Wednesday, December 22, 2010
Saturday, December 4, 2010
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....
Peace and love,
Kristi (and Matt, Our Hero Max, Alex, Ellee and Spud)
Tuesday, November 30, 2010
Friday, November 12, 2010
Tuesday, October 26, 2010
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!
Peace and love,
Kristi (and Matt¸Max, Alex, Ellee and Spud)
Monday, October 11, 2010
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 email@example.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!
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Monday, September 27, 2010
Monday, September 13, 2010
Monday, August 30, 2010
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!!!
Wednesday, August 25, 2010
Friday, August 20, 2010
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.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Thursday, July 29, 2010
Wednesday, July 14, 2010
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.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Wednesday, July 7, 2010
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:
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)