Cancer World is hard to understand.

We are here.  We are still your friends. We don't call you back. We can't write a thank-you card.  We certainly can't schedule anything.  We are here.  We know you are there. You have helped us all so so much.  Calls notes, offers to stay with the child. Errands, money, coffee cards, groceries, meals, hugs, open ended offers of help.  Prayers, novenas, more prayers, chains of prayers, the list is endless.  We know you are there while we are in this box, in this tiny space with a very very small part of the population. 

We worry in ways you don't. We fuss about things that you have never heard about. 
We talk a different language.  We have different acronyms and lots of weird stuff in our car and in our purses and in our homes.  Some of us have more than one home and Ronald McDonald means a completely different thing to us than to you.

We are sad about different things.  We look at our children and your children.  They have all had there struggles and challenges.  Ours have a certain flavor. You never had to see our child pull out handfuls and brushfuls of hair.  You never had to tell you lovely daughter she could not go to her first dance with her best friend that came from Chicago to visit because her "counts" were too low.  You never watched your daughter secretly die in bits and pieces as her friends go back to college while she monitors her blood sugar and worries about every surface she touches.  You never had to try and explain to her why her friends don't want to visit or come by or take her somewhere "safe".  You understand how hard it is for them to have a friend that has had cancer not only once but twice.  She does not understand why they are afraid, reluctant.  

But, we are still here.  She is at home. She has only been back in the hospital twice.  She is not like Mario in ICU bleeding from her lungs  while having her life supported by a respirator.  She has never been in the ICU.  I can't imagine what Mario's parents are doing right now. 

Mario, Luis, and Mary-Elizabeth had double cord blood transplants with-in days of each other.  They are 18-20, they all had relapsed ALL, they are Hispanic. They have lovely parents and Luis's grandmother makes killer mole'. We have all spent time together, complaining, crying, laughing and learning how to live in Cancer World for the second time.  It is so worrisome when one of the kids is sick.

 I guess being in Cancer World means there are no boundaries between your personal pain and that of all the parents and kids. 

Can you tell that I spent too much time at the hospital today. I had to vent.  91degrees makes me grumpy. 

This was my fortune cookie yesterday.