5K Fun Run and 1M Walk is This Weekend!

It's not too late to go! There will be onsite registration for last minute entries - make your plans now. The specifics of the event are as follows:

• Date: Saturday, July 29, 2006
• Time: 8:00 AM
• Place: Bay Presbyterian Church, Great Hall, 25415 Lake Road, Bay Village, OH 44140
• Map: Click here
  
• Cost: 5K run - $20, 1 mile walk - $15
• Registration form: Click here

Update as of Monday July 24, 2006

Hello Everyone,

Maria drew me a beautiful picture today. She draws me beautiful pictures every day. It’s funny how much more I cherish her artwork than ever before. I always loved to get pictures from her, but now I take the time to appreciate them more. Why didn’t I before? She draws such beautiful pictures of her and me doing all sorts of things together…riding on our bikes, playing in the snow, playing ball outside. She makes me feel so very loved. I make it a point to spend as much time with her as I can without it seeming strange to her. There are many times, though, when she is playing outside or somewhere in the house and I just want to go to her and watch her, be close to her, listen to her, love her. I don’t want to disturb “normalcy” for her though, so I try not to be too obvious.

Last week I did something I don’t usually do. I ventured to a website of another child who had what Maria has. Trent went to heaven on April 3rd of this year. He reminded me a lot of Maria. Not just in symptoms but in other things. He brought joy to his entire family. His Mom wrote about how she would hold him at night. He would flip his legs up over her’s and ask her questions about heaven. She would answer his questions and tell him what a wonderful place heaven is. Then he would drift off to sleep as his Mom quietly cried. This reminds me a lot of Maria and me. I could feel what was in this Mother’s heart and I cried. Since being diagnosed, especially in the beginning, Maria often asked me about heaven. Kids are really so wise. She could see herself deteriorating in the beginning and though not a word was spoken about what might be she asked the questions it pains your heart and soul to hear. Her sixth sense was still functioning just fine. What I thought particularly lovely about my Maria is she associated death and heaven with Jesus. She asked me, with such fear, if she would have to be nailed to a cross like Jesus in order to go to heaven. My heart broke and I could barely gather the strength inside to tell her with a reassuring face that “no, of course not. Jesus did that for us so we wouldn’t have to”. What I thought to myself though is how Maria really is so much like Him. She is bearing her own cross. What Ed and I would give to take that away from her. Sometimes I worry. I try not to because I know worry and anxiety are not productive. I worry that I have to try so hard to be a better person. I think this for a couple of reasons. If I could just be better maybe that would help Maria. Maybe God would reward my “good behavior” by sparing her life. If not, maybe it could shorten my time in purgatory so I would be able to get to heaven sooner to be with her if she goes first. Because I know she will go straight to heaven. I told my wonderful friend and neighbor when Maria was first diagnosed that I had to go first because she will just be too scared to go alone, and I need to be there for her.

There is so much good here. Let’s focus on the good. Let’s focus on Christ. I have seen the face of Christ more times in the past few months than ever before. I see Him in so many of you. Your kindness, your prayers, your love. It is overflowing and that is SO good and so positive about all of this. Ed and I have been given a great gift from God through all of this pain. I really feel He is so very close to us now. We are so thankful to Him for the graces He has given to us. He has blessed us tremendously. After Maria’s last MRI Ed and I talked about the fact that we have been given a great responsibility and we must respond to that. We are praying about it and following Him on the journey He is leading us on. All of you are part of this journey. We are all so very blessed. Let’s pray that His will be done.

Maria is just so beautiful. One day I walked into the kitchen and saw a picture taped to the window. It is a picture that Maria drew of herself and her Guardian Angel, Daisy. She wrote “Me and Daisy” at the top of it. Daisy, please watch over her well. I would love to share all of her pictures with all of you. Many of you have your own little artists at home. I know you know my Maria when you look into the eyes and hearts of your own children. No wonder Jesus loved the little children. They are all so beautiful. I try to stop and soak in all that beauty each day. When you do, nothing else earthly seems quite so urgent to get to as it did before. I realize the gift of time. The gift of today. I’m thankful for that. As Mother Teresa said, "Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin."

Thank you all for your continued prayers for Maria.

Love,
Ed and Megan

Update as of Friday July 14, 2006

Hello everyone,

We have gotten a few questions since we last posted the MRI images so we wanted to take a few moments to help answer them.

Everyone has been very excited about the news that the tumor has shrunk. Here is some more information we have learned. Most children respond to radiation treatment where the tumor does shrink. This is actually normal. The amount of shrinkage does vary by each case. Maria’s tumor has shrunk more than most typical cases. We will not know until further time and tests if the tumor will shrink entirely or if it has stopped shrinking.

This does not change Maria’s diagnosis. This tumor is a horrible and evil tumor. Most of the time it grows back within 6-9 months of treatment with no forgiveness.

So, what do we have going for us? First, because this shrinkage has happened so early after her treatment, the tumor could continue to shrink and could shrink away. Secondly, we have the best doctors in the industry; scratch that, in the world, working on Maria. Thirdly, we have a new Chemotherapy called Tarceva working biologically on the tumor’s receptors. Fourthly, we have people like you helping us every day. And lastly, we have something better than all of that combined. We have the power of prayer.

Now, don’t get me wrong. I know that God works through science as well and does it often. I know that so many people pray to God and sometimes his plans are different. Hell, I have been praying to God all the time and he pretty much ignores me. But Maria is different. So many people from so many places are praying every day. People that don’t know Maria, people that don’t normally pray…I am telling you, I have never seen so many people in this world come together as one and pray so hard.

We has received so many letters and emails and comments from people all over the world talking about how our little Maria is on the church prayer list, the intentions list, the daily thought list, the morning prayer group list, the school prayer list, the evening family list, the list of list.

You almost can’t imagine that there are so many people out there praying so often for our Maria. Have you ever heard of a church filling up just to say the rosary? You want to talk about a powerful prayer, try saying the rosary.

When we first heard the news that Maria’s tumor shrunk as much as it had, we kept saying that it was “unbelievable”. A friend of mine reminded me that we are people of faith and that all things are believable. He is right; because we have faith in God we never have stopped believing in that miracle. We have always had HOPE. Megan has always said that a miracle is possible, we just don’t know if it is possible for Maria.

We now know that it is possible for Maria. But we also know that it is only possible if we continue to pray. We can not let the statistics win. We can not let the tumor grow back. We must fight everyday that evil that lives.

Let me say this. I have always struggled with my faith. I have questioned the validity of prayer, communion, God, Heaven, the 10 commandments, purgatory, hell, sin and more. I have talked with many people about many different religions and about their beliefs. I have wondered who is right. Is anyone right? What if I am wrong? Is there really a God?

I have also had conversations with myself on what kind of life have I lead? What example do I have for others? Does it even matter? Some have said that religion was created so that we could live in a more civil society. But what has always been in my mind was how did we get here? How can things be scientifically proven, yet still not happen? Why do most people believe in miracles yet others say that miracles are what scientists call “an anomaly”?

Maria was asked if she knew what a miracle was and she said, “that’s where God can do things that we can’t”. What a perfect definition. Of course, a miracle can not be explained by science. That is why we call it a miracle. Miracles can only happen because of God. There is no other explanation. So, that answerers all the questions about God.

What about everything else? Time will tell. I know that I have become stronger in my faith because of this. And this is coming from someone who got really mad at God when we first found out about Maria.

So, now that my rant is over, we need a favor. Whether you believe in God or believe in prayer or whatever you believe in, please do this.

Go to church, ask God for forgiveness, then ask God to heal Maria. I can assure you of this, if everyone that reads this were to go to church and do this, I know God will answer our prayers and cure Maria. Would you want to be the only one that doesn’t at least try it?

OK, well enough about that, on to the most important thing in the world, Maria.
She loves the summer. She is swimming, and running and jumping. She is playing with all her friends. She is having a normal summer for any kid. She is losing a lot of the weight in the face. She is still pretty bald, but the doctor says it should start to grow back in 6 more weeks. Every day is normal and fun. Play, play, play…….awesome!

She is still taking her Tarceva every day. (50MG for those that really want to know) She is not talking any other drug or supplement. She eats fruit with almost every meal, she has cut back on almost all sugars and drinks mostly water. This has been her choice. Mom tries to help her out about not eating sugar and other bad stuff. She asks every now and then if something is good for her or not. But other than that, it is like she has a sixth sense about her diet. I wish I had her sixth sense about my diet. (Heck, I would take her fourth sense if I could).

Maria has lost her second front tooth!! She now has no front teeth. And yes the tooth fairy came and she was very happy!!! She is getting so much older and more mature. :(

Maria is very excited to go to Peak N Peak with our neighbors. They are so great, we really love them. Dad might even get in a round of golf…. Still planning on going to Hilton Head in August and Disney in September.

One last thing, please keep September 7, 2006 on your minds and in your calendars. That is the day that we will need more prayer. That is the day that Maria gets her next MRI. We really want that tumor to shrink more and go away for good. No growth. We will not accept any growth…none. The power of positive thinking is in full gear!

Thank you everyone for your thoughts, prayers, gifts, friendship and love. We can not tell you how much you have carried this family. It reminds me of the parable about having two sets of footprints in the sand and when times got tough there was only one……..thanks.

God Bless,
Ed and Megan

Continuing news stories about Maria - July 5, 2006

Channel 3 News (WKYC) in Cleveland is running a series of pieces on Maria. The original concept was to run a single news story about her but since there was so much interest following the initial piece, they've decided to run additional ones. Here is the schedule:

• July 5, 2006 - 11 PM original story (video is here)
• July 6, 2006 - 7PM first follow-on story (video is here)
  
• July 6, 2006 - 11PM second follow-on story (video coming soon)
  

If you have not seen these videos please click on the links above.

Update as of Saturday July 1, 2006

Hello Everyone,

First, we’d like to thank each one of you for always remembering Maria and for your unceasing prayers. It is because of your faith, hope and love, and in such great numbers, that we are deeply encouraged and blessed.

It is with GREAT caution but increased hope that we write to you today. Our trip to St. Jude proved to be very inspiring for us.

After viewing Maria’s MRI scans yesterday, Dr. Gajjar, Maria’s oncologist, came into the room to tell us that there has been some AMAZING progress. Maria’s tumor that was once the size of a racquetball has shrunk to about the size of the tip of Ed’s finger! It is almost gone! At first we couldn’t quite grasp what he was saying because it was just so unbelievable (and, yes, you ARE reading this right too!). He then took Ed and I each separately to look at the scans in another room. What we saw was the impossible. I asked Dr. Gajjar if this was because of the Tarceva chemo that Maria is taking. Dr. Gajjar laughed and told me that he would love to be able to take credit for what has happened here but he can not. It’s all of our prayers I told him. Ed asked Dr. Gajjar if he had ever seen shrinkage in a tumor like this before and he said never. We have posted before and after MRI pictures of Maria’s images. If you enlarge them you will see that we have outlined the tumor in red. It truly takes your breath away.

After viewing the scans with Dr. Gajjar I went back to the exam room where Maria was and she asked me for her miraculous medal back. She doesn’t like to be without it and had to remove it for the MRI. I received the medal from Mother Teresa when I was in India working at her homes in Calcutta. I told Maria that we will help her to become a Saint just yet.

Many tears of joy and thanksgiving were shed yesterday. Please keep in mind that the battle ISN’T over. We must rally now, more than ever, to pray for full eradication.

Ed and I cannot thank all of you enough. Thank you for believing. Thank you for your continued prayers. God is with us.

Love,

Ed and Megan

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

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

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 (www.irishheritageclub.com) for providing the wonderful facilities for the event


• Minotti’s Wine and Spirits (www.minottis.com) for providing all of the wine for the tasting


• WKYC (www.wkyc.com) 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 (www.morganlitho.com) for supplying the printed materials


• The Shamrock Companies (www.shamrockcompanies.net) 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.

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

An Affair of the Heart 3

Hello Everyone,

We wanted to take this time to tell you about what Bay Village High School is doing.
Jim Cahoon is the principal of Bay High School and he contacted us a few weeks ago and told us about the Bay High School Youth Philanthropy Fellowship.

These young adults are a selfless group of individuals who enjoy raising money to make a difference in someone's life. They exist to raise awareness to fight disease. In addition to raising money and awareness, they take the time to honor a few individuals or groups who also make a difference in our society. The more you learn about Bay High and the YPF, the more proud it makes you to be a member of the community.

When Mr. Cahoon contacted us, he told us about a young member who told the group about our Maria's plight. After which, he asked us if they can help support Maria. We were honored and humbled by their offering. Please see the information below. It is this Friday night. It is a fun night and, what can I say, it is a great cause.

God Bless,
Ed and Megan

An Affair of the Heart

Youth Philanthropy Fellowship Presents:
Benefit Banquet & Silent Auction
Bay High School Gymnasium
Friday, June 2, 2006
5:30 p.m. Silent Auction
6:15 p.m. Dinner
Dinner will be a Buffet Chicken Dinner with all of the trimmings.

Tickets: $10
(Checks payable to Bay High School)

YPF Will Also Honor Individuals For Their
Philanthropic Generosity to the Bay Village Schools & Community

For more information, contact:

Bay High School YPF
29230 Wolf Road
Bay Village, Ohio 44140

Or call Joey Glase 835-3824 Drake Spence, 835-9785 Jim Cahoon 617-7402

Update as of Friday May 26, 2006

Hello Everyone,

Today was the 3rd last radiation treatment for Maria. Tuesday and Wednesday will be the last two. I am sure that we don't have to tell you how excited everyone is to be going home. We will never forget Memphis, TN for the rest of our lives. Maria will now need to return monthly for scans and doctor visits.

We wanted to take this time to tell you about all the special people that we have met here. There have been so many people that have done so much for Maria, you would think that we have lived here for 30 years.

It all started with an old high school friend of ours that introduced us to her aunt and uncle. (as you heard before in other posts) As you know, they are the ones that called St. Francis of Assisi.

Our blessings have been numerous. First we were able to get Maria into St. Jude with the number one Radiologist in the world. We also have one of the greatest Oncologist in the field using the newest and greatest Chemotheropy, Tarceva. Second, Monsignor Peter from St. Francis has let our family into his home and has let our sons run all over his yard! God bless you Monsignor Peter! Next, we have met a few of the women in the church from 3 different Moms' groups. They have brought food to us every single weekday night for the last month, they have brought toys for our children to play with, they have brought their children here to play with ours and to keep us company, they have given Maria and her Mom a girls' day out to get their nails done, they have given us gift cards to Kroger and Wal-Mart and more. But what they have given us that is better than everything else combined is their love and their prayers. They have signed up until September to have the Novena to the Infant of Prague said for Maria and our family every day. May God bless all of you. We pray for you every day.

Now on to the most important thing in the world--Maria.
Today was a great day. First, at 9am we went to Audiology to have a final check up for Maria and test her hearing. As most of you may remember, Maria had severe hearing loss in her right ear and could not hear voices, and only some sounds. Our doctor told us that this most likely will never come back and, if it did, it would take a long time and only be partial hearing. We noticed Maria's hearing seemed to be better than they had predicted. Today the audiologist tested Maria 3 times because she had to validate what she didn't believe was possible! Not only does Maria have hearing back in her right ear, it is 100% back to normal. The audiologist said that she had never seen anything like it in the past. Maybe once, maybe, but she could not remember. She said that even if the tumor was only blocking the nerve for that short period of time, there is always some type of internal damage. She said that she only calls the doctors if there is significant change in hearing, and today she was going to have to call all the doctors. She also said that normally, she doesn't call the doctors with good news, only bad.
Miracle or Science?

That was great news for us today. Keep in mind that this in no way means that Maria is cured, she is not, but she is on her way!

So what is next? Well, we were told today Maria will be getting a CT scan next week to check on the activity of the tumor. This is not an MRI, just a quick scan. This will give us a good baseline to work from going forward. This was not scheduled until today and we were told that this is a good thing.

So, we are very excited about next week and look forward to spending this weekend swimming and laughing. Miracles can happen.........and do.

God Bless
Ed and Megan

The Prayers for Maria Fundraiser!

Mark your calendars for a fundraiser, the Wine Tasting and Silent Auction for Maria!

• What: Wine Tasting and Silent Auction sponsored by Friends of Maria


• When: June 9th, 2006 from 7:00PM to 11:00PM


• Where: The Irish Heritage Club
  726 Avon Belden Road (Route 83)
  Avon Lake, Ohio


• Map: Click here


• Dress: Cocktail attire


• Admission: $50 per person (please RSVP before June 1st)
  Make checks out to "Prayers for Maria" and send them to
  Shelly Norehad
  344 Rye Gate
  Bay Village, Ohio 44140
  

Some of the great auction items are going to include vacation condos in Cabo San Lucas, Holiday Valley, Peak 'n Peak, and Saddlebrook Resort in Tampa, Florida, great tickets to Browns, Indians, Cavs and Buckeye games, gift certificates to local restaurants and businesses and much, much more!!!! Did we mention the signed LeBron James jersey or the signed Browns footballs and helmet?

If you are unable to attend but would still like to donate, please go to the donations section on the right side of this page. Proceeds will go toward family expenses and a cure.

If you have any additional questions, please feel free to contact Gretchen Busch via e-mail at gbusch@comcast.net or on her phone at (440) 930-5348.

Update as of Wednesday May 17, 2006

Hello Everyone,

Yesterday was Tuesday, and Tuesdays are doctor days.
So, let’s get right to the most important thing in the world, MARIA.
Maria received her 20th treatment yesterday and has only 10 left. She is doing well. Her white blood cells have gone up slightly and her platelets are steady at about 350,000 (which I am told is very good). She is starting to lose a little bit of hair. This is not because of her Chemotherapy, but because of her radiation. It will most likely bald or thin in about 3 or 4 spots. After her treatments stop it will grow back a little thicker and a little curlier.

We have lowered her steroids to almost 1 mg a day from 8 mg. Having been on that many steroids makes you very temperamental and constantly hungry. It causes you to put on weight. It is very noticeable that Maria has come down on her steroids. She laughs again and has started to lose a little weight. They tell us that it should take about 8 weeks for her to lose the weight gain. This is amazing because she has gained about 15 lbs and I would love to lose 15 lbs in 8 weeks.

Yesterday also had a surprise for us in that they scheduled an MRI. We were not expecting it because we were told that it was not supposed to be scheduled for another week or two. It was not a complete MRI, it was an MRI known as a Simulation MRI. The simplest way for me to explain it is that it is not a very detailed MRI, but it is used to determine location and size only. (Personally, I think it’s just an older machine that they can only use for basic reading, but I am no doctor and I did not stay at a Holiday Inn Express last night so I’m just making that up.)

Just to summarize for you, Maria’s tumor has caused a lot of problems with her motor skills. In the cranial area, she lost her hearing on her right side, her ability to speak clearly, the right side of her face had gone numb, she had trouble swallowing, and she was seeing double. With the body, it is her left side. She was weaker in grip, walking, and all other motor functions on the left side.

Weeks ago, when the treatments started, we were told not to expect any of her cranial issues to come back, at least not for a few months, but that we should expect her body to come back. Last week our radiologist, Dr. Larry Kun, told us that Maria was coming along FASTER than expected. She has about 90% of her talking and swallowing ability back. She can smile about 50%. She can wink both her eyes separately. She can even hear a little, just a little from her right ear. She can walk very well.

Dr. Kun told us that even though we have seen some improvement, he expects not to notice any shrinkage in the tumor itself. The treatments have helped the nerves around the tumor, but have not started to shrink it. Just so you know, radiation continues to work for up to 5 months AFTER her last treatment. We should expect to hear some results Thursday or Friday.

So what about her Chemotherapy? Well, we are using Tarceva which is an Erlotinib drug, similar to Irrissa, but supposed to be newer and has been proven to be more effective in adults. No one knows how this treatment will work since we are one of the first to try it. So we don’t know what to look for or when to expect anything. I will tell you after all of our research, we hope it will keep the tumor from growing again or maybe even kill it. In order for this to happen we're counting on the miracle.

We will keep you posted.

As for the family, we miss home. It is really hard for everyone to play since they have no friends to play with. We are in a corner house of a busy street so it is difficult to let the boys run around and play without constant supervision (which isn’t too bad because we actually get to spend a lot more time with them).

Megan is doing very well health wise for just having a baby 8 weeks ago with the serious complications she had (it seems like 8 years ago since so much has happened). She is the best mom and looks great. She is a pillar of strength for Maria. They are best friends!

We are counting the days until Maria’s last radiation treatment on May 31, 2006. Afterwards, mom and the kids will be on a plane back home…dad will be a day behind because he is going to drive the family van back.

I had the opportunity to go home last week for about 30 hours to check on the house and try and get some work done. I stopped in on the noon rosary at St. Raphael’s. This is such a powerful form of prayer especially in the month of Our Lady. We have received so many notes and comments from many people we don’t even know that say because of Maria, they are praying more. That says something. We can not pray enough. May 31, 2006 is the last day of the noon rosary at St. Raphael’s and Maria’s last day of radiation treatment. We are hoping that everyone storms the church with a very strong rosary on that day. When I was there, it only took about 22 mins. It was awesome. If you have the time, please mark your calendar for May 31, 2006 for the noon rosary for Maria.

Everyone has been so kind to us. We can not tell you how much support we have received. Everyday there is another thoughtful person offering there time, energy, love, prayer and resources. Thank you everyone. We love you.

God Bless,
Ed and Megan

Update as of Saturday May 13, 2006

Hello Everyone,

Today was a good day. Maria didn't have treatment and didn't have any tubes sticking out of her. She was happy all day. It was about 88 degrees here and Maria went swimming! This was something that Maria was unable to do since we arrived. She loved it! Maria, the boys and dad all played in the pool while mom and Blake watched with smiles.

I will say this, THE WATER WAS COLD!.
This was the first really nice day in about 2 1/2 weeks. Sun block was on.

Maria made mom a really nice card for Mother's Day all on her own and then she put it in a secret hiding place, she also did the boys a favor and put their cards with her's.....Mom's going to love em.

Have a Happy Mother's Day everyone.

We are going to enjoy this moment for a little while. We will post again soon with more details.

Thank you for your continued prayers.
Ed and Megan

Update as of Thursday May 4, 2006

Hello Everyone,

It’s Maria’s third week at St. Jude’s. The boys and I came down a week ago Saturday. The first week was a little rough but we are starting to adjust better this week. We are so thankful to have a nice place to stay where we can all be a family. The people here at St. Francis of Assisi parish are so kind. Thanks to my friend’s aunt, we have really been treated so wonderfully. We are so grateful to her for helping us find a place to stay and we even had a terrific meal dropped off this week from one of the Mom’s in the parish. We still do not cease to be amazed each day at the people who come out of the woodwork to help us. They don’t even know us, but they are right there to lend a hand to us. It’s a humbling experience.

My first day at St. Jude’s with Maria was a very difficult day for me. Maria needed a wheelchair to get around the hospital because she would tire easily and her balance and eyesight were not stable. She was getting worse. It was very noticeable to me after being separated from her for a week. Being in the hospital that first day made my heart sink. I noticed when we got into the hospital Maria’s voice got very low and she became very sad and scared and I hated that. I felt somewhat angry with the place. You look around and see many children who are not well. You think to yourself “what are we doing here? This isn’t where we are supposed to be.” Reality started to really sink in for me. Many of the children are bald. Many wear masks. Maria asked me if she would have to wear one and I did not know what to say. I thought how relieved I was that Maria would lose very little hair. Then it occurred to me that though that was a good thing, it also meant that she has an inoperable tumor.

Ed took me around and showed me the ropes. Of course Ed had already mastered everything, not to mention everyone in the place already knew who he was. As we walked down the halls people would wave to him or stop and talk. If you know Ed this isn’t surprising at all. There was some comfort in knowing that Dad was making sure he was on top of everything for his girl. He is doing an unbelievable job.

Yesterday Maria received a package from her Kindergarten class. She brought it home and went through all of the cards from her fellow classmates and it was so nice to watch her smile and laugh and get chatty about all of her friends that she loves. She misses her classmates and going to school at home. She couldn’t get enough of their cards and we couldn’t get enough of seeing her happy. Thank you Mrs. Ritzler.

Yesterday and today we have started to notice some improvement in Maria and we are very excited. Maria is noticing it too and it makes her happy. They say you enter into the period of “false hope” when your child starts to improve. Our prayers are focused on continued improvement without looking back. One thing you learn is the doctors will say what they will and must, but you must reach beyond that. So many of you are praying for our Maria. This is so important to us and we are so appreciative to all of you. It is everything. We are absolutely moved beyond words at the outpouring we have seen. Ed and I talk about the kindness we receive everyday and we don’t know how we can ever repay everyone. Please know that all of you, too, are in our prayers and thoughts each day. It truly shows the power of God when you witness the outpouring of love towards our little girl. Please continue to pray. Please don’t forget. This is what we are counting on. God is listening.

Love,
Ed and Megan

Update as of Saturday April 29, 2006

Hello Everyone,

Isn't it amazing the response that we are getting at this site. All over the world people are reading and praying for our daughter. Thank you so much.

Today, we thought we would answer some questions about what goes on at St. Jude. What is it like? How are the people? What does Maria do every day?

First of all, St. Jude is located in a neighborhood that is very close to downtown, so security is needed. St. Jude Children's Research Hospital was founded by entertainer Danny Thomas and opened in 1962. It is supported primarily by funds from volunteer contributions raised by its national fund-raising arm, ALSAC, (American Lebanese Syrian Associated Charities) which was established by Danny Thomas expressly for the purpose of funding St. Jude. The hospital also receives assistance from federal grants (mainly through the National Institutes of Health and the National Cancer Institute), insurance and investments. The hospital's daily operating costs are approximately $1,146,616, which are primarily covered by public contributions. St. Jude has more than 3,130 employees.

There is your history.

One great thing about St. Jude is that everything is located in the same hospital. The main hospital is a four story building that has the same foot print as Fairview Hospital in Cleveland. On the main floor, there are 5 different clinics. These clinics are based upon what type of cancer you have. For example, A Clinic is for Leukemia and Lymphoma Cancer. Maria is in E Clinic, which is the Brain Tumor Clinic. Also on the main floor is the Dental Clinic, The Eye Clinic, The Rehab Clinic, Radiation, MRI, Recovery, Triage, Registration, Medicine Room, Pharmacy, Gift Shop, Social Workers Offices, Dietician Services, a Chapel, and the Cafeteria. The second floor has a library and computer lab, Chaplin Services, and Patient Rooms. The basement (called the Plaza Level) has Patient services, Patient Supplies, and a school.

Maria has been to all these places in the first week.

The Rehab Clinic has Physical Therapy, Occupational Therapy, Audiology, and Speech Therapy. By the way, Occupational Therapy is working with fine motor skills like writing or cutting with scissors, etc. -- I didn't know what OT was so I am telling you hoping that most of you didn't know either.

Both the Dental Clinic and Eye Clinic are small and have only one Dr, but they are very busy with two to three rooms each and they have all the latest technology and they see every patient.

Triage is where all the patients go at least once a week to draw blood, get weighed, and have vitals checked. This is so that they can keep an eye on the blood counts and such.

Recovery is for all the patients that get sedated before their treatments like Radiation, MRI or CT Scans. Maria is there every day.

The Medicine Room is where all the patients go for transfusions, bone marrow, and after hours check in. Maria has only been there once when we first arrived at St. Jude at 8pm.

In the E Clinic is where Dr. Amar Gajjar checks on Maria and monitors her progress. This is where we meet to discuss everything. This is the main office for Maria's doctor. Maria goes there about 2-3 times a week.

We are sure that we are forgetting some things, but we wanted to give you an idea of what this place is like. We could only imagine having to drive all over town to take Maria to all these places if we were in Cleveland or some other place. This is a great place.

There are many other buildings that are part of the main complex. The other buildings are research facilities, administration offices, ALSAC building, the Grizzly House (St. Jude Hotel) and the pavilion where Danny Thomas and his wife are buried. ( He died in 1991).

We hope that helps you better understand St. Jude.

Well, as always, on to the important item--Maria.

Maria did well after her surgery to have her "port" put in on Monday. Mom got to see the actual radiation treatment part for the first time on Tuesday. Everything seems to be going well. A concern that we have today is that Maria's red blood cell count dropped from 13.9 to 10.7 and that is not great. They are going to watch that over the next week or so to make sure it doesn't get worse. They say that if it gets to 8 or 7, they will probably give Maria a transfusion. They say that this is very common for receiving radiation treatment and Chemotherapy.

By the way, here is something that we found out most of you don't know, Maria does NOT spend the night in the hospital at St. Jude. She has come home with us every night. We are hopeful that it will stay that way until her treatments are over. (Predicted to be June 2 so far, but that can change)

Maria loves being back together with her brothers and mother. She even gets into a fight every now and then. She, by the way, has learned how to play UNO and is really good.

Medically, there is still no improvement in her condition. Her equilibrium is still off, which causes her to be very afraid of heights and gives her a lot of trouble walking; the right side of her face is still drooping; she can't drink out of a straw on her right side; she is 100 % deaf in her right ear and she has trouble swallowing.
The world renowned radiologist Dr. Larry Kun, who is the one performing her daily radiation treatments (well, he actually just makes sure they are going well, he doesn't actually do the treatments), says that we won't know how effective these treatments are until we do another MRI in about 3 weeks. They used to do them earlier, but after two weeks there is never any noticeable change in the tumor. He says that normally we should start to see some improvements toward the end of her treatments. (Remember, radiation is still working and shrinking the tumor for up to 5 months after the last treatment.)

So, on to the next week.

Thank you everyone for everything.
God Bless,
Ed and Megan

P.S. So many people have asked for our address. The house that we have rented may not accept mail or deliveries, because the mail carrier and delivery people have been instructed and trained to drop everything off at the church.

The hospital is a great place for us to get mail and packages. Everything must be mailed to Maria. Due to the fact that this is a public website, we don't want to give out that information. If you want the address, email Ed at emcnamara@productioniq.com or Rick at rick.reddy@gmail.com.

Update as of Monday April 24, 2006

Hello Everyone,

Sorry for the delay. We have moved again and will not have access to the internet until late Wednesday.

As some of you may know, our family is now together. Megan and the boys did not come down until this past Saturday. It was very difficult to find a place to live. All of the housing at St. Jude would not allow more than 4 people in it.

We looked all over for a furnished home to rent until the end of Maria’s treatment which is supposed to be early June. The problem is that anyone that is trying to rent a house only wants to rent for a year. The only other option was to rent an apartment. As you may imagine, corporate housing is very expensive but that was our only choice.

Until a miracle struck again, that same close friend that helped get us into St. Jude, called their local catholic parish, St. Francis of Assisi in Cordova, which had an extra home on their property to see if it was available. The kind pastor here, Fr. Peter, offered the home for us to rent. What a kind offer. We moved in Saturday. It is clean and in a very nice neighborhood. As we walked around the premises, the miracle continued. There is a pool in the backyard, that is up and running!! The last three days have been over 80 degrees and the boys are having a ball.

Maria had not seen her mother or brothers in almost a week and she was so happy to see them. You really don’t realize how important keeping the family together really is until it was broken apart and then put back together again.

Having to move into a home for 30 days is a lot of work. We are just trying to get into a routine. Ed's dad drove the family van down for us....13 hours. Thanks dad.

Megan’s sister, Maureen, came down with our family to help get us acclimated and to let dad and mom go to the hospital together with Maria. Having Maureen down here is another miracle. She is so much help; we don’t know how we could have made it these last few days without her. We want to thank Maureen’s family for making the sacrifice of being without their mother for a while so that she can help us. Thank you Sidors.

Now, on with the most important item, Maria.

Today was not a great day for our angel. Today Maria had surgery to have a “port” placed into her chest. For those of you that have never heard of a “port” it is an access area that is placed under her skin that gives the medical team a quick and direct access to a major vein so that they can place an IV in easier, or draw blood or give her medication faster. It will actually be better for Maria because now they won’t have to stick her every other day to put her IV in. It is just difficult for a 6 year old to have surgery, radiation and Chemo all before lunch.

Today was day 6 in her treatments. We are going to have 30 treatments of radiation Monday through Friday with the weekends off. That puts us home close to the end of May or early June.
Let me explain how these treatments work so that everyone is up to speed. We are currently using radiation with Chemotherapy (Tarceva) on the tumor in her brain. The radiation is a small dose every day. After the 30 treatments, the radiation continues to try and shrink the tumor for somewhere up to 5 months.

So what does this mean? This means that Maria will take a while to start to heal. She is still not back to anything close to normal and in many ways seems to be getting worse. But we are told that this is normal. The doctor says that if she takes to the radiation, then we should start to notice some improvement in about 4-6 weeks.

Over the next few months, the tumor will hopefully then shrink into nothing, but normally the tumor only shrinks to where it might not have that much of a noticeable affect on Maria’s motor skills. If the Chemo and radiation don’t eradicate the tumor, it usually comes back in normally about 4-6 months or more and then starts to grow again. If this happens, there is only relapse treatment to try, which usually does not have any effect. So as you can read, we are really counting on the miracle of Mother Teresa, Pope John Paul II and God.

Hopefully, we can get our family back into some type of routine and get some “normalcy” into everyone’s life.

Thank you everyone for the continued prayers and love.
Thanks
Ed and Megan

P.S.
Please check out the addition to the website of the noon rosary.

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

Update as of Friday, April 14, 2006

Hello Everyone,

Today is Good Friday. As I write this to you Maria is having an MRI done at St. Jude’s in Memphis, Tennessee. This is where we have decided to take Maria for her treatment. Maria is there with her Dad right now and the boys and I are anxiously awaiting their arrival home this evening. We are not complete without them.

Ed and Maria will have to return to St. Jude’s on Easter Sunday to begin Maria’s six-week treatment. The boys and I will join them. Right now we are trying to figure out logistics.

We want to personally thank all of you for your prayers, gifts, thoughts and love. Ed and I are truly overwhelmed by the love and support we continue to receive on a daily basis. When we are at our lowest somehow someone or something comes along to lift us and we continue on. Before all of this, I don’t know if I would have believed there to be so many wonderful caring hearts in this world. Let me assure you that now I know there are and I hope this can be encouragement to all of you.

Somehow in all of this we have to find meaning. This can be very difficult for us. I often think of the prayer from St. Therese of Lisieux that I have turned to many times in the past:

Everything is a grace … Everything is the direct effect of our Father’s love, difficulties, contradictions, humiliations, all the soul’s miseries, her burdens, her needs, Everything, because through them she learns humility, realizes her weakness. Everything is a grace, because Everything is God’s gift. Whatever be the character of life or its unexpected events-to the heart that loves, all is well.

I hope that many of you can find comfort from this in your own lives.

Ed and I hope and pray for a miracle for our Maria. How much good she has left to do here. We knew she was so special from the day she was born. So bright. So loving. So wonderful. So thoughtful. We believe there are great things in store for her. The world should have the opportunity to know her and share in the gifts she has to offer.

I hope we can all be witnesses to the miracle of God’s eternal love for us. As a friend of mine just wrote me: "Maria will show us the awesome work that the Lord can do." I believe this. Thank you for your continued prayers. They will move mountains.

Love,
Ed and Megan