Sunday, May 15, 2011

Reach Out to "Iron Man" Rowan, B&B Day 27

Day 27 of Mission Boss Your Heart Memorial Blitz, Focus #4 (Final Focus): Reach Out to Rowan! View his mommy's blog HERE. View his foundation HERE.

Day 27 of Chrissie's 31-day battle, May 15, 2010:  Post 1, Post 2, Post 3, Post 4, Post 5, Post 6 (clot in heart discovered; high risk, hard day)


I know you're going to LOVE today's "Iron Man" story, written by Carrie Windham:

One of Rowan's medical conditions is that all lines of blood cells in his blood are affected at some point.  One week his platelets are low for example, then his clotting factors are extended, then his white count may be low, causing him to be nuetrapenic, and he is almost always anemic.  He goes to the Children's Cancer & Blood Center for labs, iron and IvIg infusions and transfusions routinely.  He has received plasma as well, and gets neupogen infusions twice a week to boost his immune system.  We never know which part of his blood is going to be affected next, so he gets lots of routine labs drawn to monitor it all.  Here he is getting some of his iron infusions.  He gets very pale and lethargic right before these iron infusions are needed, and he is actually the one who usually tells us he needs them.  On these days we spend 6-8 hours there receiving all the medications and  then the infusions through his central iv line in his chest, all at a very slow rate while he is monitored for any reactions. He sits in these cute little recliners, "attached" for hours...and has never ever complained about going, not even once.

One of Rowan's first hematologists aptly named him "Lack of Iron Man" when he was very young.  It was an ironic nickname, because Rowan's favorite movie and action figure toy was "Iron Man", and he wears "Iron Man" t-shirts all the time.  When the second movie "Iron Man 2" was due to come out, Rowan and I made a paper chain to count the days until it came out at the theaters.  Every day he pulled another link off that chain, and was so excited as it got smaller and smaller.  Unfortunately Rowan went back into the hospital, on another emergency trip, septic once again.  He spent several weeks in again, and ended up having repeat complications that kept extending his stay.  He asked his Daddy to bring his paper chain up to the hospital and he did, reluctantly though because we realized he would most likely still be stuck in the hospital when the final day arrived and the movie premiered. We did let Rowan continue to pull the links off there in the hospital though, and he continued to do so with a smile each morning.  Every time a nurse or doctor walked into the hospital room, Rowan blurted out "Hi, only 4 more days til Iron Man 2!" "Only 3 more days til Iron Man 2". and so on, and so on.  When the last day came and he pulled the last link off we were worried how he'd react, but he wasn't upset at all.  He simply smiled from ear to ear and said "Great! Now, as soon as we get outta here, we can go see it!"  What a kid, what a great attitude! He didn't feel sorry for himself that he was having to wait, he was just glad that he could go soon.  We were very impressed with our own little iron man.  Patience can be hard, especially for 3 year olds, but not for Rowan.  Here he is, still in the hospital, wearing his Iron Man gear- the movie already released, him anxiously awaiting his own release.

Here is proof that good things come to those who wait... Evidently, word got out through a friend of a friend, about how badly Rowan wanted to see Iron Man 2, and we heard from the Manager of a local theater.  He arranged for Rowan and 40 of his friends and family members to come see the movie in the VIP private theater, whenever he did in fact get out of the hospital and was well enough to come.  It was such an honor and a gift!  Here are some pictures of Rowan at the theater (about 2 weeks after it originally came out).  He was decked out from head to toe, our little "Iron Man".  The News station came out to interview us and his story aired on the news that evening.  The best part of the day was that nearly a dozen of his favorite nurses and hospital staff were there too, sitting right along side him, wearing their Iron Man shirts too!  Rowan had never gotten to see them on the "outside", nor had they ever seen him any way but laying down in a hospital bed.  It was such an awesome treat for us all! Notice he has on his little g-tube pump backpack with his costume, because he wears that all day for his gi-feeds.  He didn't mind wearing it over his Iron Man costume though.  He just said it was his "Iron Man jet-pack".

(Rowan with Logan, his favorite nurse from the hospital.  He works in the post anesthesia care unit)

(Rowan with more of his favorite nurses.  These ladies work in the surgical unit.)

(Rowan and his big brother, in their Iron Man shirts of course, after the movie.)

So call him "Lack of Iron Man" or call him "The Real Iron Man", but either way, he is our hero.  It may take a lot of iron, blood, neupogen, ivig and plasma to keep him going, but he is a fighter and a hero in our book.  We are constantly amazed by how well he adapts to his health issues and constraints, and how well he fights back and bounces back from hospitalizations and surgeries.  Here are a few more pictures of Rowan climbing Enchanted Rock, both times just a short time after being released from the hospital, both times "hooked up" wearing his little back-pack (or jet-pack:-).  He doesn't walk either, he runs, and climbs with all his might and rejoices when he makes it to the top.  Wish we all could be like him...

Thanks for reading about our Iron Man, our hero, Rowan, from the Windham family

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