Monday, June 05, 2006

Update as of Monday, June 5, 2006


Hello Everyone,

We are back in Cleveland now. It is great to be back. When we pulled in the driveway and got out of the car, the boys, of course, took off running. Eddie was already on the tricycle and heading over to our neighbor’s house. Our neighbors immediately came over to welcome us home. I can’t say enough about how much they mean to us. I was feeling a little bittersweet about leaving St. Jude’s. I felt a little scared about leaving our comfort zone down there where we could be with parents who understood what we were dealing with and where Maria could look around and see that she wasn’t alone in her battle. I was afraid to come home to, as Ed puts it, “deer in the headlight looks”. I have to say, however, it has been just the opposite. So many wonderful people welcoming us home and making us feel truly loved and cared about. Thank you for making it seamless for us.

Maria couldn’t wait to get back to school. Even though she had radiation and a flight home the day before, she was still up at 5:00 (4 a.m. Memphis time!) asking me if it was time to get up and if she could get her uniform on. She couldn’t contain her excitement. She was smiles all day. That’s good enough for me. Her life, as she sees it, is normal again and that is what is special for her. She just wanted normalcy. No fanfare. Just to do what she always does. For her, that means everything is fine. That is where she wants to “live” and so she shall.

Like so many of you out there, our friends at St. Jude’s have touched our lives in ways that we will never forget. We will miss our friends at St. Jude’s, but we will keep in touch and hopefully see most of them as we go back down monthly for doctor visits, etc. They are always in our prayers, as all of you are.

As Ed and I met other families at St. Jude’s and got to talking with them it became apparent to us that Maria’s prognosis was not shared by most. There are incredible cure rates for many of the patients. Most of our friends, ironically, have children who suffer from medullablastomas. I think the cure rate is 83%. Their chemo is for 4-6 months during which they stay down at St. Jude’s. It is difficult. Families are split apart during that time. Though it is an awful thing to undergo, with the cure rate it is obviously worth it. Ed and I could only hope for such a sentence. I feel great happiness and hope for our friends who are looking at this good cure rate and I pray for their courage and strength. Unfortunately, I also feel overwhelming sadness because of Maria’s prognosis. When asked about Maria I would tell the parents her diagnosis and they would reach out to me. I am thankful for that. One Mom, Bettina, was just such a person. I talked with her in the waiting room as I was waiting for Maria to get out of radiation. On her beautiful daughter Brenna’s website she writes:

Today I realized (once again) just how blessed we are. I met a mother in the radiation waiting room and asked about her daughter. I had seen her and her husband around the hospital, but I knew they weren’t staying at the mchouse, so I hadn’t gotten to really talk with them. I got that chance today. Her daughter, Maria, is six years old and has a brainstem tumor that is inoperable. It had such a long name that I can’t even attempt to spell it. It’s even more rare than Brenna’s ATRT and the doctors have said that Maria maybe has ten months left. There isn’t a cure, but she’s doing chemo and radiation to help prolong the inevitable. The amazing thing is, that if you just saw her in passing, you would never know that she was dying of cancer. She looks like a normal, healthy little girl, and my heart aches for her family. The mother said that she’s not giving up hope. With tears in my eyes, I just told her the only thing I knew to say, that I would keep little Maria in my prayers. God can work a miracle. The inoperable is not impossible for Him. I hope and pray that for every child here. At the same time, though, I know that I don’t see the big picture, and sometimes His plan is beyond my understanding; way beyond my understanding.

Thank you Bettina. Your words strengthen me. Maria and I talk about Brenna and how we miss her little dance after treatment is over. She is a special little girl.

Another family we met my first day at St. Jude’s was a Mennonite family. Their daughter Bethany suffers from medullablastoma too. The mother, Rosanna, has a smile larger than life, just like her husband, and I just loved them all so much. Rosanna said something to me that I’ve been struggling with since the diagnosis. She said if we let go and trust in God we can find peace in our hearts. This is so hard for me to do, but I know that it is what I must do. All of you help me to do this. I want you to know that.

In my Peace Corps days I learned not to write home when you are having a bad day. I am trying to follow that rule with this website as well. What I do want to say is that on those bad days, when I’m not feeling so upbeat, I find myself going to the website and to many of your cards and letters for comfort and strength. They help me. Thank you. Thoughts and prayers from many we know, many we haven’t seen in some time and many we don’t know help us greatly. We appreciate that. Some of you thank us for letting you be a part of our lives, but Ed and I really thank you for being on this journey with us. We are so blessed you care and pray for us. I don’t know how we’d ever do it without you.

Do you see what I see? So much goodness has come about as a result of Maria’s illness—if this is even possible to believe. It is all bigger than we are. A friend of mine told me when I went to pick up Maria from school that she was glad we were down at St. Jude’s but sad that we were unable to see the numbers that had shown up for the rosary the day before. I feel so much strength in this. I know the power of the rosary and the fact that so many of you have been saying this for Maria is comforting and encouraging to us. Please continue to keep this prayer alive in your own lives. Please continue to radiate Christ to others wherever you go. What a difference you will make.

Hope is something that I am learning a great deal about on this journey. I will always have hope. Your prayers strengthen my hope. I know a miracle is possible. I am happy with this possibility.

Much love to all of you,

Ed and Megan

21 comments:

Paula Ritzler said...

It is so wonderful that Maria is back in school! I told the children that all of the pieces to our puzzle are back and now we are one again! It is so wonderful to hear her laughter again! We attended the all school mass this morning. Before we left for church, I asked Maria privately if she would like to receive communion. Without batting an eye, she joyfully said "Oh Yes!". What beautiful loving faith she has! We will continue to pray for Maria and your family throughout the summer. All of my students, but especially, Maria stole my heart this year!
Hugs from the kindergarten!
Mrs. Ritzler

Anonymous said...

I know Maria'a grandmother from Fairview Hospital and when I learned about Maria my heart went out to her and her family. How awesome you all are. And you faith will always be there for you. Trust in God and his wisdom. You will be in my prayers always.

Anonymous said...

Megan and Ed

You handle Maria's illness with such GRACE. It is human to have bad days and feel sad, angry, frustrated and helpless. Please remember during those times of despair that God is holding you in the palm of His hand. He is so close to you. We all continue to pray for Maria's miracle.

Anonymous said...

I continue to pray for you and your family. This was a beautiful posting today, and I thank you for it!

Today is my parents' anniversary and my mother asked in lieu of gifts that we give to Prayers for Maria, and I shall do so today.

God bless you all!

Anonymous said...

We are so happy that you are home. It was so wonderful to know Maria is back in school. Sydney was excited to see her again.
We pray and thank God for Maria each day. We will never give up either. As long as there is hope--there is life. Welcome home!

The Pochatek's

Anonymous said...

Megan--

Your post touched my heart but I confess, what brought tears to my eyes is Mrs. Ritzler's post on this comment board of offering Maria the opportunity to receive Holy Communion and Maria's joyful acceptance of Christ through this miracle. God puts the right people in our paths at just the right time. As Maria has been put in our path, as Bettina and Brenna and the other families at St. Jude and St. Francis were put in yours, so has Mrs. Ritzler and her students in Maria's. It's a heartbreaking and often frustrating quandry to understand why something so tragic must happen to force us to become aware of such goodness in these enormous numbers, but this is just another of God's mysteries that we all accept in faith.

So, so glad you are home!

Sheila Fenton

Anonymous said...

Here is hoping you have a "normal" summer (as you mentioned Maria wants life to be). May you enjoy catching fireflies, waterhose battles, and watching the sky on a starry night. That is what your family deserves. Maria and your family will be in my prayers through out the summer. My daughters have loved seeing Maria outside at school in the morning, again. What a precious girl she is. Enjoy the summer with your family.

Much Love,
Wendy Pallotta

Jolliffe said...

Megan...

Your strength continues to amaze me, and I'm sure to all those who visit this site daily. You are truly blessed.

Lori Jolliffe

Anonymous said...

Dearest McNamaras,

I can truly feel God this very moment as I read your entry. Your beautiful faith and love of the Lord is infectious! You all have truly called me and my family to a deeper prayer life.
Please remember, it is the little moments that makes life big!

Much love and continued prayer,
The Birchlers

Anonymous said...

Again, let me say that we are keeping all of you in our prayers. There are no words but only prayers. May God bless you and keep you close. Thank you for sharing and going on. YOu are an example of courage and hope. We are helping by sharing with all of our friends and anyone who will listen so that they will pray. So many of our friends ask and we keep them up to date. There are so many people in Cleveland that know and care. Edward, your family will support you and stand by you no matter what happens. That is what love is about and we are here for you and your family. Anything you need but we know that it is all about the prayers and support. EVERY day we pray and as often as possible. Much love, Uncle Joe and Aunt Val

Anonymous said...

It must be so wonderful to be home after all that time. You have a wonderful family and are truly blessed. Keep praying for that miracle and never give up! My family will also be travelling away from home for treatment for our son, Justin, who has the same type of tumor as your Maria. These children will beat this terrible disease- we have to believe that!

With hope,
Jeff Bissett (Justin's dad)
www.justinfund.com

Donna Boggs said...

Hello Ms Maria,

A friend of your Mom's posted a prayer request for you to The Prayer Bears! Its our online prayer group! My son has a rare blood disorder called Fanconi Anemia and his nickname is Papa Bear! We will be praying for you as well! Keep the faith and hope!

Blessings and Bear Hugs,
The Boggs Bears!

Anonymous said...

Hi
I am with The Gropu The Prayer Bears an just wanted to drop by an say hi an that you are very much in my thoughts & prayers.
www.freewebs.com/prayerbears

Betsy Kaiser said...

Hello McNamara Family!

It is just wonderful to know that Maria returned to Kindergarten full of smiles. What a memorable way to end the school year for all. I am also glad that you found such special families in Memphis. You need to have friends who can understand what you are going through.

I always come to this site feeling I have so much to say, with hopes to lift you up, but generally end up speechless after reading the post. Even though I go through different emotions everyday, as I think about your family and what you must deal with on a daily basis, I honestly know that I have no idea what it is like to go through something like this. I can only say that my heart aches for you and I will pray even harder for Maria. I will always be here for you.



I PRAY that through God, the new combinaton of treatments will heal Maria. I pray that Maria can have her normal, fun summer and you can enjoy her and live in peace.

I have FAITH that all things can happen.
I came across this saying on a care page:

"Faith is like walking up to a cliff and taking a step off...another step appears or you learn to fly!"

HOPE is a feeling of trust. Put your trust in God.

PRAYER, FAITH and HOPE - that is the focus.

Take care of each other and remember,
" He performs wonders that cannot be fathomed,
miracles that cannot be counted." Job 5:9

Continued love and prayers,
Betsy

Anonymous said...

Megan-

I have not seen you sice high school,but I can see you in Maria's pictures. She is beautiful! I am uplifted by your families faith and courage. My family and I will continue to pray for your Maria. God bless!!!

Erin Murphy Eyink

Brigid & Phil said...

Megan,ED,kindergarten graduate Maria!! and sons,So glad your home and I do see what you say about can't I feel what's bigger than us? Yes, and I'm sorry it is you. Thank you for sharing yourself so honestly. What I want to say is just remember we are all thankful for the miracles so far and when I taught CCD I would tell the high school kids until you can see the little miracles all around you're not going to recognize the big ones. Faith is such a part of parenting. We can't see ahead; so please take the 24 hours we get each day and be grateful to survive that. No one can handle a years worth of wondering we'll leave that to God it's His job. Know we are praying daily for all of you and more than that for each other. We're all touched and changed by Maria and I trust in all of you because you are so good and God is there with you all this I believe. Your family has reminded us all to love and trust and God called her to Holy Communion and that with her wonderful teacher was so good. Have a great summer I am just one who wants her here with us and with her family. Thanks be to God. Love Brigid, Phil and family.

martinez family said...

Hi! I think God made the world
round just so we couldn't see too
far down the road! Thank you for coming into all of our lives and showing us the way with your grace, love and courage. Our Lizzie is in the afternoon kindergarten and we are all with you on this amazing journey.
Maria has come into so many lives
and has renewed the faith and hope of so many people. She, along with your family - has done more in that regard than most people could hope to do in a hundred years!
May you find strenght in knowing all of us are out here hoping,praying and Trusting in the miracle we know is coming.
The Martinez family

Anonymous said...

have a super father's day this weekend, Ed! Hope things are going smooth at home and that you are able to reach a routine again. the prayers keep coming like a fountain.... god bless megan and the boys and most of all may god bless maria this summer. happy father's day!!!!!!!

Anonymous said...

Prayer of St. Francis de Sales

Do not look forward in fear to the changes in life;
rather, look to them with full hope that as they arise,
God, whose very own you are,
will lead you safely through all things;
and when you cannot stand it,
God will carry you in His arms.

Do not fear what may happen tomorrow;
the same understanding Father who cares for
you today will take care of you then and every day.

He will either shield you from suffering
or will give you unfailing strength to bear it.
Be at peace,
and put aside all anxious thoughts and imaginations.

Anonymous said...

For I know the plans that I have for you, says the Lord...to give you a future and a hope...
Jeremiah 29:11

Rely on God...He is faithful. Maria is so sweet, innocent and beautiful. I am sure that you have touched so many lives for Christ. May your faith strengthen you..may Christ carry you in the palm of His hand. May you have peace that passes all human understanding. My heart goes out to you...you all will be in my prayers.
KH

Anonymous said...

Hi-
I was at camp over the week, and everyday asked my mom if there was an update on Maria. I am very happy to hear that you are back home, safe and sound. I hope that a miracle will happen for Maria, and that she will live life to the fullest, everyday.
God Bless