Just Give Me the Answer!!!!!

"There are no Answers only Arguments"

Famous words were spoken by Neil Franklin to his Civil Procedure class in about 1983.  One of the OCD CPA's that decided adding a JD to his name would be easy.  He wanted answers, he wanted certainty.  He was in the wrong world.  

Law is about change, pushing the envelope, finding new inroads to old systems.  It is about the creative expanding the boundaries of the old set rules.  Many things we take for granted were taboo and forbidden many many years ago.  Women voting, blacks voting, Asians and Whites marrying in King County, being able to marry anyone you wish, despite apparent gender designations. The law is giant amoeba and we are better for it. 

Medicine is very like law. Always learning, always changing, always developing.  Not that long ago the barber was bleeding patients and they were doing transfusions with goose quills and lamb blood.  Yes, we have come a long way but we still don't have all the answers. 

Childhood Cancer is a huge amorphous amoeba.   Every single person I have ever encountered has a Diagnosis Story.

We noticed _________________
We took the child to the doctor______ times.
We had___________ tests.
WE had ___________ scans.

They did not find it until________ months later. 

Common story.  Horrible stories. Great fear that if they had found it earlier something could have been avoided.  We know that if you catch the cold early the pneumonia won't come.  Wish that was the case with childhood cancers.  

Yes, early detection is good but boy I don't see it makes the treatment shorter or cancer is avoidable if you find it early.  It is sort of like being pregnant.  You are or you are not... 

There are so many times during this process that no answers are readily available.  Very few tests/scans/examinations or other woowoo magic give you the answer.  Most likely it is a process of elimination.  

Meb's sort of went like this.

Swollen Optic Nerves
Not high blood pressure
Not diabetes
Not kidney failure
Not leukemia (first blood draw)
Might not be a brain tumor
Mass sitting on the top sagital sinus
Maybe a brain tumor
Not metastasized bone tumor
Not a brain tumor

Oh, leukemia.  (second blood draw 2 months later in anticipation of biopsy of mass.

For years, yes years, Mary-E has had her blood cultured.  Only once has there been a positive.  They were used to exclude fungus, bacteria, lots of nasty things.  Only after something grows do they investigate further.  It is a long process and there are no answers, no easy answers. It is not TV medicine.  

We all want the easy answer.  Actually we would take any answer.  Even if it is a bad answer because the not knowing the answer is crazy making.  Not knowing makes me go to a dark scary horrible place. I meet many of my other peeps there.  The mom's waiting, wondering and hoping for a good outcome but we know. We know better.  We know it is bad.  
But then we think "It could be worse".  I remember sitting and waiting to see the brain surgeon at Seattle Children's.  We sat near the Hem/Onc desk and I watched the small bald headed children  being checked in. I said a little prayer and thanked God I was not waiting to see "Those" doctors.  Boy was I wrong...  

But we did finally get an answer.  We knew what the problem was and had a plan.  A way forward. It was a good thing.  

Knowing is always better than no knowing.  After you know you feel like you have SOME control over what is going to happen. It is a good thing.  Each and every time there is a levee in the road and you are frustrated and ready to pull out your hair and kill the next person who tells you "no we are out of blue berry muffin, you remind yourself that you know.  

Sometimes knowing has to be enough. 

Lots Out there.

Lots of choices, lots of crazy, lots of pain.  There is a mom who's three year old died. She does not trust she did the best she could.  Best hospital, best questions asked, best efforts to help her child.  She is in so much despair.

There is a mom with a 17 year old that went to his prom and things were going along and his ALL came back just before transplant, with a vengeance and nothing could or did stop it. 

There is a mom who is waiting and watching her child slip a way.  The long slow unwinding of a young life.  Just like birth, death takes awhile.  It is a process.  Sometimes a very surprising long process.  

I have imagined having to say Good by to my daughter.  I have wondered if it would be sooner rather than later.  I was deeply frightened the first time but this last time was not fright but stark terror.

There were times, I was not sure how much more her body could take, or she could take.  
I was at the hospital yesterday and saw a tiny little girl on a bike.  She was working so hard to ride.  So happy to be doing so. She had way too many pumps on her pole to be anywhere close to done.  

I handed off a Wishing Rock bag to the dad, told him he could get a little insertie thing for the heavy pole, said a prayer and walked on.

This sick kid thing seems so surreal.   Stacie is with her daughter Allie (not Yakima Allie). She is holding daughter's hand, rubbing her body with cannabis oil and waiting for the inevitable.  The time when she will take her last labored breath.  The time her spirit will leave behind the cancer ridden, chemo, radiation, surgery ravaged body behind.  She will grieve and rage against the universe and will be surrounded by those that love her and her other children and she will somehow with some super strength, walk out of the hospital and bury her child.  As she lets her grief be known, we will all walk with her and feel the bit of her heart that will never heal. 

I don't remember the child dying part as being part of the bargain.  No one should have to complete the birth to death cycle. No one should ever have to leave the room or the hospital or the hospice again. 

I think about how Mary-E just headed off to see the eye doctor.  10 years ago this week, she went to see him and our journey into Cancer World began.  I am relieved she is able to drive and stay up late and leave the lights on and complain about my cooking.  I love she can do her laundry, is looking for a job and still has a sense of humor.

I am cognizant every single day  of the blessings AND the sadness swirling around me.  Both need to be honored.  

Allie is in the blue jacket.

Landslides and the little pebbles that follow.

Whidbey Island let go a couple of weeks ago.  In the middle of the night for no apparent reason.  Bits and pieces of it continue to slide.  I looked a the before pictures and it is clear this was not the first slide and won't be the last. 

The land below the cliff was covered in trees and well vegetated.  It had been 100 years since the last slide and everyone had forgotten.  Our memory can fade and we don't remember who put the big stone ups at Stonehenge or what happens if one group of people declare another should be wiped out of existence. (I am an old history major.)

But the important thing is memory fades.  On a conscious level at least. We as a group no longer see a saber tooth cat and have a flight or fight reaction.  We see it as novelty and empathize with our fore fathers and mothers.  Simple. But somewhere deep in our souls we carry the fear of the next cat attack.  We have transferred the fear to other things both big and small.  Cars, disease, asteroids hitting earth, choking on Cheerios, germs. 

Cancer Parents have another list of fears.  Scans, blood draws, MRD results.  It has one big word attached to it,  RELAPSE.  It haunts us and with good reason.  As a parent when the first diagnosis happens, we focus on Remission, then cure.  We work on getting our child out of intense treatment and into maintenance.  We hate being in maintenance because the visits and blood test that reassure us of continued remission are few and far between but it is a sign we are headed to cure.

But as parents living in Cancer World there is this niggling fear RELAPSE is living around the corner still.  It is alive and real and very present.  It is that small pebble letting loose from the slide signaling the big slide. 

It is not possible to live any sort of life in fear of horrible things happening all the time.  You have to let your life move forward. It is important to keep making plans for the future.  It is not mentally or emotionally possible to keep watch all the time.  It is necessary to keep the RELAPSE monster at bay.

We are not even close to the edge.  Things are beginning to firm up and it seems we are going to be on solid ground.  I am going to look away from the once crumbling cliff and hope for the best.  When I encounter a mom or dad with a hopeful story about how long it has been since the last dose of treatment, I am not sharing our story.  We never know if the cliff is going to present itself.

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.