Monday, August 30, 2010

Day +516: Please Join Max's Mighty Mob!!

It's day +516 for Max and he is off at school, along with little Alex who just got on the bus for Kindergarten a few minutes ago! They are both doing fabulously with school. We could not have asked for it to go smoother so far. They have both looked forward to it and come home with smiles on their faces! There has not been one moment of hesitation or sadness about it! Their whole reaction to school and their smooth transition has made me realize just how difficult this past 18 months has been. They so missed being with their buddies and being at school, especially Max. It was just really difficult to keep a 7/8 year old happy, stuck here at home with minimal interaction. It is a true miracle and a real blessing that they are both able to get on that bus and go to school, just like they are supposed to! Life is good!

I am really writing today to let you all know that we have setup a team for the Cincinnati Walks for Kids event to support Children's Hospital on October 16th, 2010. We are again called Max's Mighty Mob and are hoping to have the largest team at the walk this year!!! Our goal is to have over 100 walkers and to raise more than $11,000 for Dr. Davies and her team's life saving research. You can register to walk or sponsor someone on our team through the following link: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob Max is actually going to be able to be there this year, leading the Mob so, we would LOVE to have a HUGE turnout, just to show him what an inspiring little guy he is and to show the hospital how grateful we are for the miracles they have performed in our lives!!!

Sure hope you can join us on October 16th! If you can't be there in person, please consider sponsoring someone...we can tell you that it is beyond money well spent!!! For those of you that want to join us but don't have a Mighty Mob t-shirt from last year, please email me and I'll order one for you. Just let me know what size you need.

More soon...

Peace and love,

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

Wednesday, August 25, 2010

Day +511: A GIANT Step!

It's day +511 for Max and he took one GIANT step today! He went back to school as a third grader at Wilson Elementary! He did wonderfully - as well as we could have hoped so far. He woke up before 7 am this morning and was dressed and ready to go about 5 minutes later! He was very excited and maintained his excitement all the way onto the bus. To say the least, that really helped Matt and I, especially me!

I had been a bit of an emotional basket-case on Monday and Tuesday with the anticipation of Max's big day so, having him so excited to go to school today really, really helped me. I was able to get through his departure without any tears until the bus was pulling away, which was exactly what I had hoped for. I lost it for a minute or two after he left and my sweet Alex asked why I was crying. I told him that it was mostly because I was just so happy for Max. Of course, I was also crying over the fact that I would now be separated from my Max-Man for 7 1/2 hours a day, without being able to even call and check on him, but I didn't let Alex in on that part. :)

Max was definitely exhausted at the end of the day but, after a good snack and some rest time inside, he was quickly back outside on his bike, ramping away with his buddies in the neighborhood. He continues to amaze all of us. I'm sure as the consecutive days of school wear on, he will wear out more. But, I was happy to see him getting to enjoy the beautiful day here in Cincinnati too.

Another big day tomorrow...Alex starts Kindergarten! The house was already considerably quieter today with Max gone. I'm not sure how I will feel about the lack of noise tomorrow afternoon but, I know that somehow I will get used to it.

I'll leave you with one last memory. As I was tucking Max into bed on Tuesday night, with thoughts of him returning to school today running through my head, I suddenly had a flash back to all of the nights that I tucked him into his same bed here at home, watching over his IV medicines as they went into his bald, swollen, little body through his central line (the IV that was in his chest for 10 months). It made me realize how far this little guy has come in such a short amount of time. Wow! Max is living his second chance at life and we are so eternally grateful. He is a walking miracle...and he is my little third grader.

More soon...

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

Friday, August 20, 2010

Day +506: Busy, Busy, Busy!!!

It's day +506 for Max and we have hit a couple more awesome milestones since I last blogged - this has been the longest I have gone since this journey started without blogging AND we went the longest we have gone throughout the entire journey without going down to the hospital!!!! I apologize for the lack of blogging but, we have just been so busy enjoying life and squeezing the last fun out of summer that I haven't had the time to sit down at the computer much lately! I know you will all be happy about that!

We were down at the hospital last Friday for Max's regularly scheduled monthly check-up and things are good. We had not been down to A5 for 5 weeks...a record since this journey began! Max's engraftment was up a bit to 85% and his blood levels were all great. His ears have really healed up nicely, finally and overall, Dr. Davies thought he looked good. It was a pretty quick in and out visit - only about 3 1/2 hours which is nothing to spend down there! We got a visit from one of our favorite therapists too, Brian the Music Man, which Max really enjoyed. He said he would not have recognized Max without me there since he looks so good these days! It was wonderful to see him and have such an upbeat visit with him.

The last time I wrote, we were about to be featured in a channel 9 news/Hoxworth blood drive story. The piece turned out great and we were all excited to be on tv! The kids loved it! It's such a great feeling to see Max's story being used to motivate people in positive ways. We hope that sharing it led some people to consider donating blood. I still don't have a copy of the story but, as soon as I do, I'll get it out on YouTube so that those of you that missed it can see it.

The boys spent another half day at Xavier basketball camp the first week of August. They had a ball again and got to meet and play with a couple more XU players that they idolize. Ellee and I enjoyed watching them and walking around a bit on Xavier's campus. We are all looking forward to attending XU basketball games TOGETHER this year!

On August 7th, Max, Alex and I spoke at the Soccer Marrowthon here in Cincinnati. The pictures of the kids in the t-shirts are from the Marrowthon. The back of Max's shirt reads, "SURVIVOR" while the back of Ellee's reads, "I SAVED A LIFE". They are awesome! The Marrowthon is held to raise funds and awareness for the Be The Match bone marrow registry. It is a cool event with soccer games going on for 24 hours straight! They asked us to come up and share our story with the crowd to again motivate people - this time to donate their marrow. We spoke for about 5 minutes and received many comments about how touching and inspiring Max's story was. He got a HUGE round of applause as I talked about him being almost 500 days post transplant and returning to school in just a few weeks. I know it made him feel good to be treated like the hero that he is! We later heard from our Be The Match coordinator that the Marrowthon was a huge success. They were able to register a bunch of people and collected lots of funds to keep the non-profit registry operating. We know how much Be The Match helped so many of the friends we met at the hospital so, we are thrilled to be able to help them out.

The next Saturday, August 14th, was Max's day +500...obviously an enormous milestone in our eyes! We spent it celebrating in a couple of wonderful ways. First, my mom, dad and I served a meal at the hospital with Max's Meals. This was the first meal that we did "just because", in other words, we didn't have a special occasion or holiday that we were celebrating. As always, we shared Max's story and progress with several of the families that came in to eat and we can truly say that we saw it brighten many faces. I know that hearing he is at day +500, doing great and returning to school in just a few short weeks is such hope for those folks currently stuck down there in the midst of treatment. You can literally see it in their faces when they hear it.

We were warned right as we arrived to serve the meal that morning that it was a particularly difficult day on the floor so, we were sure to take that into account and be mindful of it while we were there. We later learned that one of the patients had passed away that morning. We found out because his grandmother came in to get a plate, on the encouragement of many of the other parents, who then told us what had occurred that morning. We all cried together as we served the grandmother the food and offerred our condolences. The Hem/Oc/BMT floor at Children's is unfortunately a place where this kind of news is all too common. It is an extremely tough place to be. I am so thrilled that, with the support of so many of you, we have been able to launch Max's Meals and begin to help these families cope. I have grand visions of doing so much more to help them too and we are beginning to step in that direction. As always, I will keep you all posted as Max's Meals grows and further fulfills this mission.

We spent the rest of day +500 and +501 celebrating Max's fabulous progress with our church and expressing our gratitude for his healing. We attended a celebration party at our Pastor's house that evening where he shared Max's story with the group and an amazing blessing before dinner. The next day, Sunday, there was a beautiful prayer shared during each service, in gratitude for Max's progress, followed by cakes which we brought to celebrate with the congregation. On Sunday evening, we decided to go out to the Montgomery Inn Boathouse, one of Cincy's most famous restaurants to celebrate. The kids had never been there and really enjoyed eating delicious ribs and watching boats cruise up and down the Ohio with Gaga, Mama, Papi and Uncle Patrick. It was the perfect weekend spent celebrating an amazing little boy and his awe-inspiring miracle!

This week has been extremely busy for me, preparing for the start of school for both Max and Alex next Wednesday! We have been up to school multiple times to pick up packets, have Alex's kindergarten orientation and meet with their teachers. We headed up again this morning for a big meeting with the principal, health aide, district nurse, counselor and Max's teacher to be sure they were all informed about Max's current status and needs...and to be sure that Mom and Dad feel comfortable that they will be watching out for him while he is away from us! The meeting went well overall and we are comfortable that Max will be well taken care of at school and we will figure things out as time goes on. Of course, I am filled with mixed emotions about this return to school. I am thrilled that Max is well enough to head back and can't wait for him to be a third grader again...and yet, I am a bit terrified! Although it's a hugely positive step, it feels like one of the biggest adjustments that we have had along this journey. Imagining not seeing Max for almost 8 hours at a time is hard to do, not to mention that I cannot believe that Alex is ready to head off for kindergarten!!! I know that the first few days are going to be weird and tough for me...I expect some tears (fair warning for you other parents at the bus stop, ok?!?) But, I also know that with time, this is going to be great for all of us. We are very ready for this next step.

Admist all of that, we have had lots of fun times just enjoying the summer. We took a trip down to ride the rides at an amusement park here in town, Coney Island, on Tuesday with Aunt Monica and cousin Ben. Mommy was a bit sick from all the spinning but, Max, Alex and Ellee had a ball. We have also been to laser tag recently, had sleepovers with the cousins and gone to the movies with Mama and Gaga. Max has continued playing basketball with his team in the summer league and has been the leading scorer in a couple more games! It is so awesome to see him out there, playing his heart out!

Max's return to school next week will be another immensely important milestone for all of us along this journey. So many times along the way, we dreamed of this day coming again...now it is almost here! We have been so blessed! I said to someone recently that I feel like so many positive things are coming out of Max's journey now and people are seeing so many good things happen, despite our hardships. It's a dream come true! Thank you to all of you that continue to follow along with us and support us. We are so lucky to have you and appreciate your continued thoughts and prayers.

More soon...

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