Diagnosis Hope vs Treatment Reality

Someone mentioned to me that their grandchild had been diagnosed with osteo sacoma.  They were obviously upset and the depth of their confusion and pain and fear were very apparent.  It is a very scary thing. Hearing those words sticks with you for the rest of your life.  It is a "Where were you when Kennedy was Shot" question.  (Yes, I am that old.)  The child will be in treatment for 9 months.  The family has arranged to be home for a year because they are teachers and their fellow teachers have given them sick time from a pool.  There is a sister. 

The grandmother is trying to figure out what to do. How could this happen?  Does it matter if the child is 8? This is so rare how can they cure it? Do the doctors know what they are doing?

As I sit here this morning watching the birds gather sustenance from the bird feeder buffet, I just sigh.  Katie Elliot will be buried in a week.  I met her family when they were starting treatment.  Three years later, treatment is over.  She too had Osteo.  She did not make it out alive. 

When you first hear those words, the thing that gives you comfort is the "plan" or the "road map".  There it is, the PLAN.  Yes this is a lousy diagnosis but we have a PLAN.  Something to look at, something to put on a calendar. An end point is sitting there for all to see.  You can plan your live around the PLAN.

I still have some of the calendars and all the Road Maps.  I look a them when I am sorting through things.  I still look and wonder at the amount of hope and optimism contained on those pages.  The PLAN.  

What you soon realize is that the PLAN is kind of a guide.  You know where you want to go and you head West.  Sort of like being on the top of the Continental Divide and heading to the ocean.  There are million ways to get there and the ocean is a vast. But with enough effort and enough perseverance and some luck, you do arrive.

 The journey is not easy. The path is not straight. There are losses of untold magnitude.  Some are secret losses you don't discover for many many years.  It is a journey some have to make more than once.  But it is doable. 

As the family begins on their journey, my first words of advice would be to hang on to all the hope they can.  They will need it as they make their journey and have to face the reality of the bumps on they way.  Second bit, be ready for a wild ride.  Third, remember you are not alone. 

Its the "Word" Thing again.

Child having trouble breathing.

Child still in ICU.

Child with a tumor pressing on the end of the stomach.

Child with Relapsed Lymphoma.

Child with tumor growth.


What do we say?
What do we do?

I have racked my brain for days.  I am not one of those "Just buy a gift card" kind of person.  I know on some level it is the best thing.  Some money, a prayer, an encouraging note, a Coffee Card.  Heck I just found out there are McDonald Cards.  I know.  Write a note, put in a 20. Go on with my business. Easy.  I'm done. I have stepped forward and contributed.  The rest will work itself out. 

I want to give something special. I want to give something meaningful. I want to be of help and to take away some of the burden.  I want it all to go away.  But as many of us in Cancer World have learned over the weeks and months and even decades, there is really nothing that helps.   But darn it, there has to be something.  I hate limitations. 

I received news that Katie Elliot took her last labored breath this morning.  Talk about a "no words" moment.  Words won't make a difference to Katie.  Her family will no doubt find words not comforting, for a while because the pain is so excruciating.

I think the reason we are at a loss for words is because sounds don't adequately do the job.  A death is a time for silence, for deep reflection, for gazing out into space to try and connect with the molecules of the spirit.  It is a time to think about the great things the person did during her lifetime and what we learned from her.  

We all die. Some sooner than others.  The only thing that matters is what we do with the earthly time we have.  How many times do we smile, laugh, change another person's life in a good way?  What really matters isn't the balance of the bank account or how many bedrooms and bathrooms we have.  It is what we have done to effect some one's life. 

Everyday a good deed must be accomplished.  That is the important pile of stuff that needs to taken care of and stored and sorted and increased. 

Today we dedicate good deeds to Katie and her very sad mom Darlis

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.  

Journey Reality

so.... We are creeping up on the 3rd birthday of Pearl Anne.  She has been stepping up and working hard to be a grown-up immune system.  She did need some help and some re-vaccination had to be done.  Some times when you are two, you are so busy with life and saying "NO" that you forget to produce titters when you are given a little bit of a bad virus and are supposed to get to work. 

Anyway last week was a crazy, stressful and very tiring.  I, for one, am out of shape in the going to a million appointments at several hospital institutions in short order.  But we did it.  We have been excused from next year's appointment and are not expected back for the week-long trudge until 2017.  A very good thing.

So I managed to get myself pretty worked up and freaked out over the course of the week.  Mary-E looks great but then she did the first time Leukemia creeped into our lives.  She was in perfect health when I sent her off to college when she relapsed.  I know that with every blood draw, every bruise, every hair that falls, it could be a sign and not a good sign.  

Well this time what you see is what you get.  Thankfully.  

I asked Paul Carpenter (our favorite Aussie Bone Marrow Doctor) when I could stop worrying.  He asked Mary-E what she wanted to hear.  I said I wanted to hear the truth.  His reply to me was  "She is fine for now.  You will always have a reason to worry." 

That was not the answer I wanted.  I wanted him to say we were done. They had fixed her and we were released.  Instead, we have just been transferred from Pediatric Bone Marrow Transplant Service to the Adult. She will be closely followed for the rest of her life.  They are watching and waiting for something to appear, the next thing to be handled.  This journey is just going at different speed. It is not over. 

I, like a million families of children struck by cancer, want it to be over.....  Really Really Really OVER.  It is never over.  It is never ever really over. We don't get to go back to the time before cancer. I know this but there are moments I want to believe it is not the case.  

I think it is sort of like giving birth.  The pain of the actual birth recedes with time and more children are born.  So.... you ask. 24 months until the next big appointment. There will be some small check-ins.  She is essentially done.  But in reality she is not done.  She is done for NOW.  I wanted her to be done done.  I wanted to put away that knot in my stomach. I wanted to not wake at 3 a.m. in the morning with a start.  A deep chill of a horrifying dream. Over, I want it to be over.  

I am working on gathering the strength to go forward and constantly prepare for battle.  Even it is just by taking a few deep breaths.  I need to re-charge somehow.  One step, One moment. One thing at a time. 

Best use of my energy.  Putting away Christmas...... with a label maker as part of the process.  

Year Three Evaluation....

There is a secret Facebook Group known as Momcology.  Lots of sub-pages for the different kinds of Childhood Cancer, age groups, locations etc.  Lots and lots of Mom's.  It is a wonderful support group where things are said that are not said in public.  

We are often so caught up in our own room of Cancer World we don't know much about other rooms.  Sarcoma Rooms,Lymphomas, Wilms, AML, ALL, Brain Tumors.... the list is pretty long.   We all learn from each other.  We learn about the way kids are diagnosed, the treatment and the follow-ups.  We learn that some kids have to have a prosthesis eye and they out grow it. We learn Brain Tumor's are bad.  We learn where cancers spread. We learn more than we ever wanted to know. 

But most of all it is a place for the quiet despair and agony of the moms. Moms with traumatized children, dying children, relapsing children. Children with huge struggles from treatment and the lingering after affects.  Teenagers, tiny babies and young adults.  We watch and learn and do what we can to support each other. 

One thing I have gleaned from months and now years of spending time on Momcology is that everyone has "follow-up" appointments. Most Moms deal with something called Scanziety.  It is a little known disorder not yet recognized by the medical community but it is real and lives in the hearts of these strongest of strong women.   They have to face sending their children through MRI, PET and CT scanners at varying intervals. The doctors are looking for signs of wayward cancer.  As the day approaches, the intensity of the Scanziety increases. The tension and fear and feelings of total despair is ever present.  
I don't want to belittle this fear but this week, I am wishing Meb had such a simple follow-up.  A scan, a result, a conference and then a new plan or a sigh of relief and a new date for the next scan.  

Oh, No Not for us. 

 It is a week long process of multiple tests and exams and evaluations.  A week of it.  Blood draws, close physical evaluations, Pulmonary Function tests, two separate eye exams, Dermatology, Hematology, 
gynecology,  two dental exams, PT, and then Vaccinations.  All through the process everyone is on high alert and holding their breath.  What will the test say? When will it all come back? Can they see anything?  Is something hiding out?

It is the same sort of follow-up anxiety but packaged in another way.

 I have come to believe that we will have bad news.  I am just conditioned for that process.  Today Dr. Balter (first of two eye doctors) came out of the exam room and came in my direction.  My heart stopped.  Dead.  I asked him what was wrong and he laughed.  and then said "I totally understand why you would react with so much anxiety. I was the one that started this process.  But she looks great." (He was the doctor that first discovered something was wrong with her in 2004.)

I know she looks great. I know she feels great.  I know she is almost 3 years out of transplant. She is back in school. She is off 99% of her meds. She may not have to go back for this evaluatoin again for 3 years. But  I also know how close leukemia and secondary cancer's hover.  I can say it all the time that things are fine but I also know that when ever we put her under this many thousand's of dollars of tests, something might rear its scary head.   

It happened before.  

So here I sit.  Day 1 of 5 and wonder and wait and try not to work myself into too much of a tizzy.  But as I fail to keep calm, I am not the only one. I am not the only Mom wondering and wanting to know if everything will be okay.  

Day Two Tomorrow:  Derm, Ophthalmology. 

I can do this. We all can do this.  We can survive a simple "Follow-up".