Monday, September 27, 2010
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.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Monday, September 13, 2010
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!
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)