Finally Getting Some Traction

And then the phone rang.  A voice asked if I was interested in doing an investigation in a Puget Sound School District.  And just like that, I was back in the land of  the grown ups. 

I sit here this evening with papers in files, notes to be reviewed, more questions to ask and soon there will be a report to write.  

Feels good.  While I have learned to adjust to almost anything, I really miss working.  It is good for the soul.  Hopefully there will be more of this work where it came from because if this becomes a real "gig" I might be able to fill in the Daruma that has been sitting in the window for a long long time.  

This feels so so good.  

So here is how this all works. 

Bodhidharma was a Buddhist monk who lived during the 5th/6th century AD. He is traditionally credited as the transmitter of Ch'an (Zen) to China. Little contemporary biographical information on Bodhidharma is extant, and subsequent accounts became layered with legend.^[1] According to one tradition, Bodhidharma gained a reputation for, among other things, his practice of wall-gazing. Legend claims that he sat facing a wall in meditation for a period of nine years without moving, which caused his legs and arms to fall off from atrophy.^[2] Another popular legend is that after falling asleep during his nine-year meditation he became angry with himself and cut off his eyelids to avoid ever falling asleep again.

So As I have been told, you make a wish or set a goal and color in an eye.  When the wish or goal is met you color in the other.   

I am so so close. 

Thanking God She had Acute Lymphoblastic Leukemia and not __________

Yes, it is one of those days.  The kind of cancer your child has/had does not make a difference.  There is fear and trepidation and panic and deep depression no matter what the diagnosis.  The test is that all of these kids qualify for a Make-A-Wish because of their condition.  They all have life threatening illness.  Those of us in Cancer World have seen even the "best" treatment fail, and fail miserably.   

Time and time again the kids die, relapse, fail to achieve remission, develop a secondary cancer, life long struggles with thyroid, skin issues, GVHD, weird hair stuff, infertility.

We all know the number of kids that  are diagnosed do better now but it is still a heart break with every single child that leaves the corporeal world to join the universe.  Heart breaking when a tumor comes back, when a close chemo buddy dies. 

Despite the loss, the sadness, the failure to cure, the great unknown about the future, we have to continue.  We have to continue to support each other, try to make a difference and hope the postings about death and relapse become less a part of our lives.  

Today we honor those that have died since of May 2014 of Osteo Sarcoma. The boys are gone. Katie, the tall lovely girl in the middle is gone. All gone too soon.  All shared the same cursed disease, all were loved and honored and valued and cherished.  All are missed.  Nicole, the lovely child on the left remains cancer free.  Or as they say in Osteo world.  NED, no evidence of disease.  

This is the best those families can hope for at any given moment.  NED.  But the docs are always on guard about finding the disease again.  Sort of like Dr. Carpenter, he told me I could relax for NOW.  I wanted it to be forever. 

So today, March 27, 2015  we are thankful and grateful for NOW.  Because NOW is all we can count on.  NOW is a good place to be. 

Perception and Reality

She looks Great!

Who would ever know she had Leukemia.

Boy treatment must have been very successful.

How could you ever guess she has had 349 doses of chemo therapy?

We hear this all the time.  When the kids really look green and have no hair and have a tube sticking out of their noses, people know. 

It is the times when the hair comes back, maintenance begins and the less obvious effects are there but only if you know where and what to look for.  (never end a sentence with a preposition.)  If you are in the know, you can tell.  The small 1/8th scar at the neck, the back of the arm stretch marks only from massive prednison.  Chipmunk cheeks. The constant use of purell

.  The fear of salad bars. The squirming at the sight of the stagnant pool of water holding the ice cream scoops between servings.  

So much is not visible.  They have color in their cheeks, cute curly hair, a smile that does not quit. 
There is a curious inner strength and wise visage.  It masks the loss of brain matter, fertility, thyroid function, heart health, lung capacity,  hip, knee, and shoulder joints.  No one sees the places where future cancer lurks waiting to show itself.   

Everything is not what they seem.

Many friends and acquaintances knew we were spending time at the NCAA tournament.  Gonzaga played North Dakota State.  Gonzaga really struggled.  North Dakota State was tall, and powerful and could shoot like crazy.  Not only did they shoot, they sunk so many balls without touching the rim, I worried.   It was sort of crazy.  They pushed and went ahead on more than one occasion.  Gonzaga did not pull away, ever, for very far.  I was not willing to believe they were going to win until the the last 36 seconds.  

I talked with a friend this morning and I said it was hard game to watch.  "But they won by 10 points."

It made me think.  Many of our Cancer Kids "look great".  Have hair.  Have color in their cheeks. Are smiling.  Are back in school. College.  Playing sports, in the orchestra.   But.... it has come at a cost.  A huge emotion, physical and future cost.  Costs we can't even calculate as we spend time sitting in the waiting room for the next blood draw, the next LP, the next scan.  

It is always a good idea to step back, and maybe ask a follow up question. Take a moment to not assume everything is as it seems.  

Here is hoping to continued good health AND a better game tomorrow night. 

Dear Mary-Elizabeth

I'm  not sure how much you know about what I have been through.  I think you guess a lot but have tried to keep focused on your journey.  As you know WE had cancer.  WE had a relapse. WE had a Double Cord Blood Transplant.  But you have returned to your life and I am sort of waiting for mine to be found again. 

 I think I have been looking in all the wrong places.  It is such a weird thing to loose your way when  you are not ready to be done with your working life.  It just seems unreal. I am not ready to step back from the world just yet.  I still feel 18 and have lots to offer.  I am just wiser than I used to be.  I have seem more, felt more and lost more.  This next part needs to be good because, let's face it, I am a bit more than middle-aged. 

This last week I have had a chance to re-connect with some friends.  They say you can see yourself most clearly in the eyes of others.  It is always good to see a positive reflections.  And to be honest, I don't think it was just the good wine we drank.

I think I might have to turn back a bit to law. To figure out a way to use my specialized skill set but not be eaten alive.  I have realized that to do the Family Law piece the way I did it, I took on the pain of the family.  It was woven into my being,  I don't have that capacity any more.  My own pain and worry have filled that part of my being.  

Okay, let me see if I can figure that out.... 

Making Memories after Diagnosis

 There is a certain urgency when a child has been diagnosed.  We rush to do so many things. Memories have to be made and made NOW. 

What if these are the last of the memories? What if we don't survive long enough to go on our Make-A-Wish?  What if there is no time for  high school and college and marriage and the first job and the first car and the first broken heart?  What if? It is a panic that strikes the heart of each and every parent, grandparent, relatives and friends.  We have to make memories NOW.  We have to take advantage of this time, this moment, this......
everything. 

Well, take it from an expert, there are plenty of memories being made each and every moment.  Each day, each blood draw, each visit from the Child Life, Social Worker, Ukulele Guy.  Now granted not all the memories are good.  Treatment will erase many memories, but there will be memories. They will be a different kind and those that share them will be altered by the events. But  often there are bits and pieces of good memories.   

We are altered to our very core.  On a cellular level.  When your child faces amputation, total body radiation, red, blue, yellow chemo, and endless invasive procedures, bone marrow transplants,  it has to change you.  As you watch people you love perish and their loved ones writhe in  pain for moments, and hours and months and years, it is hard not to be transformed. 

Human beings are made up by the bits and pieces of who we are and what we learn and experience in life. We absorb things every day. We also are a product of what we remember.  Often we are a bit like Kimchi and need to sit about and wait until we are done.  But eventually there is a good end product.

The moment we hear the words "Your Child Has ____________________ we begin to incorporate the new "Memories" into who we are and will become.  

 It is a good reminder that we should value, treasure and work on this every single day....  

Anxiety feels like Hunger, serious and scary and crazy hunger.

How do I know?  You ask?  Oh well you can  be having a great day.  A sunny in Seattle day. A day where there are birds chirping, daffodil blooming, warm breeze coming through your new front screen door.  It can be a day that it doesn't bother you that the windows are in serious need of a wash.  


Then:

A phone call out of the blue letting you know a dear friend has died.  The very friend that has been on your mind because a mutual friend had died and you didn't want to tell him about his passing.  

I have had people in my life that have very short lists of friends and people in their life.  They sort of hide away and keep to themselves.  I always thought that would be a lonely sort of place.  Losing the people that have touched your lives in a special way is also very lonely.  

Mikie was a part of our entire Ballard house life.  He had a little dog named Betty Boop and all the matching items one would imagine of a great queen.  He planted and fussed and cleaned around the place.  He talked to everyone, he fed all the dogs treats, he painted, installed new doors, he went on endless walks with us and commented on every sort of event in the neighborhood.   

He was a funny little thing but he was a great friend.  A bit clueless sometimes about lots of things like giving my roll of butcher paper away when he moved because he figured if I let him use it to wrap his stuff, I didn't want it back ..... but I loved him.  Mary-Elizabeth loved him. The whole neighborhood loved him.  His presence is woven into our lives with bits of shiny pottery, a beautiful chair, a fun pot, a well planted traffic circle.  

He added great beauty to anywhere that he touched.  I have been looking for my pictures of him or of the Ken Cake we made him for his birthday.  Right now they are not easily available but had Mike been with me, he would have loved seeing the baby hummingbirds.  

He was loved. He will be missed.  The world is a lesser place because he is no longer here.   He and Dad can smoke small cigars together in Heaven. 

I have a pile of Poetry Books

I love words.  Turns of a phrase.  The sound the taste, the images they present to our mind.  I love how complicated our language can be and how there is a never ending coming and going of words.  It flows and ebbs, a living thing.  

My Dad read me poetry.  Until recently I did not know why.  Mom hates it.  Surprising isn't it given her love of words and books and all things curious. 

I think the English Teachers of the world are partly to blame.  I ran across this poem a couple of months ago.  It made me laugh and made me a bit sad.  Words are such a gift and in many ways they can be limiting. But they are to be enjoyed. 

This is the apology to all the students I asked to tell me what someone said.  I should have been a better hungrier listener.  

Poets have a lot to say, they only use fewer words.  

The Effort

                     

Would anyone care to join me

in flicking a few pebbles in the direction

of teachers who are fond of asking the question:

“What is the poet trying to say?”

as if Thomas Hardy and Emily Dickinson

had struggled but ultimately failed in their efforts-

inarticulate wretches that they were,

biting their pens and staring out the window for a clue.

Yes, it seems that Whitman, Amy Lowell

and the rest could only try and fail,

but we in Mrs. Parker’s third-period English Class

here at Springfield High will succeed

with the help of those study questions

in saying what the poor poet could not,

and we will get all this done before

that orgy of egg salad and tuna fish known as lunch.

Tonight, however, I am the one trying

to say what it is this absence means,

the two of us sleeping and waking under different roofs,

the image of this vase of cut flowers,

not from our garden, is no help.

And the same goes for the single plate,

the solitary lamp, and the weather that presses its face

against these new windows-the drizzle and the

        morning frost.

So I will leave it up to Mrs. Parker,

who is tapping a piece of chalk against the blackboard,

and her students-a few with their hands up,

others slouching with their caps on backwards-

to figure out what it is I am trying to say

about this place where I find myself

and to do it before the noon bell rings

and that whirlwind of meatloaf is unleashed.

Billy Collins

Ballistics

Random House 2008

Mary-Elizabeth has become a great writer.

In my life time I have been through cancer twice and spent 10 year dealing with it and its effects, but I am still standing here. I am lucky. I call the time spent dealing with cancer as being in  Cancer World. Unfortunately, ever day new people are thrown into this world, floundering trying to figure out what has happened. It is this reason that my mother started a nonprofit called The Wishing Rock Project. This is a small, but growing group of people reaching out to families, at Seattle Children’s Hospital, whose child have been touched by cancer and whose families are struggling to survive being part of Cancer World. We create and deliver bags filled will essential and special items that might help as the new families begin their pain staking battle.  We found the items really helpful and while the collection is sort of weird on the surface, each item has a deep meaning.  

My mother has been delivering the bags, but I knew I should be the one delivering so that the parents can see that surviving is possible. Despite my knowing what was right, I was terrified because I wasn’t sure how seeing a child in the same position I was in just 2 and 3 years before was going to affect me or how many bad memories it would bring back.  I finally  summoned up the courage to deliver a bag to a family that had been in contact with Wishing Rock.  I arrived and introduced myself to the parents and the look of hope on their faces when they saw me will stay with me forever. I talked with the mother sharing my wisdom of what to expect and answering questions on how to deal with various situations that might arise. The healing power of Honey Nut Cheerio, Metro Mint Water and cheese cake can never be under estimated.   I also sat down with the 6 year old girl and told her despite how yucky she felt right now, things will be better. Showing this family that there is a light at the end of the darkness was the best feeling I have ever had. I learned I was strong enough to help others in the same situation I had been in and make their scary situation a little less scary. I now deliver bags when I am able and do not plan on stopping anytime soon.

What a Difference a Moment Can Make

So, I have been dealing with some issues with some "kids" .  They are in the Millennium  generation or better known as the ME ME ME group that we have raised. This group was given way too many participation medals and pats on the back for mediocrity. Their tool box to deal with life in seriously deficient. 

 I remember my dad being upset when I mentioned there was not a dishwasher in my new apartment.  He was shocked that I would even notice.  I heard the lengthy "When  was a boy we lived in a Chicken Coop" recitation.  I then mentioned to him that we had never lived there and we always had a dishwasher, and electricity and plumbing.  He sort or looked at me funny and smiled.   He had not thought of that before. 

So now everyone has a cell phone, most of them "smart".  There are cars that are more than transportation.  They have a million I-things and flat screen TVs and fast computers and faster WiFi.  And we wonder why they are so flummoxed about hard work and responsibility. When and where would they have learned? We never gave them a chance. 

They want it all. They want it now. Everything is not enough.  And when that does not work, they are a bit miffed.  That is their bad press.  But there is a flip side to all of that.  They live in this moment.  The Dali Lama would be impressed with their ability to only focus on NOW.  Not a moment in the future or dwelling on the past, only the NOW.  Granted they need to worry a bit about kindness and giving back and things like that but they have the NOW thing covered. 

But you can get stuck in NOW. I am having a hard time seeing a future and making any plans.  I am stuck by Cancer World glue.  How dare I be so arrogant and make plans for something more than what we are doing today? How dare I believe there is a moving forward?  I have a hard time making plans very far out.  I know the bridge could go up as I travel over it. 

Cancer World takes lots from us. It also teaches lessons.  I am sort of slow on the patience and acceptance part of it.  Not happy when I don't receive answers of certainty.  I am sure they are not telling me everything and I have come to realize why.  Too much to know, too much to take in.  

Cancer World reshapes our reality and shrinks part of your world view.  You learn to focus on this issue, this moment, this point in time.  There is always a goal you are working toward but your life is peppered with the knowledge the bridge might go up at any moment. Any instant. Any nano particle.  

However, In physics, moment is a combination of a physical quantity and a distance.  

So I am going to work on thinking of NOW as a step.  A step in the right direction. 

I will work on really thinking about each moment being a step.

Not all Roads Lead to Klamath Falls

As you drive back and forth from Seattle to Visalia California to see your baby brother you seen a repeated sign:  Klamath Falls.  Next Exit  Klamath Falls. Now Klamath Falls is sort of inconsequential place in the middle of Oregon. I don't know if anyone goes to Klamath Falls.  I know very little about Klamath Falls but after you see the sign enough you begin to  wonder if you should go to Klamath Falls. 

It became sort of a joke.  The kind that develops when you have crossed over a river 36 times in a very short period of time.  Sort of like the License Plate game. When you are on a long drive this is how you make the miles pass with alacrity.  Lots of roads and exits lead to Klamath Falls. But I think in retrospect, it is a place to be avoided.  Sort like ICU or Hospice.  It is a better to avoid it at all cost and hope the Exit passes you by, each and every time.  
+

I just spent a few days driving to and from Visalia with my mom. We drove I-5 and then at Sacramento headed down 99.  Down the center of the San Joaquin Valley.  Rows and Rows of unidentified trees and crops and rice paddies whizzed by as we drove 80+ miles an hour. When the fog cleared we could see from the Sierras to Coastal range.  Flat, fertile, under cultivation.  Almost a cosmic adventure.  Miles and miles of straight rows, small dusty farm towns. Disturbing feed lots, fields populated by field hands and their families.  It makes you think.  It makes you wonder. It makes you appreciate what shows up in the stores.   

The vastness of it all.  I of course want to know how the valley was formed.  As you drop out of the end of the Cascade Mountain range and leave mountains and foot hills behind, it makes you wonder.  How did this all come about?  Or at least it makes me wonder.  

I spent the whole trip wondering where the Sacramento River starts?  When did they built the Lake Shasta Dam?  How many people live in Myrtle Creek?  What was Happy Donut before it became so happy?  When did the first settlers realize they could grow Oranges?  Who brought them to the valley.  Why do we dye ripe olives black?  When did Zinfandel Wine become dark read and not a Rose?

My list of questions goes on and on.  But then travel does that for you, even a short jaunt to visit your brother in his wonderful house with an orange tree and never ending closets.   

My time away also kept me away from many things that have filled my life these past few years.  Three years and 5 months.  It was a bit of time not to dwell on the stuff that makes "Klamath Falls" an unwanted destination.  

I realized you can run but you cannot escape. Just like when you first enter Cancer World and watch your life go away, you realize things don't stop on command or when you are not watching.  A child was buried, several were mourned. More were struggling. Some were given hope, some were given guarded hope, some were just waiting to find some hope.  


Hope is a good thing. It helps us move forward.  It often even answers some of my questions.

Different Point of View

Sometimes a bit of change is a good thing. Just a shift in focus.  Drove to Eugene, picked up Mom and headed south.  South through the southern mountains of Oregon and then into the Valley... The Valley where thousands of years ago water filled from one mountain range to the next rich soil was created.  

Sandy, loamy, black, fertile.  Almost every inch is in cultivation.  My favorite was the full grown vineyard in the median.  I am guessing the road grew around it but there it is. 

This is a very special place.  We drove past acres and acres of trees.  All planted by those with OCD.  Perfect rows, all ways. Some have grass in the rows, other's have grass and other vegetation around the base of the trees.  I think it depends.  We had to guess because there was not way to really know.  I am all for signs on the fences so I might be able to understand which is which.  Pecans, Almonds, Walnuts? Fruit trees?  What could it be?  All a mystery to me. But then much of life is such a mystery. 

I drove and realized how much I take for granted about what shows up in the grocery store.  It is just there.  No thought given to the way and the how things are grown and what happens to get them to the store.  I do know that the feed lots and trucks of live chickens are disturbing. Crop dusters and people working in the fields.  I am also sort of horrified at the human cost required to have veggies on our tables.  Everything comes at a cost and a sacrifice for someone. 

Oh well, I picked an orange off the tree and complained of the 81 degree weather. I have helped a bit with the house.  I have sold a couch on Craigslist.  I have opened the windows of the house and listened to birds I can not identify.  I have watched the dogs all run themselves to death.  David and Mom are having a great time.  My big goal for this evening is to convince someone tall they should help me hang the Night Watch.  

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".