Wednesday, November 18, 2009

Day +231: Some Idols

It's day +231 for Max and all remains good around the Meyer homestead. Max continues to progress well through the BMT marathon and we continue to make it through our days of isolation here at home. We are finding ways everyday to get out a tiny bit. Usually we just head to a local park and take Spud for a walk. Recently, I decided that we would try out the playground again, as long as no other kids are there. We had a ball a couple of times last week on the playground at nearby Veterans Park. It was awesome to see Max and Alex chasing each other around, huge smiles on their faces, just loving being normal kids on a playground again! Ellee was something to see too. She has really never had the opportunity to play on a playground before....something I didn't realize until we were there last week. She was too young before Max got sick and really wasn't even walking yet. Since he was diagnosed last January, we have not been to a playground. So, she was in heaven! We must have gone down the slides 500 times the first day! We would reach the bottom together and she would immediately say, "I wanna do it again! Let's do it again!"

Max has begun ramping again with his bike and scooter, as you can see in the picture. As my neighbors can attest, this is a favorite activity for Max so, seeing him back out there flying over that ramp is fantastic!

The article about Skype was a hit with everyone. The reporter did an excellent job of writing it (I still have been unable to find a link for everybody that is out of town.) We are Skyping more and more all the time. We are now up to almost everyday. The only time we aren't doing it right now is on Friday since Max spends every other week down at the hospital still. He is enjoying it and definitely getting to know the kids in his class, as well as his teacher. My hat goes off to her - she has been teaching for 20+ years and had never used Skype before the first time with Max! Now she is finding ways to include him in lessons every day. It's wonderful!

I wanted to include a quick update on Matt too for everybody. He has gone through a couple of different tests and so far the doctor has not been able to determine what is causing his stomach discomfort. At this point, he was told to see a GI specialist if the pain returns. He has been eating very carefully and so far, he hasn't had another issue so, we are in "wait and see mode" for now. We'll keep you posted if anything changes. Thanks for your thoughts and caring words for Matt too!

A cool thing has happened a couple of times lately with Max and I wanted to share it with all of you. Just over a week ago, Matt was telling Max and Alex about the fact that Kareem Abdul-Jabbar (the famous basketball player) was diagnosed with Leukemia. Max knows that Leukemia is very similar to Aplastic Anemia so he immediately said, "Wow, kind of like me." It's amazing to see him light up when he realizes that other people, especially strong, successful athletes, can get really sick too. While he was upset for Kareem, he definitely finds some comfort in knowing that he is not alone in his struggle and that even people that are so tough can also be struck by life-threatening illness. The boys went on to discuss Kareem's situation and Max asked if he was going to need a bone marrow transplant. Matt said that he didn't think he was at this point and Max replied, "Good thing. I don't know how he'd fit in one of those beds!"

This conversation and Max's reaction reminded me of a time a few months ago when the boys learned that one of their idols, Lebron James, was being tested for cancer because of a growth in his cheek. Ultimately, Lebron was cleared but I must have heard Max talk about that situation a hundred times. He told his cousins, his grandparents, his aunts and uncles, the neighborhood kids as they passed on their bikes...everybody. I realize now what an impact that had on him to know that one of his sports idols might be seriously ill like he was.

Finally, just yesterday, Matt's cousin Drew found the following article on a kid at Princeton named Jordan Culbreath: Wow...this really hit home for all of us! To hear that he has been diagnosed with Aplastic Anemia, just like Max and how it has tremendously impacted his life was something for all of us to read about. It's an excellent article. I thought you would all enjoy it. Again, Max's eyes lit up when I told him about Jordan. Yet another idol to add to his list. He and Alex have talked about Jordan all day, even calling each other by his name as they played football with Spud today.

Reading about Jordan is somewhat difficult and upsetting, knowing how being diagnosed with Aplastic Anemia can be devastating but, it was also comforting in some way. Aplastic Anemia is very rare (1 in every 25,000 people in the US each year) which has been something that has made this journey difficult at times. We have felt quite alone many times along the way. It's been hard for people to understand what this disease is and what a BMT entails, etc. Reading about another kid that is struggling through this disease made us realize that we are not alone...other families are going through the same struggles.

As Max continues to progress through the BMT process and get better and better everyday, I am starting to ask myself more and more, "why did this happen?" Not so much for our sake as at this point, it really doesn't matter...but, more for the sake of others. I just often wonder whether it's something in our environment that triggers this disease, just as with cancer and other blood/marrow disorders. I'm beginning to learn more about ways to support research that is focused on finding answers to these types of questions. As I learn more, I'll be sure to pass it on so that you can take some action to support this type of thing as you are interested. One of my main goals with this blog is to "get the word out" about Aplastic Anemia and other devastating diseases that require BMTs. The more folks that know, the more support to help end these tragedies!

As difficult as this journey has been for us, I am absolutely humbled by the experiences that our fellow BMT families and friends are continuing to have. Essentially, nearly all of the families that we met while we were inpatient in the BMT unit are having significant struggles with their children's recoveries. They have been hospitalized post-BMT numerous times, some of them for weeks or even months at a time; they have undergone untold surgical procedures and other tests; they have suffered large setbacks including infections and broken bones from long-term steroid use; and, as I've told you before, some of them have endured the untimely deaths of their children. I continue to follow all of their stories, praying for them daily. It goes without saying that knowing these families and their struggles absolutely makes us appreciate the amazing blessings that have been bestowed upon us throughout this process and that continue to unfold themselves for us on a daily basis. I can't explain why we have been blessed in these ways. I can only be eternally grateful for them and offer my prayers and advocacy for those that are suffering. Thus, I'd like to ask you to include the following children and their families in your prayers: Matthew Akin, Ethan Alfred, Natalie Bradley, Brayton Martin, Preston Snead and Mitch Stone.

I find myself day dreaming about the future quite a bit lately. It is hard to imagine a day when this experience is just a part of our lives, something in the distant past, but that's what we live for every single day. We hope and pray that Max will fully recover and be cured of his disease, going on to live a long and wonderful life. I know that we will need to baby step back to reality, as we are far removed from it at the moment. And, I also know that being removed from reality has had its advantages. As tough as things can be around here on a daily basis, trying to keep everyone happy and entertained while essentially being stuck here at home, I try to take time everyday to realize how precious this time precious every day is. This is the greatest lesson we have learned - live in the moment, appreciating those you love and making sure they know it.

More soon...

Peace and love,

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

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