Wednesday, December 22, 2010

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)

Saturday, December 4, 2010

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)

Tuesday, November 30, 2010

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)

Friday, November 12, 2010

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)

Tuesday, October 26, 2010

Day +573: Good Stuff!

It’s day +573 for our Max-Man and he continues to do fabulously. He has been battling a cold for the past two weeks or so and we have been on high alert to be sure he is getting through it alright but, so far, so good. He had a nasty cough and a lot of congestion but, he seems to be beating it all on his own!! Yippee!! The interesting thing lately has been that Max and Ellee tend to get sick and Alex does not, or at least not to the extent that Max and Ellee and affected. He has had a tiny bit of a drippy nose and that’s about it. Poor Max and Ellee have both had a rotten cough and tons of snot. Just shows you what an immune system does for you as you grow and it grows along with you. Alex’s immune system garden is in full bloom and knows what to do when a little cold germ comes around. Ellee’s little immune system garden is pumping away in both her body and Max’s and learning how to deal with little cold germs and the like everyday! The miracle continues!

The toughest part for Max about this recent cold has been that he has experienced some skin break-down on his upper lip again. This has happened three or four times now and it is very embarrassing for him. He hates it and asks me constantly when it happens how we can get rid of it. I have talked with the hospital at length about it and they think it may be a bit of graft vs. host disease (GVHD) of the skin that flairs when he is fighting off something. They assure me that we are treating it right and that as long as it is clearing up with our current treatment crèmes, it is alright. For Max, however, the scabs on his lip have been tough to handle at school. I don’t think the kids are saying anything mean. I just think they are asking him why it is happening and he is sensitive about it at this point. I think he doesn’t want to be different in any way anymore from his peers and having to deal with skin issues like that make him different and it’s just tough for him. It’s all part of the adjustment and really, good life lessons in dealing with little things like skin imperfections but, it isn’t easy for Max. Matt and I’s hearts break when he gets upset about it and cries, wanting the skin issues to go away. But, we are ever so grateful that these are the issues that we are facing now. They are so minor in comparison to where we once were with our little boy.

We have had lots and lots and lots of good and fun things going on around here. We have been busy, busy, busy celebrating birthdays as Alex turned 6 on October 13th and Ellee turned 3 this past Sunday, October 24th! Alex had a special little party before afternoon kindergarten on the day of his birthday with three good buddies and Ellee had a fancy princess tea party this past Sunday with four of her little girlfriends. We have also celebrated both Alex and Ellee with our families, of course. So, we have busy birthday’ing!

The walk for Children’s on October 16th was awesome. They had over 8,000 walkers down at Coney Island for the event! It was very inspiring and moving to see so many people motivated to come out and walk for such a great hospital. Max loved every minute of it! He enjoyed walking with all of his buddies that were there and loved riding the rides afterwards and eating the pizza and lunchables for lunch! The weather was perfect and it was just a fantastic day. Our team ended up being right about half of what it was last year with 53 walkers and about $5,000 raised! We were thrilled with that outcome and felt it was a wonderful contribution to CCHMC. Thanks to all of you that walked with us or donated to Max’s Mighty Mob. We plan to do the walk every year so, hopefully you all can join us at one point or another for it. It really is a great day.

In the midst of all of this fun, Max’s Meals…and More has just been exploding! We have had tons of great things going on and really can feel the momentum building behind the organization. We have launched a great new website for the organization at www.maxsmeals.org. Check it out when you get the chance. My brother-in-law, Ben Symon has done a tremendous job pulling it together for us. As you will see when you get there, we have a blog built right into the site as well as an events calendar. I will be updating both of these regularly as well as adding a volunteers page soon to detail opportunities we will have to help in the future so, check in whenever you can if you want to know what is going on with Max’s Meals…and More.

In addition to the website, we have an exciting new partnership to announce. Some of our good friends, Jason and Dena Hipskind, have a non-profit organization called Comfort Food that they started about 4 years ago in Indianapolis, IN after their youngest son, Auggie was treated for a very rare form of cancer. About a year and a half ago, the Hipskinds moved back here to Cincinnati and recently, Dena decided to launch Comfort Food here in Cincy too. Comfort Food's mission is very similar to ours but, the way in which they are fulfilling their mission is quite different. They work with Dream Dinners to hold "prep events" once a month in which volunteers prepare meals which are then flash frozen and distributed to families facing medical crisis through support organizations. In the past she has worked with organizations in Indiana such as The Wellness Community, The Ronald McDonald House and The American Cancer Society's Hope Lodge. Dena recently contacted me to see if Max's Meals...and More would be interested in becoming one of the support organizations that Comfort Food distributed meals through. I saw multiple advantages for us in this relationship - we would get these meals free of charge and would be able to actually take part in the preparation of the meals by volunteering at the Comfort Food prep events. So, I spent time working with the Infection Control department at Children's Hospital to be sure that Dream Dinners food would be acceptable to be served and ultimately got the approval that we needed to make this happen. We will be launching our new partnership with a meal down on A5 soon. If you'd like to learn more about Comfort Food, you can visit their website at http://www.comfortingfamilies.org/.
We are also in discussions with the catering arm of the Freestore, Foodbank (called Cooks Catering) to see if we can work with them to provide some of our meals going forward as well. Cooks Catering is an awesome arm of the Freestore, Foodbank and I think this relationship would be an absolute win-win for everyone involved. If you'd like to learn more about Cooks Catering, visit their site at http://www.cincinnaticookscatering.org/

I had an hour and a half long meeting yesterday with the Business Director for the Cancer and Blood Diseases Institute at CCHMC, the leader of the Social Workers and Child Life folks on A5 and two CCHMC folks from the Department of Development for the hospital. I had asked to meet with these folks so that I could go over the plans that we have been putting in place for Max's Meals...and More and be sure that we had the support of CCHMC moving forward. The meeting was very successful and I am confident that we have CCHMC and the Cancer and Blood Diseases Institute 100% behind us. They loved our mission and all of our goals and were extremely excited about our plans. Overall, it was a very worthwhile, important meeting and I am extremely pleased with the outcome.

The golf outing that Matt's dad, sister, Sarah and friends put together last Saturday was a blast and very successful. I think the outing raised about $1000 for Max's Meals...and More which is fantastic for the first try! I was another beautiful fall day here in Cincy and Max, Alex and Ellee had an absolute ball! The boys got to drive their own golf carts around and loved that, of course. Ellee enjoyed the playground down at Lunken and we all enjoyed the cookout afterwards. We are seriously thinking about doing something like this every year and making it very family oriented. I know the kids are going to be asking when the next Max’s Meals…and More golf outing is!!

We will be serving lunch on A5 this Sunday for Halloween too! The treat bag idea has gone over well also and we have received lots of donations for them. I'm sure they will be a hit with the families. We are assembling them tomorrow night. I’ll be sure to get some pictures of the bags and the lunch onto the Max’s Meals…and More site soon!

Life is good…so good! Incredibly busy and tiring but, so much fun and so exciting! I often still stop myself and marvel at the miracle that is continuing right in front of our eyes. Our little Max is really getting back to being himself and just relishing in every bit of life, thanks to his precious little sister, Ellee. Alex is loving being back to school and hanging with his buddies like 6 year olds should as well. All of us are healing, all of us are moving on and the future for ALL of us is looking brighter and brighter all the time!

Thank you to all of you that continue along on this journey with us. We love it when people tell us that they are still reading the blog and keeping up with the happenings in our lives. One of the greatest gifts to so many of us from this experience is the gift of presence – living in the moment and never taking anything for granted! We hope that by continuing to share our journey with you, you will continue to live life to the fullest, being grateful for your blessings and enjoying every moment you have with those that you love and care for, just as we are!

More soon…

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

Monday, October 11, 2010

Day +559: The Fun Continues!

It's day +559 for Max and life is good! He continues to progress well, feel great and love life! At his last checkup, for those of you that know blood counts, his platelets (which are one of the greatest indicators of the strength of his engraftment with Ellee's marrow) were at 394. For a point of reference, when this journey began on January 12, 2009, Max's platelets were only 6! A normal level is anything above about 150. His other blood levels all remain good as well and he has even gone for six months now without receiving IVIG (IV immunoglobulin)!!! That means, also that since his stay for ear issues back in June, Max has not had an IV now in four months! HUGE progress! He did have to get a flu shot a week and a half ago at his monthly checkup and that was very traumatic for him, unfortunately. Besides that, he is just getting peripheral blood draws once a month and his inhaled pentamidine to protect his lungs while he remains on the cyclosporine. Amazing how far he has come already!

Max's miraculous progress leads me to the first reason that I wanted to update today...the walk for Children's Hospital this Saturday with Max's Mighty Mob! We are currently up to about $3,400 raised and about 40 walkers! While this remains far short of our lofty goals based on last year's turnout, we are proud and happy that Max's Mighty Mob is able to contribute this much to CCHMC. Max is soooooo looking forward to the walk on Saturday. He just asked me this morning before school how many people were walking with us. When I told him he responded, "with me right at the front of the pack!!" We cannot wait to see his smiling, happy, joy-filled face walking through Coney Island with the Mob behind him! I know it is going to be a very special and memorable day, once again, for all of us! Last year we could only dream of this day...dreams really do come true! There is still time to register to join us for the walk or to donate to one of our team members. Just click on this link: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob As we have said before, we know how valuable your donation is...it literally saves lives!

I also wanted to write today to invite you all to help with a fun, new little project that we have decided to try out with Max's Meals...and More (our new official name now)! We are going to be hosting a Halloween Luncheon for the inpatient families of the Cancer and Blood Diseases Institute and have decided that it would be nice to let each of the families take a treat bag back to their child's room to enjoy together. Thus, we are looking for donations of Halloween or Fall related items to stuff these treat bags with. They can be for any age from infant up through adult. Edible donations cannot be homemade but, must be store-bought and individually packaged (candy, cookies, etc are great). You can also donate toys, games or other fun items but just be sure that they do not include any latex. We typically serve 60 - 70 people at the meals but are looking to put together about 50 treat bags. I will likely do this again for our Christmas Eve Brunch if it is successful so, take that into account with regard to how much you might spend. If you would like to donate items for these treat bags, I will have a basket on my front porch beginning this afternoon that you can drop your donations into by Wednesday, October 27th. We will then gather a small group together on Thursday evening before Halloween (Oct. 28th) to put the bags together. If you are interested in helping to assemble the bags, please email or call me and let me know...we'd love to have you! I hope that this will be another small way to show the families stuck in the hospital on a fun day like Halloween that people are thinking of them and hoping to bring just a tiny bit of sunshine into their day.

Life has been very, very busy around the Meyer homestead lately! We are rejoining the "rat race" of "normalcy" with three young kids. The weeks are pretty crazy between the official launch of Max's Meals...and More, homework, housework, Matt traveling, Alex's soccer, Max's first communion classes and my volunteer work down at the hospital. But, we find lots of time for fun too! We recently visited a local pumpkin patch and took a great hayride (thus the pictures in this post...with cousins Ben and Audrey) and Ellee and I went to see the Disney Princesses on Ice last weekend with Matt's mom. We have been spending lots of time with friends and family, enjoying socializing again and reconnecting with so many people that we didn't get to see over our 18 months of isolation!

Max's Meals...and More is really gaining some momentum recently. We are hard at work on a website which should be launching within the next week or so and have our application for official non-profit status in process, hopefully to be approved within the next few months. I have been talking to several other organizations about potential partnerships and have been coordinating everything with the hospital to be sure they are "on-board" and fully behind us. Things are getting pretty exciting and we are beginning to feel that the potential to help inpatient families may be enormous. We have been strong belivers since the beginning of this venture in letting Max's Meals grow organically. We are always looking for "signs" that we are headed in the right direction and ready to shift directions if necessary. So far, things are pointing us forward and we are really feeling elated that we are able to give back and help others in this way. Lots more to come with regard to Max's Meals...and More!!! Just a reminder too - there are two upcoming fundraising events that we are greatly looking forward to: the golf outing on Oct. 23rd and the vendor fair on Nov. 6th. I have attached flyers for both to the email I sent out with this update. If anyone did not get those flyers and is interested in attending, please email me at kmmaemeyer@yahoo.com.

About three months ago, Max and I were asked to participate in a new program that Children's was trying out to tell our story, similarly to NPR's "Tell Me A Story" segment, for those of you that are familiar. We spent some time one day down at the hospital talking while they recorded our conversation. They also had a professional photographer take pictures of Max, Alex, Ellee and I. The following link is the beautiful production that they created for use on their website, etc: http://www.youtube.com/watch?v=gq-tHxGdU58 We are thrilled with how it turned out, especially that they featured the special story about Max at the end of it. Hope you all enjoy it too.

Thanks for continuing to check in on us through our blog and for your continued support, love and prayers. We continue to be eternally grateful for our blessings and enjoy every moment we have together. Hope to see lots of you at the walk this weekend!

More soon...

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

Monday, September 27, 2010

Day +544: Paying It Forward

It's day +544 for Max and things continue to go well for him and for all of us! We had a bit of a test last week as all three of the kids came down with strep throat and Max's affected his skin as well. But, I'm happy to report that, thanks to antibiotics and working immune systems, they have all been feeling pretty good since about Saturday and are back on track with school, etc. again! It was a long week for Mom as I had at least two kids home all day, everyday again but, it brought back some fun memories of many weeks like that in the past 20+ months and we made it through!

Beyond that, we had a couple of very exciting events last week that I wanted to share with everyone. On Tuesday afternoon, I had tickets for the boys and I to go to Ollie's to see Tony Hawk skateboard. We had learned that he was going to be there a few weeks back so, I made sure to get some tickets. Last Monday, my mom called down to Ollie's and spoke with the manager about Max's story and he said that he was going to do what he could to be sure that Max and Alex got to meet Tony! So, we went down to Ollie's early (per his request) and were treated extra special. We got VIP wristbands from the Ollie's folks and got to have about 10 minutes of private time with Mr. Hawk!!! To say that the boys were excited is definitely an understatement. As Max said upon meeting him, "I got to have two of my wishes come true!" He signed their helmets and their skating shoes and talked with them about what they liked to do, etc. It was definitely something to remember!

I haven't updated about Max's Meals in a while but, we have continued serving meals to the inpatient families on A5 and are pursuing our official non-profit designation with the IRS currently. Our last meal was a "Just Because" meal in mid-August and we are planning a Halloween luncheon, a holiday tea (with cookies and desserts, etc) and Christmas Eve brunch now. On Thursday evening last week, we took a very special and exciting step forward with Max's Meals and had our first official Board of Trustees meeting. We have assembled a great group of people that are near and dear to our hearts to help us guide Max's Meals forward and our first meeting was fabulous. We brought everyone up to speed on our passion behind the organization and what we have been doing to date. Then we talked a lot about our mission and our initial goals. We have lots and lots of wonderful and caring ideas to pursue and are so excited about the possibilities to help the patients and families of the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital. We are pulling a website together and some marketing materials and hope to have more communications out about the venture soon. We could not be more thrilled to be moving forward with this non-profit and focusing on paying it forward.

Speaking of Max's Meals...I wanted to let you all know that there are two fundraisers that people have pulled together all on their own coming up soon. We have been so touched by the generosity of these folks and their willingness to do so much to support Max's Meals. We would love for anyone that is interested to attend these events. The first event is a golf outing that some of Matt's dad, Jake's friends have pulled together for Saturday, October 23rd at Reeves Golf Course at Lunken. It is $75 to play golf and have lunch at the event but, you can also just come for the luncheon/grillout if you would like. If you are interested in attending, please email me and I'll get you a copy of the registration form.

The second event is a vendor fair that my sweet neighbor is going to have to benefit Max's Meals on Saturday, November 6th from noon - 4pm. She has seven different vendors lined up to showcase their products and will be collecting a small admission to donate to Max's Meals. She is planning to have a flyer with more details for this event soon so, I will be sure to make it available to all of you.

These two events and our meeting last week with the Board have gotten us very excited about the potential for Max's Meals. We are beyond grateful for the miracle we have witnessed with Max's healing and feel so blessed to be in a position now to be able to give back and help others to cope through such difficult times. Thank you, again to all of you that have supported Max's Meals to date...it is because of you that such positive and wonderful things are happening.

Max's Mighty Mob is continuing to grow as well. We held a spot in the list of top ten fundraising teams for a short time and would love to end up on that list but, are thrilled with the progress that has been made already. We have 32 people registered to walk now and have raised over $2,200!!! We set our goals high at 100 walkers and $11,000 purposefully in hopes of repeating last year and we aren't giving up on that yet!!! Please consider joining us on Saturday, October 16th for the walk or sponsoring one of our walkers. You can sign up to join us or make an online donation at our team's site: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob Thanks for your support of Max's Mighty Mob too!

In my last update, I told you of my struggles to "re-integrate" and I so appreciate all the love and support that I received from so many of you regarding that struggle. I am doing well overall, despite my ups and downs and find myself drawn to focusing on paying it forward. To that end, I had a bit of a rough spot last week as I had a conversation with my HR Manager at GE and finally let go of the position that I had when I left there almost two years ago! Yes, they still had my position waiting for me, even after all this time. GE is a fantastic company to work for and I would love to return to the position that I formerly had, before Max got sick. It was a dream job for me...working part-time on the eco marketing campaign for the Aviation business. But, the reality of my life is that I am still not in a position where I can commit a large portion of my time to something outside of this house. With Matt busy with his job and traveling a lot, I need to be available to run up to school at a moments notice to get Max and do whatever we might need to do each day to keep him well - and that could still mean spending a day or even a few days and nights down at the hospital. I just can't be 40 minutes from home working at GE right now, even a day or two a week. Thankfully, I am still on a leave of absence with the company and hope that in the fairly near future I will be able to return to something like I had before. In the meantime, I'll spend my time enjoying my three little ones and helping families like ours through their journeys at Children's.

Despite this little glich, LIFE IS GOOD! LOTS of GREAT stuff going on...and I didn't even mention our participation in the golf outing for Make A Wish this weekend or all the involvement I've had now down at the hospital as a parent advisor, etc! Not to mention that Max, Alex and Ellee all continue to do fabulously at school and even have been attending Sunday School the last few weeks! Max is even going to take first communion classes this fall and make his first communion at the end of October!!!! WOW!!! Dreams do come true!

As I said earlier, we are beyond grateful for the miracle of Max's healing and for his continued positive progress. We pray for and remember daily our dear friends that have been lost along this journey - Andrew, Ethan, Matthew, Natalie and Troy - and those that continue to fight for their miracles - Brayton, Preston and Tony. Along with our Max, it is these children and their families that have inspired us to launch Max's Meals and who remind us to treasure every moment.

More soon...

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

Monday, September 13, 2010

Day +530: Reassimilating

It's day +530 here at the Meyer homestead and life is good! Max had his monthly check-up last Tuesday morning with Dr. Davies and her team and they were pleased with how he looked and how all his blood counts looked, etc. The best news from the visit was that his engraftment was back up again to 87.4%! It continues to bounce around in the 80's but, I think we are all feeling that it is somewhat stabilizing there. We continue to hope and pray that this is the case. Only time will tell for sure.

Max and Alex are both doing brilliantly back at school. We had one small blip so far - Tuesday of Max's second week, the school called about 10:30 am to say that he was in the Health Aide's office with a tummy ache. Of course, for their sake as much as mine, I dropped everything and headed up there to check him out. I ended up bringing him home here, as he was still complaining that it hurt...and, as suspected, nothing came of it. Thankfully. I was afraid that we might be starting something so, we had a few "heart to heart" discussions that day about being sure we were really sick before we went to the nurses office and came home and things like that. Maxer must have gotten the message because it hasn't happened again so far, thank goodness!

Ellee also started preschool last Friday! She was very excited about going until we were just about there when she announced for the first time, "mommy, I don't want to go to school." She shed a few tears as Alex and I left her but, the teacher's said that they were short lived and she was happy as could be when we picked her up. She will be there each Friday morning for 2 1/2 hours so, it gives Alex and I some "date time" which we are excited about. It's so nice to have one on one time with each child. I am looking forward to having Friday mornings to hang with Alex, my sweet little boy.

Beyond all that, we have been busy having lots of fun too! Matt went on his annual golf trip with his buddies a few weekends ago and the weekend after that, I headed down to Hilton Head with just my family for my cousin's wedding on the beach. It was beautiful and I enjoyed my time away, especially getting to hang out with my sister and brothers and mom and dad without constant interruption from one of our little ones. I was anxious to get home here and really missed my family but, it was a special weekend and I am so glad that I was able to get away for it.

We went to the Reds game this past Friday night and the kids had a ball! The boys are really excited about the Reds and their hopeful pennant race and they love the new pitcher, the Cuban Missle. They were thrilled to be able to attend another game this summer and we all enjoyed a beautiful fall night here in Cincy. We also hit Kings Island this past weekend! We hadn't been all summer so, we took advantage of some discounted tickets through GE and took the kids. We all enjoyed it for awhile although Max was quite disappointed that he is not tall enough yet to ride the big rollercoasters. He was really looking forward to riding the Beast and some of the other coasters but, unfortunately, he is just not there yet. He was very sad and frustrated and bummed out about being so short for really the first time ever. As he cried about it, I told him that I was so proud of him because his small size is never an issue for him. He never lets it phase him and that is something to be proud of. I told him that it was impressive to see him out on that basketball court, playing against kids two or three heads taller than him, not even phased by it! I tried to make him feel better by saying that I was sure next year he will be tall enough and we will ride the heck out of the coasters then. It was tough to see him so disappointed.

I am doing my best to continue our reassimilation back into reality. I could not be more pleased with how well the kids are doing. I wasn't sure what to expect and they have just blown my socks off, as usual. They are all so happy to be back with kids their ages, doing what they are supposed to be doing at 8, 5 and 2! It's absolutely a dream come true to see it happening. At the same time, to my surprise, I am struggling more than I have in a while. I think for the first time, I am feeling much of this journey. I knew that the time would come when I would crumble a little bit and I think it is now. When you are in the heat of a journey like this one, you do what you have to in order to get through it. You hold back your tears, you pull yourself together, you do your best to put on a happy face and make the best of it. It isn't until you have gotten yourself and your loved ones through it that you are able to digest it more, from a distance, and have some moments. There are times these days that I can't figure out what I am feeling or why I am feeling it. I just know that my head is full of thoughts and emotions and sometimes, I just have to let them go...let them out of there...not hold them back any longer!

I know that this is all part of this journey. The other night at our Parent Advisory Group meeting at the hospital, we actually got on the subject of caregiver/family support and a couple of the other parents were saying that the roughest time for them wasn't necessarily when they were in the hospital. It was once the treatments were all over and their children had been given a clean bill of health and were returning to reality that they really struggled. I felt so comforted to know that.

I have been thinking a lot about all this lately, trying to make some sense of it for myself (my analytical mind at work, unfortunately). I know that part of it is that I am feeling things as I remember experiences that I probably didn't fully allow myself to feel before now. I also know that another part of it is that I miss being with my three little ones each day, although I am thankful for my quiet time in the afternoons while Ellee naps. But, I think the other part of it is that my perspective on life is forever changed...somewhat for the better and somewhat for the worse. My mom put it well yesterday when she said that in some ways, our experience has made parts of life more joyful and special and in other ways, unfortunately, it has taken some of the joy out of life.

The best way that I can come up with to describe it is to imagine yourself going on an oversees assignment with your family for 18 months, say to Germany. The place is different; the people are different; the way you spend your time is different; even the language is different. When you have an oversees experience like that, you can be forever changed; your horizons can be broadened; you can see life in a different way than you did before. To a large extent, that is how our last 18 months have been. I am not the same person that I was before this journey and, while it is so good to be getting back to doing things that we did before this all began, it can be tough at times.

I share all of this with all of you because I just think it's important to give you some insight into this part of the journey. While Max is doing incredibly well and that is the most important thing in the world to us, we are continuing to feel the ramifications of this experience. I know that with time, I will "reassimilate" and work through my thoughts and emotions. In the meantime, don't be surprised if I have a sudden teary moment over something you would not ever have imagined someone crying about (I still get tears in my eyes every time Alex climbs on that afternoon Kindergarten bus to go to school)!

On a positive and happy note, we are thrilled to see our progress thus far with regard to Max's Mighty Mob and the walk to support Cincinnati Children's Hospital on October 16th! We would love to have more of you join us or support the hospital financially, if you can! Please visit our team link at http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob. As I said on our team's page, we can never repay the medical team at Children's for giving Max a second chance at life...all we can do is do our best to get one heck of a team out there at the walk each year, raising money for Dr. Davies and her team to continue their life saving research in order to make the next family's bone marrow transplant journey a bit easier!

Thank you for your continued caring support of Max and our entire family!

More soon...

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

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)

Thursday, July 29, 2010

Day +484: Back From A Great Vacation...In The NEWS!!

It's day +484 for Max and we have been back since Saturday from our wonderful week in Hilton Head with the Meyer family. Everything went extremely well for Max and all of us on our visit down there. I have to admit that Matt and I both breathed a sigh of relief as we packed up to head home, realizing that we had made it through another trip without issue for Max! It's so great when things go so well and we are able to get away and really enjoy it, without thinking much about doctors appointments or blood levels, etc. We all enjoyed the beach, the pool, biking, putt-putt, The Salty Dog, Shelter Cove and just hanging out with all our fun family members (there are tons more pictures at the link on the right of the blog). At one point in the vacation, I said to someone, "if people only knew us down here in Hilton Head, they would never know what had transpired with Max over the past 18 months!" The last time we all went was two years ago and, little did we know at that point what lie ahead of us.

Although we had a great time in Hilton Head, avoiding the sun to protect Max's skin from developing any graft vs. host was a bit of a challenge. We ended up rigging up a shady area in the pool with a big tent so that he could swim during the afternoon and spend more time in the pool. We were careful about how much time he spent out on the beach, even with full sunblock, a hat and long sleeves, that sun down there on the beach is just brutal. We did our best to spend no more than 2 hours out there during the peak sun time (from about 10 - 4). As the week went on, it did become apparent to us that the issue of sun protection for Max has quite a dramatic effect on our entire family, particularly on vacations. We just don't vacation to places where you spend a lot of time inside! In fact, I don't think most people do!

We were quite struck by this, as the sun issue has been largely "glossed over" by our doctors. It just made us realize, once again, that there will be long-lived ramifications of Max's journey for all of us and that we need to continue to adjust to our "new normal" by learning our safe limits and getting creative about how we do things. Once more, we did mourn a bit for the old innocence of our lives - when we could just go out on the beach and stay all day, as long as we had some sunblock! But, we aren't going to stay in that place. We are going to find new ways of doing things and explore other options so that we find ways to have just as much fun!

Since we have been home here, we have been busy, once again! We had a very exciting afternoon around here today. Channel 9 news, WCPO here in Cincinnati, visited us here at home this afternoon, along with two representatives from Hoxworth Blood Center. WCPO and Hoxworth are holding a joint blood drive next Wednesday, August 4th at several of the donor centers around town. They wanted to feature a blood recipient and their family to help promote the drive so, they chose Max!! They were here for about an hour today and did interviews with Matt, Max and I and then shot video of the boys shooting hoops and Ellee reading (their favorite afternoon activities). They are going to let me know exactly when the story will air but, they expect it will either be next Tuesday, August 3rd or Wednesday, August 4th during the drive. I'll be sure to let you all know once I know more!

On another exciting note, our dear friends, the Merks, were featured in a story about Give Kids the World (the village where we stayed on our Make A Wish trip to Disney) on the Today Show this morning! You can watch it at the following link: http://today.msnbc.msn.com/id/26184891#38466034. It sure brought tears to my eyes! GKTW is just an amazing place! The more publicity that it can get for it's mission and what it does for so many families, the better! You can see that little Tony and his family enjoyed a fabulous time, just like we did down there. Tony continues to do well so far through his treatment to fight his cancer again. The family is hanging in there and appreciates all your thoughts and prayers.

Reporting good news to all of you lately is becoming a regular thing, I'm happy to say! We are gearing up for the big return to school this fall for Max and for Alex's start of Kindergarten and Ellee's start of Preschool! These are exciting and happy times for all of us. We are so grateful for Max's continued progress and for all of the fun we are having. We are so enjoying life these days.

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

Wednesday, July 14, 2010

Day +469: A Couple of GREAT Days

It's day +469 for our Max-Man and we just wanted to share some good news and some neat things that have happened recently with all of you loyal supporters. Max started playing basketball on Sunday in a summer league with some of his buddies from school. He had asked me about doing this some time ago and we talked with Dr. Davies about it and she said it would be alright so, Aunt Monica helped organize a team and get it setup.

The Redhawks began with a bang as they had two games scheduled the first day. I wasn't sure how Max would do, given that he hasn't had that much physical activity in some time now but, I knew he had surprised and impressed me before with his stamina and I also knew how excited he was about this team. He was amazing! He ran up and down that court as fast as he could and kept up with players literally almost twice his size! If you did not know what he has been through, you would never have guessed! Even more impressive, however, is that in the second game, on a 10 foot hoop with a regulation size ball, Max was the top scorer for the team!!! He sunk two baskets and when your team only scores 10 points total, that makes you the top scorer for the game! :) He was so excited and proud of himself and Matt and I could not have been prouder. It was really something, to say the least. Parents on both teams knew Max and his story and we all had tears in our eyes as we watched him out there, playing his heart out. It was truly a dream come true for Max, Matt and I.

On Monday, Matt, Max and I met with Dr. Davies to have our discussion with her regarding the overall status of things with Max and the road going forward at this point. While the news wasn't great, it was really good and we were all pumped up as we left the meeting. Overall, Max is doing very well right now and the transplant has accomplished the goal that Dr. Davies had for it at this point. However, we are far from done and realize even more that this disease and monitoring Max's health are a part of our life forever now. Here are some highlights from the discussion:
  • Overall, Max is doing great right now. As Dr. Davies put it, “the goal of the transplant was to restore his blood counts to normal levels and they are good and staying there.” Thus, the transplant is accomplishing what we set out to accomplish at this point. His blood counts are essentially normal and he is returning to real-world activities. He has a functioning immune system again!
  • After our talk with Dr. Davies, Matt and I consider Max to be “in remission” from Aplastic Anemia. In this way for Max, it is much like cancer or leukemia. The one challenge that remains is that some of Max’s own t-cells (the strong, infection fighting white cells and the cells that caused his bone marrow failure and Aplastic Anemia in the first place) are still there, thus causing his mixed engraftment (ie chimerism) that you have heard us talk about. Because of this, there is a chance that these t-cells could cause him the same problem again. Dr. Davies considers this to be unlikely at this point, as it usually would happen in the first 3 months post transplant. However, as a result of this mixed engraftment, she is going to keep him on the cyclosporine for some time yet and will be monitoring his blood levels once a month for another year to two years. After that, we will go to once every other month monitoring and then eventually 4 times a year (ie every three months). Unfortunately, this is not ideal. 100% engraftment with Ellee’s marrow would have been better but, she did everything she could to try to achieve that. That being said, Max is fine to have a mixed chimerism, as long as his counts remain good and safe with it. She will be watching how his engraftment level shakes out over the next year or two and if things stabilize and his counts remain good, she will be even less concerned.
  • The guidelines that we have been under regarding contacting them for fever over 100.4 or rash, etc. remain in place with one major exception - she said that we do not need to “serve time” (ie spend the night in the hospital or even go down to the ER on weekends or after hours) at this point!!!! This is HUGE news and makes a TON of difference to Matt and I in what we can all do, etc.
  • Max will return to school as a “normal” third grader in the fall!! She expects him to be able to do everything that the other kids are doing. She just wants us to develop a strong relationship with the school nurse so that she can keep a close eye on Max and so that we can know what is going around the school and react as necessary to keep him safe.

Beyond all that news, we are busy preparing for our upcoming trip to Hilton Head with the Meyer family next week! We are all GREATLY looking forward to it! I have also been hard at work on some activities for Max's Meals and have gotten involved with a family that has a memorial golf outing in honor of their father each year to benefit the Make A Wish Foundation. Meghan Olson was Max's Wish Volunteer Coordinator and, in getting to know her a bit, we realized that her family and their annual outing were making Max's Wish possible. Thus, Matt and I really wanted to "pay it forward" and get involved with the outing. As a result, many of you Cincinnati friends and family members will be receiving invitations to the 7th Annual William S. Olson Memorial Golf Outing & Silent Auction to benefit Make A Wish. The event is in October and we would love to see many of you there!

The discussion that we had with Dr. Davies on Monday was just what Matt and I needed to begin moving forward with our lives at this point. We are thrilled that Max has progressed as well as he has to this point and feel incredibly blessed that he has done so well. Although the future remains uncertain, we have learned that life is never certain. You never know what journeys lie ahead or what challenges await. As always, we continue to live in the moment, counting our blessings and being grateful for every minute we have together.

More soon...

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

Wednesday, July 7, 2010

Day +462: Summer Fun

It's day +462 for Max and he has been doing great! We have been so enjoying life for a while now that I haven't taken the time to update in almost 20 days! We have been busy having fun so, I thought I'd share some of it with all of you.

We enjoyed a great Father's Day together with our families, celebrating all the fabulous dad's we have in the Meyer and Sherwin clans. My mom, dad, Matt's mom and I all went down to the hospital that morning to serve a delicious lunch to all the dad's on A5 from Max's Meals. Matt's cousin, Leah and her friend, Sierra have just opened a new catering business and restaurant so, we had them cater the lunch and they did a fantastic job. It turns out that there is quite a story and connection to A5 for them too that I was totally unaware of when we set up the meal. Sierra's sister was treated at Children's for cancer and unfortunately lost her battle just over a year ago. Sierra has always wanted to provide food to the families on the floor but wasn't sure how to get started. I think the experience was somewhat healing for she and her family. We are definitely planning to work together on more meals in the future.

As always, the lunch was very much appreciated and eaten up! The Child Life worker that has been helping us the past few meals said to me as we were leaving that the meals were so much more than food to the inpatient families. We have really come to see how much hope that we represent to those parents (and even some kids) that are currently stuck on A5, fighting their battles. I think seeing us and hearing Max's miraculous success story, in combination with eating some yummy and nutritous food, does a world of good to lift spirits on the floor...and that's exactly what we are hoping for!

Later that day, our families presented Matt and I with a very special gift in honor of Father's Day and my birthday. They had created a memory quilt for us and filled the squares with all kinds of personal thoughts about Max's BMT journey. It is such an amazing and unique gift. We have all loved looking at it time and time again and reliving many of the moments that we have shared along the way. I can't wait to show it off to everyone that visits! It is a true family treasure!

We have spent the last couple of weeks catching up on fun, again! Max got to spend some time with some good friends from school that he hasn't seen much of in the past 18 months. He and Alex played with their good buddies Jon & Tim one day and with their buddy Cam again. They have really enjoyed just hanging out with friends again and doing things they used to love doing with them. They can be found out in the neighborhood just about every evening, holding a full baseball game on our front lawn. Matt is almost always involved as well, if he is not traveling. It has become a summertime staple and we are all enjoying it immensely!

We also tried out swimming again in our neighbors pool last week. We used ear plugs and washed Max's ears out with a special solution that his ENT recommended after he was finished. So far, so good. He complained of a bit of ear pain last Friday night and we got worried -- but, it passed without issue, thank goodness! Max has totally enjoyed swimming again and Alex and Ellee have been loving it too. Alex is taking some private lessons right now too as he missed out on a critical year of learning last year and, as a result, was a little scared of the water. He is making great progress and has been scooting around on his own in the pool the last few times where he can reach (under my super watchful eye, of course) and enjoying it more and more every time. We are really looking forward to our family vacation with all the Meyer's in Hilton Head in just about 10 days! I'm sure we will all do tons of swimming there!!

We fit a trip to the Reds game in as well last week! The boys loved the game, as usual and learned about "rally-caps" as Joey Votto hit a three-run homer in the bottom of the ninth to tie up the game! It was very exciting. It was Ellee's first trip to a game since we went last July with Make A Wish and she enjoyed it too - mostly the eating part but, she was cheering and dancing as well! It was another wonderful summer-fun night!

Last Friday evening we had our dear friends, the Merks over for a cookout. As you will probably remember, we met the Merks while in the BMT unit with Max as they were there with their 4-year old son Tony, battling meduloblastoma (cancer of the brain and spine). As I told you in my last update, Tony's cancer has returned and they are again engrossed in a battle for his young life. Despite this struggle, we all enjoyed a great time together. It was the first time that we have all been able to be together since we met and the kids really enjoyed each other. They have three other boys, Alex, Ben and Max (crazy coincidence with the names, huh?!?) who are between 16 and 10 and our Max and Alex really thought they were cool. Our boys also loved getting to know Tony who they have heard so much about from Matt and I. Ellee and Tony hit it off as they share a love of books and had a ball together giggling away on the trampoline. It was so nice to just be able to take an evening and enjoy life together with the Merks like that. We are all on the same page, so to say, given our shared experiences. Although Max and Tony's diagnoses are different and their treatment paths have been very different, we have all experienced the same life lessons along our journeys. It's hard to understand this journey without having experienced it yourselves so, it is so wonderful when you have friends that have "been there and done that" too. It's just a bond that you can't find easily otherwise. We feel like the Merks are part of our family and we are breathing heavily with all of them right now as Tony faces his current battle. We pray everyday for all of them and think about them constantly. We hope to spend many more evenings like last Friday with all of them in the future.

As our journey continues and we experience more and more fun along the way, we are constantly reminded of our many, many blessings. There isn't a moment throughout our days that we do not think of the families that we have grown to love and care for that have not been able to experience the miraculous healing that we have seen with Max. The Akins, the Alfreds, the Martins, the Sneads, the Bradleys and the Merks are constantly on our minds. Their children's struggles and their family's tough journeys have taught us how important it is to cherish every moment. No one knows what the future holds - all we can do is make the most of today, enjoying every minute with those that are dear to us and doing our best to share love with everyone we meet. On that note, I came across a quote from Mother Teresa recently that I wanted to share with all of you - it has definitely become my mantra:

Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting.

More soon...

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