What do I say? This is the message I received yesterday: Hi this is margarita, im jut calling to notifiy you that unfortuaelty mario passed today at 3am in the morning. (Margarita is the mother of Luis and her lack of English made it difficult for us to speak but she texts like crazy.)
Damn it, Damn it, Damn it.... Mario was one of Mary-E's transplant buddies. He was a big guy, tall big, always a smile, talked with everyone, kidded with everyone. He was a great guy. Lived in Quincy. Has a great mom, Linda. Margarita, Linda and I lived together for two and half months. We talked, compared notes, spent hours and hours not talking because we were with our kids.
We learned a few weeks ago that Mario was in ICU bleeding from his lungs and on a respirator. It has been a few weeks. Last we heard he was off the respirator but we knew he was still in ICU. I never thought that "off the respirator" was not a good thing.
This is Mary-Elizabeth doing Circuits and not knowing. She now knows. When I told her I was going to the funeral, she was very firm: "I am not!!! This is why we don't talk with each other. We know not to get attached."
They worry about each other from afar. They want to connect but know in Cancer World your friends don't just go away, they die.
The moms are much more in touch with each other. We all hate that the hospital won't give us information about other kids because we know the Moms don't have the energy or ability to do so. We want to help each other and do something and we are often stymied.
We are always looking for information for lots of reasons.
Did we do something wrong?
Should we be worried about something else? What is working for them?
What is he eating?
What is she drinking?
What is different about his identical double cord blood transplant?
Is this our future?
After all of this will we end up in ICU?
Did it matter that.......?
We are always comparing notes and hoping that if it is good, our child is doing better. If it is bad, we try to figure out how are child is not in the same situation. We are like competitive moms on a play ground with our kids.
But in the end, we all fear this the most: The death of our child.
Nothing prepares us. We just feel so helpless. We want the happy cancer story. The one the news always is so willing to tell. We know the truth.
We come into this knowing that only 40% of these children make it through. Knowing and then realizing are two very different things.