Update as of Saturday December 30, 2006

Merry Christmas and a Happy New Year to everyone!

It has been a month since we last posted. We have been busy. We have been spending a lot of time with our family this holiday and it has been great.

We have been very fortunate that Maria has gone a month without any problems. She had a great Christmas. We have been blessed. Maria has been in great spirits throughout this holiday season.

So many people have prayed and supported us and again we thank all of you. God bless you.

What have we been doing? Well, I am glad you asked. We have been doing a ton of research. We had some long and very informative conversations with some of the top doctors in this field. All of them continue to agree that this tumor is horrible and that there is no cure. (Really? Tell us something we don’t know.)

We studied extensively all the open clinical trials available today from the Pediatric Brain Tumor Consortium (PBTC) , the Children’s Oncology Group (COG), and the National Cancer Institute, just to name a few.

We decided to look into the PBTC – 0022 study which works with Avastin and Irinotecan as the next treatment for Maria. We talked with Dr, Gajjar at St. Jude and the study was not open there and would not be open until the end of January. We discussed getting started right away so we elected to go to the closest location that had the study open. That was Children’s Hospital of Pittsburgh. (It is very disappointing that the Cleveland Clinic and University Hospitals are not part of the PBTC and are not a Phase I or Phase II hospital in the COG. In other words, Cleveland is way behind the eight ball when it comes to pediatric brain tumors.)

So, off to Pittsburgh we went on December 21, 2006 for another MRI and possibly a PET scan and to start the Avastin treatment on Friday December 22, 2006. We met with a wonderful Dr. Reggie Jakacki. She is actively involved in the PBTC and knows Dr. Gajjar very well.

We discussed Maria’s condition and what effect the Avastin study would most likely have on Maria’s tumor. She confirmed what Dr. Gajjar had told us 3 weeks earlier, that it may give us a month or two more, but we should expect much more.

So, off to the MRI we went. Our appointment was at 10:45 am at the Presbyterian Hospital (connected to Children’s). It was at this point that we really missed St. Jude. Not only could Maria not eat a thing until her MRI, but they were running 2 ½ hours behind. How could someone be 2 ½ hours behind at 10: 30 in the morning????? Nevertheless, Maria was great and waited while drawing with mommy. After our MRI, we were to return to Children’s to discuss the results and the next day’s treatment and pending PET scan.

During the scan and weeks prior to this day, Megan and I have discussed every option and every scenario we could think of when if comes to Maria’s treatment. We have always wanted to make sure that quality of life for Maria is our number one priority. We had learned that this study was probably the best study of the ones currently available and that is why we were in Pittsburgh, but not being at St. Jude made a huge difference. Maria had become a patient and was no longer a child. Now, don’t get us wrong, they treated us very well at Presbyterian, but it wasn’t anything like the sedation team at St. Jude.

Some people have asked us how we could pack up our family and move to Memphis, TN for two months of treatment. Well, it has never been clearer. NOTHING CAN COMPARE TO ST. JUDE!! I could go on for hours discussing the differences.

Back to Children’s……4:30 rolls around and we return back to Children’s Oncology. We meet again with Dr. Jakacki to discuss the results. She said that it doesn’t look like the tumor has grown much if at all since the MRI 3 ½ weeks ago. This was great news.

We continued our discussion, only this time we spoke. We explained to Dr. Jakacki that though the treatment is supposed to be somewhat beneficial, we couldn’t justify to Maria and ourselves the gain. Irinotecan could cause hair loss, tumor hemorrhage, extremely low red and white blood cell counts. Why would we take her for a two hour ride 2 days every two weeks just to be in a strange place, get poked, prodded, touched, questioned and made uncomfortable for what is maybe an “extra month or two” of life. If you add all the days up of being in a hospital as a patient and not spending time being a child with your family, is there really a gain?

So, we left for home to enjoy a great Christmas. And Maria was happy again. And so were we.

So what is next you ask? Well, I’m glad you asked. We are not giving up. NO WAY. We continue to educate ourselves on all possible alternatives and are looking for the best options. We remain VERY hopeful and are trusting God to guide us.
We have looked at many things but we haven’t read or looked at everything. One thing that we really appreciate is when people email us or post information. Please don’t assume that we have everything or know everything about possible treatments. Assume we know nothing. Please continue to send information to us.

A perfect example is Dana Farber. We had a contact at Dana Farber and we talked with them when Maria was first diagnosed. The difference was we didn’t get to the top doctor at Dana Farber. Thanks to someone like you who really cares, we were able to get a meeting to discuss a lot of options for Maria. It was very helpful. Not to mention, we got to take Maria on a quick little trip to Boston for a fun evening of shopping with mom and dinning out with mommy and daddy.

If anyone knows someone at MD Anderson that would return a phone call, that would be great. We have called 4 times with no response. We just want to know what they are working on.

We would like to thank Dr. Gajjar of St. Jude for always being there for us. He is truly a great man. We would also like to thank Dana Farber, Children’s National in DC, Children’s Pittsburgh, and Children’s Memorial of Chicago. We appreciate everyone’s time and we will continue to keep in touch. Someone’s going to find the cure….soon.

Here is a tough question for you to think about. What do you say to a six year old girl that asks you if she is going to die and then tells you she is afraid to die because she doesn’t want to be without her mommy? Keep in mind that Maria still is not aware of her prognosis. How do you tell your six year old daughter what the doctors have said?

Please continue to pray for Maria and her strength. She is our miracle that is touching so many lives.

Thanks again for your support and may God Bless all of you.
Ed and Megan

Update as of Tuesday, November 28th

Hello Everyone,

Today was a very sad day. Maria’s tumor is no longer stable. It has grown and Maria is now considered in relapse. We hesitate to tell everyone because we don’t want anyone to give up hope or to stop praying. We have not given up hope and we never will…no matter what. This has been and will continue to be in God’s hands.

Currently Maria is happy. She is full of life and is feeling great. Her blood counts were actually quite good and she has not lost any motor skills of any type. Dr. Gajjar tells us that he expects she will start to show symptoms in the next few weeks and that she will not be with us much longer. He is predicting two to three more months.

We will say this. The more time we spend at St. Jude and the more we get to know the people here, the more we know Maria is in the best possible place in the world. We received strong words today and we look to God now, more than ever, to guide us.

It is much too early to tell you what our next steps will be. We don’t know. We will need some time to find out all the current relapse treatments available and then weigh the odds of what is best for Maria. This is not about what we want to do or what we might do; it is about making sure that we continue to give Maria the best quality of life possible.

Whether we have 2 months or 60 years, we live every day loving our daughter and thanking God for blessing us with our little Sunflower.

God bless.

Love,
Ed and Megan

Update as of Tuesday November 21, 2006

At first glance you’d think Ed and I don’t really have much to be thankful for this year. But actually, knowing that our circumstances weren’t His will, you can then see just how much Ed and I have to be thankful for. This year at this very important time we thank God for blessing us with the most wonderful children, family and friends. In our time of greatest need Ed and I can clearly see how God has reached out to us, to shelter and protect us. It is humbling to us how much He shows us that He loves us.

Each one of our children is such a tremendous blessing and how incomplete our lives would be without a single one of them. This is Blake’s first Thanksgiving and how much joy we feel to have him here with all of us. Each one of our children was born and blesses our lives for a purpose.

We thank God for his presence each day knowing that no matter what our challenges may be, He assures us of eternal happiness one day. We thank Him for the comfort of knowing this.

We thank God through thanking each one of you for being in our lives this year. Your prayers and your support have been a constant reminder to us of God’s presence. Thank you for your love.

We please ask that as you gather together with loved ones to Thank God for all that He has given you this Thanksgiving that you please remember Maria in your prayers and our trip to St. Jude next week.

Ed and I and the children wish you a Happy Thanksgiving. You are all in our prayers in a special way on this very special day.

With the most heartfelt love,
Ed and Megan

Update as of Monday November 13, 2006

Hello Everyone,

Again time goes by too quickly. Everyday I think about what it could be like for Maria to have a life without cancer. What is the trick to getting by everyday? Everyday I wake up and ask God to help me get through just one more day.

Megan always tells me that we need to always believe, without any thoughts or reservations, because if we, her parents, don’t believe for Maria then who will. Well, I want Megan and everyone in the world to know that I have not and I will never stop believing that Maria is going to get the miracle. She is already our miracle!

Because of our miracle, Maria, we have met so many kind, loving, and caring people. Right from the beginning, hundreds of people came forward to help us out. I can tell you that I wish I could look each and every one of you in the eye and tell you personally how much we truly appreciate your kindness. Everyday someone does something for Maria.

I will tell one story. A gentleman we have never met, heard about Maria’s story. He is an over the road hauler. We’ll call him “Trucker”. Trucker organized a “Poker Run” to benefit Maria. Here was a man that didn’t know us and he put together an entire event for our daughter. I also found out that he took a week off of work to organize the final details. HE TOOK A WHOLE WEEK OFF OF WORK for someone he didn’t know and never met for this event . Our friend had only six weeks to put together the event. 100 riders later, it was a success.

Trucker called me to meet up with him after the event. I went and met up with him and I really enjoyed meeting him. I will tell you that God put him into our lives for a reason.

Toward the end of our meeting, Trucker turned to me and said that he was sorry that he didn’t get more people at the run and that next year we will have over 500 bikers. (Next year?) He said that he will try and do it every year for Maria. WHAT??? Here is a man that works hard every day to provide for his family and he is apologizing to me for not having a large turn out. And that every year he will work for Maria??.. You see, this is the miracle of Maria. Thanks Trucker and everyone who went on the Poker Run for Maria.

OK, one more story. – A former babysitter of friends of ours is now a teacher at Sts. Cyril and Methodius school in Lakewood. Their school participates in the St. Jude Mathathon every year. This year she wanted to put a local spin on the fun and more. She contacted us and asked us to get involved. We agreed. They told all the kids about Maria and asked them to pray for her. We donated some bracelets to them to help raise money for St. Jude. The bracelets were a hit!

The best thing for us is that we get another whole school knowing about Maria and PRAYING for her. Every week a class sends a bunch of letters to Maria telling her to stay strong and get better. They are all praying for the miracle. The last class sent a picture of all the kids raising their hands. We thought it was cute. But after we looked again, we noticed the Prayers For Maria wristbands on every kid's wrist. That is inspiring! God bless you Sts. Cyril and Methodius School!!

Well, let’s get on with the most important thing in the world, Maria.

Maria was Minnie Mouse for Halloween. She looked so cute. Even her Minnie Mouse shoes. She loved wearing it and loved trick or treating.

Maria has been going to school, dance, Brownies, and more. She and her mother just returned from Chicago and a visit to the American Girl Doll Store. They saw the American Girl Doll Show and ate at the American Girl Doll Café. But that was not Maria’s favorite part of the trip…nope. Her favorite part of the trip was sitting in mom’s lap on a carriage ride around downtown Chicago. Maria and her mom are best friends. That is awesome. Megan always talked to me about wanting to take Maria shopping on a girls’ weekend in Chicago when Maria becomes a teenager. Well, good for mom to do it earlier. It is now officially an annual event.

Thursday night was Maria’s teacher conference. Her teacher Mrs. Kascak is awesome. She watches over Maria and does everything she can to make Maria’s school life normal. That is all Maria and we want. NORMAL. Maria just wants to be like everyone else in her class. And right now she is. Mrs. K told us a story about Maria that I really want to share. I hope I remember it the same way. Apparently, Maria and the classmates were talking about ghosts around Halloween time and some students mentioned how they don’t ever want to die. Then Mrs. K told us that Maria spoke up and said “I’m not afraid to go to heaven. Heaven is a great place.”

That broke my heart, again. She is so angelic when I look into her eyes. She knows something that we don’t. Is it that she is a walking miracle? She knows why she is here; I wish I knew why I was here.

Maria’s blood count is growing stronger and we have anxiety about her next MRI scan. We go down to St. Jude the Tuesday after Thanksgiving, November 28, 2006. Keep the prayers coming.

Also, we want to thank WGAR 99.5 radio station for spending two whole days airing the St. Jude Radiothon. Maria, Megan, and dad got to go and tour the radio station and do some promos for the Radiothon. They even put together an entire song/story using Tim McGraw’s “My Little Girl” song. Made me cry….again. We also went live on the radio last Thursday to talk about Maria’s story and how St. Jude has made a difference in our lives. It is a place you should love to give to, but never have to go. Well, go to http://www.wgar.com/ to see the photos and send Chuck Collier an email to say thanks. He is truly a caring man!

I will try and tell more stories in future posts if I can remember all of them. There are just so many people that have helped us and prayed so hard for Maria. We are still sending out thank you cards from 4 months ago. We are really behind. Thanks again for your love and support.

God Bless
Ed and Megan

Update as of Monday October 16, 2006

Hello Everyone,

Thank you for being patient. We have been traveling quite a bit. We will try to keep you updated more frequently going forward. We know how many of you are concerned about Maria and pray for her each day and for that we are so grateful.

After our last trip to St. Jude’s I had a very difficult time. Everything seemed to collide at once and I lost my footing. For the first time we met another child at St. Jude’s with Maria’s diagnosis and they just found a spot on her spine. She is five and was diagnosed in December. Her mother and I talked and she expressed all too familiar frustrations with me. All I could think about was Maria is just a few months behind this beautiful little girl’s diagnosis date. After that we met with Maria’s oncologist about her MRI, which was “stable”. Not what we had hoped for. A subsequent review of Maria’s MRI by Ed and me later showed a slight increase in the size of the tumor, though it is still considered to be stable. Again we heard Maria’s oncologist saying to us “take this time now and enjoy it with her”. It was ripping me apart and I just started to slowly unravel. The days are passing and we need to be more aware of Maria’s symptoms. This thought caused panic inside of me. I felt myself starting to walk down the dark path where there is no hope. I let myself become overwhelmed.

On the plane ride back from St. Jude’s Ed and I were filled with sadness. I felt awful inside. But, in the midst of this, I look down at Maria and it struck me that she was the complete opposite of me. Laughing as she drew mustaches on people’s faces in the in-flight magazine. I was comforted knowing she was untouched by the trip. Living in the moment. Things are great now. Why are we worrying about tomorrow? When we do that we waste our here and now that is going very well. This is something I know, but I have to keep constantly reminding myself--over and over again. Be more like a child.

Each time I found myself in a situation where I was asked about Maria, I just broke down. I didn’t want to do that so I just avoided contact with people. I couldn’t talk to friends or family members because it was too painful to talk about. For the first time ever I started to question if there was a God and I asked Mother Teresa “if He is there—show me.” I can’t go on like this anymore.

Some of my most cherished moments with Maria are at the end of the day. She and I say prayers (we pray for all of you). She tells me about her day, jokes around with me and we laugh and chit chat about silly things. One night I was putting Maria to bed and she looked up at me and said, “You know Mom, no one ever really dies. They just go to sleep and when they wake up they are in heaven.” Yes, Maria. You’re so smart. I smile and tell her that is true. Then she asks me whether or not I know if there are Polly dolls in heaven. I love my girl. Then I think and realize that we really do need to be more like children to enter into God’s kingdom. They just trust and believe so innocently and they are so much happier and content for it. They are so close to Him.

There is something about Maria. I can’t quite describe it. She is very much a six-year-old girl, but I can’t help but see there is a beauty and a depth to her of the likes I have never seen before. I see it and I can’t help but know that there is a God because He has His arms around her and I don’t only see it, I feel it. There is a presence about her.

Though I feel good that He is with her, I am also frightened because I don’t want Him to take her away from me. I know that I have to let go and trust in Him. It isn’t easy for me. I know it is what I have to do. I’m still working on letting go. Being more like a child.

I don’t know if I’ll ever discover that day when I feel complete peace and acceptance, maybe not until I’m at my final resting place, but I know that I have to try. Maybe this is the struggle of our earthly life.

Wouldn’t you know it would be just like God to remind me of His presence through my own daughter, not to mention SO many of you. How could I ever question it?

I meet every other week with some of the strongest and most wonderful women I know. We study the teachings of the Church and what it means for us as wives and mothers. These are my Familia sisters. I call them sisters because I feel so close to them. They have helped remind me of God’s presence more than they probably even know. They give me so much strength.

I have another friend who sends me cards frequently to let me know she hasn’t forgotten and that she continues to pray for us. I’m beginning to think she has e.s.p. because they seem to come when I most need them. The thoughtful gifts, the prayer shawls and quilts made by loving hands from some of you we have never even met. A priest named Fr. Tim who is truly touched by the Holy Spirit. He speaks and reaches so many people. If you haven’t been to one of his masses you don’t know what you’re missing (don’t want to put any pressure on him or anything :). A neighbor and friend who started Wednesdays for Maria where they go to 9:15 mass and pray the rosary afterward (it’s at St. Raphael’s and you’re all welcome!). Another friend who organized Adoration for Maria who has been such a comfort to me so many times. Another friend who has vigorously helped me work out a healthy regimen for Maria. Friends who have given us of what they have—their vacation home so we could get away and spend quality time together as a family. Friends who organized Maria’s Benefit and 5K run. The Teamsters and their poker run for Maria. A photographer who offered to take our family picture for us. Students who pray for her daily. Kind people who come up to me or stop me just to tell me that they pray for Maria and our family every day. The list goes on and on.

How could I ever question the presence of God? He has revealed Himself to us now more than ever before in our lives. All I have to do is look into the eyes of my daughter or at any of you and I see Him.

So I have gone from very dark to very determined. I am not giving up. I’m back on my feet and I’m channeling the positive energy. As I’ve mentioned before, Ed and I have been praying and asking God to guide us. We have talked about how we can do more. So we are going to and we will tell you more about this later.

Disney. Yes we went to Disney for Maria’s “Make-A-Wish”. What a fun trip that was. We really had a great time. We stayed at a place called “Give Kids the World” and it really is a wonderland all for kids facing difficulties like Maria’s. Maria had her picture taken with all of the princesses and characters and enjoyed the Disney thing, but I noticed that what she liked most of all was just hanging out and being able to laugh and have fun with her family. I think the quality time meant the most to her and it did for me too. The simple things.

Dance. Maria is taking dance with her close friend across the street and some other friends from school. She has always wanted to take dance and the physical therapist said it would be a great idea and she was right because Maria LOVES it! She’s got the groove in her!

So, life is good.

We thank you all for your continued prayers for Maria.

With much love,
Ed and Megan

Update as of Friday September 8, 2006

Hello Everyone,

We are back from Memphis! Maria, Mom, Dad and little Blake all went while Eddie and Aidan stayed back to hold down the fort. Maria was great. Everyone was so happy to see her. We got the MRI and it shows that the tumor has not grown and that it is stable. That is great news. We would have like to have seen it disappear, but stable is the next best thing. Our next scan is scheduled for the Tuesday after Thanksgiving. And boy do we have a lot to be thankful for, let me see……………..

Anyways, Maria is back in school and just loving her new teacher. She does her homework every night. School is one thing that she truly loves. She gets up every morning so excited to run to the bus stop and jump on the bus.

She keeps asking me how many days until Disney……yep, we are going to go and we are going to make it the best time in our lives. The boys are going to start preschool soon and are very excited as well.

Time is going by too fast…..I wish I could just press a button and make time stop, just for 50 years or so……

Someone asked me the other day if I “made a deal with the devil yet” in regards to Maria….I laughed because I knew it was a joke, but I did respond. “He hasn’t called me yet, but when he does, I would make that deal in a heartbeat”.

This has made me think….I would never sell my soul for anything in the world, but my daughter would be the closest thing. Besides that, there isn’t anything I wouldn't give to save my Maria.

Father Tim said in the video, which when I first saw it, it was the first time I heard it, he said, “who are we to deprive someone from Heaven, when it is ultimately the place we are all trying to get to?” Which I agree, but as I think harder and more selfishly, I think, “I would never want to stop my Maria from going to Heaven, but I really do want to delay her trip. Not because I don’t want her to go there and be with God, but more out of the fear that I may not go there and then I may never see her again. And that is what I fear the most; never seeing my Maria again.

It is times like this that so many people think about their faith and the relevance and question the validity of all of it. This too is unknown and this too is hard. All I keep asking is for everyone’s prayers that our Maria will be with us for a long time and that if God ever does decide to take her I hope that he thinks about taking me with her.

Please continue to pray and know that we love and thank all of you for your continued support.

God Bless,
Ed and Megan

Update as of Wednesday August 30, 2006

Hello Everyone,

Where is the time going? Our trip to Hilton Head is over, school has begun and our trip to St. Jude is right around the corner. Anxiety builds as you keep trying to shake it off. Where did summer go?

Our trip to Hilton Head was so precious. It went too fast. Nothing to do was staring us in the face and time with our children was all we had. It had its moments of craziness, but that’s really what makes it all so great. We have to thank our wonderful friends out there and a few other people who wish to remain anonymous for making this vacation possible for us. We love you. You can’t know the depths of what this has meant to us.

School is here and now Maria is gone from 8 until 4. I miss her during the day. The day seems so long. I have to remember that even though I miss her it is what she is so excited about. She loves school and she couldn’t wait to get on the bus and go. Time is passing so quickly. I try to remember “today—just live in today”. It’s difficult sometimes, but I’m trying very hard. Sometimes when you are living in “today” things come your way that quietly remind you that all is not what it once was. Little things in daily life that never caused me to blink an eye before now bring gentle reminders. Maria tells me something funny and I don’t ever want to forget it. I stop and tell myself “don’t forget that Megan”. I watch her as she plays with her cousins and I ask myself “will they always remember this?”. “Will they be ok if something happens to her?”, “will they always remember her if…”. Sometimes it is as if my heart tries to give me a reality check. “Don’t get too comfortable. Remember to pray. Always pray. Maria still has this beastly tumor”. I don’t like to be reminded but it is as if my heart is preparing me not be completely shocked and hurt—just in case. Like I said to Ed in the beginning, “our lives are now forever changed—no matter what the outcome.”

We attended a good friend’s wedding on Saturday and I found myself unexpectedly getting choked up. At first you think it will be great to see all your old friends and get together and have a good time. Then, in the midst of it, you look at the bride and groom and you see what a beautiful thing weddings are and then the reality check hits. Will I be able to be at Maria’s wedding someday? Then the tears come to my eyes. I can’t think about these things. I can’t go down that road.

I started talking with two very good friends at the wedding. We had a conversation about God and faith. My one friend said that if anything happens to Maria she will be done. She will never ever forgive God. I don’t want anyone to feel this way. This isn’t God’s fault, and, like someone commented on earlier on this site, sometimes we can’t see the picture the way God sees it. What I do believe is that God listens to our prayers. We can’t stop praying for Maria. We have to ask God to intercede for her. I believe a miracle can happen. My hope is unshaken. One thing my friends did say is they pray now more than they ever have and that Maria’s situation has changed their lives in such wonderful positive ways. I love to hear this. This is what is so good about all of this, and I just love to hear the good (now if I could just get them to attend Church!). No matter what the outcome, this goodness should continue in the lives of everyone who has been affected by this. The last thing I would want to see is only bad produced from this tragedy. Continuing on with the changes it has made in your life is positive and good and we need that to grow, not end. And, don’t worry, there are great things in store for Maria and I know the world will come to know how special she is. Already God has done so much through her for so many of us.

Ed and I were talking about how beautiful and wonderful Maria is as we so often do, and it struck us that Maria is the glue that keeps this family together so well. She is in the center of our family picture and it occurred to me how appropriate that really is. The boys look up to her so much and Ed and I adore her.

Our Make a Wish trip to Disney is coming up. We don’t have a fierce agenda of things we have to run and do. Our agenda will be simply to enjoy ourselves and make the most of this special time together.

Wednesday, September 6th, 12 noon at St. Raphael’s there will be a rosary for Maria. Please mark your calendars and show up for this. It is only about 20 minutes of your time and we really need your beautiful sincere prayers for our daughter. Please try to show and if you are unable to, please say a rosary or have a quiet prayer for her. We will leave that day for St. Jude’s and her MRI and appointments will be the next day on the 7th. Please keep her in your prayers always, but if you could say extra prayers on those two days that would be so appreciated by us. We just so believe in the power of prayer and what it can do.

Thank you for your continued prayers for Maria.

Love,
Ed and Megan

Adoration for Maria

Are you willing to give an hour of your time to spend in Adoration of Our Lord to pray for Maria? St. Raphael’s parish holds weekly adoration on Friday’s from 10:00 am until Saturday at 8:00am in the side chapel. On Friday, September 1st, we would like to have every hour of adoration filled with at least one person to pray for Maria. This day is significant as Maria’s next MRI will be the following Thursday, September 7th.

Adoration of the Blessed Sacrament is such a powerful form of prayer. Mother Teresa noticed more vocations to her order when an hour of daily adoration was added to their prayers.

Let’s give Maria and her family our best effort of prayer before returning to St. Jude’s. Let’s make sure Christ continues to hear us. Let’s make a difference.

If you are interested, please email Lori Gentzel or call 440-777-2884. Please indicate a time preference in your message (ex. 12-1 pm on Friday).

Thank you so much and God Bless.

Lori

Open House for Maria

You’re invited to an Open House to benefit Maria McNamara and St. Jude Children’s Research Hospital!

• When: Thursday, August 10th
• Time: 3-5 PM and 7-9 PM
• Where: Betsy Kaiser’s Home
• Address: 1463 Fitzroy Street, Westlake
  (In Victoria Estates off of Columbia b/w Detroit & Hilliard)
• Children welcome!
• RSVP ASAP at (440) 892-7655 or betsyk@mac.com

Get a step ahead on your shopping needs FEATURING:

• Sheila Bee Designs by Sheila Becker
  Adorable head bands for girls in a variety of colors and patterns
• Usborne Books with Linda Donnelly
  Books to expand a child’s world through education and imagination! With over 1,300 titles to choose from, there is something for all ages.
• Silpada Designs with Niki Harbeitner
  Beautiful sterling silver jewelry from the collections of Silpada
• Well Done Catering by Liz Sfeir
  Light refreshments while you shop!
• Such Fun Stuff by Jen Joyce
  Personalized papers.
  

Unable to attend, but would like to support Maria? Give a call or place your orders online:

• For Usborne books please go to www.childrensfavoritebooks.com
  (Click on eshows for Maria McNamara)
• For Silpada please go to www.mysilpada.com/niki or call Niki at (440) 756-5611 or e-mail her at sterlingniki@comcast.net
• For Such Fun Stuff please go to www.SuchFunStuff.com or e-mail info@suchfunstuff.com or phone Jen at (440) 937.FUNN
  

Profits and books earned will go directly to help Prayers for Maria and the children of St. Jude

The Miracle of Maria

Hello Everyone, We decided we would like to share the video from Maria's Benefit with all of you. Ted Gordon put the video together and did such a wonderful job. Thanks Ted. We would also like to thank everyone who worked on and participated in the 5k and Fun Run. Linda Sheehan, you are such a beautiful person and your work on this is so very appreciated. The event had a turnout of 462 people! Thank you all so much for caring about our family. Please remember to keep Maria in your prayers each and every day. God Bless, Ed and Megan

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.