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)

Wednesday, July 14, 2010

Day +469: A Couple of GREAT Days

It's day +469 for our Max-Man and we just wanted to share some good news and some neat things that have happened recently with all of you loyal supporters. Max started playing basketball on Sunday in a summer league with some of his buddies from school. He had asked me about doing this some time ago and we talked with Dr. Davies about it and she said it would be alright so, Aunt Monica helped organize a team and get it setup.

The Redhawks began with a bang as they had two games scheduled the first day. I wasn't sure how Max would do, given that he hasn't had that much physical activity in some time now but, I knew he had surprised and impressed me before with his stamina and I also knew how excited he was about this team. He was amazing! He ran up and down that court as fast as he could and kept up with players literally almost twice his size! If you did not know what he has been through, you would never have guessed! Even more impressive, however, is that in the second game, on a 10 foot hoop with a regulation size ball, Max was the top scorer for the team!!! He sunk two baskets and when your team only scores 10 points total, that makes you the top scorer for the game! :) He was so excited and proud of himself and Matt and I could not have been prouder. It was really something, to say the least. Parents on both teams knew Max and his story and we all had tears in our eyes as we watched him out there, playing his heart out. It was truly a dream come true for Max, Matt and I.

On Monday, Matt, Max and I met with Dr. Davies to have our discussion with her regarding the overall status of things with Max and the road going forward at this point. While the news wasn't great, it was really good and we were all pumped up as we left the meeting. Overall, Max is doing very well right now and the transplant has accomplished the goal that Dr. Davies had for it at this point. However, we are far from done and realize even more that this disease and monitoring Max's health are a part of our life forever now. Here are some highlights from the discussion:
  • Overall, Max is doing great right now. As Dr. Davies put it, “the goal of the transplant was to restore his blood counts to normal levels and they are good and staying there.” Thus, the transplant is accomplishing what we set out to accomplish at this point. His blood counts are essentially normal and he is returning to real-world activities. He has a functioning immune system again!
  • After our talk with Dr. Davies, Matt and I consider Max to be “in remission” from Aplastic Anemia. In this way for Max, it is much like cancer or leukemia. The one challenge that remains is that some of Max’s own t-cells (the strong, infection fighting white cells and the cells that caused his bone marrow failure and Aplastic Anemia in the first place) are still there, thus causing his mixed engraftment (ie chimerism) that you have heard us talk about. Because of this, there is a chance that these t-cells could cause him the same problem again. Dr. Davies considers this to be unlikely at this point, as it usually would happen in the first 3 months post transplant. However, as a result of this mixed engraftment, she is going to keep him on the cyclosporine for some time yet and will be monitoring his blood levels once a month for another year to two years. After that, we will go to once every other month monitoring and then eventually 4 times a year (ie every three months). Unfortunately, this is not ideal. 100% engraftment with Ellee’s marrow would have been better but, she did everything she could to try to achieve that. That being said, Max is fine to have a mixed chimerism, as long as his counts remain good and safe with it. She will be watching how his engraftment level shakes out over the next year or two and if things stabilize and his counts remain good, she will be even less concerned.
  • The guidelines that we have been under regarding contacting them for fever over 100.4 or rash, etc. remain in place with one major exception - she said that we do not need to “serve time” (ie spend the night in the hospital or even go down to the ER on weekends or after hours) at this point!!!! This is HUGE news and makes a TON of difference to Matt and I in what we can all do, etc.
  • Max will return to school as a “normal” third grader in the fall!! She expects him to be able to do everything that the other kids are doing. She just wants us to develop a strong relationship with the school nurse so that she can keep a close eye on Max and so that we can know what is going around the school and react as necessary to keep him safe.

Beyond all that news, we are busy preparing for our upcoming trip to Hilton Head with the Meyer family next week! We are all GREATLY looking forward to it! I have also been hard at work on some activities for Max's Meals and have gotten involved with a family that has a memorial golf outing in honor of their father each year to benefit the Make A Wish Foundation. Meghan Olson was Max's Wish Volunteer Coordinator and, in getting to know her a bit, we realized that her family and their annual outing were making Max's Wish possible. Thus, Matt and I really wanted to "pay it forward" and get involved with the outing. As a result, many of you Cincinnati friends and family members will be receiving invitations to the 7th Annual William S. Olson Memorial Golf Outing & Silent Auction to benefit Make A Wish. The event is in October and we would love to see many of you there!

The discussion that we had with Dr. Davies on Monday was just what Matt and I needed to begin moving forward with our lives at this point. We are thrilled that Max has progressed as well as he has to this point and feel incredibly blessed that he has done so well. Although the future remains uncertain, we have learned that life is never certain. You never know what journeys lie ahead or what challenges await. As always, we continue to live in the moment, counting our blessings and being grateful for every minute we have together.

More soon...

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

Wednesday, July 7, 2010

Day +462: Summer Fun

It's day +462 for Max and he has been doing great! We have been so enjoying life for a while now that I haven't taken the time to update in almost 20 days! We have been busy having fun so, I thought I'd share some of it with all of you.

We enjoyed a great Father's Day together with our families, celebrating all the fabulous dad's we have in the Meyer and Sherwin clans. My mom, dad, Matt's mom and I all went down to the hospital that morning to serve a delicious lunch to all the dad's on A5 from Max's Meals. Matt's cousin, Leah and her friend, Sierra have just opened a new catering business and restaurant so, we had them cater the lunch and they did a fantastic job. It turns out that there is quite a story and connection to A5 for them too that I was totally unaware of when we set up the meal. Sierra's sister was treated at Children's for cancer and unfortunately lost her battle just over a year ago. Sierra has always wanted to provide food to the families on the floor but wasn't sure how to get started. I think the experience was somewhat healing for she and her family. We are definitely planning to work together on more meals in the future.

As always, the lunch was very much appreciated and eaten up! The Child Life worker that has been helping us the past few meals said to me as we were leaving that the meals were so much more than food to the inpatient families. We have really come to see how much hope that we represent to those parents (and even some kids) that are currently stuck on A5, fighting their battles. I think seeing us and hearing Max's miraculous success story, in combination with eating some yummy and nutritous food, does a world of good to lift spirits on the floor...and that's exactly what we are hoping for!

Later that day, our families presented Matt and I with a very special gift in honor of Father's Day and my birthday. They had created a memory quilt for us and filled the squares with all kinds of personal thoughts about Max's BMT journey. It is such an amazing and unique gift. We have all loved looking at it time and time again and reliving many of the moments that we have shared along the way. I can't wait to show it off to everyone that visits! It is a true family treasure!

We have spent the last couple of weeks catching up on fun, again! Max got to spend some time with some good friends from school that he hasn't seen much of in the past 18 months. He and Alex played with their good buddies Jon & Tim one day and with their buddy Cam again. They have really enjoyed just hanging out with friends again and doing things they used to love doing with them. They can be found out in the neighborhood just about every evening, holding a full baseball game on our front lawn. Matt is almost always involved as well, if he is not traveling. It has become a summertime staple and we are all enjoying it immensely!

We also tried out swimming again in our neighbors pool last week. We used ear plugs and washed Max's ears out with a special solution that his ENT recommended after he was finished. So far, so good. He complained of a bit of ear pain last Friday night and we got worried -- but, it passed without issue, thank goodness! Max has totally enjoyed swimming again and Alex and Ellee have been loving it too. Alex is taking some private lessons right now too as he missed out on a critical year of learning last year and, as a result, was a little scared of the water. He is making great progress and has been scooting around on his own in the pool the last few times where he can reach (under my super watchful eye, of course) and enjoying it more and more every time. We are really looking forward to our family vacation with all the Meyer's in Hilton Head in just about 10 days! I'm sure we will all do tons of swimming there!!

We fit a trip to the Reds game in as well last week! The boys loved the game, as usual and learned about "rally-caps" as Joey Votto hit a three-run homer in the bottom of the ninth to tie up the game! It was very exciting. It was Ellee's first trip to a game since we went last July with Make A Wish and she enjoyed it too - mostly the eating part but, she was cheering and dancing as well! It was another wonderful summer-fun night!

Last Friday evening we had our dear friends, the Merks over for a cookout. As you will probably remember, we met the Merks while in the BMT unit with Max as they were there with their 4-year old son Tony, battling meduloblastoma (cancer of the brain and spine). As I told you in my last update, Tony's cancer has returned and they are again engrossed in a battle for his young life. Despite this struggle, we all enjoyed a great time together. It was the first time that we have all been able to be together since we met and the kids really enjoyed each other. They have three other boys, Alex, Ben and Max (crazy coincidence with the names, huh?!?) who are between 16 and 10 and our Max and Alex really thought they were cool. Our boys also loved getting to know Tony who they have heard so much about from Matt and I. Ellee and Tony hit it off as they share a love of books and had a ball together giggling away on the trampoline. It was so nice to just be able to take an evening and enjoy life together with the Merks like that. We are all on the same page, so to say, given our shared experiences. Although Max and Tony's diagnoses are different and their treatment paths have been very different, we have all experienced the same life lessons along our journeys. It's hard to understand this journey without having experienced it yourselves so, it is so wonderful when you have friends that have "been there and done that" too. It's just a bond that you can't find easily otherwise. We feel like the Merks are part of our family and we are breathing heavily with all of them right now as Tony faces his current battle. We pray everyday for all of them and think about them constantly. We hope to spend many more evenings like last Friday with all of them in the future.

As our journey continues and we experience more and more fun along the way, we are constantly reminded of our many, many blessings. There isn't a moment throughout our days that we do not think of the families that we have grown to love and care for that have not been able to experience the miraculous healing that we have seen with Max. The Akins, the Alfreds, the Martins, the Sneads, the Bradleys and the Merks are constantly on our minds. Their children's struggles and their family's tough journeys have taught us how important it is to cherish every moment. No one knows what the future holds - all we can do is make the most of today, enjoying every minute with those that are dear to us and doing our best to share love with everyone we meet. On that note, I came across a quote from Mother Teresa recently that I wanted to share with all of you - it has definitely become my mantra:

Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting.

More soon...

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