Tuesday, April 18, 2006

Update as of Tuesday April 18, 2006

Hello everyone,

It has been almost a week since we were able to post from the battle field. Maria and dad, as most of you know, are at St. Jude Children’s Research Hospital in Memphis, Tenessee. What most of you don't know is how we ended up here. So here comes the long story for those that want to know.

We spent over week researching about 30 different studies. A few of them were:
  • Topotecan and G-CSF with radiation
  • Temozolomide with radiation
  • Arsenic Trioxide with radiation
  • Thalomid and Carboplatin with radiation
  • Gefitinib (Irrissa) with radiation
All of these are considered treatment for newly diagnosed tumors. From this research, we found that the Gefitinib, also known as the 007 study, was the one that everyone was starting to use as the standard protocol. Its showing signs that it can extend the "quality of life" about 4- 6 months more than the standard 4- 6 months. What it didn't seem to show was a cure.

So, Dad and Maria took a trip to meet with Dr. Stewart Goldman of Children's Memorial Hospital of Chicago. He has a study that uses Thalomid and Carboplatin with radiation. He has tested 39 children and one is still living after 4 years, but the rest of the study is consistent with other treatments and shows no real cure or any great time extension of "quality of life". Dr. Goldman is a great man and truly wants to cure Maria's exact type of tumor. We felt very comfortable with him. We just felt that the chemo used was a little harsh with hair loss and 4 hours of treatments per day. It’s a great treatment by a great group of people but it was not a cure.

Knowing this, we continued our search and learned that several of these top doctors were thinking of trying a drug known at Tarceva. This drug, like many of the others in the studies listed above, has been proven to kill cancer in adults. We wanted to use it because we are looking for the cure. In discussion with Duke Cancer Center, they said that they would use Tarceva in what is known as a "non-protocol" study and that they are very confident that they know the appropriate dose levels to use. They also talked about using our case as a possible start of a new study. We were very excited about going to Duke. The medical team there of Dr. Friedman and Dr. "G" are world renowned.

The evening before we left and after the last post, we were able to talk with Dr. Amar Gajjar. He is the vice chairman of Pediatric Oncology for St. Jude. We told him that we have looked at most of the studies and that we wanted something more for our Maria. We wanted something that has a chance of being a cure, not something that has been proven not to be a cure. We told him that we were leaving for Duke in the morning.

Dr. Gajjar than went on to discuss how St. Jude is already working with Tarceva and that they know the dose levels for children. He also stated that they had not tried Tarceva on a brainstem Glioma (Maria's type). We discussed the "non-protocol" study of Tarceva and he told us that he wanted us to have the type of treatment that we felt most comfortable with. Knowing that St. Jude only works with children and that it is truly a place of miracles, we packed our bags on got on the next flight to Memphis. That was Wednesday of last week. After a lot of testing and planning and a wonderful and blessed trip home for Easter, tomorrow Maria will start her first day of radiation and Tarceva treatment.

There was a lot of other information that many people sent like Protocel, Cantron, Animal Venom, and more. Most of these are either "natural" treatments or "relapse" treatment. Both of which we can and may try. "Natural" treatments can be done at any time because the products are supposed to be all natural and shouldn't affect current medical treatments. The relapse treatments are used if the current treatment does not work or if the tumor starts to grow again after we shrink it. So if there is a relapse, there will be a lot more research that will need to be done. As you can see from this long post, we are consumed by the entire process.

We have to thank all our friends and relatives for all the medical advice and information that we have received. We are now experts in brain stem Gliomas.....Probably because we stayed at a Holiday Inn Express last night.

So, now let's get to the most important part of this posting - how is Maria?

Maria has been poked, prodded, stuck, pitched, scratched, and otherwise just hassled on a hourly basis. It really hurts. It hurts deep. It is hard to get up every day knowing that another test or doctor awaits her. But that is how her dad feels. Maria has been an angel through it all and has not cried once. She constantly makes every doctor smile and every nurse wishes she was theirs. She is an inspiration. She gives her dad the strength to continue on with the miracle. She constantly talks about her friends and cousins, but mostly about her brothers and mom.

She is excited to go swimming and to go to Disney when her treatments are finished. It is amazing what a 6 year old can teach a 37 year old.

We must say again and again that our community, neighbors, friends, and family have been so wonderful.

Thank all of you for caring. God Bless you.
Ed and Megan

32 comments:

thoughtcr1m1nal said...

This is great news. I imagine it's harder not having a plan. I'm glad there's now something to work on, instead of endless days of trying to find something to work on.

You say she gives you the strength, but that works both ways. Without you guys being the parents you are, without knowing how much you love her, she wouldn't be this strong. It's because you're all in this together that she's got such a good attitude toward it all. You're all good for each other. Don't forget that.

Fingers crossed, positive thoughts and prayers heading your direction (as always),
Michelle

Anonymous said...

Dear McNamara Family,
We are praying for Maria constantly. She is a very brave little girl. Your faith and courage is an inspiration to us all.
The Van Euwen Family

Kate O'Malley said...

Megan & Eddy,
We were very sorry to hear of Maria's illness. She will be in all our prayers.
God grant you all strength and courage to get through this trying time.
Love from
Aunt Annie and All the McNamara & O'Malley cousins from Achill Island

Anonymous said...

Dear McNamara Family,

Thank you for your wonderful updates on the research you have been doing, and on sweet Maria. It is helping to keep all of us on your support "team" well informed.

Please tell Maria that Mrs. Pallotta misses her, and that I will make sure I give her information on everything that we do in Science Class while she is in Tennessee, so she doesn't miss anything!

I saw a book on Mother Teresa the other day while I was in a book store, and I promptly bought it. I find myself praying for Maria several times a day. When I wake in the middle of the night, she is on my mind. I think that everyone must be feeling the same way. Heaven must be saturated with prayers for Maria!

St. Jude's will take care of your precious girl.

God Bless your family.

Wendy Pallotta

Martin S. Trott, MD, FACS said...

Maria and Family,

All of my staff and ENT Health Services, Inc. are praying for you. In the short time that I was able to meet you and your parents, I see what brightness you bring to every situation. Keep up that great spirit and know that many of us are supporting you, both near and far.

Neighbor

Anonymous said...

Ed & Megan,

Maria was heavy on my mind yesterday and I prayed for peace and comfort. I think it was because I knew she would be going through everything that you described. As a nurse I can tell you we hate having to do those things to kids, but we love to get them better and send them home. As a parent, I know it is heartwrenching to watch her go through this, but it doesn't surprise me how well she did. Maria is such a good girl, but Ed you are doing a phenomenal job, too. Children draw strength from their parents and I'm sure she feels safe with you there. God is with you.

I will continue to pray as Maria begins her treatments today. May God provide extra strength and comfort as you begin this new journey.

God Bless,
Betsy Kaiser & Family

Anonymous said...

I'm not surprised Maria makes the doctors smile. I've been hearing about "Sweet Maria" since kindergarten started this year.

Mrs. Pallotta's husband

Anonymous said...

Our prayers continue.

Uncle Joe and Aunt Val

Anonymous said...

It's good to see that humor is still present (see Holiday Inn comment). Laughing is good medicine itself sometimes and can present tiny moments of normalcy for everyone. God Bless Maria and your family.
Dana Miller

Judy Winters said...

Dear Eddy X,
I read your post today with tears in my eyes- it is amazing what you are doing for your dear little girl! I continue to pray for all of you. A friend of mine sent this, and I think it's very appropriate.
If God brings you to it, He will bring you through it.
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, TRUST GOD.
Every moment, thank God.
God Bless you, Maria, Megan and the boys.
Your cousin,
Judy

Eileen said...

Eddy and Megan -

Say Hi to Maria for me - everyone is praying so hard. Hang in there!

Ei

Mom said...

Edward and Megan,
I am proud of both of you for the wonderful way that you are with your children and for the love you share with Maria and the boys. As always the prayers for the miracle are going on.
Love, Mom

Anonymous said...

Dear McNamara Family,

You don't know me, but I am a friend and neighbor of the Podeszwas in Dallas. I heard of your news last week from Ann, and and made it to your site today. I want to let you know that you will be in my thoughts and prayers.

Jill Bazzone

Laura and Chris said...

Eddy and Megan- Please know Chris and I are here thinking of you and praying for you. Chris is available for questions 24x7 so do NOT hestiate to call us. We love you.

Laura and Chris

Laura and Chris said...

Also, my Mom went to Mass this morning and Father Larry (who married us) is dedicating the First Communion Mass on May 13th for Maria at St. Helen's Church in Westfield, NJ. Father Larry is also adding Maria to their prayer group.

Laura and Chris

Rich McGowan said...

Hi Ed & Megan,

I came across your web site today at nomorewasteddays.com for you beautiful daughter Maria. I am so sorry that your family has to go through this. My 8 year old son Matthew was diagnosed last October. He is now on a clinical trial at Dana-Farber in Boston for Iressa (Gefitinib). Please know that my thoughts and prayers are with your whole family. I will add Maria to my daily prayers for all children affected with this tumor. I wish you nothing but the best. Tell Maria she will love Disney World when her treatments are finished.
It looks like you are talking to a lot of other families, please know if you have any questions please contact me and I'll be glad to help in any way I can.

In God we trust.

Rich McGowan - backofthepack@gmail.com
http://www.caringbridge.org/visit/matthewmcgowan

Christine said...

My daughter, Alicia is 7 years old. On Aug. 3, 2005 she was diagnosed with a Diffuse Intrinsic Pontine Glioma. Her website is www.aliciahopefund.com I would love to share stories and experiances. When you have time please email me at ESTYS@cfl.rr.com

With Hope,
Christine
mother of Alicia

Rosaleen Kirschnick said...

Edward & Megan,

We continue to pray for all of you and love you so very much. There is not a moment of the day that goes by without us thinking of your Maria. You are both truly amazing in your Faith & Strenth that you have obvioulsy instilled in your beautiful little Maria, not to mention the example you have set for the entire family. Everyone we know is praying for her every day. I believe there will be a miracle and that there are many Angels above wishing the same.

God Bless You and Keep Believing!

Love,
Rosaleen, Brian & Johnny

Brigid, Phil and Family said...

Ed & Megan,
Ever since I heard about your Maria we've sent up the prayers. Eddy you are an amazing spirit and with your wife and family Maria has an arsenal of support add to that Saint Mother Theresa!! You are all an inspiration of the faith in action. Thank you and I will keep the prayers comming. Love Brig, Phil and family in Texas

In Memory Of Ashley said...

I would like to say,my thoughts and prayers are with you and your family. Maria, what a beautiful little girl you are. Keep smiling!!

Aunt Janet said...

Ed
We all are praying and praying for Maria. I pray (and cry) every day that Maria gets better so that we can get a chance to get to know her better and take to her to all the fun things that little kids like to do! Can't wait for you to take her to Disney World! Love you lots!
Janet, Gwen and Colin "Jack"

Anonymous said...

Ed & Megan, I am so sorry to hear about Maria. She is in all of our prayers. I am glad to hear that you are finding some places to try different treatments. Thanks for the updates, it will give us more specifics to pray for.
Love your cousin,
Kathy & Glen Bluemel

Anonymous said...

Dear Megan, Ed, Maria, and family,
I heard about Maria in Marian girls at St. Angela in Fairveiw Park. I also know a little boy in Maria's class. I am very sorry for you and your family. I pray everyday for Maria and your family. Stay strong and remember that you are in many peoples' prayers.

In Memory Of Ashley said...

I would love to share my story too and also would like for you both to share your stories with me, Ashley was diagnosed with Diffuse Pontine Glioma in June of 2005.
My thoughts and prayers are with you and your family and most of all your children. Here is my email address:
InMemoryofAshley@aol.com

Tina

Laura Notarianni said...

Something to consider from Mother Teresa during the "quiet times" ... He listens to us; in silence He speaks to our souls. In silence we are granted the privilege of listening to His voice. Silence in our eyes. Silence in our ears. Silence in our mouths. Silence in our minds. ...in the silence of the heart God speaks. Silence of the heart is necessary so you can hear God everywhere ... Quietly, we are praying for your family, your extended family, Maria's privacy and a medical miracle.
The Notarianni Family

Anonymous said...

Ed, Megan and Family,

I heard these lyrics the other day on the radio and thoughts or you guys flooded my mind. The CD is called Lifesong by Casting Crowns. We love you guys and continue to pray for you and your little princess Maria.

Some of the lyrics:

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Behind the Song:
“If there ever were a test of our faith – if there ever were a test of the motives of our worship – it is when a storm rolls into our lives. We watched and prayed for a precious little girl named Erin Edwards struggle with a deadly disease for several years. The courage, the witness, and the worship of Erin’s mother Laurie inspired this song. Sometimes God calms our storms. Sometimes He chooses to ride them with us.” - Mark Hall (Casting Crowns)

Anonymous said...

Hi Maria...
My name is Caitlyn Walsh and I am in Mrs. Ritzlers afternoon class, I know I have not met you yet, but I have been praying for you everynight and so has my little sister and big brother and mom and dad. I hope you feel better soon!
Caitlyn

Leslie Rechin said...

Dear Ed and Megan,
My name is Leslie and I live in Rocky River. I heard about your daughter Maria's illness through a conversation with my sister-in-law, who went to highschool with you. I have four children and it is unimaginable to think of how hard this would be to deal with or what you must go through every day. I know you don't know me, but I just wanted to let you know you are in my prayers and if there is anything you or your family needs, please conact me. My email address is les715@ameritech.net.

Anonymous said...

Dear McNamara family,

I will keep all of you in my prayers. Maria teaches true courage.

Barbara Watson (Kristin Van Euwen's mom)

The Aiellos of Avon Lake said...

Dear McNamara family
We heard about Maria shortly after diagnosis via many-we have been through the horrible experience of childhood cancer. Jake had leukemia(age5),kindergarten year. He is in remission(now 11). His nurse practitioner was Katie Pring,who is now at St Judes. She was awesome-we stay in touch with her because she was part of "Jake's Team" and saved his life. Our thoughts and prayers are with all of you as God challenges you with this terrible disease.

Anonymous said...

Dear McNamara family,
You don't know us, but we heard about Maria through a good friend of ours. We continue to pray for Maria and the entire family on a daily basis; and we have placed Maria's name on the prayer list at several of the churches in this area.
Keep the faith, your faith will give you the strength and guidance you need to get through this ordeal. If ever you lose hope, take a look at your beautiful, baby girl and know that GOD is taking care of all of you. Thinking and Praying for you always,
The Hite Family

katie duchock said...

dear ed, megan and family,

I am not sure if you received my last message....please let me tell you how so sorry I am that you are going through this most difficult time....I will pray for you and tell many others to pray for a miracle for your baby Maria..I wish I had words to console you!! May god be with Maria and your family.

katie, john, kaili and lizzie