Day + 337: Busy, busy, busy

It's day +337 for Max and we have LOTS to blog about! It's been awhile since I have been able to write, largely because we have been busy...mostly good busy. Things have calmed down on the health front, thank goodness! Max has gotten rid of his cough and been feeling great lately. He looks good and has more and more energy all the time. His cheeks even seem to be getting a little bit of a pink glow back in them. He is definitely still more pale than usual but, continuing to make great progress. His engraftment continues to be a bit of a challenge but, nothing that Dr. Davies is too excited about at the moment (her words exactly). It dropped again last week to 83.3%, the lowest it has been since the transplant, and Matt and I were concerned. But, Dr. Davies and her team have reassured us and told us not to worry. They are watching it and have tweaked his cyclosporine dosage, in hopes that it will rebound, and are not overly concerned.

Matt is also feeling much better. Three days after he got out of the hospital he was back at work and he started running in the morning about two days after that. He remains on a strict low fat diet (nothing with more than 3 grams of fat per serving) and is planning to have his gallbladder removed in a few weeks to remove the root of the problem. We are so thankful that his gallbladder is the cause of his problems as that is a relatively easy fix and he should be done with any attacks after that is removed. The path he took to that diagnosis wasn't the easiest, to say the least but, we are just grateful that we know what caused his pain and that his issues will soon be resolved for good.

We have been enjoying more and more fun times around here, getting out just a little bit more, here and there. We felt like we were burned a bit with the RSV that Max picked up so easily, as soon as we began venturing out again but, we know that we have to start returning to normalcy, little by little. I think Matt and I would love to keep Max cocooned up at home as he has been for so long now, just to be safe but, we know that isn't fair to him or any of us and that the time has come to start dipping our toes back in. On that note, we did something last week that we haven't done as a family in over 13 months - we ALL went out to dinner together! We hit one of our favorite Cincinnati restaurants, LaRosa's Pizzeria and had a great time. Several of the pictures above are from that night. I explained things briefly to our waitress after we arrived as she caught me wiping down the table and booth with Clorox wipes (didn't want her to think I was a wacko) and she made things a bit extra special for us. She brought the kids a special dessert after they ate their pizza and they were thrilled. At one point during the evening, I looked across the booth at Max and he just smiled back at me and said, "wow, this is fun!" It sure was!

We have been very busy around here with school work primarily and with preparations for Aunt Sarah's wedding in just 23 days! Max got a bit behind with school from not feeling well with the RSV and then daddy being in the hospital (mommy couldn't help much with homework that week) so, we have been making up for some lost time. We just finished two reports today that he had to do (yes, he is in 2nd grade, believe it or not) on Thomas Edison and George Washington. He is doing a great job with his school work and has gotten himself right back on track with his 2nd grade class. Alex is continuing to enjoy school and is also learning a lot. It's amazing to me how fast my boys are growing up! Ellee too! She loves to sit and read books out loud to Spud or to anyone that will listen and colors like crazy these days. I am, once again, so grateful to have this time with my little ones to witness their daily growth and to have time to enjoy games and extra cuddles with them.

Matt and I got to enjoy some fun times as adults this past weekend as we attended the bachelor and bachelorette parties for Sarah and Ryan. The wedding is fast approaching and the whole family is so excited. We are looking forward to a really fun, memorable weekend, celebrating Sarah and Ryan's union. All three of the kids, as well as all of their cousins on Matt's side, are in the wedding, as are Matt and I. It is going to be an event to remember - lots of dancing and fun for all!

Despite all this positive, good news, the last few weeks have brought their share of sadness too. My Uncle Tom Bauman, my mom's brother, passed away on Monday from cancer. He had been battling it for the last few years and was doing an amazing job. Unfortunately, we had not been able to get up to Cleveland to see him in over a year due to Max's illness but, everytime we did see him, he was upbeat and happy - cracking jokes like crazy, in his typical style. He was an absolute inspiration for Matt, Max and I throughout Max's ordeal. Matt and I have become very big believers in Lance Armstrong's "Live Strong" motto and foundation and what it stands for. To us, Uncle Tom was the epitome of this philosophy. Cancer didn't have him - he had cancer. He didn't complain about it or let it control his life. He lived with it and made the best of every single day. He knew for quite some time that his cancer was terminal but, you would NEVER have known that to interact with him. He went about his life with a smile on his face and an optimistic attitude and everyone around him felt it. We are very, very saddened by his passing and only wish we had the opportunity to all visit with him one more time before he was gone. His wife, my Aunt Renee and I, have really forged a bond as a result of our shared care-giver experiences. We know what each other have endured - what it's like to love someone that is so sick. She has been a huge support for me throughout Max's journey and I want to return the favor to her now, at this tough time in her life. Thus, we are all heading up to Cleveland tomorrow to attend the service for Tom on Saturday. I talked with Max's medical team at Children's and they approved the trip. Renee and I have exchanged emails about it and we both know that it will be a real ray of hope for all of our extended family to see Max there. We also know that Tom will see Max there and know how much we cared for him.

In addition to this saddness, we learned last week that another one of the children who's family we came to know last year while Max was inpatient at Children's, also passed away. I saw his mom just before Christmas and he was doing well, they were even planning to head back home to the Toledo area shortly after that. We were surprised and very saddened to hear of his passing. It was yet another reminder of just how blessed we have been through this process. Max has done beyond well. As one of the nurses put it at his last visit to the hospital, "your son has just breezed through this process, you know that right?" To her comment, I replied, "oh, yes, we know. And it's still been incredibly difficult. I can't imagine what it is like for the families whose kids struggle, or even worse, don't make it through at all." Here are some sobering statistics for you, from our very own experience with the BMT world. Of the 8 families that we met while inpatient at Children's with kids going through bone marrow transplant, 5 did not make it through at all, 3 are STILL in the hospital (since we were there last April, one with their second child going through BMT) and the other one is still here in Cincinnati, waiting to finally get to return home. It is an extremely difficult process to endure.

Thus, my passion has been renewed, once again, for my mission with Max's Meals and my desire to pay back Children's for the miracle we have witnessed with Max. I firmly believe that we were brought through this process so well, with so many blessings, for a reason. I believe that God wanted to open our eyes to the incredible suffering that goes on down there at Children's on the fifth floor of A5 for a reason. I believe that I have been called to do something about it. So, I have been working hard to do as much as I can to continually help the families down on A5. I am doing a lot with Max's Meals and I am beginning to see that there is a lot of potential. Currently, we are working on lining up a caterer for Easter brunch and I am getting lots of great response from the caterers here in town. At the same time, I am starting to explore getting an official non-profit designation for Max's Meals and registering it as a non-profit business with the state of Ohio. That way, I can go after grant money and really begin to do more. In addition to Max's Meals, I am getting involved with a Parent Advisory Board for the Cancer and Blood Diseases Institute at Children's. It is a newly formed group, looking for advice from parents that have gone through experiences like we have so that they can improve things for the patients and their families even more.

On top of this, we are fast approaching the one year anniversary of Max's transplant and we are hoping to celebrate it in a number of different ways. Monica (Matt's sister) and I are working on a blood and bone marrow drive to be held in April in commemoration of Max & Ellee's anniversary. More to come soon on this as we have a date, location, etc. finalized - but, please start considering giving the gift of a blood donation or registering for the national bone marrow donor registry if you haven't already. I am also planning a special celebration for Max with his cousins and some of his friends. We promised long ago that we would rent out Ollie's, his favorite indoor skatepark, and take he and his cousins/friends down there in a Hummer limo to celebrate when he was able to get out like that. At this point, it is looking like we will be able to do that in May. I am going to double check with his doctor the next time we see her and then get it lined up. Of course, Max can't wait! Oh the things you promise when your child is facing chemo and a long hospital stay, not to mention months of isolation at home! :) We are also hoping to hold a larger celebration some time this spring or summer. We would love to get together with all of you to thank you for all your support and love and to enjoy some fun in celebration of Max's return to health! More to come on the big party soon too!

So, like I said, things are busy - but mostly good busy. We'll keep you posted as things progress, as always. Thank you for your continued support, love and prayers.

Peace and love,

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