"I go Bye Byes"

Friday, December 2, 2011 9:36 PM, EST

written by Heather Dalik

"I go Bye Byes"

This week has been so uneventful.  Our clinic visits have been quiet and Cora continues to progress.  Today is day 91, post transplant.  December 11 is Day 100, post transplant.  That is a day to celebrate - so they say!  So, what happens on day 100, why all they hype?  Nothing happens, no whistles blow or parade comes down the lane.  Cora isn't magically better with a strong immune system.  Day 100 simply means, she made it to day 100.  An amazing feat to be celebrated!  We will still celebrate the day with an unlimited amount of icecream.

Cora and I had an amazing morning.  In one of my internet searches for information (I think that evening I was looking for a group for Grace and Andrew), I stumbled on the Wellness House in Annapolis.  It is a cancer support house.  I emailed and basically said "Will you help our family?  There isn't anything out there for bone marrow transplant families without cancer."  I talked to Tecce early this week and decided that I would take Cora to the house on Friday, since no one else would be there.  Remember that the ONLY place Cora has been in 4 months, is clinic.  So we got ready this morning as usual, Cora chatted about seeing "Nancy, Malky, Baby (Ava)" on our drive.  When we pulled down the long driveway leading to the house, she was beside herself from her first sight of the horses.  "Oh wow!  Neigh Mommy, Neigh.  Neigh yummies (one was eating), Wow, Neigh Mommy, squeal, Neigh, laugh, Neigh".  Teece entertained us for nearly two hours.  Just like everyone else Cora meets, she was enamoured with Cora and her smile.  Cora was a good girl and kept her mask on until she wanted a snack.  Cora played in the doll house, looked at the horses and did a little playdough (She is completely obsessed with playdough!) 

The best part was when we were driving out the gates, Cora said "That was fun, Mommy".  Need I say,  I cried.  It was Cora's first outing in 4 months.  I was a wreck about the possible germs and exposures but it was fine.  We are going back on Tuesday for a reiki session with "Ace and "An". 

The next best part - We were eating dinner and we always tell about our day.  On her own, Cora started "Ace, I (big smile, proud chest, pat on chest) went bye, bye".  As if to say, I actually went somewhere too!  Then, she told Grace and Andrew about her visit.  Yes, we could only understand every third word but she relayed her visit, no detail left out.  She ended it with "It was fun".  I remember thinking as I was driving home, fun, really, fun?  Sister, you don't even know what fun is! 

Many people have tried to make me feel better about not being able to provide Cora will all the experiences I normally would.  The common message is - she doesn't know what she is missing.  I have been holding onto that but today is proof that she does know there is something more.  Yet, the simplicity of today was "fun".  I long to create more "fun" moments for her.  She was so happy the rest of the day. 

Please pray for our CORAgeous little girl.  I should mention that her anti-rejection medication levels will not stabilize.  Today Jeff drove to the Hopkins pharmacy to get another medication to try.  We need these levels to stabilize right away.  Please pray that this medication works. 

Be CORAgeous!