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