Thursday, January 27, 2011

Day +666: Loving Life!

It's day +666 for Max and, although that number is a bit scary, things with Max's health are not! He continues to do well and love life! We have been quite busy with the "normal" things that 9, 6 and 3 year-olds do lately including basketball, trips to Xavier games, birthday parties and fun things like that! As you all know, both Max and Alex have quite a passion for basketball so, they are both currently playing on basketball teams and really enjoying it. Max's team had their first game last Saturday and they won! Max had a great break-away and scored right at the end of the game. It was priceless to see him after his score, running back down the court with a proud look on his face, pumping his fist like the NBA players do! Many of the parents at the game commented on how neat it was to see him like that. Our miracle continues!

Alex has been really enjoying his basketball team too, although he is well beyond his age, skill-wise. He is the star of his team and actually has to be held back so that the other kids can get back down the court before he takes it down and scores again! Oh, what months of playing hoops in your basement with your older brother will do for you!!

Max had his monthly check-up with Dr. Davies about two weeks ago and his counts continue to be good. Matt and I asked her again about the cyclosporine wean, as it has been bugging us at times and we just wanted to be sure we understood her reasons for continuing it. She was stern with me this time and told me that we have to be patient. The bottom line is that there is still a bit of a war going on in Max's body between Ellee's cells and the few cells of his own that remain. We have to wait things out until Max's remaining cells peeter out and let Ellee be in charge. If we are not patient and wean the cyclosporine too soon, Max's cells may be too strong and take over again. Then we would be back at square one...not good at all! Dr. Davies reminded me that Max's aplastic anemia was caused by his own cells and thus, we don't want them back in control or it could happen again. She also assured me that she feels his cyclosporine dosage level is safe and that he will be off of it before college! Although I think she said that somewhat jokingly, it actually relieved Matt and I. Our fear is that if he never gets off of it, he cannot be re-immunized and that would be limiting to his life. As I type that, I realize how great it is to be thinking that way...limiting to his life!!!! Because, the way things are going now, his life has no limits!! Miraculous!

On another miraculous note, Max's Meals & More has also been keeping us very busy! We served a New Years meal on January 16th to the inpatient families of the Cancer and Blood Diseases Institute. They enjoyed a traditional Cincinnati/German New Years meal of pork and sauerkraut! I was sick so, for the first time, I was unable to attend the meal, unfortunately. But, Matt took over for me and it went off without a hitch again. We now have a full year of meals planned (13) for A5 with a special meal planned for every major holiday and a few other "just because" dates as well. In February we will be serving a meal of fun appetizers for the Superbowl, courtesy of Friday's in the Anderson Towne Center. We were thrilled to get them to donate the entire thing so, support Friday's in Anderson whenever you can and thank them for us! We will also be doing a Valentine's Day lunch in February and have been blessed by the fourth grade girls at a local elementary school, Guardian Angels, as they will be preparing our Valentine's goody bags for us! Just this past weekend, our church youth group held "A Night in Italy" benefit dinner for Max's Meals & More. It was incredibly well attended with over 200 people there! They also raised an amazing amount of money which will cover nearly half our year's meals expenses! It was a very special night for Matt, Max, Alex, Ellee and I as we really felt the love and support for Max's Meals from our church community and friends. Thanks to all that attended and made the evening possible!

With things being so busy with Max's Meals & More, we are looking for volunteers for a number of different items. If you visit our website ( you will see a Volunteers page link at the top of the home page. If you are interested in helping us out, we would LOVE to have you! Just go to that link and let us know what you'd like to do. We are currently pulling a team together to plan a golf outing/family party in May and are looking for volunteers to bake with us at the Ronald McDonald House (RMH). We have two upcoming baking events scheduled at RMH from 7 - 9 pm on February 16th and March 17th so, if you are interested in joining us for one or both of these, just let us know! All of the supplies and recipes will be just show up and help us bake everything! It's a great way to help the many families from all over the world staying at RMH for treatment of their family member at Children's Hospital and it's tons of fun!

Two years ago on January 12th, our journey with Max and aplastic anemia began. It is astonishing to me to think of all that has transpired over the past 24 months. I could not be prouder of my son, Max. He is a trooper. Throughout everything, he remained so positive and so happy. He is quite a kid. I want to share a little story with you about Max, just so you can see what I mean. The transition back to third grade this year was pretty tough for Max in the beginning, academically. Of course, we expected it to be difficult but, it was hard for us to see him struggle and to hear that he had fallen behind and needed extra help to catch back up. We know he is a smart kid and very capable but, we also knew that he had to realize that for himself and start putting the effort in himself. So, we encouraged him greatly along the way and helped him as much as we could but, I am proud to say that he figured things out all on his own. He is now getting 100% regularly on spelling, math and economics tests. Above all, his teacher recently saw my sister at school and told her (she wrote it down for me so she got it exact), "He's such a great kid. I wish I could clone him. I've never had somebody work as hard as he does." Wow!! No parents could be prouder!

Also at school, Max has begun really sharing things about his experience with his classmates and teacher. Just this week, he took a poster board "Countdown Calendar" that we had created to chart his six week stay in the hospital in with him to share with his class. Last week, he took in a brochure about Max's Meals and told his class about the "Night in Italy" that our church was having. I am thrilled to see him doing these things and think it's a really important part of the healing process for him. He is beginning to realize what a hero he is to so many people. He is starting to see the good that his story has inspired and the wonderful things that are happening as a result of it. Our miracle continues...

More soon...

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

Monday, January 3, 2011

Day +642: Happy New Year!

It's day +642 for our Max and things are so quiet and boring around here this afternoon!!! UGH!! We had an absolutely FABULOUS holiday break! It could not have been better. We just really enjoyed our time together and got a great chance to relax and have some fun. I am missing the heck out of my boys today as they are back at school! I had butterflies in my stomach again yesterday with the thought of them having to head back to school today and felt a little apprehension again, like I had at the start of the school year. Crazy, I know but, it has made me realize what amazing and precious bonds that I have developed with my kids through this journey. We are truly connected in powerful ways that we weren't before and I really, really miss them when they are not with me. I know this is part of life and I must let them leave the nest and fly with their own's just harder than ever still for me to do it!

Our holiday break was just filled with fun and special moments for all of us. It was really the first time in a LONG time that we could do whatever we felt like, day after day, here at home! We went sled riding all together (Ellee LOVED it), went to see Yogi Bear at the movies, celebrated Max's birthday at Recreations Outlet with lots of family and friends, went to Xavier basketball, Cyclones hockey and Globetrotters games, went to church, shopped together and enjoyed tons of wonderful time with our families. It truly was the greatest gift just to have this time to have fun together and relax, away from the normal structure and routine of our lives again. One day, Max and I even commented in a happy way on how much it felt like the "old days" when we were stuck here at home together. Once again, the memories of those days feel happy and are something we look back on with longing already. Despite the challenges of those days, they brought us closer together than we had ever been before and set a foundation of extreme strength, love and joy for us as a family. For that, we are eternally grateful. It was very, very nice to relive them a bit over this break.

As we head into the New Year, we are filled with gratitude and feel incredibly blessed. Having Max's return to health is such an immeasurable blessing for all of us. The experiences and lessons that we have learned along his journey are something that we continue to keep in our hearts and minds to guide us as we move forward. We look forward to the days in 2011 when we can relax together as a family and enjoy good times. At the same time, we are hard at work on really getting Max's Meals & More fully running so that we can give back to those that are currently facing the overwhelming struggles that we know all too well. Our Christmas Eve brunch was well received, along with the goody bags and gifts that we presented to CCHMC. It brings us boundless joy to know that we are able to help the families of the Cancer and Blood Diseases Institute in these ways and that we have been able to turn a really tough time in our lives into something positive for others. We hope to build on Max's Meals & More in the coming year and into the future to continue providing this service.

The most important thing that we have learned throughout Max's journey over the past two years is that you never know what tomorrow may bring. Living in the moment has become our motto and we strive to focus on this and not dwell on worries for the future. Max, Alex and Ellee are happy and enjoying every bit of life...Matt and I could ask for nothing more. Recently, a BMT friend that we have gotten to know through Max's Meals had a profound ending to her Care Page update that I thought I would share with all of you: "Today I remind you to take the time to hold your kids and smile. Tell them how happy you are to be their mommy and/or daddy. When you next talk to God, tell Him thanks, too…for so much that we all just have around us every day and don’t even look at twice!" Thanks, Kimber.

Happy New Year to all of you! Thank you for your continued support and love. We hope you will continue on into 2011 with us, as we look forward to sharing lots and lots of fun times with all of you!

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