Prayer request

Prayer request

Written May 25, 2012 8:46pm by Heather Dalik

We rounded out our four days of family fun with a torture ride home.  I am starting to think we should just put the kids in the car and drive them around for hours on end to get them used to it.  Other than the drive, our trip was wonderful, amazing and very relaxing.  It was great to see the kids explore nature, nearly every second they wanted to be outside.  We searched for bears but only turned up a very cool orange salamander that we can't find a name for.  Cora has spent this week watching me put away things from the trip and constantly talks about the mountain house.  The kids are very excited to go back again. Thank you to Believe in Tomorrow!

This week's clinic visit brought some news that I was expecting but brought on tons of anxiety none the less.  Cora's liver function levels are still high, too high.  The team decided to take her off the anti-rejection medication three months early.  I knew this was a possibility but I am still filled with worry.  Keeping her on it could further damage her liver while taking her off could bring on GVHD.  Once she shows signs of GVHD, there is no going back.  I had to ask the hard questions - 

What do we do if she gets GVHD?  We hope it isn't that bad and treat it with steriods and other meds.

Could her body reject the donor marrow and her own marrow not come back?  yes

Could her body reject the donor marrow and her own marrow come back with Aplastic Anemia?  yes

What do we do then?  We cross that bridge when we come to it.

Nancy could sense my fear and tried to give me the statistics. Cora has all the factors in her favor - age, sibbing match at 100% and blood type match, no gvhd so far.  Still, I can feel that old elephant on my chest coming back.  We won't know for several months as the wean off process takes a month.  

It actually took me several days to do this entry because I am so worried about the outcome of taking her off the medicine.  When Cora was at her sickest, I just wrote.  Maybe, I didn't fully understand what I was writing.  Maybe, I wasn't connected to it.  I looked back in my entries and couldn't find one time when I talked about the possiblity that Cora could die.  Looking back, I can think of several times things could have gone tragically wrong but they didn't - like a cat and his 9 lives. This time, I am filled with worry that we have used up our 9 lives.  So, please continue to pray for Cora over the next few months.  We will handle this like we have handled everything else - with courage and strength.  

Be CORAgeous!