Thursday, July 27, 2006

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

Monday, July 24, 2006

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.

Ed and Megan

Friday, July 14, 2006

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

Wednesday, July 05, 2006

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.

Saturday, July 01, 2006

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.


Ed and Megan