You Know Mom...

I am done with being treated for cancer.  If it comes back again, I am not doing it again.

Yes I do.

Okay.  So what are we doing to do for Alistair?

I don't know yet. Lets think about it.

Okay. 

Where are we going to have pancakes?


We were just standing out side by our new little free library and those words came out of her mouth.  No big talk, not deep discussion.  I told her today about Alistair's failure to go into remission and the  new plan.  We know what that means on many levels.  While we pray and plead and light candles and pray some more and boost our Hope Levels, we know that this is zero hour, dark thirty, back to the wall time. 

I asked her if I did the right thing by telling her and she said yes.  Cancer takes so much away but adds a new dimension to your life.  It makes you cautious to get close to people in your own life boat but the people in the boat are really your best friends.  When one is having trouble and in danger everyone is in danger. 

There are no words right now.  We are going to go have pancakes and drop by the church and light a whole bunch of candles. 

I sometimes hate learning things.

This week-end I learned a fellow BMT kid had relapsed.  I let myself believe relapse could not be possible.  I understood new cancers are a huge probability but after total body radiation and high dose chemotherapy resulting in the total death and destruction of the bone marrow it was over. 

Heeeeeheeee.  I am wrong.  Sometimes it comes back and Doctors write about it and study it.

British Society for Paediatric Palliative Medicine

Approaching decision-making after bone marrow transplant relapse in acute leukamia

Palliative care is not often found at a place like Seattle Children's hospital.  It is sort of like the food.  Lots of lip service an no real commitment.  Palliative care is best understood in Hospice realm.

I have seen and I understand wanting to do one more thing, the magic thing that will make it go away. The magic deeply colored chemo just sitting on a shelf that will most certainly turn it around. I think as parents we just don't want to give up.  We brought these children into the world, we are not going to let anyone or anything take them out without a fight.

This is a hard one.... A hard lesson to learn. 

Hoping.... Something we have to do as Cancer Moms

Definition of hope

noun

[mass noun]

• 1a feeling of expectation and desire for a particular thing to happen: he looked through her belongings in the hope of coming across some information [count noun]: I had high hopes of making the Olympic team
• [count noun] a person or thing that may help or save someone: their only hope is surgery
• grounds for believing that something good may happen: he does see some hope for the future

• 2 archaic a feeling of trust: our private friendship, upon hope and affiance whereof, I presume to be your petitioner
  
  
  
  
  We do it all the time. We do it every day. We pray, we plead, we often live and breath hope. WE have to keep hope close to our hearts because the other side is so so terrifying. 
  
  
  Often as Cancer Mom's we have to ignore the obvious because we can not fall apart all the time.  I have been having conversation with Rebecca's Mom.  Rebecca is so so sick and her mom has been told the battle is over.  Just as she is ready to realize it, some small, tiny improvement will crop up and then she is back to hoping again.  It is such a push pull situation.  
  
  
  The conversation goes like this:
  
  
  How are you?

  Oh, I am fine,

  
  How is Rebecca? We have been sitting here waiting for her to die.
  
  

  

  What are they telling you?  Well her liver has GVHD, she has cirrhosis, the Hepatic Vascular Disease is very bad but her bilirubin is dropping so I think she is going to be okay. She is on a ventilator  she has aspergillus in her lungs.  Her body is covered with petechiae ( little bruises) and she is bleeding internally.  Her kidneys are not working and.......................
  
  Oh, dear.  It all seems so hopeless.  It breaks by heart but in such circumstances hope is the only thing that attaches us to this mortal coil.  Hope is the only thing that keeps Mom's from falling apart at the wrong times.  Hope is all we have at times like these.
  
  I can't really imagine being the mom in the situation.  I have played the scenario through my head a few times.  But like many things in life, it is not something I can understand if it has not happened.  Sort of like all those people who think their life will be a baby will be the same as it was before the arrival.  Until it happens you don't understand... you only have observation and what ever you have gained through books and movies etc, not the same thing the experience.  
  
  Hoping (desire) for a good outcome......
  
    
  
  
  
  
  

  
  

  
  

There has to be a better way....

HIPPA has made everyone very so closed mouthed.  If they even acknowledge there is another patient on the floor, they have to kill you.

It is sort of like being in seventh grade and the mean girls are keeping secrets. 

I am so tired of being blind sighted with finding out someone had died.  Last night it was in a college newspaper. 

I know lots of people, I see lots of people.  We talk and share stories but not always e-mail and Facebook and Caringbridge and blog addresses.  Sometimes we don't know the names or diagnosis.  We don't snoop but we have a story about each of them.  This was Nerf gun guy.  He would be admitted, and often have a very young roommate.  He had an arsenal of weapons.  He would gather the kids and there were endless wars. 

I often was bombarded by soft brightly colored foam.  It added a moment to the floor's frivolity.

Well another bright, caring, loving guy has fallen.   Osteosarcoma is a bad thing.  I have long memories of this disease because as a child I remember my dad's concern for Patrick Kennedy when he had it.  He was only 8 or 9 and so was I.  They took his leg.  There was no other treatment for it.  Dad expressed concern about how it spread.  It loves lungs and other bones.   Nothing much has changed in all those years. 

Nolan is gone.  I think I will give the floor some Nerf guns. 
http://dailyuw.com/archive/2013/01/08/news/former-uw-student-granted-posthumous-engineering-degree

Mario Guzman.......

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.

Day Forty.....

On May 30^th of this year. Ruby Smith, 17 left her body after fighting cancer for 9 months.  She has been gone from her body for 40 days.  I cann’t bring myself to say that she has died.  Her body is dead but she is so alive in so many ways for some many people. 

http://www.youtube.com/watch?v=iaFApfOw0GY  She left some great photo's for us to remember her journey.

We spent some time with her mom this last week-end.  During her visit I moved a small number of leftover beer in a container and dropped all the bottles.  They shattered on the concrete.  Her Katie said she seemed to be surrounded by shattered things.  Bottles, glasses, mirrors.  It was a bit disconcerting for her. 

I said that Ruby was trying to get her attention.  I was not joking. When my Dad died, I did some reading and was struck with the importance of the 40th day. My sister was reporting lots of weird events that made me think he was not really gone.

The 40th day seems to cross cultures. It is steeped in so many cultures. It is believed by the Buddhist that Siddhartha died and 40 days later finally transformed. Jesus ascended into heaven on the 40th day. 40 days and 40 nights, lent, the flood, Moses on the mountain. It is everywhere. Some think that in the ancient world time was calculated on nine 40 day cycles to make a perfect solar year.   It would make sense that after 40 days we would be more ready for our loved ones to move on to their next stage, or place or what ever we believe. 

I think this is Ruby's 40th day.  I know from talking with other’s that when a teenager is coming to grips with their death they are very worried about their moms and their dads.  They understand their death is going to forever shatter the life they have had with their family.  I cann’t understand how Ruby’s parents feel rifht now. I don't really have a clue.  I have only looked into that abyss but never entered.  I know they  are changed, deeply and profoundly.

There is no way to keep that from happening. The life with a child can never be put back exactly as it was before.  It will go back together but not as it had.  Maybe the "shattered" bits and pieces Kate has been seeing are a reminder of how fragile life can be.  A reminder of what happens when we lose the person we love the most to something as awful as cancer.  I know this is not politically correct but mom’s have a different relationship with our children. We grew them.  We felt them move, we felt them kick.  We have a connection with them that is unlike any other connection we ever experience.  Their loss is life transforming.

I have to believe that even though there are shattered pieces around us, we can, with time, see that the pieces can be put back together. No doubt they won't be the same, it won't look the same, but it will be functional and have a different kind of reflection. 

Ruby has been breaking things to let her mom know that she is ready to go but to help her mom find a new direction, a new reflection.  A new way to see the world.