Thursday, July 29, 2010

Day +484: Back From A Great Vacation...In The NEWS!!

It's day +484 for Max and we have been back since Saturday from our wonderful week in Hilton Head with the Meyer family. Everything went extremely well for Max and all of us on our visit down there. I have to admit that Matt and I both breathed a sigh of relief as we packed up to head home, realizing that we had made it through another trip without issue for Max! It's so great when things go so well and we are able to get away and really enjoy it, without thinking much about doctors appointments or blood levels, etc. We all enjoyed the beach, the pool, biking, putt-putt, The Salty Dog, Shelter Cove and just hanging out with all our fun family members (there are tons more pictures at the link on the right of the blog). At one point in the vacation, I said to someone, "if people only knew us down here in Hilton Head, they would never know what had transpired with Max over the past 18 months!" The last time we all went was two years ago and, little did we know at that point what lie ahead of us.

Although we had a great time in Hilton Head, avoiding the sun to protect Max's skin from developing any graft vs. host was a bit of a challenge. We ended up rigging up a shady area in the pool with a big tent so that he could swim during the afternoon and spend more time in the pool. We were careful about how much time he spent out on the beach, even with full sunblock, a hat and long sleeves, that sun down there on the beach is just brutal. We did our best to spend no more than 2 hours out there during the peak sun time (from about 10 - 4). As the week went on, it did become apparent to us that the issue of sun protection for Max has quite a dramatic effect on our entire family, particularly on vacations. We just don't vacation to places where you spend a lot of time inside! In fact, I don't think most people do!

We were quite struck by this, as the sun issue has been largely "glossed over" by our doctors. It just made us realize, once again, that there will be long-lived ramifications of Max's journey for all of us and that we need to continue to adjust to our "new normal" by learning our safe limits and getting creative about how we do things. Once more, we did mourn a bit for the old innocence of our lives - when we could just go out on the beach and stay all day, as long as we had some sunblock! But, we aren't going to stay in that place. We are going to find new ways of doing things and explore other options so that we find ways to have just as much fun!

Since we have been home here, we have been busy, once again! We had a very exciting afternoon around here today. Channel 9 news, WCPO here in Cincinnati, visited us here at home this afternoon, along with two representatives from Hoxworth Blood Center. WCPO and Hoxworth are holding a joint blood drive next Wednesday, August 4th at several of the donor centers around town. They wanted to feature a blood recipient and their family to help promote the drive so, they chose Max!! They were here for about an hour today and did interviews with Matt, Max and I and then shot video of the boys shooting hoops and Ellee reading (their favorite afternoon activities). They are going to let me know exactly when the story will air but, they expect it will either be next Tuesday, August 3rd or Wednesday, August 4th during the drive. I'll be sure to let you all know once I know more!

On another exciting note, our dear friends, the Merks, were featured in a story about Give Kids the World (the village where we stayed on our Make A Wish trip to Disney) on the Today Show this morning! You can watch it at the following link: It sure brought tears to my eyes! GKTW is just an amazing place! The more publicity that it can get for it's mission and what it does for so many families, the better! You can see that little Tony and his family enjoyed a fabulous time, just like we did down there. Tony continues to do well so far through his treatment to fight his cancer again. The family is hanging in there and appreciates all your thoughts and prayers.

Reporting good news to all of you lately is becoming a regular thing, I'm happy to say! We are gearing up for the big return to school this fall for Max and for Alex's start of Kindergarten and Ellee's start of Preschool! These are exciting and happy times for all of us. We are so grateful for Max's continued progress and for all of the fun we are having. We are so enjoying life these days.

More soon...
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

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