Monday, June 19, 2006

Update as of Monday June 19, 2006

Hello Everyone,

A lot has happened since the last post. Where to begin?
Well, as most of you have seen from Rick's post, the wine tasting event was unbelievable! It was very impressive. Thank you everyone for being a part of it. Thanks for your support and generosity. And thank you for your continued prayers. We hope everyone had a lot of fun.

And what a well done video. Thanks Ted.

Now on to the most important thing in the world--Maria.

Maria graduated with her class from Kindergarten at a mass at St. Raphael's. She helped bring up the gifts at offertory. She was so happy and she walked with a big smile. She felt proud. Mom and Dad were the ones that were the most proud. That image will be in our minds forever. It was so nice to see all the parents and get pictures. We just had to get a picture of Maria with Mrs. Ritzler, Maria's teacher. She has been such an inspiration to Maria and our entire family. Thank you Mrs. Ritzler, you have made a great difference in Maria's life. We love you.

Maria is having fun. She runs around the neighborhood and even jumps on the lawsuit trampoline in the neighbors back yard. She is almost running like she used to.

Quick medical update -- Maria has lost more hair in the spots where the radiation affected her. She is now 100% off of her Steroids and is only taking Tarceva and Imodium. She gets tired less often, but still gets tired about every 3-4 days. We have a home health care agency that comes to the house once a week to draw blood. This is nice because that way Maria doesn't have to go to the hospital and feel uncomfortable. -- end of medical update.

Last week Maria and her family went to the Great Wolf Lodge with her cousins from Virginia. This is something that Maria has been asking for and asking for and the day finally came! For those of you that have never heard of the Great Wolf Lodge, it is an indoor water park located 45 minutes away in Sandusky, Ohio. We spent the night there. She loved it! It was the first "vacation" she has been on in about 2 years... but don't worry, because we are going to go on a whole bunch this summer.

Make-a-Wish had two wonderful volunteers come to visit Maria and ask her what her wish is.....Disney to meet Cinderella of course! We don't know the exact dates yet, but she is so excited she can't wait.

Maria has to go back to St. Jude next week for one day for her regular check up and a detailed MRI...please continue to pray that the radiation and Tarceva is working and that the tumor is shrinking. Just to give everyone a baseline to work from, we have been told that the first MRI is expected to show no shrinkage and maybe some growth from irritation, but we believe that will not happen.

Father’s day-- It was a sad day on Sunday. Sure, dad was happy to get up and make breakfast for the kids and get a hand made card from them, (drawn by Maria, but it was from all of them) but I could not get out of my head all day the pain I saw my daughter go through the last few months. She was happy for me that day and told me that I didn't have to shave because it was father's day. She is so beautiful. I love her so much. How many times a day do I wish I could take the tumor from her? A father is supposed to protect his daughter. How can I protect her from a tumor? You feel so useless at times. But that doesn't stop me from holding her, loving her and finding the best care for her I can.......and of course, prayer. All day, everyday.

So what is next for Maria? Well, a perfectly normal, fun, happy summer. That is what we hope for.

Thank you everyone for your participation at the wine tasting and thank you for your continued prayers.

God Bless,
Ed and Megan


Anonymous said...

Glad you had a nice Father's Day, Eddy!! It is also great to hear that Maria is having a ton of fun!!

Maybe after Maria goes to Orlando to see Cinderella's Castle, you can bring her out here to Anaheim to see Sleeping Beauty's Castle!

Everyone out here is praying!


michelle said...

You're protecting her, never doubt it. Every day she can smile, and every day she knows how much you care, you guys are protecting her. Protection comes in a lot of forms. One of the most important is being free of fear, because you know you're loved. She's got that in spades, guys.


Anonymous said...

Dear Edward:

Who can read your comments and not feel your pain? Which parent can not identify with your expressed need to protect your child? None, of course. Thanks for being so transparent. I pray God will encourage all of you today.

You love Maria. God the Father and the Lord Jesus Christ, the One who made her and died for her, loves her so perfectly. May we all love our children as God loves them.


Aunt Pam

Anonymous said...

Maria and your family have not been far from our thoughts since we first heard about Maria's tumor. Ryan asks about Maria more often now that school is out. Try as we may, we can not shield our children from everything bad this world has to offer. But it is how we deal with these situations that makes us realize who we are, as person, to the core. Nothing hurts more than when our child suffers. Nothing. I don't know you personally, but I know that you are both tremendous parents who have offered Maria all of life's great things before and since this tumor. That is who you both are, never lose sight of that. This tumor has not made you great parents, you were already that long ago. And now you are an inspiration to so many other parents who read your website and cry, and truly feel for you.
Relish in the fact that Maria wants to do "little girl" things, like meeting Cinderella. It brings some normalcy to a very crazy life. In my heart I truly believe that God will hear us all (how can he not, I think we're loud enough)and I just can't believe that Maria will stay sick. She will get better because you believe!
God Bless you all,
Wendy Mark

The Gordon Family said...

Dear McNamaras~
Thanks for the updates on Maria!
As we shared with you, the fundraiser was so wonderful and a true testament to how awesome this community is and the power of faith and prayer. We know the next few weeks are busy for Maria.
We will continue to pray and spread the word for others to do so!
The Gordons

Anonymous said...

megan, my grandma coughlin lived across the street from you. i read the website and pray for maria everyday. i even did a few rosaries at st. raph. for her. please know that my parents and i are praying for you and maria and you entire family. enjoy the summer. we hope maria continues to experience the fun of summer. god bless her. she is a beautiful little girl. best wishes to you. we will continue to pray for you. love, molly coughlin fanta

Anonymous said...

It may be difficult to realize the beauty of Maria being complete...but she is...because of you. If the lesson is to live and love fully and completely then Maria is being one of life's greatest teachers or inspiration and yes, miracle. Thanks for sharing her with all of us.

Anonymous said...

Hi Maria!

Rachael has really been asking about you the last couple weeks so she asked me to PLEASE send you a message! Here is what she says:

"Hi Maria-
I really miss seeing you. It has been a long time since I saw you at gymnastics. I really missed you on our last day. I really miss you. I have been praying a long time now. I hope you are feeling better. I love you, Rachael"

Ed & Megan,

You remain in my thoughts everyday. I'm happy to hear you had a fun little vacation away. We ventured out that way to "Sandusky Wilderness" when it was called The Great Bear Lodge. Guess the wolves took over now--hope they are just as fun!

We will fire up the prayers warriors next week as Maria travels for her check-up and MRI. I can't wait to hear the wondrous results because I know God is already taking care of Maria and working on more miracles.

I hope you continue to keep busy watching Maria enjoy her summer. She is showing us how we should live day to day.

Forever praying and holding on to HOPE-
love, Betsy

Hope is a happiness held in the heart
when happiness seems to be gone.
Hope is a quiet joy deep within
encouraging us to go on.
Hope is a guide when we seem to be lost
that can help us in finding our way.
Hope is a strong immovable force
that our doubts and our fears cannot sway.
Hope is a light that burns in the night
in a place where a miracle starts.
And every good thing will come in it's time,
as long as there is HOPE in our hearts.
(author unknown)

Anonymous said...

My oldest son (age7)does not remove his "Prayers for Maria" bracelet and all of my children have been brought back to that Catholic saying "offer it up." They offer up everything from canker sores and rained out baseball games in Maria's name. We drive past St. Raph every morning on our way to theater camp and they mention her. They call her "Miss Maria" even though I keep reminding them she is only 6 years old and just "Maria" is fine. But it keeps her in the forefront of their thoughts and prayers. And who can ignore the innocent purity of prayers from children?

The prayers continue, Maria. Best of luck and blessings in Memphis.

The Fentons

Anonymous said...

Please know that Maria and her whole family are in my thoughts and prayers each and every day.

Best of luck with your visit to St. Jude's this week, I am sure that the MRI will show shrinkage with the tumor.

I know that your wish to go to Disney will come true, can't wait to see pictures of Maria from Disney. It truly is one of the happiest places on earth, that is where my son Matthew's wish trip was to and we all loved it.

Keep doing what your doing, it's working.

Rich McGowan (Matthew's Dad)