Wednesday, March 31, 2010

Day +364: +365 Eve!!!

It's day +364 for Max...or, the eve of day year post-transplant! Wow! In some senses, it's hard to believe it's been that long but, in another sense, it seems like forever that we've been living this "new life". Max is doing very well. We enjoyed a fabulous weekend celebrating Aunt Sarah and Uncle Ryan's wedding and have been catching up on rest the past few days. The wedding was absolutely beautiful and perfect. The kids all did an outstanding job in the wedding and had a ball celebrating at the reception. I don't think it could have gone any better, in my mind. Sarah & Ryan did a wonderful job planning everything and it made for a great celebration of their union. There are tons of great pictures loaded up to the following site: and a super fun video of a dance the boys did to honor Sarah & Ryan at the following You Tube link: Hope you enjoy them all! We certainly enjoyed celebrating together as a family.

As for tomorrow, we have some more fun planned for the family. I have made a special video of Max's journey the past 15+ months and we have some "365" games planned. I'm sure it will be an emotional and fun celebration for all of us.

We are definitely counting our blessings as we reach day +365 tomorrow with Max. It has been quite a miraculous journey so far and we pray every day that it continues to go as well for him as it has thus far. We know the road ahead may still be bumpy and that things will probably never be as they once were for all of us but, we are grateful for what we have learned on this journey so far and know that it will forever shape and enhance all of our lives.

I'm going to keep things short today - LOTS to do to get ready to celebrate tomorrow! I promise to write again soon and fill you all in on the fun around here. Also, I'm finalizing dates for the bigger parties to celebrate Max's progress this summer with all of you so, be sure to check back soon. We would LOVE to see all of you and have the chance to thank you for all your continued support and love.

More soon...

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

Monday, March 22, 2010

Day +355: All Is Well

It's day +355 for Max and all is well at the Meyer house! I apologize that it's been so long since I've updated again...hopefully you all knew that "no news is good news" around here! Things have actually been going so well for Matt and Max these past few days that we have just been busy enjoying some beautiful Cincinnati spring weather. We spent a good portion of every day from last Thursday until yesterday, outside watching Max and Alex zoom around on their scooters and shoot hoops with their buddies. It felt soooooo good! Things are really getting back to "normal" more and more each day.

Matt's surgery went very well last Tuesday. There were no complications with the gallbladder removal at all and he did well with the anesthesia. His recovery has been great too. He was definitely sore and tired for a few days but really began to perk up last Friday and get around much more easily. He and the boys enjoyed cheering the Xavier Muskies on to victory on Thursday and Sunday and have loved the basketball tournament so far. It was perfect timing for Matt to have to take it easy and take in ALL the games!

Max had another fabulous appointment down at Children's last Friday. Dr. Davies continues to think he is progressing well and even gave him permission to play in a summer basketball league, to which Max once again did the happy dance in the bed! The biggest item that the team stressed to us is the importance of continued safety in the sun, especially this summer and in Florida. This is due to the risk of graft vs. host being triggered by a sun burn. As a result, we need to keep sun block on him whenever he is in the sun, avoid the hours of 10 til 2 this summer and have him wear a hat and sunglasses to protect his face and eyes. He will also need a long sleeve swim shirt with sunblock in it and a hat for swimming, which he can only do in a private pool. We did ask about swimming in the ocean and Dr. Davies was ok with it, as long as Max showered off after getting out. All great news! Max got his usual IV infusion of IVIG and his inhaled pentamidine to protect him from pneumonia and handled it all like a champ. The nurse even gave him a certificate that said "Thanks for being a Rock Star today!" He was very proud.

I discussed the engraftment situation with Dr. Davies also and, in her typical style, she reassured me that I should not worry. She said that it will tend to go up and down and that she is in no hurry, as a result, to wean Max from the Cyclosporine. Her exact words were, "it's buying us time to be sure Ellee wins." In other words, the Cyclosporine is allowing Ellee's marrow to continue to grow and proliferate inside Max's bones so that when all immune suppression is removed, her marrow will take over and be the producer of Max's blood cells and immune system (and not the small bit of Max's marrow that remains).

They had not yet decided by the end of the appointment about Max's future monthly visits and what would be done going forward. They wanted to wait to see the results of some of the blood tests that were drawn before deciding. They also decided to wait another month to draw extra blood for immune system studies again, to see exactly where his own immune system stands at the nearly one-year post transplant mark. So, for now we are planning on heading down again on April 16th for a regular monthly visit and medications. We'll be patient, as usual, to see when that may change in the future. They also mentioned at the end of the appointment that Max will need a few other tests that they typically run at the one year post transplant mark so, we will probably be heading down for those soon too (they mentioned an EKG and some thyroid studies, etc). Overall, his appointment was great again and his progress remains "on track".

With all this good news, you can imagine how we are feeling - elated! We truly feel like we are turning the corner as a family. Matt's issues should be behind him soon and Max is really getting there, more and more all the time. We are beginning to regularly enjoy really fun things in life together again and we cannot express how wonderful that feels. It is really something just to see Max scootering up and down the streets here in the neighborhood with his brother and buddies, just doing what an 8 year old does! Not only do Matt and I find tears welling up in our eyes every now and then, just watching them but, many of our neighbors and family members have told us that they do too. It really has been amazing to see this miracle unfold before our eyes. To think of where we were only a year ago and how far Max has come already - truly inspiring!

On that note, we are planning lots of celebrations near the one-year post transplant mark. We have a date set for the blood and bone marrow drive so, please plan to join us to donate blood or sign up to be a bone marrow donor on Saturday, May 8th. More details to follow soon. We are also planning a special family celebration for the evening of Thursday, April 1st, the actual one year anniversary of Ellee's life saving gift to Max. I am sure that will be a special and fun celebration. We have two other celebrations in the works that we will tell you all about soon. We hope to see lots of you this summer and toast to Max's return to health!

We are all so excited to spend this weekend celebrating Aunt Sarah and Uncle Ryan's marriage. It seems hard to believe that it is already here - it felt so far away for so long and now, it is just 5 days away! We are thrilled to be a part of their special day and look forward to creating many fun memories this weekend. I promise lots of pictures next week! The boys are going to look so handsome in their little suits and Ellee, so beautiful in her little dress. I know it will be a one-of-a kind photo op, as well as a very emotional day for all of us. Such joy to celebrate!

We wanted to share the following link with you all too, one that Max is particularly fond of, due to his passion for the NBA: Just another reminder about how easy it is to make a BIG difference in someone's life! We were beyond blessed to have Ellee as a perfect match for Max but, as you know, we have met so many families that were not as lucky. YOU can be the difference for someone else. Please consider registering today if you haven't already.

Things are definitely turning for the better around the Meyer household and we could not feel more blessed. Thank you for your continued support, love, thoughts and prayers. More soon....

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

Monday, March 15, 2010

Day +349: Sunshine, Surgery & Snuggles

It's day +349 for Max and all is well. Max continues to do well and gain more and more energy everyday. I can tell that he is feeling better and better because he is more and more bored around here! The two definitely go hand in hand...the better he is feeling, the more trouble he tends to get in! Always a good thing, though, to have him feeling more like himself all the time, even if he is more mischieveous.

We head down to the Day Hospital on Friday morning for his regular monthly visit and medication infusions. The last time we were there for our regular visit, we talked about the possibility of March being the last time that Max would have to get the two meds (one IV and the other through a breathing treatment) that he has been getting each month. That would obviously be wonderful as it would mean that Max would not have to get an IV at these monthly visits! They would still want blood samples to check his levels, etc but, not having to have an IV would be fantastic! We'll be sure to update sometime after the visit to let you know if that will be the case going forward for Maxer.

The kids and I have been enjoying every minute of the warmer spring weather we have begun having here in Cincy. The pictures at the top of the post were taken last week when it got up into the 60s for a few days. The boys are up to their old tricks outside - ramping with their buddies Jack and Joey from up the street. It's so great to see them doing this again and enjoying fun with kids their ages! Ellee loved the nice weather too and had a little picnic on her blanket while she watched the boys scootering.

Beyond that, we are gearing up around here for Matt to have his gallbladder removed tomorrow. His surgery will be at 7:30 am tomorrow morning so, he and I will be heading to yet another hospital tomorrow at 6:00 am. If all goes smoothly, which I'm sure it will, we should be home here tomorrow afternoon - it is an outpatient surgery. Matt will be sore and tired for a few days at least and will be off of work for a week. But, we are both glad to be getting rid of the problem in his gut and hope that this surgery will eliminate future GI issues for him. We are holding our breath that things will go smoothly as Matt needs to be healed up enough for his sister Sarah's wedding in just 12 days from now! The doc assured him that he would be so, we are trusting and keeping the faith that he'll be ready.

We had a real bright spot shine into our lives last Friday morning... my sister, Kim, had a baby boy, Carter Douglas! He wasn't expected until this Friday (the 19th) when she had a c-section scheduled but, he was ready last Friday and is a healthy little guy. I got to go down to the hospital on Saturday morning to meet him and visit with my sister and her husband for awhile. It was such a joy to hold a teeny baby again and to just relish in the miracle of life. I enjoyed just snuggling with him, smelling him and watching his precious expressions. I said to Kim at one point that it is just amazing to realize that this little tiny thing is a human! We are thrilled to have the opportunity to enjoy a newborn again with my sister and her family and look forward to seeing him again soon. The kids can't wait to meet Cousin Carter either!

That's it for today...going to keep it short and sweet. I'll post more tomorrow or Wednesday to let you all know how Matt is doing. Thanks for your continued thoughts, prayers, love and support.

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

Wednesday, March 10, 2010

Day +343: Looking Back...Moving Forward

It's day +343 for Maxer and he continues to do well. Our trip to Cleveland was great. We were so happy to be able to be there for Uncle Tom's service. It was beautiful and a fabulous tribute to a wonderful man. He will be sorely missed. His entire family was touched by Max's presence and each one of them told us how much Tom thought of Max and cared about him. We were so happy that we made the trip. We arrived back here on Sunday night exhausted. Max, Alex, Ellee and I haven't been away from home, other than to the hospital, in almost 15 months. I was quite surprised how tired I was from the trip. I used to be able to handle a weekend away like it was nothing. But, I think the months of little to no sleep and all the emotion of everything has built up in me and I just can't handle as much as I used to. I realize how comfortable we have all become with our quiet, simpler life these days. Sometimes I worry more about our transition back to reality than anything!

Max had a bit of a melt down on Saturday after the memorial service for Tom and the family party. He was tired and overwhelmed by everything, I think, and he just needed some down time. So, we headed back to my Aunt Laurie's house and had him rest for awhile and drink a bunch of fluids. Once he calmed down, he was ready to go again and enjoyed visiting with my Aunt and her family and playing with Papi, Mama and Uncle Patrick. It was an eye opening trip, however, and I was very glad we had the chance to get away from home for a weekend too to see that being away from home is ALOT for Max still. We rethought our planned trip to Disney at the end of April and have decided that the only way we are going to make it is if we take it really slowly and build in lots of down time.

The last day or so have been somewhat momentous and emotional for us as yesterday, March 9th, marks one year from the official start of Max's transplant journey. We checked into the Hem/Oc/BMT floor of Children's Hospital one year ago yesterday to begin Max's preparation for the bone marrow transplant from Ellee. One year ago today, Max got his first dose of chemotherapy to rid his body of his old marrow...a painful shot to his thigh. The memories of those days are difficult. We were so scared and full of worried anticipation, not knowing what to expect and what each day would bring for little Max. Looking back on them fills us with mixed emotions. We realize how far Max has come and how grateful we are for his healing...and yet, in an instant, those feelings of fear can come flooding back.

With these memories and emotions in mind, Matt and I and his mom got to do something last night that ended up to be very appropriate and impactful. We were invited to attend a donor event for the Cancer and Blood Diseases Institute at Children's where Dr. Davies and a patient's family spoke about their battles against leukemia. It was highly moving and inspirational. We were in the room with many of the doctors from the Cancer and Blood Diseases Institute that work every day to find better and better ways to battle blood diseases like leukemia and aplastic anemia. Dr. Davies did an incredible job giving an overview of what her research team is working on and the promise that it holds for so many sick children and their families. Then, the Rumping's, a family who's 2 year old daughter, Hannah, battled and beat leukemia through a bone marrow transplant, spoke about their journey. Listening to the Rumpings brought back more tough memories for Matt and I and yet, we left the event feeling extremely inspired and motivated. We cannot do enough to support the amazing institution that Cincinnati Children's Hospital is. There is no way to ever express our gratitude for the loving care that they provided to Max and for the life-saving miracles they performed for him. But, Matt and I are determined to do everything we can to show them how much it meant to us through our unceasing support and assistance. We have already begun to think about how to get Max's Mighty Mob even more gigantic and more financially impactful in 2010! We talked last night about how exciting this year will be with Max leading the Mob! All the doctors, nurses and development staff at Children's are excited to see him up there, marching along with a huge pack of supporters behind him! So, get ready for one heck of a Mob in October!

Upon returning home from this event last night and in my effort to get Easter Brunch lined up with Max's Meals, I have been thinking quite a bit about Max's Meals role in all this. I love that, with the support of many of you, we are able to provide a meal to the inpatient families on A5 on special occasions, just to brighten their tough times a bit. But, I don't want giving to Max's Meals to take away from giving to Children's Hospital. The real solution here is finding ways to prevent these families from ever having to be inpatient at Children's and that is what Dr. Davies and her team are hard at work on. Thus, the more funding for her efforts, the better. However, we know that her solutions will take time and, in the meantime, families are enduring very difficult times and need to know that there are people thinking of them. That's where Max's Meals helps. It's just a little ray of sunshine so that those family's know they are not forgotten and people do care and understand their struggles. What I'm trying to say is, thank you for your support of Max's Meals and I would love for it to continue...just don't do it in lieu of supporting Children's efforts. That is more important.

There is no way to ever thank a group of people for saving your son's life...that's what Dr. Davies and her team have done for our family. All we can do is be grateful to God for the many, many blessings that he has bestowed upon us and work to spread his love by caring for those less fortunate. We believe that one way we can do this is by partnering with Children's and sharing Max's miraculous story of healing, in an effort to inspire others to support this fabulous institution and their many life-saving efforts.

Thank you for your continued love and support. More soon...

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

Wednesday, March 3, 2010

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)