could think of when if comes to Maria’s treatment. We have always wanted to make sure that quality of life for Maria is our number one priority. We had learned that this study was probably the best study of the ones currently available and that is why we were in Pittsburgh, but not being at St. Jude made a huge difference. Maria had become a patient and was no longer a child. Now, don’t get us wrong, they treated us very well at Presbyterian, but it wasn’t anything like the sedation team at St. Jude.

Some people have asked us how we could pack up our family and move to Memphis, TN for two months of treatment. Well, it has never been clearer. NOTHING CAN COMPARE TO ST. JUDE!! I could go on for hours discussing the differences.

Back to Children’s……4:30 rolls around and we return back to Children’s Oncology. We meet again with Dr. Jakacki to discuss the results. She said that it doesn’t look like the tumor has grown much if at all since the MRI 3 ½ weeks ago. This was great news.

We continued our discussion, only this time we spoke. We explained to Dr. Jakacki that though the treatment is supposed to be somewhat beneficial, we couldn’t justify to Maria and ourselves the gain. Irinotecan could cause hair loss, tumor hemorrhage, extremely low red and white blood cell counts. Why would we take her for a two hour ride 2 days every two weeks just to be in a strange place, get poked, prodded, touched, questioned and made uncomfortable for what is maybe an “extra month or two” of life. If you add all the days up of being in a hospital as a patient and not spending time being a child with your family, is there really a gain?

So, we left for home to enjoy a great Christmas. And Maria was happy again. And so were we.

So what is next you ask? Well, I’m glad you asked. We are not giving up. NO WAY. We continue to educate ourselves on all possible alternatives and are looking for the best options. We remain VERY hopeful and are trusting God to guide us.
We have looked at many things but we haven’t read or looked at everything. One thing that we really appreciate is when people email us or post information. Please don’t assume that we have everything or know everything about possible treatments. Assume we know nothing. Please continue to send information to us.

A perfect example is Dana Farber. We had a contact at Dana Farber and we talked with them when Maria was first diagnosed. The difference was we didn’t get to the top doctor at Dana Farber. Thanks to someone like you who really cares, we were able to get a meeting to discuss a lot of options for Maria. It was very helpful. Not to mention, we got to take Maria on a quick little trip to Boston for a fun evening of shopping with mom and dinning out with mommy and daddy.

If anyone knows someone at MD Anderson that would return a phone call, that would be great. We have called 4 times with no response. We just want to know what they are working on.

We would like to thank Dr. Gajjar of St. Jude for always being there for us. He is truly a great man. We would also like to thank Dana Farber, Children’s National in DC, Children’s Pittsburgh, and Children’s Memorial of Chicago. We appreciate everyone’s time and we will continue to keep in touch. Someone’s going to find the cure….soon.

Here is a tough question for you to think about. What do you say to a six year old girl that asks you if she is going to die and then tells you she is afraid to die because she doesn’t want to be without her mommy? Keep in mind that Maria still is not aware of her prognosis. How do you tell your six year old daughter what the doctors have said?

Please continue to pray for Maria and her strength. She is our miracle that is touching so many lives.

Thanks again for your support and may God Bless all of you.
Ed and Megan

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

Update as of Tuesday November 21, 2006

At first glance you’d think Ed and I don’t really have much to be thankful for this year. But actually, knowing that our circumstances weren’t His will, you can then see just how much Ed and I have to be thankful for. This year at this very important time we thank God for blessing us with the most wonderful children, family and friends. In our time of greatest need Ed and I can clearly see how God has reached out to us, to shelter and protect us. It is humbling to us how much He shows us that He loves us.

Each one of our children is such a tremendous blessing and how incomplete our lives would be without a single one of them. This is Blake’s first Thanksgiving and how much joy we feel to have him here with all of us. Each one of our children was born and blesses our lives for a purpose.

We thank God for his presence each day knowing that no matter what our challenges may be, He assures us of eternal happiness one day. We thank Him for the comfort of knowing this.

We thank God through thanking each one of you for being in our lives this year. Your prayers and your support have been a constant reminder to us of God’s presence. Thank you for your love.

We please ask that as you gather together with loved ones to Thank God for all that He has given you this Thanksgiving that you please remember Maria in your prayers and our trip to St. Jude next week.

Ed and I and the children wish you a Happy Thanksgiving. You are all in our prayers in a special way on this very special day.

With the most heartfelt love,
Ed and Megan