Day +695: February Fun

It's day +695 for Max...can you believe we are fast approaching day +700!!! WOW!! Another big milestone and life is great! I can't imagine it could be much better than it is now for our family. I haven't updated in quite some time...almost a month, I think! But, I've decided to keep writing and sharing our lives, more so for us in the future than anything and for those of you that would like to continue on this journey with us, you are welcome! We love sharing our new perspectives on life with anyone that is willing to listen.

February has been filled with lots and lots of fun things. Max and Alex are both playing basketball and really enjoying it. For Max, basketball has been somewhat of a metaphor for his unexpected journey the past two + years. When he was diagnosed in January of 2009, his passion was all around skateboarding and biking. He loved riding his scooter and idolized Tony Hawk. Shortly after he became sick, however, that passion shifted to basketball. He filled out a March Madness bracket and watched many of the games from a hospital room, either on the outpatient or inpatient side that year. We had a little Nerf hoop and bouncy balls in his hospital room during our long 6 week consecutive stay and he would take on anyone that came to visit - including our Pastor (whom he schooled...by the way ;)) and any therapist or chaplain that came our way!

It was also during his long stay that his passion for the NBA was born. We tried to bring a little gift for Max each time that Matt or I came back to the hospital after taking turns going home and Matt began bringing Max packs of basketball cards. They would sit together and read about the players, analyzing their playing history (college, NBA teams, etc) and their stats. Matt would fill Max in on historical players and their career highlights, etc. Max also started watching NBA games on tv and learning the players that way too.

Once we were home and stuck here in isolation for almost a year, we setup a little basketball court in our basement. You early followers may remember some of the slam dunking videos that I posted on the blog of Max and Alex in our basement. We have a "full court" comprised of two Little Tikes hoops (thanks Aunt Laurie) and painters tape court lines in the basement. It was at least a daily occurence during this time that the boys would have me judge them in a slam dunk competition. Whenever we had adult visitors over, they would line us up on the couch with paper and markers and have us all judge their slam dunk contests. It was always a hoot to watch! They would take on the persona of one of their favorite NBA players and be announced to the crowd with a flashlight spotlight, etc. Basketball in the basement was a HUGE way that we passed the time over those months stuck here at home.

I tell you all this only so that you will appreciate it when I brag a bit here about Max and Alex and their basketball prowess today. They are both stars of their teams! Max has scored 10 points in both of his last two games, the high scorer both games for his team. Alex's team is pre-school and kindergarten kids so, they do not keep score but, it is a common occurrence for another parent to say to Matt or I, "wow, your son is REALLY good!" He often has to be held back on the court so that the other kids can run down to the other end before he dribbles the ball down and scores again!

Watching Max on the basketball court and with his team is something else for Matt and I. We usually make it through the games with huge smiles on our faces and super loud cheers (Ellee is always telling me that I am hurting her ears at the games). But, later, in our quiet moments, our pride wells up and we both end up with tears in our eyes. It is amazing to see him out on that court with his buddies, acting like an NBA player and scoring points like crazy! I cannot express to you how wonderful it feels. It brings joy to Matt and I like nothing else could. To know what that little guy (and I do mean little...he's at least a head shorter than every other player out there) has been through and overcome...and to see him just relishing life like that is beyond words. It's miraculous! He has no fear and much confidence and he puts his all into the sport he loves...basketball. Who knows where it might take him in the future! Maybe somebody elses dog will be named Max in the future because of what he accomplishes in the NBA one day (in other words...there is a reason our dog is named Spud...after Spud Webb, the shortest player to ever play in the NBA).

Besides basketball, February has been very busy with Max's Meals & More. We have served two meals this month for the Superbowl and Valentine's Day and spent an evening with four wonderful women baking at the Ronald McDonald House. In addition, we officially kicked off our Clubs & Clowns event - a golf outing and carnival-style party to celebrate life and raise funds to nourish families at Children's Hospital on May 7th, 2010 at Lunken Playfield. We have a team of folks hard at work on planning that event and getting things ready. We are hopeful that it will be a very fun day and will raise some good funds for Max's Meals to utilize in fulfilling our mission.
To receive more information on this event and all our activities with Max's Meals, visit our website (http://www.maxsmeals.org/) and follow the subscribe link at the top of the Home page to receive regular updates. You can also find us on Facebook under Max's Meals & More.

Beyond all this, we have enjoyed lots of fun times with friends this month and I even got to go on my first women's retreat with our church. It was fabulous to be able to spend 30 hours relaxing, making new friends and thinking without interruption! I even got to take a walk outside by myself early on Sunday morning! It was very rejuvinating and much needed. I think it was perfect timing for me. I was at a point where I felt alright about being away from the family for a night and I just needed some time to think about everything and reflect on how our lives have changed over the past two years. It really confirmed for me that Matt and I are strong in our faith and that we are doing the right thing by having me focused on home, Max's Meals and helping at Children's Hospital right now. It was a great weekend.

As I said earlier, I am going to keep blogging, sharing my thoughts and perspectives on our life journey as we go along. I welcome those of you that want to continue along with us. You have so enriched our experience the past two years and your support has helped us through so many tough times. I am excited to be able to share our happiness and gratitude with you all, as we cherish every moment and continue watching Max, Alex and Ellee grow up! Life is a gift!

Peace and love,

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

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 (http://www.maxsmeals.org/) 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 provided...you 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)

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 wings...it'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)

Day +630: Merry Christmas

Today was day +630 for our Max and life is good! I have been wanting to blog for sometime now and just haven't been able to find the time. Things have continued to be quite busy around here, especially lately, as I'm sure everyone can relate! It's nice to be back in the "real world" again but, sometimes I really do miss the simplicity of our days stuck in isolation at home, believe it or not! I knew I would one day get to the point where I would look back on those quiet days here at home longingly...and it seems to have arrived already!

Max continues to do very well. He had his monthly checkup two fridays ago and his counts remain steady and look good. Dr. Davies thoroughly checked out his skin, respiratory system and gut and gave him the thumbs up, once again. We discussed the wean of the cyclosporine briefly and, without giving me much reason, she told me that she did not think she would be comfortable starting the wean until the spring time. I didn't ask her for much explanation - I just know to trust her on this one. We obviously know that she knows what she is doing and know that there is good reason to wait. So, we patiently wait. We are anxious to be done with the cyclosporine just so that Max's immune system can gain full strength with Ellee's marrow at the helm and so that he can begin his re-immunization. It is nerve racking to think that he is attending school and really doing just about anything he wants to, all without any immunization protection at the moment. We are relying on the antibodies he had previously received from IVIG and herd immunity and that can be a bit scary - especially when you hear quite often lately that herd immunity may be breached because of people not immunizing their children. I'm not making any political statements here...I'm just sharing our new perspective in light of Max's journey.

Despite the continuation of the cyclosporine, Max is thriving! He is just absolutely loving life being a "normal" 8 (almost 9) year old again. The boys and Matt really enjoyed their time at Reds Fest a few weeks ago. They got to meet several of the players and get some autographs, etc. Their mohawks were a huge hit too!

We have all been busy enjoying the fun of the holiday season together lately. About two weeks ago, we took our traditional annual trip downtown to see the trains, ice skate on Fountain Square and visit with Santa with the Meyer family. We were unable to do this last year because Max couldn't be out in public like that so, it was really nice to be able to return to this tradition. We had some cruddy rainy weather but, it didn't stop us from enjoying everything. Max LOVED ice skating again. He worked so hard at it. His little bird legs were bending out at the ankles because his skates were a bit big and he must have fallen down 50 times but, he made it around that rink at least 20 times! He is looking forward to going again soon before the holidays are over. The kids all enjoyed their visit with Santa too. Spud even got to see Santa one day recently...I thought you dog lovers out there would enjoy that picture! We had another special visit with Santa this week too, at my parents house with all the Cincy Sherwin grandkids. Mama and Poppy had special connections!

The kids had their first snow day of the year last week and we had a blast! I can honestly say that I even missed snow days last year! Since we were home everyday anyway, there was nothing special about a snow day last year. But, this year, we reveled in it! We played out in the snow for a long time and then came in and had hot cocoa and cookies, just like you're supposed to! We played games together and hung out in our jammies for most of the day. It was a nice reminder of the slower days of post-BMT isolation that we used to know so well!

We have also been busy with the hospital for multiple reasons lately. Max started seeing a psychologist to get some help with the few emotional/behavioral outbursts that we have had over the past six months. He really struggles when something unexpected comes up during a hospital visit and turns into a kid that I do not recognize. He gets extremely upset both physically and emotionally and lashes out at everyone in the room. Thus, we are working with a great doctor that specializes in helping kids with another chronic medical condition to learn coping skills, etc. It is quite an intense program which requires lots of extra visits to the hospital but, I know it is going to really help Max and be just what he needs.

Alex also kept us a bit extra busy with the hospital over the past few weeks, surprisingly! We received a letter and phone call from the nurse at school about two months ago, telling us that Alex had failed his hearing test at school and that she would be refferring us to an ENT for further testing. So, we made an appointment with the ENT that we have gotten to know well at Children's through Max's journey and took Alex to see him. Sure enough, he failed the hearing test again at the hospital and they pinpointed that he had hearing loss at one frequency in his left ear. It is the kind of loss that they see with WWII vets and rock band members so, it was quite a mystery as to why he would have this loss. Thus, they had Alex undergo a CT Scan to check out the formation of his ear to see if it gave any clues to the cause. Thankfully, we just found out yesterday that his ear is normally formed. So, for now, we will continue to monitor things with the ENT and see what comes of it. Of course, our hope is that this is just a fluke that he has this hearing loss and that it will never worsen.

Along with all that, I have continued to be busy volunteering on different parent advisory committees and groups for the hospital. I really enjoying giving my time to the hospital in this way as I have seen their commitment to continued improvement and believe that it is a great way for us to help others through our experience with Max.

Max's Meals & More has been keeping us busy too! We have had a tremendous amount of positive and exciting news with the organization lately. We submitted our application to the IRS last week for official non-profit status and hope we will get some word early in 2011 regarding our request. We have a fabulous Christmas Eve brunch planned for this week and have received some great donations that have allowed us to provide some special things to the Cancer and Blood Diseases Institute and the inpatient families. We will be delivering a flat screen tv, XBox and games, and a cart to roll it all around on to the Institute on Christmas Eve. In addition, we have wonderful goody bags, toys/games and even Starbucks gift cards for each family to take with them as they leave the brunch! A group of volunteers was here tonight helping us get it all ready and it was just awesome to see it! Thank you to all of you that have supported Max's Meal & More thus far. You are helping us to provide some really special treats for the families undergoing such tough times. Be sure to check out our website or Facebook page for pictures of the brunch, gift bags, etc (http://www.maxsmeals.org/).

People often ask me lately how the kids are doing with their re-assimilation to school and transition back to reality. I tell them that it could not have gone better for all of the kids. They have amazed me with how well they have re-adjusted to school and "normalcy". Sometimes I feel like the return to life as we knew it has been much more difficult on me than on them! They have done so well that I have to ask myself sometimes if the last 23 months really happened! It is a blessing. It has been a HUGE adjustment for me to have the boys gone five days a week, especially with Max being gone most of the day, and I miss them when they are not here. But, it is exactly what we hoped and prayed for and it is AWESOME to see them enjoying their lives so much!

The next few days are filled with happiness, peace and joy around the Meyer homestead! We have formed some wonderful traditions and we are all greatly looking forward to enjoying them with each other and our families. Not only are Christmas Eve and Christmas day fabulous but, we have another very special day on December 26th...Max's 9th birthday! Each day is a gift...this time of year just makes it even easier for us to remember that. We feel so blessed and so lucky to have time to spend with each other this holiday season. There is no doubt that is our greatest gift.

Wishing you and yours all the peace and joy of the holiday season! More soon...

Peace and love,

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

Day +612: Getting His Due

Today is day +612 for Max and I just couldn't wait to share the events of this weekend with all of you! Max is getting some very special treatment and it's so exciting that I wanted you all to know and have something to smile about.

Last night, very last minute, we were invited to attend the Miami University hockey game versus Notre Dame. Children's Hospital is working with Miami on a promotion called Swoop's Scoop. Another family was supposed to attend the event but, got sick so, our Champion's Manager at the Hospital called to see if we were available. It was an amazingly cool evening for all of us, to say the least - especially for Max. The Swoop's Scoop program put all of us on the big screen and talked briefly about Max's story, making him the special guest of the game! The look on Max's face was priceless. I could see how proud he was of himself and how honored he felt. Matt's sister Sarah's husband, Ryan was at the game and was able to get a video of it. You can check it out at the following link: http://www.youtube.com/watch?v=tqWQJUEltqY&hd=1 After being on the big screen, Max was approached by many people and given high-fives or pats on the back. Many people told him they were so glad that he was feeling better and able to be at the game! It really made him feel special. And we all loved the game, even though the Redhawks lost.

Right now as I type, the boys and Matt are special guests at the Cincinnati Reds-fest this afternoon! They are going to have some private time with some of the players and get autographs, etc. They both had their mohawks spiked way up in hopes of meeting Johnny Gomes (famous for his hairdo) and were extremely excited! I'll let you know more about this event soon.

My heart is just so full of joy seeing the kids be able to take part in these special events and enjoy them again. Max is finally getting his due. He is a little hero and deserves to know that! For so long, he patiently and happily underwent procedure after procedure, hospital stay after hospital stay, medicine after medicine, traumatic experience after traumatic experience and all without being able to see his friends or leave his hospital room or house! We are beyond grateful for his health right now and for the opportunity for him to enjoy life to its fullest like this!!!

Thank you to all of you that continue to support Max and the rest of us and to Cincinnati Children's Hospital for giving us these amazing memories....

More soon...

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

Day +608: Ever So Thankful

It's day +608 for our Max Man and he continues to thrive! He is LOVING LIFE...keeping himself very, very busy between school and playing with his friends. He hardly stops! Needless to say, it is wonderful to see.

As a follow-up to my last post, Dr. Davies decided that it was not time yet to begin weening Max's cyclosporine, unfortunately. We have not had the chance to talk to her personally yet to understand her reasoning but, as always throughout this journey, we trust she has made the right decision. We would love to begin the ween but, with the risks involved, we know that she needs to feel 100% confident and start it when the time is right so that it will be successful. Max is so in the habit of taking that medicine twice a day that he can do it just about anywhere! We have taken it with us to countless sporting events (Xavier games, Reds games, etc), friends houses, stores, restaurants, etc. We have to give it to him in glass so, some people give us some funny looks when we hand him a shot glass full of fluid but, it's the smallest glass we have! Anyway, we will continue practicing our patience with regard to this ween and have confidence that it will be successful when the time is right.

We have been busy, once again, since my last post. We had a very special occassion the Sunday before Thanksgiving as Max had his First Communion. It was a monumental day for him as well as all of us. The entire family came out to celebrate with him and he felt incredibly special. The look on his face as our Pastor handed him the bread and wine was priceless (see the picture). Without a doubt, he understands the sacredness of the ceremony and takes it quite seriously. As we got ready to go to church again this past Sunday, he asked me if he got to have communion again. He was so excited when I told him that he gets to have it everytime he goes now! It is truly heartwarming to see him embracing a tradition of the church like this. Every milestone for Max is extra special now and his First Communion was just that. I have tears in my eyes and a lump in my throat everytime I see him take the bread and wine.

Thanksgiving around here was a ball! The boys were off school for six days and we all really enjoyed the vacation from our routine. We had a great time at a local indoor playground, Recreations Outlet and enjoyed lots of time hanging out with our wonderful families. My brother and his family were in from West Virginia so, the entire Sherwin clan was here for the holiday. It was super special to be able to all be together with everyone healthy and doing well. We have two new babies this year on my side of the family so, we all had a great time playing with them and having little ones around again. I caught Max "babysitting" them a couple of different times. It was so fun to see him acting so grown-up and enjoying playing with the babies. Ellee really loved it too. She has been asking for a brother or sister now...but, that's not going to happen!

The annual Meyer Family Turkey Bowl on Thanksgiving Day was a HUGE hit around here too! Despite the pouring rain and their soaked bodies, Max, Alex and Matt came home with huge smiles on their faces. Ellee and I attended for a brief time too so that we could cheerlead the players on! Max and Alex anticipate this event all year and it has become their favorite tradition of Thanksgiving. The discussion post-Bowl this year was how long it will be until the game becomes Dads vs. Kids and who will win when it does! Should be an exciting future for the Turkey Bowl!

Things with Max's Meals & More are going well too. We are planning for our Holiday Tea this Sunday, December 5th where we are going to serve sandwiches, fruit, cookies, coffee and tea. We hope it will be a treat for the inpatient families on A5 and in the ICU. I have been working on developing some relationships with caterers, restaurants and bakeries in town and was able to get Busken to donate a bunch of cookies for Sunday's tea! I was really excited to see that people understand what we are trying to do and are supporting it in ways like this. We hope to have lots more of these kinds of donations in the future.

In the middle of all of our joy and celebration, we have had continued sadness in our BMT world. Our dear friends, the Merks from Cincinnati that we met while inpatient at CCHMC, have had an extremely difficult couple of days. Their sweet 6 year old son, Tony has been battling recurrent brain cancer for the past few months and became very sleepy and unresponsive on Sunday. He was rushed to the hospital and is now in the ICU at Children's on a ventilator. Just before this all happened, he was having a great time at his birthday party at Chuck E Cheese. It has been a shocking development for everyone, to say the least. We are praying, hoping and believing in a miracle for Tony and his family, as we have been for months now and would just ask that you all join us in keeping the entire Merk family in your thoughts and prayers. You can learn more about Tony's journey and situation at his Care Page at www.carepages.com/carepages/TonyBoy. The relationships we have made through Max's journey with families like the Merks are precious to us and it is extremely difficult for Matt and I when they are sufferring. We feel their pain and want nothing more than for their children to experience the miracle of healing like Max.

The events of the past few weeks have definitely reminded us how blessed we are. We have so very much to be thankful for. We realize more and more everyday what a gift it is to have health and happiness. We treasure every moment that we have together and are greatly looking forward to spending extra time having fun as a family over the Christmas holidays. Our little family traditions and special events mean the world to all of us now.

More soon...

Peace and love,

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

Day +590: Gellin'

It's day +590 for Max and life continues to be incredibly good! Max had his monthly checkup and labs last Friday at the hospital and came home with a big smile on his face! His labs all look great and Dr. Davies answered two of his questions just the way that he wanted her to - he is now allowed to swim in public pools AND he can play football next fall (uh, oh)!! These are two huge milestones for Max, once again! In addition to this good news, we discussed the possibility of beginning the wean of his cyclosporine (immune suppression) medication. His engraftment has been pretty stable the past six months or so at right about 90% so, Dr. Davies had the nurse draw some extra labs to look at one more part of his immune function before deciding for sure about the wean. Those results should be back soon so, we should hear more within the next few days about this big step. Needless to say, we are excited about this possibility and, at the same time, nervous. We are going to need to take this slowly and watch things closely to be sure that Ellee wins the marrow war. I reassured Dr. Davies many times last Friday that we were not in any rush and wanted her to be sure, which of course she will be before she even begins. To be honest, I could tell that she is nervous as well as she kept saying, "maybe we'll wean just a tick." We are going to have to try this at some point in Max's best interest, we all know. It's just going to be a bit of unknown territory and therefore, nerve wracking for a while.

There was additional good news from Friday too. Max has been receiving an inhaled medication, Pentamidine, each month to protect his lungs from a specific pneumonia that can affect immune suppressed individuals. Beginning in two weeks, we are going to switch over from that inhaled medication to an oral med that he will take twice a day for three days each week. Thus, his monthly visits will be even shorter than they have been down at the hospital!

As we drove down to the appointment last Friday, I was actually kind of excited to see everybody at the Clinic as we had not been there in five whole weeks!! I started to realize as I drove that we are quickly becoming strangers to the place, in a wonderful kind of way! It's a bit of a weird place to be because the nurses, care managers, nurse practitioners, doctors and child life folks have really become like a second family to us. It's kind of hard not seeing them for such long stretches of time and yet, it's exactly what we want!! We joke a lot with them when we are down there as we leave and say, "hope we don't see you for a long time!"

Max is treated like a celebrity when we are there. As we wait at the check-in desk, one person after another passes by and says "hello" to him and remarks about how great he looks. Once we are in our clinic room, he typically gets lots of extra visitors that stop in to see him. I have come to realize that the team down there needs to see him...they need to see the successes! That's why they are there. We are always thrilled to see our buddies from down there. Every one of them has been important to us along this journey.

I seem to be spending more time down at the hospital now focused on Max's Meals & More and giving back then anything else! Exactly as we had hoped! We had a fabulous Halloween luncheon with some really special moments. You can read all about it on our site at http://www.maxsmeals.org/. Thanks to everybody that donated items for the treat bags. They were a huge hit! We are busy planning now for the Holiday Tea on December 5th and for Christmas Eve brunch. I'm going to be putting some kind of bags together for the families for Christmas Eve again so, if you are interested in contributing to those or helping to put them together, watch the Max's Meals site!

The Vendor Fair to benefit Max's Meals & More that my neighbor, Katie McHugh held last weekend was also a success and a lot of fun! They have raised more than enough money to fund a meal for the floor already and more is to come! I enjoyed purchasing items from most of the vendors too! Thanks to all of the vendors that were there and to those that sent things to support the Fair. My aunt in Cleveland even donated some of her famous tie-dyed socks from her non-profit, No Rulz Art that sold very well too! You can read more about No Rulz on Facebook. It's an awesome venture. Thanks, Annie for your support!

So much has been going on since I last blogged that I almost forgot to write about Halloween here at home! The kids had a ball! Max was an army guy, Alex was a crazy skateboarder dude and Ellee was a princess (shocker). The boys went all out this year for the first time ever. They were done with our neighborhood of about 45 homes in 30 minutes! So, we drove down the road and let them hit another neighborhood for another hour with their buddies. They were exhausted and cold by the time we got home but, proud of their loot and ready to dig in! I think we'll be eating candy for a couple of years, at least! No need to trick or treat for the next couple Halloweens! :) It was wonderful to see them enjoying the fun day so much. If you'll remember, last year Max was not allowed to trick or treat at all. He definitely made up for lost time this year!

The day after Halloween, I took Alex and Ellee to the doctor for their annual checkups, only to find out that they both had strep again! Ellee had some minor symptoms but, Alex had none so, needless to say, I was surprised. I had Max tested after school that day and he was negative initially but then, on Tuesday, he came down with super gooey, red eyes and after a visit to the pediatrician on Wednesday, was diagnosed with a sinus infection and a mild case of strep again as his culture had grown a bit since the test Monday! So, they are all just finishing another round of antibiotics and feel great at the moment. I have come to realize that this is going to be life for us for sometime to come. One little germ battle after another...one immune system building block after another for Max and really Ellee too!

Just this week, Max and Alex got some new hairdos. They have been asking me for mohawks for a while now and I initially fought them about it and won. But, after the arguments, I realized that I didn't feel great about telling them no. I didn't know why I cared so much...I mean, after all, it is their hair, not mine! So, this haircut, I surprised them and told them that they could decide how they wanted their haircut. They both were thrilled and hopped right into the barber's chair to describe the mohawks that they wanted! Thus, we now have two little boys with crazy punk hairdos!! They are really growing on me, however. LOTS of people comment on them when we are out in public and they do look pretty cute, I must admit. They fit the boy's personalities...always ready for anything!

The other recent development that I've had is with my job at GE. They contacted me about two months ago to see if I would be ready to come back to my former position as they felt they really needed to get someone in it. I have been surprised that they have not filled it before now, honestly but, figured that my leave was good timing with the economy, etc. I was somewhat surprised by their call so, I just answered them honestly, telling them where things stand with Max and his health, etc. and that I just cannot be 40 minutes from home yet at this point. I really need to be able to get to him at school within 10 or 15 minutes, for everyone's sake. In addition, I explained that if he were to catch the wrong germ, he may need to be down at the hospital for some time still, even overnight, to get help and therefore, I could not be real reliable still. So, with that honesty, I essentially gave my two weeks. They decided to hire someone else for the role and end my leave of absence. All very understandable after almost two years time! It was a tough day for me. I must admit that I was very, very sad when I learned that I would have an official exit date from the company. I was with GE for 13 years and it was a great place to work. I really enjoyed my jobs there and miss working. But, this is the right thing for our family right now, no doubt. Now that I have had some time to think things through, I actually feel somewhat liberated. I have had a tie to them now for almost 15 years and it's kind of exciting to see what happens now that I don't. Hopefully I will end up back there one day...we shall see what lies ahead.

Last week as we all went up for communion at church on All Saints Day, a woman that we have not seen in a while was behind me and whispered in my ear, "how does it feel to be a part of a miracle?" I responded, "awesome". It is awesome. There really are not words to express it. Sometimes I almost can't believe what has happened in the past 22 months. Everytime I look at Max, I smile. I am so proud of him and really, in awe of him. He is a champ, a survivor, an inspiration. This journey has taught us how to live, how to love, how to be really, really happy and fulfilled. I am beyond grateful for the blessings that we have and for every moment that I have to spend with my family.

More to come soon...

Peace and love,

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