Wednesday, June 28, 2006

Update as of Wednesday June 28, 2006

Hello Everyone,

Today we leave for St. Jude. As most of you probably know, Maria needs to go back to St. Jude on a regular basis. Tomorrow we are getting an MRI done. We aren't expecting any great news since the tumor is expected to not shrink and maybe even grow a little, but we are hopeful.

Maria has been playing like a regular kid. She goes swimming with her friends; she runs in the yard, she even gets mad at her brothers. What a wonderful feeling that is...normal.

We realize that we will never see the "normal" that we once had. From now on, our "normal" will be different, and that is OK.

The toughest part about our new "normal" is not knowing how long it will last. Sometimes we feel we are sitting on an atomic bomb waiting to go off at any moment. We force ourselves to ignore the bomb and continue on with our lives as if nothing has changed.

So, we talk about who Maria's teacher might be next year, what classes she is going to take, if she is going to play soccer or not.....even the boys are talking about school. We are planning a trip to Hilton Head at the end of August and of course the all important Disney trip at the end of September. Too hot and too crowded to go any earlier.

So, that is our new normal. It sounds great and we’ll take it.

As for Maria's health, she feels good and her blood counts seem OK, but we will know a better once we see all our old friends at St. Jude.

One quick story that reminded us that our normal is now different. Maria came to us one day and said that she was told by one of her friends that she needed to be careful on the neighbor’s trampoline because of her tumor. She told us that she told her friend that she didn't have to be careful because her tumor was gone......"It is gone isn't it mommy?" That was a difficult moment. Mommy had to explain that the tumor wasn't gone "yet" but we are praying that it will go away soon. So much for normal.

It is hard to sit on this bomb having no idea if or when it is going to explode. As we were telling some guests just yesterday, we are perfectly content to live in our world not thinking about or just ignoring that there is a bomb. What choice do we really have?

Well, we have to go catch a plane now. Hello Memphis!

One last item...please don't forgot to pray for Maria....Statistically, that is all we have. Even if you don't normally pray, please pray tomorrow around 10 am. That is when Maria will be getting her MRI, which is the hardest part for Maria because they put her to sleep and it is frightening for her. Pray at your desk, in the car, say the rosary, anything. We believe that every little prayer helps....thanks

God Bless
Ed and Megan

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

Saturday, June 17, 2006

Prayers for Maria Wine Tasting and Auction Update

I wanted to take a moment to thank everyone who donated items and attended last Friday’s event - it wildly exceeded our expectations. I was overwhelmed by the love and generosity of the community – it was truly amazing!

I’d like to mention a few people and companies who really stepped up and helped us out with various items:

  • The Irish Heritage Club ( for providing the wonderful facilities for the event

  • Minotti’s Wine and Spirits ( for providing all of the wine for the tasting

  • WKYC ( and Monica Robins for covering the event and being a guest auctioneer. Their piece on Maria is scheduled to air on July 5th.

  • The French family for sponsoring the catering

  • Morgan Litho ( for supplying the printed materials

  • The Shamrock Companies ( and Ted Gordon for putting together a beautiful video for the event.

  • DJ Flash Gordon for providing the music for the event

Of course, we’d also like to thank all of the volunteers who made this event possible. Without your time and tireless effort it would not have been such a wonderful event.

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

Thank you Bay High YPF

Another beautiful example of love from our community is the YPF from Bay High School. Thank you so much to Jim Cahoon and Bay High’s YPF students and all who attended their event. These kids really make a difference with their hearts and their hard work.

Thank you to all of you who have given donations to Prayers for Maria. Early on in treatment we spoke with Maria’s oncologist, who is closely united with the research division at St. Jude’s (most people don’t realize that St. Jude’s is a research hospital and doing some very wonderful things). We spoke to him about what is being done to find a cure for this tumor and how we can assist in aiding the research. We are exploring many possibilities and will keep you posted as we move along.

God bless,
Ed and Megan