More Than One Kind of Eclipse

Totality.  It really is a misnomer.  Some things are so powerful that even when they totally cover an object, the object can not be obscured.  It can be changed and altered, but it can not be obliterated. 

Totality is something that can not be explained unless you experience it.  Childbirth, seeing the 
Grand Canyon,  being with someone when they die, seeing a bird hatch from an egg, watching whales spout in the ocean, hearing a symphony play a favorite piece of music, walking through a museum and happening upon a favorite painting. 
Words are insufficient.  

But once you do have the experience, you are forever changed. 

We went to see the Total Eclipse.  The Total Experience is life changing.  During the hour and a half dozens of things become apparent.  

1. It takes a while to develop but seems to recede more quickly.  

2.  While the light remains eerie, it is still there.  It doesn't take much to light up the world.  Even a tiny bit is impressive.

3. The sun actually heats the earth efficiently.  Even when it is half-way gone, it becomes much cooler, quickly.

4. During Totality, it is possible to see the edges of the shadow of the moon.  You feel like you are under a bowl of darkness with dusk around you. 
5. Even at the darkest moments many of your friends provide much-needed support and light. 
6. Seeing the stars midday reminds you of what is in plain sight, if only you are in the right place to see them. 

7.  The Corona is much more than a flash of light. It is magical, powerful and the memory won't ever leave you. 

Sort of like having a Cancer Kid.  Parents can't ever explain what it is like. It never goes away. You live in uncertain darkness, not knowing if it will return.  The world looks the same, but there is a chill in the air. 

You are trapped under a bowl with no way to reach the edges and enter the light.  Even when Cancer "left" for good.  Despite how close you are to reaching the edge, they keep moving it.  The worry and long-term side-effects haunt your dreams and your waking moments.  There is no way to ever believe the monster will not return.  It is hiding ready to spring back if only we knew where to look and how to look for it.  

Both are an experience that changes your life forever.  

This is my Cancer Kid taking photos of Totality.  She had already been changed forever.  This was just one more thing and a great thing. 

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". 

So.... Now What?

I have never worked at being Debbie Downer.  I strive to make bad things good, find some sort of lining, even if it is not silver.  I take each moment and forward endless good energy into the universe.  I really try.  

But there are times and days it is so so hard.  Childhood Cancer death just seeps through the cracks.  Like the nano size dust during the Dust Bowl Days. 

No matter what we do, it is coming and there is often no stopping it. That is how cancer feels to families.  It just keeps coming.  Between deaths of children, young, and in their teens. Relapses and complications and fevers and endless endless diagnosis, it sometimes feels so frustrating.  

The Santa's are out for photo opportunities.  Families are planning Thanksgiving and Christmas events and New Year get aways.  In the shadows are those that are mourning the loss of it all.  Many for their child. Many for the loss of wonder and simple joy of childhood.  I know kids that have been sick as long as they remember.  It is all they remember.  It just makes me so so upset.

  I am tempted sometimes to just slam that door and try and forget that even though we are in a good spot for now.  We have no long term warranty.  Not that anyone does, we are just so much more aware of the lack of safety net.  

So tonight I go to the home of a great friend and we work out a way to make the Wishing Rock Project a real viable thing.  We keep delivering small bags of necessary items to those devastated by childhood cancer.  It think it comes under "it's the thought".  So many things impossible to solve. Sometimes it is enough to try and take care of just a tiny bit at a time. 

Below is a link to Jai Anderson's blog.  They are in the fight of their child's life.  ALL is awful.  AML is the worst. 

http://conglomerationofjoy.com.  

Fear and Loathing of Relapse

I have mentioned in the past the "R" words that live with those of us in Cancer World.  Remission.... our favorite.
Relapse or Re-Occurrence....... ones we fear and loathe. 

What we know is that sometimes remission does not happen.  In ALL ( Acute Lymphoblastic  Leukemia) world the kids are supposed to achieve remission after 7 days of treatment. Meb's was a bit more stubborn and but she was in remission by September 13, 2004.  A full course of treatment (high risk because of her age, her presentation and her failure to achieve remission in 7 days).  Life seemed to great.  Of course 7 years and two weeks after remission her cancer came back. Big time. 

RELAPSE /RE-OCCURRENCE.

Bam.... No real warning. No inkling that something was wrong. Nothing.  Kid looks great. She is in school, she is thriving,  she has this thing beat.  She is headed out into a new a wonderful universe.  Nothing will stop her.  

Wrong.  Oh we  were so wrong.  We had to do another circle of the moon and hope that by firing our reserve rockets we could make it back home.  We did. 

But the spaceship is pretty damaged. The occupants are weary and sometimes it is hard to face the world.  We know there is no guarantee things will stay in the correct trajectory. No way to know what tomorrow will bring. I'm not too sure when we will ever trust that there will many tomorrows.  

We do know that when it comes back, in any form, it does with the fury of the exploding sun.  We are reminded of this often. 

It is back for our dear little friend Allistiare. She had AML when Meb relapsed in 2011 and then she relapsed and then she did so again and then she had a very risky Bone Marrow transplant and now... Now something is back. Something is starting and they know how it will manifest itself. Just having it back, even in little bits they know it is bad.   They don't know if there are many options or where they are headed to figure this all out. 

I love these people, they are family in a special way.  Jai and I had many a cup of coffee during the long transplant months. Sten is great and stoic and a wonderful father.  He always smiles and stays in the moment with a calm I don't know how to master.

It has taken me almost a week to write about this most awful of relapses.  I thought if I didn't say something it would go away.  It would be a bad X-ray tech in Bozemen. It was just a mistake.  It can't happen to such a sweet child. 

As I have wrestled with all of this, cancer and cancer families and families being told to go home to hospice and children dying and this heavy cloud that closes in on me, I have come to a realization.   If there was a good thing to do to make it all better I would have figured it out.  If there was a bit of magic or some secret or special charm, in 10 years, I would have figured it out.  

There are no right words. No right actions. No right answers.  (Now granted there are lots of wrong ones but that is for another day.)  So the only thing I can do is listen. Ponder. Respond. React in a thoughtful way. Have lots of chocolate and Starbucks on hand.  

I can do that. 

Jai, Allistiare's mom is an amazing writer.  Here is the link to her blog.  I would suggest a glass of wine in-hand before you start.  
http://conglomerationofjoy.com/

September a month of Contraditions

It is Pediatric Cancer Awareness month.  I have been aware of Pediatric Cancer for way too long but never really knew it was the month of awareness for until last year.  I am not sure when this all started but September has been significant for a bunch of reasons.

September 13, 2004:  Date of first remission.
September 28, 2011:  Date of Relapse
September 30, 2014:  Things seem to be fine.

So I am working on loving September since we are having good news for two out of three times. 

My questions for today are:  Now What?.

Its time, very much time for me to start generating money in a constant and steady manner.  More efforts in networking, redrafting my resume and then seeing what I need to do to convince someone I am exactly the right person for the job.

I will keep trying... Because if we have learned nothing about the past few Septembers... Trying is the only option.  Eventually you get good news. 

Whats all the Fuss about Childhood Cancer

September is Childhood Cancer Awareness month.  Sort of like October is Breast Cancer.

I guess it is hard to believe there are people that are not "aware" of Childhood Cancer but given the small amount of funds (4%) go directly to Childhood Cancer research it is easy to understand.  It is such a small percentage of the cancer population the drug companies have not developed any new drugs for a long time.  That being said, I am still baffled at the lack of knowledge about what happens to kids during and after treatment.  

People often want to know if Mary-Elizabeth has been cured. I never know what to say about it. The medical people love to talk about 5 years, or 10 years of being cancer free.  We have small and young children. For example, if Robin Ulness makes it 5 years post cancer, she will be 7 or 8 years old.

 Mary-Elizabeth will be 24 years old.  Does not seem like much time.  She will maybe be just out of college.   

Just imagine if you only were able to allow yourself to look 5 years ahead.  No more, that would be all the time you have.  5 years.  Your child does not get to be any older then today plus 60 months.  The length of time it takes for most Americans to pay off a car.  1/6th of a house loan.  

I guess what I want is people to pay attention and maybe focus a bit on what is happening behind the smiles and the "sure we are great" that parents and Cancer Kids often have.   Because it is hard.  Even if you kid is "fine" and getting better each day.  Many are not.  Many are still trying to find away out of the grief and the pain of loss.  A family had to have the "talk" with younger brothers and sisters.  The your brother is dying talk. 

Don't take me wrong, I am so so grateful for what is available, for new and improved treatments, for less invasive treatments.  I understand how complicated this all is. But....

Just take a moment.  Look at the full moon and ask the universe to leave these kids alone.  Let them live out their lives. Let them fall in love. Learn to ride a bicycle.  Learn how to make a soccer goal. Learn how to drive a car. Learn how to get themselves out of jail without Mom and Dad finding out.

Okay, I'm done.  Maybe next year Seattle Children's Hospital will acknowledge the month since they do such good work in helping out kids. Maybe the White House will light up like they do for Breast Cancer. Maybe Century Link and the Ferris Wheel will do the same. Maybe the Empire State Building will light up for something more than the US Open.  Maybe we will do enough education so people will begin to understand the high cost of this disease.  

Mother Earth has lit up in Hawaii.  She is going gold. 

Stage Ten

Lots of cancer's are "staged".  It depends on the kind and lots of factors.  Stage Four is bad. Stage One is not so bad.  People move back and forth in the stages and it rules their lives.  

Leukemia is sort of like being pregnant.  You are or you are not...  Simple.  

Mary-Elizabeth does not have leukemia any more.  She has not had it in her system since some time in November of 2011.  She has been in "remission"  or not pregnant since then.  In order to have her transplant, she had to be cancer free.  The whole cancer free thing seems to be confusing because of the length of the "treatment".  It does not fight leukemia, it just beats up the bone marrow to such an extent that in theory, no respectful leukemia would dare to come back.

The various kinds of stem cell transplants, bone marrow, cord blood,  related, non-related, self-donated, all of those are just jargon.  You sign papers, let them kill the cells in your bone marrow that produce blood cells and replace them with healthy, happy, normal cells.  Or that is the plan. 

So, since we live in Leukemia World and we don't get to have stages, (not that we really want them), I have decided we are in Stage Ten. I figure we have been here long enough to just make up stuff. 

Stage One: She was diagnosed on Friday the 13th of August 2004. 

Stage Two:  She was Leukemia free or in Remission on September 13, 2004.

Stage Three:  December 7, 2016, she took her last dose of Chemo therapy. 

Stage Four:  Relapse on September 28th 2011. 

Stage Five:  Remission November 10th, 2011.

Stage Six: Double Cord Blood Transplant, 2012.

Stage Seven: First new baby countable cells show up in her blood, February 11, 2012

Stage Eight:  August 1, 2014, the final doses of immunosupressents  are taken.  (Should have only had to take them for 100 days, but who is counting....)

Stage Nine:  De-Portation Day.  The port that lives under her skin with a nice tube going directly into her heart, is removed.  August 25, 2014... 

Stage Ten:  Trying to begin to believe and trust it is over.  

This is a journey at its end.  We have traveled across the country to find a path to the sea and have returned to tell our tale.  Like Lewis and Clark we are worn and battered and very ready to sleep in our own safe homes.  

Stage Ten begins today. 

Hyper Pin Point Focus....

We get so focused...So focused on the goal that sometimes we don't see the big picture. 

 The big picture is there all the time but being in cancer world deletes your ability to see that picture.  You have one set of goals.  It starts out big... Cure Cancer. Cure and defeat Leukemia, AML or ALL or , Brain Tumor, Sarcoma...Wilms, the list is endless.  Cure, Cure, Cure.

Only later do we face the reality of what the cure means.  80% of the time it means life.  Survivorship, a future, a way to return to normal.  I told someone a long time ago I was not giving a dime to anyone that wanted to cure Cancer, only to those that wanted to figure out how it happens and make it stop. 

I sit here this week and look at the fall out from being in Cancer World twice and now it is damage control.  Sort of like the bombs dropped on Nagasaki and Hiroshima.  They stopped World War II but then what.  At what cost to those sitting around innocently having a morning cup of tea?

Mary-Elizabeth and all of our children have been subjected to a nuclear blast. Many cells and organs and future cells and eggs took one for the cause.  Her thyroid died, her eggs are (ready to be served on) toast, she is guaranteed cataracts and skin cancer and a whole list of possible other cancers.  

Don't get me wrong, I would make every single decision the same except I would have pushed for egg harvesting when she was about 17 or 18.  I didn't think about it then and now it is too late. 

We are so singularly focused on a date, a place, an event, a result.  Please let my child's body be ready for more Chemo. Please let my child's body be able to 4 days of twice a day total body radiation and high dose chemo so that she will be completely helpless against any sort of bug!  Please let them do some more scans or run a scope down into her stomach and take a biopsy.  Please let them operate and remove huge parts of her bones and replace them with some foreign metal in a new experimental surgery.  Please, we will take anything, just let her live...

If we ever stood back and took a look at what was really happening and thought about it, I don't know what would be the result.   I guess our brains know we can't handle too much.  So we are able to chop up the ongoing crisis in little bits and pieces to be handled one step at a time.  Today we do the biopsy or the scan or the chemo... Tomorrow we evaluate and keep going until we hit CURE.  We will take the dead thyroid, the deeply upset kidneys, the brain die-off the massive infection that will not heal, the relapse, the 14 days in ICU, the emotional storm of anxiety and depression and all the rest.    

We are focused on a Cure.  Nothing more, nothing less. 

    

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. 

Slowly Sneaking Out and About

Lionel Richie, The Seattle Symphony, Shrek the Musical (Blanchett's annual Musical).  Oh my this is feeling great and exciting and a bit nerve racking. 

Little by little we take baby steps returning to the world that has gone on without us.  

Pearl Ann ( Meb's Cord Blood Donor) has been without a dose or two of her medicines that keep her under wraps.  We are being quiet about it. Hoping she does not notice and get too excited about the new freedom.  She is still heavily supervised but like all toddlers we are trying to give her a little bit of freedom.

So Far So Good.... Now we hope the musical does not scare her. 

The Taper Begins.

Lots of time between now and the end of July for the Sirolimus taper. Prednisonesits around until the first of August.  I thought I would be ecstatic.  I am just a bit worried.  Sort of like a mom sending her child out to school for the first time. 

Since January 24, 2012 the new cells introduced to Mary-Elizabeth's body have been discouraged from working at 100%.  The docs use some kind of suppression.  If they let them just act like an immune system by themselves they attach the host body.  

Pearl Anne has been very willing and able to go on the offensive on a number of occasions.  She had a wild and aggressive spirit. This has caused some serious problems in the past but we are hoping she has settled into her home.  For the last 5 months, there has been no serious flairs of GVHD and there are not too many complaints about not receiving lots of Prednisone to keep things tapped down. We shall see.  Tomorrow Meb will skip her 1 mg of Sirolimus at 8 am.  It will be a start to the taper.  We are crossing our fingers and toes and saying lots of prayers to the universe and all the component parts that it is okay. 

It is a nasty drug:

Sirolimus may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer. To reduce your risk of skin cancer, plan to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen during your treatment. If you experience any of the following symptoms, call your doctor immediately: fever, sore throat, chills, frequent or painful urination, or other signs of infection; new sores or changes on the skin; night sweats; swollen glands in the neck, armpits, or groin; unexplained weight loss; trouble breathing; chest pain; weakness or tiredness that does not go away; or pain, swelling, or fullness in the stomach.

Sirolimus may cause serious side effects or death in patients who have had liver or lung transplants. This medication should not be given to prevent rejection of liver or lung transplants.

There is a part that wants things to continue but this is the first step towards the real end. The real time when we are done. When the trip is almost complete. 

In one day, I have become one of those worrying moms that are so sure the sky is falling.  I have seen it fall before so this is a bit scary.  

She looks good, she feels good. She is making great progress. She will be fine. I will be fine. Everyone will be fine.  

We will be fine.

Maybe today we are able to continue the Taper

So we are at the point where things are really stable and have been for quite awhile.  Little GVH skin flairs every now and then. Some GVH in the scalp, but over all good. 

She has been on steroids, sometimes really really high doses for more than two years. Gut issues, skin issues.  Blood clots, Kidney stuff, Dead bone in leg issues. The usual, unsexy sort of stuff. 

But today we meet with Dr. Carpenter our lovely handsome kangaroo eating doc and I am putting my foot down.  We are done with cancer and post transplant crap.  I have not decided what to take him as a bribe but I will think of something.  Maybe something from the Spam Museum...

So while I have not had a tone of anxiety about this appointment, it has been sitting on my shoulder being irritating.  Today I intend to kill it...

Update at 11

Just one of the many curves in the road we have traveled. 

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.

I think Cancer is Like Spam

We don't want it.  We can deal with it if we have it. We can make something wonderful out of it if it is our only option. We don't know what it really is but we know it is real. Bits and pieces all put together with research and procedures and endless tests and scans. 

It comes in a lot of flavors. But is really is the same.  

A hunk of gelatinous meat stuff.  Lots of people have experience with it.  It has touched all of our lives.  It is scary and mysterious. Those who have embraced it seem to understand and know what to do with it. Those on the outside are just plain frightened.  

Sometimes is is just all you have and you will make the best of it.  Sometimes it fails you.  The little do-hicky on the can breaks.  You just don't have the pineapple chunks to mix with it or you are out of white bread and yellow mustard. Sometimes people make fun of you. They don't realize you don't have a choice.  It is what you have and you have to make it work. 

The really crazy part of it, is it lasts for ever.  Darn near forever or what seems forever. We visited the Spam Museum and the expiration date on the items we purchased are January 2017..... 

Some are lucky to escape and leave the cans of Spam behind for others to deal with.  Some never leave it behind. Some have to come visit again and again, in an endless loop of cans or now in Singles...


We feel we are ready to leave it behind.  We know we are really really close to the end of this part of our journey.  

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.  

Waking with More Questions Than Answers

I am a person of endless questions.  I want to know about stuff.  It is a driving passion. Why is the dirt red here?
What is our elevation?
When did they plant those trees?
Why didn't they ever plant trees?
What are those trees?
What is Devil's Slide?

How did they find the passes through the mountains? 
Why did Lewis and Clark use the Missouri and not the Mississippi?

Endless, all the time.  Discussion, and contemplation and Google searches.

So yesterday as I was driving into the valley, I was thinking about the last time I did this drive.
I was 22 years old.  The age of Mary-Elizabeth.  I was going to my first job as a Teacher in Dietrich Idaho.  I was to teach English 7-12, Reading and be the Librarian.  Salary of $8,800.00.   1977.  

I don't know the answers to so many things.  Where did I stay until my little trailer was ready? What did I bring with me?  Did I have my sheets and blankets?  How did I furnish the place? Was there furniture here?  
How in the hell did I do the job? I do remember a call to Dad and some tears.  I was worried and afraid and felt so alone. The call was from a pay phone in Shoshone. 

I am going to have to ask Amy.  She came to visit me.  

I do know the answers to some of the questions.  I learned to love it here.  To this day, I love the high desert with the vast horizons, the burrowing owls, the antelope, the storms, the sunsets.  I remember growing to love my fellow teachers.  James, John, Judy, Anne, Janet.  Each added something to my life in a different way.  Things I have carried with me all these years.  

Oh, dear, time is running out for this mornings musings.  I am meeting James and John for breakfast in Twin Falls before we make the final push to Seattle.  To our current home.  

I am so glad to have been on the road to Twin Falls more than one time in my life. 

Certain Days there is Space for me to do Certain things.

For the first time since transplant, I am leaving our house for what seems like long time.  I am truly going to be away.  We were in Eugene a whole lot of last summer but it was different because if need be, I could be home in 5 hours. The dogs were with me.   

Nothing huge.  This time time I am leaving the dogs, the house and someone is taking up residence for the entire time we are gone. I have taken this time as a time to clean out a few things.  One of them is my voice mail.  

As everyone knows, I am terrible about listening to messages.  I just look and call back.  Seems like we can cut to the chase.  Seems like a good thing.  So I took some time and cleared some messages. They are stingy about how many you can have at one time.   I listened to the first few messages on the rest.  I have three or so very very old messages of Mary-E as a child and one or two from Mom.  I have a few from my sibs but the most difficult are the ones from our Dad..... That voice, that bit of humor and whimsy, that call made to point fun at some sort of item in the news, a serious point to be discussed about a legal issue or just to say hello.  I could not bring myself to listen.  Just hearing the voice, for a few minutes was enough.  For now.

There has been lots of discussion about the new Cancer Kid movie coming out this summer. It seems to pop up everywhere.  I made the compromise and watched 50/50. Someone needs to tell the peeps in Hollywood that when the hair goes, it also means the eyebrows and the lashes....  I would give it a 4 out of 10.  Love the people. Story written by someone with a book and no real cancer world experience.

So I The Fault is in the Stars appears again.  Yes again today.  I protest. I look at another web page.  There is a secret Facebook page for moms and caregivers only. Have to be added, have to be approved. Have to know the secret handshake and have the correct browser.  They have teamed up with another organization that listed some of there projects... 

I hit a link and found this...
www.youtube.com/watch?v=5iTImZGOtc4

This is real. This does have the real ending. Hollywood should make this into a movie.  

Now we are off for a bit of an adventure....  

Seattle to?????