Day 220!

Day 220!

Written Apr 18, 2012 7:15pm by Heather Dalik

Today is day 220, post transplant.  I realized today that I have stopped counting the days.  I am counting in months now and sometimes I loose track of that too.  Our clinic visit today was uneventful, which I am thankful for.  Cora's potassium levels continue to be high but stable.  Nancy talked today about the possibility of weaning her off the anti rejection medication before one year.  Typically, kids are on the skunky medication for a year but we will talk about starting to wean her off in late May before her liver suffers damage.  

I got a call from the school nurse today.  "Something is wrong with Andrew's eye", she tells me.  "Oh, are the lower membranes coming out?  That's just allergies."  Captain is suffering so bad right now.  His eyes are constantly swollen.  Last night he decided to go inside, when all his pals were outside playing.  He knows what to do and by the time I got inside, he had changed his clothes, washed his hands and face and was waiting for eye drops.  He came home from school today saying he was cold.  Oh no!  A few minutes later, he was asleep on the playroom floor.  Four hours later, he is awake and running around.  I am going to say a prayer tonight that he isn't getting sick.  

Grace has to write an essay explaining how "girls on the run" has made her fearless.  She suggested that being courageous is the same as being fearless.  It occurred to me that most 8 year old's don't really know what it means to have courage but this one does.  She could write a very powerful essay.  I can't wait to read what she writes (and I promise not to break out my third grade teacher attitude.  I promise to let her write this essay on her own.)  

Jeff came home tonight with glasses, not sunglasses either.  Since we have hit our out of pocket max with the insurance company, we are going to every appointment we have put off.  Today, he went to the eye doctor.  The kids loved watching him do a fashion show of glasses, trying to decide which ones he should get.  It was a super fun way to spend this rainy evening.   

One last thought -  In the last few weeks I have realized, that I continue to write because I hope that someday, my writings will heal someone else.  Healing from trauma like this is a long process and takes much longer than diagnosis, transplant and recovery.  I have said before that my sister is the writer in the family, my cousin the editor.  I did not get the writer's gene.  When my friend suggested doing this journal, I initially refused and then agreed only if she would do the updates.  Funny, how your thinking changes.  When something happens, the first thing I think about is writing about it.  That is a pretty cool change in thinking.  

Please pray for all our friends with cancer.  

Be CORAgeous!

PS.  I have the most exciting thing to write about and I can't yet!!  I have to keep a secret and it is killing me.  I simply cannot wait to share the most incredibly good news.  Ok - maybe I can sleep now that I let out that I have a secret.  Or maybe my friend will call me and tell me I can let out the secret.