Monday, March 22, 2010

Day +355: All Is Well

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

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

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

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

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

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

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

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

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

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

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

1 comment:

  1. When I gave you the gift for Max's Meals, my business college just lost her son after 3 BMT.(that is why I was so emotional) (plus I am Kay's daughter!!!:))
    Her son's passing and Max and Elle's story inspired me to be a Bone Marrow Transplant Donor. I only hope I can give a gift of life like Elle did for Max. I look forward to the day I get the call. Please tell Max he is an inspiration to me!!! LOVE YOU ALL!!


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