Friday, April 07, 2006

Update as of Friday April 7, 2006

Hello everyone,

Thank you for coming to Maria's blog site. We will try as hard as we can to give you a lot of information on what is going on.

Maria was diagnosed on Saturday 4-1-2006 with a Diffused Intrinsic Pontine Glioma by the Cleveland Clinic. Since this is a rare tumor, we have had to call every major hospital in the country. As of tonight, we still do not have enough information to make a decision.

We did not leave for St. Jude's today like someone asked me. We still have not spoken directly to St. Jude. That should be tomorrow. We have spoken directly with the top doctors at many institutions. We find it comforting that the actual director or section head or chief surgeon all talk with us directly and usually for and average of 40 minutes.

This week we have sent Maria's MRI to about 10 institutions. We have taken Maria to Rainbow Babies and Children's for a second opinion. We had a lot of help from a lot of friends to get a meeting with the world famous Allen Cohen. He spent time with us and a team of doctors looking over Maria's MRI and discussing our options. Not surprising, they diagnosed Maria with the same tumor.

So, since then we have talked with Boston Children's Hospital / Dana Farber Cancer Institute, Children's Memorial Hospital of Chicago, Duke Cancer Center, John Hopkins, MD Anderson, Children's National Medical Center in DC, Cleveland Clinic, University Hospitals and probably more.

We have looked at over 50 different studies and we are still looking. We know that we have to make a decision, but the more we learn, the more we have to make sure.

We should have a final decision by the end of next week and Maria should start treatment, no later than April 17, 2006. -- end of post

47 comments:

Eileen said...

Thank you Rick and John for this wonderful site! I love the pictures of Maria, they are adorable! Thanks again!
Eileen

Elizabeth Phalen said...

Ed, Megan and kids, Mary-Cait and I having been keeping you all in our prayers daily and have been giving up things in Maria's name. Our daily thoughts are always with you. God Bless you today and always.
Love Betsy and Mary-Cait Phalen

Lara Adler said...

Megan and Ed,
I am glad to see that the website is up and running. We will circulate the website address and the fund information at our meeting tomorrow morning. The response has been tremendous...such a tribute to your family.
Lara Adler

Anonymous said...

Dearest McNamaras,

May strength guide you through the unknown, may comfort fill your heart, and may hope lead you to a miracle!!

Together, in your journey.

Love, Cecile

vannessa moses robinson said...

My best friend is Maria's teacher, Mrs Ritzler. When Paula told me about your situation, my husband and I immediately began to pray for Maria and your family. Please know that your have our thoughts, prayers and continued positive thinking.
Vannessa, Richard and Michael Robinson

Anonymous said...

Dear Megan and Ed,
Just wanted you to know that all the Tegeders are praying so hard for all of you and especially Maria. Thank you for sharing Maria's story with all of us through the website. God Bless,
Kathy Tegeder

Trish Tartivita said...

Dear Megan, Ed and family,

The site is a great idea! Thinking of you every day. Praying for you all, and will keep you in our prayers.

Love,
Trish, Carm, and family

Kevin Bailey said...

There is a really wonderful group designed to offer support for children and families going through the trial you are facing right now. It can be accessed at the following link.

http://health.groups.yahoo.com/group/Pediatricbraintumors/?yguid=208835494

The people there are wonderful and supportive, and the site is incredibly informative as well. My prayers are with you.

the sheehans said...

Dear Megan and Ed,

Thank you for this special site. With all that you have to do you still have time to give to all who care for you. You are a blessing. We are praying for you and we are willing to help. Lean on the Lord, He's here for you at any given moment.

With love,

The Sheehans, Linda, Richard, Sam, Spencer and Evie

Gina Mullin said...

Dear Ed and Megan,

Our thoughts and prayers are with you during this difficult time. We will continue to pray for a miracle that will heal Maria. If there is anything you need, please let the St. Raphael family know, we are all here to help.

The Mullin Family
Paul, Gina, Rachael, Paul and Ryan

Jolliffe said...

Ed, Megan and Family:

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202115.html

This is a link about carboplatin. I am sure you have received lots of info, but I felt I needed to do something.

Please know that you are in my family's prayers each and every day. I know that God will give you strength you need as you go on this journey. And try to remember that when you feel as if you have no strength left, it is then that He will carry you.

God Bless,

Lori (Sherman) Jolliffe, and Family

Davies Family said...

Hello McNamara Family, Please know that our family is with you through prayer during this difficult time. My girls are speaking about her now as if she is a best friend....whom they have never even met :) We are all here for you.
With love,
Trevor, Lori, Grace & Emma Davies

Anonymous said...

Dear Edward and Megan,

You exhibited great courage by having all the people who wanted to pray with you on Wednesday. Thank you for allowing us to be there. Prayers are with you as I pass on to others your need for them. Please know that we care deeply. May God bless you now and hold tightly through this struggle.
Aunt Val and Uncle Joe

Anonymous said...

Edward, Megan & Family,

We will continue to pray for your little Maria.

Just call if you need anything.

Love,
Rosaleen, Brian & Johnny

Wendy Pallotta said...

Dear McNamara Family,

We cannot express how deeply your family is in our prayers. I think of Maria almost every minute of every day. Please don't hesitate to ask for anything. All of us feel helpless and want to do anything to make your lives easier at this very emotionally challenging time. I pray that God gives you peace and strength during the treatments and hospital visits to come. We are all praying for a miracle. Never give up hope.

Love,
The Pallotta Family
Tony, Wendy, Caroline, and Allison

Wendy said...

Hello, again,

I just received an e-mail with information from a friend of mine in marketing. A client of hers is part of an adult cancer funding organization. She passed along the name of an organization in Chesterland,OH called "The Littlest Heroes". They have a website also: thelittlestheroes.com They have support services you may want to look into when time allows. Their phone number is 440-729-5200.

Best Wishes,
Wendy Pallotta

John Phalen said...

Dear Ed and Megan;
Beth and I have kept you in our prayers since we herd the hard news. I have had Betsy and the cousins keeping me informed. If there is any thing down South that you need let me know and I'll help in anyway possible.
Remember that you have a lot of family and friends to lean on if needed. We will contiue are prayes for Maria and you family.
God Bless,
John and Beth Phalen

Anonymous said...

I am so sorry to hear about your news. I can assure you that i will pray for your sweet little girl everyday. The great physician will hear the cries of his children! He can heal anything, don't forget that!

Anonymous said...

I heard the story of your little girl from my wife and decided to look at your site. Having never met anyone in your family, in many ways I felt unattached. When I opened the website and looked into the eyes of Maria, it was if I was looking into the eyes of my two little girls. At that point I felt so attached. I can not imagine having the strength to even wake up each morning and continue to move forward. The reason you do, and I hope I might as well, is because of the many prayers that are being said everday, in your honor. I will also continue to say a daily prayer each day for Maria and for you as well, that your family may have the strength to work through this difficult period. As tears fall from my eyes, I realize each one is for Maria, but I also realize God knows exactly what he is doing with your little girl. May you have the strength and the faith to believe that as well.

Anonymous said...

Auntie and Uncle.
Just so you know I pray for maria every day at school during special intensions and before i go to bed at night. You are both wonderful brave parents for dealing with this situation so well.
I will you the best of luck with the present and future.

- Miracles can happen!

Love jessica

Anonymous said...

Dear Ed and Megan,
Since I heard about Maria, we haven't stopped thinking of all of you and praying every chance we get. I can't imagine what you have all been going through, but please know that if you need anything at all, please just let us know. We all feel helpless and truly want to help in any way we can. Unfortunately, we do not know of any doctors with a specialty in this area to find out any more for you, although I can tell you are very on top of everything. Our prayers and thoughts are with you. Maria's pictures are precious, she is truly a doll! God works in mysterious ways and I'm sure he's just waiting to grant a miracle - don't give up hope.
Love,
Paula & Joe Strumbly

Anonymous said...

Dear Edward and Megan,
MY family and I are praying for you daily. We are here for any of your needs and will continue to keep you in our thoughts.
Love,

Tim, Shelly, Abby, Matt and Isabella

Anonymous said...

Edward and Megan,
You are in my prayers daily. I think of you and Maria and I trust that God will look upon you and take care of your sweet baby, Maria.
Much Love and God's Blessings
Love your cousin
Kathleen

Anonymous said...

Dear Megan and Ed`
Thanks for providing this informative web page. It is a great way to keep all of ust that are praying for your family informed!
We also want you all to know that the entire Familia Family throughout Ohio is praying every day for Maria.
Love to you all,
The Gordon Family

Anonymous said...

Words can not express the heartache we feel for you and your family. Our thoughts and prayers are with you daily. Love always, Meg, Brian, Katelyn, Carolyn, Molly, Victoria and Maeve.

Anonymous said...

Dear Ed and Megan,

Words don't come easy at a time like this, but I want you to know that you are in the thoughts and prayers of many, even those you don't know. After hearing of Maria's illness, I contacted the Sisters of Notre Dame prayer line, and the sisters will keep your family in their daily prayers as well.

Please continue to be strong, and the Lord will provide. "Trust in him at all times, O people; pour out your hearts to him, for God is our refuge."

Anonymous said...

Ed and Megan,
We heard of Maria's news through the French's and keep her in our hearts and prayers daily. As parents we can't imagine what you must be going through but know that everyday God gives you his love and strength. God bless Maria and your family, we are praying for all of you.

Jen and Mike Riley

Anonymous said...

Dear Megan & Ed--

Your beautiful Maria is never far from my thoughts and with each thought, I send another prayer to Mother Teresa. As I pray, I recall Maria's eventful birth and believe your sons are all evidence that prayers are heard and answered. Faith is such a stronghold in life and how fortunate that you have it in such quantities. Maria's story is being shared and the prayers are multiplying daily.

God bless, Sheila (O'Malley), Kevin, Ryan, Kathleen, Johnny, Tommy & Joey Fenton

Anonymous said...

cane to this blog by chance. I'm someone living in SINGAPORE. I'm touched by all the encouragements and prayers sent.Maria,you must continue to be strong and keep your faith in GOD. May the Lord bless you always. The lord will heal you.

Anonymous said...

McNamara Family,
Though we have never met, Maria remains in our thoughts and prayers. It is a blessing that she is surrounded by such a wonderful family in such a difficult time.

With all our prayers,
Carmen Edgehouse & Megan Sterba

Anonymous said...

Just more prayers for you and your family from a friend in faith. There are miracles abounding, never more than at this blessed time. I believe Maria is experiencing her Good Friday now, along with all of you who love her, but Easter and Maria's miracle are right around the corner. Mother Teresa is a very powerful intercessor who truly loves the little ones. As she adds her heavenly prayers to our earthly ones, there's no reason NOT to believe the next miracle is for Maria. God bless all of you with strength and courage.
Lorene

Amy said...

Maria and famiy - You have been added to the St. Mattias parish prayer chain (Parma, OH), and are in the daily prayers of many. God will give strength and grace for each new day.

In Christ's hope,
- Amy E (Sagamore Hills, OH)

Kory said...

I will be adding Maria and her family for prayer request at Hudson Community Chapel. My thoughts and prayers are with you daily and I will continue to hold you all up in prayer. I pray that God will give you strength, courage and peace as you go on this journey.

God Bless,
Kory Betz

Anonymous said...

hi auntie this is mikey i wanted to say i pray for her every day and i ask my friends to pray for her too and they do it and they give her there best wishes and i love u and her ©


~~mikey

Anonymous said...

hi i am cassie roman age 11.
i have heard about this website by pam clegg.{mrs.clegg}
i have had you in my prayers for many days and i hope god will take all these prayers said from many people and forms a cure for this cancer. when mrs.clegg told us about maria i was devistated because i know somone who's son had cancer.
but because we prayed for him god transformed the prayers and made it into a gift to them and they got all the cancer out. IT WAS A MIRICAL they said but it was not it was gods handy work on another child.
that is what he is going to do for you . if she is not saved you know that she will be with the greatest man that walked the earth and will be wating by your bed every night to say " i love you mommy and daddy, good night "
like she has said
god bless and let him take control dont do anything let him and the docters handle it all you have to do is give her love,

your in my prayers,
cassie roman

Anonymous said...

I have never met your family, but heard about your daughter through my son's school. I think of Maria and your family daily. Our family will keep your family in our thoughts and prayers.Good bless all of you

Anonymous said...

Dear Ed and Megan,

I am a friend of your sister Caroline Strumbly's family. I've seen Maria a couple times. Once I heard what happen to her I felt very sad for your family. I feel bad for what you have to do to go through this. I know this is hard for you for you and I hope she gets better. I hope the best for the family in all that happens.

Sincerly,
Chris Abood

P.S. I pray for Maria every day and I hope she will get better. I also pray for your family to. God be with you and your family during this hard time.

Anonymous said...

Dear McNamara Family,
We heard about Maria's tumor from school, we have a kindergardner as well. It has been devastating news and touched us deeply. Please know that Maria as well as her brothers and you are in our prayers daily.

The Adlers,
Paul, Maribeth, Jackie, Maddie, Colin and Ryan

Beth said...

I knew Ed in grade school band and was in Eileen's class. I am keeping your daughter and your family in my prayers, Ed!

Beth (maiden name Becker)

Lil said...

You are in my thoughts and prayers! And many others are CA are joining you in asking for a miracle. Lord give you strength for a day at a time
Love
Lil

Jeff said...

To Ed and Megan, I was so sorry to hear about your daughter, Maria. My son, Justin also has a DIPG dgx 1/19/06. We live in New Hampshire and have already undergone 6 1/2 wks. radiation w/ Temodar in Boston. Justin is now enjoying his rest period. I pray that all of these children will beat this terrible disease. Maria is such a sweet little girl and I feel that she will be healed. Your family is in my thoughts every day.

Jeff
www.justinfund.com
justinfund@aol.com

Anonymous said...

HI MY FRIENDS ARE PRAYING FOR MARIA YOU ARE VERY LUCKY TO HAVE SUCH BEAUTIFUL CHILDERN, MY FRIEND HAD A BROTHER WHO HAD CANCER AND DIED SO SHE KNOWS WHAT IT FELLS LIKE, SO PRAYS FOR YOU .


FROM VICTORIA AND FRIEND MAGGIE

Anonymous said...

Dear Megan and Ed,

I am very sorry to hear about your daughter Maria. My five-year-old daughter Katya (short for Katherine) was diagnosed with dipg in August. We also desided to do off-trial treatment that includes tarceva along with other meds. She tolerates it fairly well. If you'd like we can share our exprience. We will pray for Maria and your family.

Best,
Maria
www.uoregon.edu/~vaintrob/katya

Lydia Anderson said...

Ed and Megan..I heard about Maria and wanted you to know that I will be praying for her, and for all of you daily. God does work miracles and your beautiful 6 year old deserves one.

Much love,
Lydia (Nassif) Anderson

Anonymous said...

My name is Diane Martinez, and I am a friend of Barb Strumbly....Caroline's mother in law. She sent me this link and asked for prayers. I now lift Maria and your Family up in prayer. It is my honor to do so. Know that the Lord, our God, is with you every moment.....His compassion is great and His love is endless. May He give you the grace to endure and a peace that passes all understanding. I send healing thoughts and prayer your way. You are loved.

Diane

Anonymous said...

Ed/Megan and Kids -- We are constantly thinking of you all. We know that God's love is with you.

Our love and prayers to you today and every day

the Hubbells

Anonymous said...

Prayers going out to Maria from Cleveland.