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I received a bone marrow transplant for a rare immune system disorder called Omenn Syndrome on June 30th, 2008. The first transplant didn't work so I had a second transplant in July or 2009. I just passed the one year mark for the second transplant and everything is looking good.
I am once again long overdue for an update. Sorry! Honestly I don't even know how many people still look at the site so maybe it's not that big a of deal I don't post often.
Lets see, when I last posted we had just celebrated Sam's 5th BMT birthday. Since then lots has happened at our house. All of the kids finished their respective baseball and softball seasons. Three of the four had a great time and are already looking forward to next year while one (Max) didn't seem overly impressed so I don't know if he will do it again next summer. They all completed swimming lesson as well and again three of the four passed (Max is once again the odd man out) but that is probably for the best.
School started 2 weeks later for us this year than we are used to so by the time Labor Day came around I was more that ready for the kids to start school. I am trying to enjoy my last year at home with Max because once he is in Kindergarten next year there will be some changes at our house. The start of the school year also brought fall soccer. Mike was asked to be Sam's coach this year but unfortunately (for Sam not Mike) most of the games were rained out so there was not a whole lot of coaching needed. Will and Katelyn were on the same team and did well overall. Max played for the first time this year as well. By the end of the season he was doing much better but in the beginning I think he spent more time running over to the sideline for a drink of water than actually playing the game.
Our biggest excitement of the fall was Sam's much anticipated Make a Wish trip to Disney World. We headed down for a week at the end of October and Aunt Deb was along for the ride (just as she has been for so much of this journey with Sam). We headed down the night before and got to meet Miles Beacom. He and his wonderful wife Lisa sponsored our trip. The next morning, bright and early (4:00 am to be exact) a limo picked us up from the hotel to take us to the airport. We were met by some wonderful Make a Wish volunteers and they helped us get checked in and on our way. We had great flights and the kids even got to meet the pilot and see the cockpit when we changed planes in Minneapolis. The kids were all very good on the plane, not really paying attention to anything but their iPods. Max on the other hand was very talkative for it being 5:30 in the morning. I'm sure everyone sitting around us was happy to have a play by play of the flight to Minneapolis. I believe there was even a moment as the plane was banking into a turn that Max exclaimed (for many to hear) that the plane was going down! In Florida we all had a great time. We were extremely busy (we went to 7 different parks in 5 days). The Make a Wish experience was wonderful. They think of absolutely everything. We got to have ice cream for breakfast, play a life size game of Candy Land, go swimming, meet Mickey Mouse, Goofy and Mary Poppins and that was just at the Give Kids the World Village. At the parks themselves we all had a great time. The rides we went on were amazing. The kids got to do the Jedi training at Hollywood Studios which was one of the musts for Sam on the trip. Katelyn was turned into a Princess for a day and Will and Katelyn were also brave enough to do the Tower of Terror with Deb (mom and dad were not brave enough to go). At Universal Studios we got to see Hogwarts, ET and Transformers to name a few. There were so many things to see and do it is impossible to name them all. It is defiantly an experience none of us will forget any time soon.
Christmas and New Years flew by and suddenly we are about midway through January already. Will celebrated his 11th birthday on the 5th, the kids missed a day and a half of school this week because of the weather and Will ended up in the ER with Mike on Friday night (the flu). I hope the rest of the year calms down and does not continue on the pace of our first week. If it does it will be a long year for everyone.
Thank you for keeping Sam and our family in your thought and prayers. We hope everyone had a wonderful Holiday season and we wish you all a fabulous 2015!