Wishes & Dreams

Having children with potentially life-threatening illnesses is a challenge. Over the years, we've had many close calls and scares. We continue to pray, wish and dream of a cure for Shwachman-Diamond Syndrome and Mitochondrial Disease.

Our two youngest boys came back with blasts (leukemia cells) in their bone marrow way back in 2000. Because of this, the doctors put them in for a wish through Make-A-Wish Foundation. At the time, we had to undergo more frequent bone marrow biopsies to check on their marrow and the doctors HLA typed us thinking the boys would be headed to bone marrow transplant. With our youngest not having a sibling match, they didn't know for sure if they would even attempt a transplant. Medical science has come a long way in 11 years, but our youngest doesn't have a donor match in the bone marrow registry. Once again in 2006, our family was HLA typed because the doctors at CCHMC in Cincinnati felt Joseph was headed toward transplant. We even worked with a donor search coordinator who completed a preliminary donor search and we found that there was no match should Joseph need to go to transplant. Once again, we were repeating bone marrow biopsies every 3 and then 6 months. Life was once again crazy.

Make-A-Wish Foundation provided our family with a much needed break from our day to day medical worries and procedures. Sean wished to meet Steve from Blue's Clues and Joseph wished to meet Pooh Bear. Joseph was so very cute. His second wish, if he was not able to MEET Pooh Bear was to BE Pooh Bear.  Make-A-Wish sent our family to New York City to meet Steve and to Walt Disney World to meet Pooh Bear.
Our Family with Steve
Joseph with Pooh Bear at Disney World

Our oldest also had his dream come true when Brett Favre, through his Fourward Foundation gave him tickets to see the Packers play at Lambeau field. It was a great experience.  I drove with the three boys over 16 hours to get to Lambeau field for the game and Joseph puked a few times.... but that is life with chronicaly ill kids, right!?  

The boys in their seats at Lambeau Field. Sept 2006
I have written about the boys' wishes and dreams. I love to write and I love to share about the wonderful people who made their wishes and dreams come treu. To read the details about our wish experiences, please read the following:

Why Make-A-Wish (this was the original title in the non-profit newsletter. AC changed the title)

Sean's Make a Wish Story

Matthew's dream comes true in a Pilgrimage to Lambeau Field

More pictures from our wish and dream adventures!

Sean with Steve
Sean at our house the day the wish granters came to visit.
Our family at Epcot during Joseph's wish

Our family at Give Kid's the World during Joseph's wish

The tickets left for me at Will Call

The boys after the game with a few Packers players.

The view from our seats....right on the 50 yeard line!

Matthew getting into the game.

Matthew as we were leaving the stadium.

Joseph with the Packers players.

Joseph in the Hall of Fame

Sean and Joseph in the Hall of Fame

Sean and Joseph next to Favre's uniform. Matthew was off reading the signs at the museum!

The boys after buying their new cheeseheads

In the atrium as we just arrived

Outside Lambeau Field as we were leaving.

Close up-- used this as our Christmas Card cover!
This is the story of Joseph's Make-A-Wish.  I moved it here when we changed our family website over to the blogger forum:

Joseph's Wish trip was in September of 2000

Joseph's Make A Wish trip was amazing. I just finished making a scrapbook of the entire trip. It started when the wish team came to our house to ask what Sean and Joseph wished for. They asked each fo the boys, "If you could wish for anything in the world, what would you wish for?" Joseph was almost 3 years old at the time and he replied, "I wish for to meet Pooh Bear." Then they asked him for an alternate wish, just in case Pooh Bear wasn't available to meet him and he said, "I wish for to BE Pooh Bear." We laughed so hard. To this day, he still loves Pooh Bear. His Wish was granted and we left ealry one Sept morning in a Limo headed for the airport. He was wearing the Mickey Mouse ears MAW sent to him and he had his Bear In the Big Blue House backpack they sent. When we landed in Orlando there were people there to greet us and bring us to the car rental place. They gave us instructions to get to Give Kids the world...a beuatiful palce for kids with life-threatening illnesses (www.gktw.org). When we arrived it was like entering a theme park. The staff gave each boy a shirt and gave Joseph a stuffed Mickey Mouse doll. GKTW has its own waterpark, its own ice cream shop that serves ice cream morning and night. Several swimming pools, a train and lots of fun for everyone. When we entered our villa, there were gifts for all three of the boys. That afternoon we stayed at GKTW and rode the train, played the games and ate at the gingerbread house. AND we had ice cream.

Before we even arrived in Orlando, I had made reservations for Joseph to eat with Pooh Bear at the Crystal Palace at Disney. Joseph's wish came true several times. When he met Pooh Bear, he was so excited. He danced and sang! His favorite ride was the Winnie the Pooh Ride-- he loved riding in the honey pots going through the Hundred Acre Woods. Later that night we ate with Pooh Bear and all the other Pooh characters. It was a wish come true.

The moment that really pulled at our heart strings was when Matthew walked out of the gingerbread house one morning to see Goofy standing there. He yelled, "MY wish came true, too! My wish came true, too!" Before we left, he had wished to meet Goofy. He was only 6 and it was hard for him to understand why his two brothers received a wish from MAW. I had tears in my eyes as I took his picture with Goofy.

We did and saw so much and the experience was wonderful. Too much to even put into words.

This is what I had up on our family website for many years about Matthew's Dream.  I moved it here when I decided to change our family website format over to blogger:

In October 2005, I wrote a letter to the Brett Favre Fourward Foundation. I never thought I would ever get a response. I'm sure they get many, many letters! In February of 2006 the foundation called me and said they would like to get Matthew tickets to the game. We never mentioned anything to Matthew about my letter or the foundation calling. Just in case it did not come to be. In August, they called to say they were definitely going to get tickets to a game. We still did not mention anything to Matthew. 10 days before the Packers vs Bears game, the foundation called and asked if we could be at Lambeau field on the 10th of September. We were able to switch our training with the new SCIG pump to Thursday afternoon after our visit at the hospital that morning. The boys worked hard to get their school work done, too. Dad couldn't go because he had to fly.....we left early Friday morning for Green Bay. Did you know it takes over 15 hours to drive from our part of NC to Green Bay?

We were so excited that we had tickets in our hands for the game! We arrived at the Will Call box just as they opened. I held my breath as they looked for the tickets. It was all so surreal....from the phone call that Matthew was getting tickets to the drive up to Lambeau. Have you ever had something like this happen to you and not believed it was really happening until you were there? I took way too many pictures...... these are just a few of them.

We never looked at the envelope the tickets came in.......at least not until after the game and we were leaving. How cool is it that the envelope says "tcikets left by Brett Favre"? I'm going to put it in Matthew's scrapbook. The lady from the Fourward Foundation had told me that these were his personal tickets....... it never really registered until I saw the envelope. Matthew was in heaven because he was finally able to go to his "Happy Place" and his dream has come true. Thanks to Mr. Brett Favre and his Fourward Foundation! Words cannot express how thankful we all are.

What a blessing! The tickets we were given were right on the 50 yard line! Here are a few pictures from our seats...the boys with their cheeseheads all ready for the game & pictures of the view. We may have converted Joseph into being a Packers fan. He says he is a Raiders fan, but he was certainly yelling, "Go Pack Go!" louder and more often than most folks around us!!!! I told him I am going to use these pictures of him suited up in Packers gear against him. Ha ha ha...... Matthew's #4 jersey is well worn, don't you think? He's had it for 4 years now......

I took a few pictures of the boys as we were leaving the stadium. Even though the Packers lost, they had a BLAST! Matthew said it was so cool to see the Packers play at Lambeau field. Win or lose. Joseph asked as we walked out of the stadium, "Mom, why do all these people come and BBQ and stuff when they don't have tickets to get into the game?" They are Packers fans. That's what Packers fans do!

A man who sat behind us in the stadium was the dad of a new Packer. His son, #24 made the active roster after having been picked up one week prior to the game. He talked quite a bit with Matthew and told us that he would give us his phone number to call after the game. Said he'd get his son and another Packer to sign items for the boys. He really did this! How cool!

Thank you to these wonderful Packers players who took the time to sign the boys items and talk to them. We truly appreciate it. The last picture is of everyone......... Go Pack Go!