Thursday, January 17, 2013


Day 48ish.
Sister gave her bone marrow.  Mostly matched but not all the way. 7 months off treatment before relapse.  Trying to get her life back. Trying to be a normal kid.

She has been in ICU for more then a month.  Kidneys, Dialysis,seizures, weird blood pressures, spleen unhappy, sepsis.  Lots of scary things.

I spent some time with her mom when I was in New York. We chat on occasion and I try to answer the questions.  There are a million questions.  When did this happen to Mary-Elizabeth? How did you get over this problem? When did this start to happen for her?  How did you handle this....?  Will she ever get her life back?  Boy if that is not THE question.

It is so hard.  It hard on the kids, hard on the families.  It is just hard.  We all are looking for a way to handle the hardness.  One we we do it is to help other's but it adds a layer of difficulty with every connection.  You don't always want to share what you know and how you know it.  

We were down having Hector the Magnificent draw MEB's blood.  There was a mom and a little girl, 7ish, sitting with her American Girl Doll named Lily. Lily was all garbed up and pasted up ready for her EKG and a blood draw.  The little girl was explaining to Mary-Elizabeth how she was brave and didn't have things done to her that hurt very much any more.  The mom was so happy that they were celebrating 4 years off treatment.  I looked at Mary-E and she looked at me and then returned to testing.

Later I complimented her on how she had not said anything.  We both knew there was no reason in the world to share our story. 

When you are sharing, you always hold back the scary observation.  The bit of wisdom you have garnered along the way.  The words you never want to hear spoken outloud.

Sometimes it is important to just listen, and pray. Today after I heard Rebbecca was having some Liver issues, I talked to the third grade I was teaching.  I explained a bit about Leukemia and touched on Bone Marrow transplants.  I told them about Rebbecca and told them I had promised her mom they would say an extra prayer for her.  I had told Rebecca's mom 3rd graders prayers have great power. 

I think they do.  I think the little ones have such strength and purity of belief.  

We said a prayer for Rebbecca at the end class and Grace said she would mention her tomorrow.  Grace is in charge of prayer this week and she wrote it down.   

Special Powers........

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