Transformative Journeys

Itzhak Perlman used two canes to plop into his seat. He took a very long time to reach the stage.  Polio took his mobility but not his genius.  
He sat down and the first violinist handed him a century's old Stradivarius. He alerted the orchestra and they began to play.  A bit of Bach.  If you closed your eyes, you could see the ball room and the big dresses and the smokey candles.  We were transformed for those few minutes to a another world. A world we dream about but really would not want to inhabit.  It was cold and hard and children died of simple colds. Women died in childbirth and only the rich had enough to eat.  Hard hard world. 

I am hoping sometime in the future, people will listen to the music of John Williams and remember a time when children were hooked up to machines and poisoned
to try and cure them of Cancer. They will look back at this time and shake their heads and wonder how baffled we must have been. How hard it must have been for us to put our children in the hands of such barbaric spells and cures in the name of science and more life.  We look at the machines and the labs and endless tests and hope for healing.  This is the best we have "for now".  

When you are in the middle of Cancer World you can not have a breakthrough come fast enough.  It can not come with enough alacrity. The entire process seems to drag on forever.  It is hard to see how far we have come because we are in the middle of it. It is hard to see that progress is being made, at all.  We only see that our children are suffering and we are not able to do anything about it.  

Today is the day Pearl Anne and Ellie Mae's life giving stem cells were infused into Mary-Elizabeth.  It was three years ago.  36 months, 156 weeks, 1093 days, 26,236 hours, 1,564,160 minutes.  In some ways, it has slipped by with lighting speed.  In others, it seems likes time has stopped.  In it's tracks.  

I realize when I let myself look back, I see we have in fact been on a prolonged trek. But like the long walk on crutches to the stage for Itzhak on the polio stricken limbs. There has been progress, there has been triumph. There has been an ability to move forward.  It has not been in vain. 

The Downside of Too Much Information in Cancer World

As everyone can agree.  I am on the computer and writing way too much.  I embraced this blog as a way to put the information about ME out there in 2004.  It all started before diagnosis.  I became very aware that she could listen to me talking on the phone.  I could not stand to tell the story time and time again.   

Remember when we talked on the phone?  

Well in the past ten years many bloggers have joined me.  Lots of parents and patients added their stories to the web.  Then came Caring Bridge.  A blog site dedicated to patients and their families.  Then Facebook exploded and support groups showed up.  

In my case the group is Momcology.  Secret handshake, passwords, have to prove you are one of us, initiation and vocabulary test before you can join.  You know the sort of site.  (Never pass up a chance to support this effort.)

With every good thing, there is a downside.  This explosion of sites and access and ways to interact has intensified the knowledge of how bad Childhood Cancer really is a lot of the time.  We know on some level it the worst of all worlds but HIIPA has made it harder to find out what happened to someone you spent weeks with in the hospital.  If you were in such a state you failed to get a good contact number, people just disappear.  It leaves you in a place where you let yourself believe they survived. 

It is no longer possible to be that naive.  More and more the relapses, life ending infections and complications, the impending deaths of precious lives is part of every day. Parents  put their desperate pleas to the universe in a post along with a small picture of their most valued and irreplaceable child. 

Another pin prick, more blood drips, more sadness pools at  our feet.  I am not suggesting they should not share.  I know the need to say the words and let the power of those fears dissipate if only for a bit.  A chance to reach out and find others in the same dense fog. This is a dark, dank lonely and sad place.  Cancer World is a place of despair and frustration and fear. We are here and we are here together,  our group, our tribe, our fellow travelers. We understand what they are feeling.  We know the steps they take. We know that bottomless fear and despair of lack of solutions.  We know we are dumping poison and radiating our children to as close death as possible in hope of bringing them back.  Hoping they can get back to "NORMAL".  

Some parents are sad, some are angry, some curse God, some plan the destruction of the National Institute of Health. Some raise money by shaving off their hair, some walk, some run, some have auctions and events.  You absolutly have to do something. This kind of fear and despair has to vent out of the pressure cooker that is Childhood Cancer.  I took on Chef Walter at Seattle Children's Hospital for failing to have anything to feed my daughter during her long stay.  (Check out 
www.facebook.com/BetterFoodPleaseAtSeattleChildrensHospital)  

This week I have learned of three relapses and four deaths.  I have read the agony and cries of mothers who are living with the loss of their children as time keeps marching forgetting them. I have learned of families being sent home because there is nothing left to do.  I have discovered, with more frequency, the term "Comfort Chemo". 

So... Where does all this leave me.  I can't fix it. I couldn't even shame Seattle Children's into serving something more than unwashed iceberg lettuce, frozen toasted cheese sandwiches and hot dogs.  

(Photo Stolen from Liz Selleck)

But I guess I can take a lesson from our children.

Don't stop. 
Don't give up. 

 Even when they say there is nothing left to do but Comfort Chemo.  

They Never Ever Tell You Everything.....

You just get used to bad news. 

You are ready for bad news, you have endlessly received bad news, you make lemonade and mustard gas out of the bad news but it is always, always bad. 

It is just bad.  No other way to put it. 

Counts up- Bad.

Counts down-bad

No counts- bad

Liver function up- bad

Liver function down—could be bad

Kidney numbers up  sometimes bad

Radiation = cataracts

Radiation = infertility

Radiation = dead thyroid

Radiation= brain process slow down

Radiation = dead bone marrow- Good.

It just goes on and on,

So imagine how it felt when our new very active, very hyper, very loud endocrinologist bounced up and down when she saw the

Stim test results.

Had she failed….. Life time of prednisone…… life time.

Happy happy happy day.

oH mY gODDDDDD Good News

New food trays at Seattle Children's.  No more of the lovely 1980's food trays. 

They are making in house Mac + Cheese and real pizza.  New patient chef is actually cooking for the kids......

2.5 years.  I'm just happy to know the food is a bit better for the kids.  Glad as heck that Chef Walter has left the building.  He can take his pre-cooked pre-frozen grilled cheese with him. 

When do we stop treating..... When are we done?

I didn't realize that when we were first in Cancer World we were just on the fringes. Mary-Elizabeth had High Risk ALL with never confirmed but treated CNS involvement.  She did the 2.5 years, 12 doses of spinal and cranial radiation.  The whole ball of wax.  

I met someone I had known in a previous life and she was the first child I knew that died from this most heinous disease. But she was really the only one.  As I look back, I know we sort of sailed through Cancer World Part I. 

We wondered about people, we had some connections but not like now.  When Meb relapsed and we started doing serious hospital time and a transplant, we really were in the thick of things  We were introduced to an entire other world. A place of deep darkness and horrible results.  Heart rending darkness.  We had been in and out before, a day, may three or four.  Now we were doing months.   Weeks and sometimes it felt like years.  It had a whole new intensiveness. The difference between John Glenn flying around the world and a moon landing. 

I don't ever remember a discussion in Cancer World I when there was a discussion about being done with treatment because there were no more options. I never heard the words Hospice, Palliative Care or words like End of life care.  Because of my relationship with one of the providers, I knew it happened.  Tracy would call it a "do over". 

This time has been different.  I don't know if it is because we spent time with sickest kids, have reached out more, Facebook, or what but there are lots of kids dying and getting ready to die.   Many children just run out of options. 

Their parents are in such agony.  When you start you are told the odds.  Even when they are not what you want to hear, you know there is a chance. There is a possibility, there is hope, there might be a new discovery.  There might be a "miracle".  There might be..... our world if full of might be's.  Might be a new study. Might try a new drug. Might be......  

In so many cases there are no longer any options.  The cancer wins.  The brave decision is made to stop the treatment.  There will be no "Cure". The cancer wins.  

I have no way to even think about making that decision.  My daughter has been very clear that she is done.  She won't do all of this again. She is a full fledged adult and she is in charge of most things in her life.  She will not submit to treatment.  She lives her life with that in mind.   It is hard to think about but then it is easier than having to make the decision as to what to submit a child to in treatment world.  

We give them poison, we bemoan the fact they cannot have more poison because the counts aren't good. We watch the door close on the radiation chamber and are glad the protocol is going forward. We grind, conceal and give them endless amounts of drugs and potions.  We do anything anyone suggests to save them.  To let their lives continue. To let them return to normal.  Does it ever?


Done, when are we done?  I don't think we ever are done.  Done is an illusion. We just reach the end in different ways. Some return home and try to return to normal

. Some stop all treatment. Some watch a child slip away.  Some bury their child and try to go on with life.  


I don't know even what to say at this juncture. I just know what I can do.  I can try and be as supportive and listen to those at different stages and maybe be a shoulder.  I will try never to pass up an opportunity to do something positive for someone in pain.  I will never forget that we are all done at some point and we need to make this time of value.   

All the Power in the World is often not enough

There is a secret place on Facebook called Momcology.  It has places for parents of children with cancer to exchange ideas and thoughts and ask the really hard questions like "Am I the only person that gained weight during my child's treatment?" "Should I be worried that my child has lots of bruises on her body?"  "My doctors thinks I am nuts but I think there is something wrong.  Should I insist on going to see the doctor?"

Because these groups are growing and becoming more known to the Cancer World Moms, we are learning more an more about each other. Part of it is not good.  Part is very very sad.  Kids that have come to the end of their options.  They are just done.  Or as Tracy used to say, "They are going to have a do-over." We are getting to know the other part of the statistics, the 20% that don't make it. The 60% that fail at transplant..... the 50% that relapse and die.  It is sometimes more than any one person can handle. 

Endless posts of parents in pain.  No options, no other treatments, no answers.  We all have plans for our kids.  First day of school, First Communion, First Prom. First boy/girl friend. First time behind a wheel. Firsts.  Never in our wildest dreams do we have plans to buy a dress of a casket or discuss with a 16 year old what they want to do before they die.   We just don't know how to face the world without them.  

So so many people have to do that, despite the best efforts of the combined knowledge of the scientific and spiritual world.  We (and I say we as the greater part of humanity) lose kids every single day.  Little lives end every day.   What is so scary about Cancer Kids is often when they die, there is a bit of relief in the knowledge they are no longer suffering.  Suffering they do.  These kids are beacons of strength and courage and perseverance.  We use military language to describe them: Trooper, Soldiering on.  They show us everyday how important it is to live for each moment because they are facing their last. 

As we drove across the country we were amazed at the power and forces of nature. Knowing the ravages of time and momentum and dynamism shaping our world even today. 

Simple forces, heat, wind, water, pressure, fire, earthquakes. All engaged to create the things we gaze at in wonder.  

I think we need to be patient.  It took thousands and millions of years for these places to take shape.  Cancer will take a long time to cure and better prevent. 

Still I hate Cancer.

Slightly Different

McDonalds is everywhere.
Gas is really cheap as you drive East. 
Food is really cheap as you drive East.
There are not real veggies in the middle of the country.  Most of the time I thought I was eating in Seattle Children's Hospital Cafeteria.

Here is an example of a Low Fat Healthy Choice:

There are lots of things to buy.  Fudge is ubiquitous.  Good Coffee is not. 

Barns in Illinois are different than in Iowa.  Iowa barns had quilt squares on them.  Illinois had weird barns. 

Trucks drive differently in each state.  Hate Kansas and Ohio and Missouri, they don't have to stay on the right except for passing and they are really trying to get somewhere.  So you don't have any idea when they are going to jump out and cause trouble. 

Back to coffee.  OMG.  Nothing. The entire state of South Dakota has not Starbucks (my least favorite).  I did find that if you go into a McDonalds in Missouri and ask for just shots, nothing else, it is almost drinkable.  That is how far I slipped.  

Dogs in Missouri are better behaved than in Seattle. 

Missouri smells like freshly turned dirt and Kansas smells like

Syringa.

Donuts are everywhere. People eat them and are not ashamed. 

We went on a big adventure but like most of life it was made up of very small things of great wonder.  We took time to observe.  

Still looking for  Moose, a funnel cloud and a White Castle Burger.