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.
Ed and Megan
Wednesday, November 29, 2006
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
Monday, November 13, 2006
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.
Ed and Megan