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Cast Free!

By Margot | March 25, 2008

Sammy got his casts off yesterday and he was the happiest boy alive. All day he was waiting for his 3pm appointment and had told his teacher and his whole class that he might get his casts off.  I was so hoping he would because I knew he would be crushed if they had to stay on.  I was trying to prepare him for bad news just in case but Dr. Chambers showed us the x-rays and they were beautiful.  I hadn’t realized how bad the previous x-rays were with all of the bones just sort of floating around in there until I looked at the contrast between the January x-rays and yesterday’s nicely fused bones and almost normal growth plates.  Sam is in “air casts” and needs to not run for a while but he can swim.  On the way home in the car he said, “Mom, do you know why we are hitting all green lights? Because I got my casts off today and it’s a lucky day.”   He called Joe on my cell phone to tell him.  2nd graders on the phone together are very funny.  Joe wanted to know exactly what he can and can’t do now and he explained it all to Sam’s class as I dropped him off this morning.  The whole class was so happy for Sam.  Mrs. Gage said it must have been all the good thoughts they were sending his way yesterday.  Sam wanted to call her right after he called Joe. 

I was going to pick up the VMA/HVA numbers from last week while we were at the hospital but we were all so happy, Neil I just figured we’d leave it alone until Wednesday.   The full body scan on Saturday was much more comforting, we had a vistiing tech that works for the Navy who comes in on Saturdays. She pulled up the static scans from Friday and gave us every different view and contrast on both the full body and the static.  His legs looks beautiful in the starker contrasts and we think, we hope, we saw a little bit of a connection between the port spot and the spot on his upper chest which might mean it’s his line.  This is a big guess here and we could be totally wrong and get the report saying it’s disease.  She did a lateral static scan for us  and it is right under the skin, could be bone, could be line.  It’s not visible from the rear so it’s most-likely not the spine. So, we took that news and had a hopeful and happy Easter.

Grandpa helped the Easter bunny put together the annual treasure hunt for the Easter baskets.  The boys woke up very early and found the first egg with a map by their bedside.  They were so excited they came right into our room with big grins on their faces and said to me, “You need to get up right now.”  “We found the first egg.”  They raced from egg to egg after reading the maps and clues.  I marvel every year at the fact that they never even question the Easter Bunny’s artisitic ability ;-).  They were overjoyed when they got to their Easter baskets and dove into the chocolate and toys.  Andy was munching away on his chocolate bunny when he said to me, “The Easter Bunny is really nice to people.”  Charlie could have slept in a little more and was pretty much dazed through the whole hunt but was happy to see the mini-football in his basket and got a big smile and said “fooball.”  He’s talking up a storm now and is quite a parrot. The funniest is when (thanks to Sam and Andy) he calls people “Dude.”  Someone will walk out the door and he’ll say, “Bye Dude.” We all went over to Colleen’s for an awesome Easter brunch and the boys and Arielle played all day and had another easter egg hunt there.

We had the whole crew in for the scan on Saturday. Grandpa came along to help with the little guys. Neil and I were a bit nervous to have anyone else in the room as it’s always just been the two of us but Sam wanted Andrew to watch the movie with him and I came in an out with Charlie and it worked out fine. Actually it was sort of a happy atmosphere vs. the usual dread filled room. Andrew was so sweet to his brother.  He asked him, “Are you scared, Sam?” as he was being lifted up in the air by the table and Sam said, “Nah.”  When they were watching the movie he kept making sure Sammy could see and was careful to not to touch anything.  His best quote was, “Dad why are we taking a picture of his chest? His ankles are broken.”  His kindnes really hit home to me because when we walked into the hallway where we always wait for our MIBG scan (we never wait in the germy germy waiting room) armed with the hotwheels cars we always race along the long smooth benches that run along the wall and the boys were laughing and yelling and wrestling over cars, we saw a woman with a little girl sitting on the bench.  She looked very sad and scared and was holding a Hello Kitty bag between her legs and swinging them methodically back and forth.  I thought she was waiting to be scanned and was going to introduce her to the boys and let her know that Sam was an old pro and that there was nothing to be scared of.  She didn’t reply when I told her the boys names and when I asked the woman if she was waiting to be scanned. Tears ran down the woman’s cheeks and she said “No, her sister, my neice, is being scanned now and they are probably going to declare her brain dead today.  Leukemia has spread to her brain.  We have been here for two months and they told us she might not make it through this scan.  My heart just broke for them.  I gave her a big hug asked if I could do anything for them at the moment and scooted the boys out to the garden to play hide and seek and left Neil and Grandpa there to call me when the tech was ready for us so they could have some privacy.  I can’t get the poor little girl out of my mind waiting for news of her sister.  I don’t even know their names but please think good thoughts for them as I know their family had a tough Easter and has a tough road ahead of them. We just have to stop cancer.

We should some news today or tomorrow with an official scan reading from either Dr. Sholler or Dr. Willert.  As it is, our little boy is riding high with no casts today and very happy.  He can’t wait to go swimming.  Grandpa leaves tomorrow and they will miss him. They’ve been having lots of pillow fights with him and Andy wore him out at the park a few times playing football.  I think he’s going to take a long rest when he gets back to New Mexico.

 Margot

 

 

Topics: Progress Reports | 4 Comments »

4 Responses to “Cast Free!”

  1. Donna Ludwinski Says:
    March 25th, 2008 at 6:24 pm

    Oh THANKS Margot for the rich update. What a life you live. I cannot do your prose justice by any amount of commenting–you are just very very good at helping us walk with you through all of this….very emotional roller coaster ride…

    Praying VERY HARD for excellent news on final scan report ASAP.

    AND SO VERY VERY HAPPY for your sweet boy who has no more casts!!!!

  2. lisa sturt Says:
    March 25th, 2008 at 11:30 pm

    Yah! Freedom from the casts! What a clear perspective it gives us all to understand the joy Sam has over two free ankles…it reminds us to relish all the small things and every moment.

  3. Vickie Buenger Says:
    March 26th, 2008 at 2:32 pm

    I can related EXACTLY to how Sam must have felt over the last weeks, watching from the sideline (real and metaphorical), wanting to be in the game and having to bide his time. I’m also thrilled for the good news of certain improvement in the bone and bone structure! Perhaps even more, I’m in awe of the sweet Andy and Sam interaction. Don’t we all hope for sweetness among brothers (and sisters)?

    VB
    erinbuenger.blogspot.com

  4. Jan Says:
    March 26th, 2008 at 3:54 pm

    thrilled with the good news about the casts. keeping my fingers crossed on the scans. Best, Jan