Vigils....

We wait, we wonder, we watch, we fiddle, we pace, we glance over our shoulders, we wait some more.   We check our phones, we check our Facebook, we look for new e-mails, we look for new text messages, we look at Twitter.  Somewhere deep in our souls, we know what we are waiting for, and we don't want it to happen, but we can't stop it.  We can't change it.  We just wait.  

Two weeks ago Allistaire left Seattle Children's Hospital for the last time. Sometime early this morning she took her last breath.  True to Allistaire's sense of self, she fought for those last few breaths. 

Allistaire was not ready to go.
Sten wasn't ready for her to leave.
Jai never imagined she would have to leave so soon.  
Solve was certainly not wanting to lose her baby sister.

I don't even know what to say. So I will do the next best thing.  

The Allistaire I knew and came to love believed in magic..... She found it in her short life. 

The vigil has ended. 

  

Allistaire

Sad:  Me

I have been looking for the words to express the feeling when you know someone you have buried deep in the special places in your heart is not going to remain in the physical world.  To learn a six-year-old girl, one you have grown to love is dying, make me Sad.  

Sad. A simple three letter word.  A word with long meaning within our lexicon but still,  only a word.

So I look for meaning. 

Oxford English Dictionary Etiology of Sad

Old English sæd 'sated, weary', also 'weighty, dense', of Germanic origin; related to Dutch zatand German satt, from an Indo-European root shared by Latin satis 'enough'. The original meaning was replaced in Middle English by the senses 'steadfast, firm' and 'serious, sober', and later 'sorrowful'.

The original meaning of sad in Old English was ‘having no more appetite, weary’. The word comes from the same root as Latin satis ‘enough’, the source of satiated, satisfactory, and satisfy (all LME), and the idea was similar to our expression fed up (early 20th century)—of being unhappy through being too ‘full’ of something. The word then developed through ‘firm, constant’ and ‘dignified, sober’ to our modern sense of ‘unhappy’ in the medieval period. In the 1990s ‘You're so sad!’ became the refrain of every teenager in the land, often to their parents. This use, meaning ‘pathetically inadequate or, was not completely new, and had been around since the 1930s.



Shakespear:

sad (adj.) 1 serious, grave, solemn

sad (adj.) 3 downcast, distressed, mournful, gloomy

seriously, gravely, solemnly

“how sad and bad and mad it was - but then, how it was sweet” 

Robert Browning

Sometimes it is okay to sit with the sad.  The tears that come, the moments of pressure on your chest so heavy it inhibits your breathing, the need to eat something chocolate.  

I will take a deep breath.  I will light another candle. I will try to help in some concrete way.  

It is so hard when it is one of our own.  
Another Deep Breath. 


Every Moment of Light and Darkness is a Miracle.  Walt Whitman

Rest-in-Peace....... Really

I suppose if someone dies in a war. Or if they lived a life of hardship and stress.  If they are from a country where bombs drop all the time.  Rest-in-Peace would be a great thing to say.  Simple, life-affirming, considerate. 

But... you can hear "the but" coming can't you.  
 BUT  I certainly am not tired.  I don't need to rest, except for nap time some days.  I have way too much to do.  I don't have time to rest.  I don't want peace and quiet.  I want to make a difference in this world. I want to make sure it is a better place than when I entered.  I want to find out stuff and learn stuff and grow stuff and read lots of good books and make up countless recipes and have wine on the deck, and the list is endless.  

I don't want to Rest-in-Peace.  I want to RIP through life knowing it is a precious and limited thing. If I feel like this at 60, I am sure the children we watch die, day after day have other plans.  Seattle lost another one on Sunday.  Ahmie Njie was only 14.  She was full of life and cancer.  They don't go to well very often.  Cancer is atrocious at getting along with its host.   It kills.  In unthinkable, painful, sad and depressing ways.  It takes so much with it when a young one dies.  
Ahmie is another victim.  One that touches each of us.  I didn't understand how it all worked until I was reading a book that talked about a quantum physics concept of "Quantum Entanglements."  There are those that believe particles in far reaches react with each other even when they are far far from each other.  Cancer Moms have the same thing going on with each other.  We connect when we share our stories, and we continue to feel the story as it proceeds.  We react. We respond. We reach out. We recoil. We feel.  The empathy runs deeps and long and reaches across the boundaries of the world.  

Ahmie's Mom chronicled her story and shared the ending with the world.  I don't have the ability to understand or know what Gienna is feeling or thinking right now.  I would not presume to have words or answers or even know the right questions to ask.  I do know there is an ache in my heart.  A need to take many deep breaths.  There is an empty place in the universe.  A void was left by a child that was not ready to rest.  She had too many plans and too many ways she wanted to RIP through life.  

We have become "Entangled".  

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.  

Meeting Momcologist

Today I met up with some Momcologist.  Often this is a moment of healing and joy and support. Today it was a moment of support. We gathered to support one of our own at her son's celebration.  It was a great bitter sweet event.  Laughter, tears, moments of deep sadness, some relief in coming together.  

Clearly a very extra ordinary person had his life hijacked from him. 

We often mention that a person lost their "fight" with cancer.  That is was a brave battle. They were a trooper, they soldiered on.  There was a positive attitude and braveness is always mentioned. We heard a lot of that today.  Everyone fought, everyone prayed, everyone pleaded, everyone did all they could to keep death away.  

I just don't ever want to hear that Daniel, or Micheal, or Alise or Ruby or Nala or Owen or Mario or Sarah or the endless others "lost". They are not losers. They did nothing wrong. They did not take a wrong step or fail to do something right or not do ever thing possible to conquer cancer.  It is not fair to say a child has lost a battle.  Winning and losing would be appropriate if there were rules of the fight.  Like the good old day when everyone agreed on what day the battle would take place. The child's life was hijacked. In many cases there was really nothing to be done at the end. 

They had cancer.  It is unpredictable. It is ruthless.  It does it's job in ways no one can figure out.  It is a very poorly designed invader/alien force. It has not figured out how to reach stasis.  It kills it's host.  It isn't just happy to settle into a bone, or a lymph node, or a kidney, along a nerve or an eye.  It wants more. It wants to see how it can continue to survive in other places.  Lungs, brains, other bones. 

Today I felt like we were all a strand in a web. The middle was Daniel and the stands and circles of web were populated with all the friends, families, care givers, teachers, neighbors, classmates, doctors, ministers.  Everyone in the web, there to say goodbye to the center of that particular web. 

The webs are fragile and each day have to be re-made.  When the center is gone and the strands are broken, a new creation has to be woven. Clearly he left much more of himself behind to help with that process.  

Daniel is gone. His life was ended by his cancer.  He is so much more than the kid that "lost" his battle with cancer. 

One less Portrait of Dorian Gray is in the upstairs room.

Someone really really special left very very early.  I mean, lets be honest, when I first met him, 54 would have felt ancient. Now it feels young. Kirk never aged.  We knew there was a portrait somewhere!

Kirk Hadley, or Captain Kirk to many, made a quick exit.  He died.   He just up and died.  I don't know much but I do know he will be missed.  Not that everyone won't be missed but I will miss him and feel the loss for a long long time. 

He smiled, he questioned, he cried.  He was a whole person.  He was someone you could not see for years, maybe decades and then slip back in to the same easy place in your relationship. He was my friend and I loved him. 

In early May I was questioning the wisdom of taking a trip with my daughter across the country.  Cons:  No visible means of support, ancient car (with good tires), family members upset that I was not working.  All the grown up reasons we don't do things.  It did not make sense to drive 5600 miles on a whim.  

I received my call from Lori and then  I knew.  I could meet a sudden end or Mary-E could relapse again or have a stroke or a pulmonary embolism or be on a college campus and have some gun toting maniac come shooting.  

Pros: Time, I had time.  Mary-Elizabeth had time.  

Not everyone has time. Time is precious. Time is not to be taken for granted.  We all assumed Kirk had time.  More time. Lots more time.  His time ran out.  He doesn't get to see his grandchildren. He does not get to play another round of golf. He does not get to see his son's continue to grow into fine young men. He does not get to have his mom's pot roast.  

Time, not money, or jobs, or new cars.  Time is the defining factor.  Time is painfully limited but seems infinite.  

Time with someone is limited.
Time without someone is infinite. 

Capt Kirk.  You will be greatly missed.  You were loved and appreciated and valued.  

 

Childhood Cancer...... Rare? Depends on your perspective.

Childhood cancer is seen as a rare disease.  Lots of money goes to things like Breast Cancer, Lung Cancer and Colon Cancer. 

So these are the facts:

 Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids a day.

 35,000 children are currently in treatment for cancer.

 Some 25% of all kids who are diagnosed with cancer die.

• Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
• Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.

 More children die of cancer every year than adults died in 9/11.

 Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.

 The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.

 The death of a child is one of the most traumatic events a family might face.

• Families who have lost children are often financially and emotionally depleted.

This is Cancer World.  Now given there are over 300,000 million people in this world, Cancer is Rare.

When you are in Cancer World, none of it seems rare... It is our lives.  I am not sure why they always report the occurrence of childhood cancer as if it is surprising.  Those of us here it is not rare. 

Each parent of child with Neuroblastoma, knows a dozen kids with the same "Rare  form of cancer.  For a child to die of OsteoSarcoma, shish, happens all the time.  For a child to fail at a Bone Marrow Transplant, so so common.

It is all about perspective.  It just irks the Cancer Mom's when the words

Rare

seldom,

almost never happens

are bandied about our feathers ruffle and our feelings are hurt.  We are so so sensitive because all the kids we know have cancer.  It is not a rare event. It is our everyday life. 

When you enter Cancer World you are immediately

 put on a floor with kids that all have the same thing disease.  As your former live is taken over by being in Cancer World, you make more and more connections with families with cancer.  If you take stock of your life and your connections, few begin to be Cancer Free families. 

Because your child had cancer, everyone with cancer in their life begins to share.  You learn all about their journeys.  It is a way to connect and to be supportive. Sort of like when you are first pregnant and most women have a birth story to share.   Sharing and connecting is in our very beings. 

Childhood Cancer is rare when taken from the view of the entire population of the United States.  It is not rare on the 7th and 8th floor of Seattle Children's Hospital.  

It is the most financially and emotionally devastating form of cancer.  You think it is hard to parent a Teenager, try doing so with one that has been through treatment or diagnosed during that time.  We all complain we did not receive a manual for babies. We certainly don't have a manual for helping a child die and for burying a son or daughter. 

Lots of people are upset by the book "The Fault is in our Stars" and another one called, "I Wish My Child had Cancer".  

It is all about perspective.  How are we looking at things?  Which part of the animal is the blind person touching?   I get upset when I think someone should know better when they speak.  Dr. Charles Hemenway, an oncologist was one of them.  He really upset lots of families belittling their pain and struggles. He then explained himself as being a kind caring oncologist but not a lot of people bought his explanation.

He is one that should know better. 

Again, perspective.  Where are we seeing this story unfold? 

Waves of Pain When a Child is Gone

Facebook has created a place for people to share. They share what they are eating, cute kitten videos and now the pain they experience when a child dies of cancer. 

We have been lucky enough to avoid this most heinous of losses but we always know it is there. It hangs around. I have watched it so many times these last few years.

I remember being on the floor when Meb was in treatment.  Sarah was dying. She had lost her battle with a nasty form of Lymphoma.  On the old floor people were moved to a private room and then a one on one nurse was assigned.  Then the people start to come and say good by.  We all watched as streams of young adults and family members came and went, beyond visiting hours.   

Then the Father showed up.... The hospital helped him come but he clearly was very uncomfortable.  He was standing in the hall one day looking very lost.  I approached him and told him I did not know his daughter but I could tell from what everyone had said, she was a great person.  Her greatness was only validated by all the people that were visiting and letting her know she was loved. 

He looked at me and told me there was going to be a miracle. They were going to fly her to another hospital and she would be well again. I put my hand on his sleeve and he simply grabbed me and I hugged him with all the strength I could muster.  He continued to hold back his tears and fear and terror.  A terror I can only imagine but I have felt emanate from so many whose children are now gone. Rebecca, Mario, Joseph,

Jaxon, Ruby.... this list goes on. 

Micheal was laid to rest yesterday. Allie will leave this planet soon.  Katie and Daniel are moving forward on their bucket lists with great alacrity. 

 It never gets easier. because there will be more.  But the miracles will continue to happen.  Really smart people will keep working to fix these kids.   And we will continue to believe it will be better someday. 

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.

Euthanizing Children

Euthanizing Children

I could not type those words yesterday.  How do you type those words.  While I often think we go to far in Cancer World and don't step back and let kids have comfort before they re-boot, never did I think about letting them ask to die.  I never even thought about it. 

So let me process this.  So we have a child. They are terminal, they have pain that can not be managed with any amount of drugs.  They are able to ask to die and I have to agree.   

Can a three year old ask? I know a pretty smart three year old, Alistaire.  She has had cancer twice in two years.  She just wants to be a big girl. She asked her mom if she was going to be a big girl.  Does she even understand the word "dead".  Even if she asked would anyone be able to "agree".  She just wants me to upgrade my phone games.  Alistaire does not care about the License Plant Game.

Mary-Elizabeth is now an adult in the eyes of the law.  (She has been an adult much longer than that. )  More than once during the process she wanted me to make it all stop.  There were lots and lots of time that the pain was beyond what could be given to her safely.  Not just once but more than once.  Lots and lots of gut wrenching, "I am going to kill these people if they don't help her kind of pain." 
New Computer system, nurse on break, new codes, no one on the floor, no one responding kind of deal.  I was very very very very clear that I knew the code and I would administer the meds if they did not respond. 

Oh, dear, if that pain was constant, would I agree to her request to be done.  To die.  Oh, see it is good for me to write through.  Would I agree?  See.  It is possible to get to the point when it makes sense. 

But what if there was hope?  What kind of hope?  Hope for snow day or hope that Santa is real kind of hope?  This is certainly a topic for another day.  

Okay.  Enough.  Time to plan the activities of the week.  Walking, cleaning, job hunting, package wrapping. Waiting for the Christmas Cards to arrive.  The usual.

Oh, I better add Laundry...

 

How the Blog heals me and a moment for Mario

It is my sounding board.  I have these thoughts and feelings and I figure everyone is tried of hearing about the feelings deep in my soul.  Let's be real, I am tired of them.  The fear, the anxiety, the nagging questions, the unanswered questions. 

Being a good Catholic, I lay it all on the alter for God and my favorite Saints and the Universe to handle.  I have to put them somewhere and this is where they find themselves.  Most of the time it works.  Most of the time, after I write it and hit publish and send it out of my life, I can move on.

I often return to find something and I am surprised by what I have said.  It pulls me back to the moment, I rest with it awhile and then release it again.  Sort of like Paul Sommerfeld's catch and release fishing. (Mary-Elizabeth loves fishing and never understands why he sends them back.  If they wanted to stay in the water they would not be on the hook.  If they were tricked to being there then they should not be returned to the gene pool.  They are stupid fish.)

There are things said here that can not be given power of the spoken word.  It is too painful.  It is a sort of long long prayer, one I am grateful to share with those I love or even just intrigue.  There is huge power in prayer, when the whisper goes out into the vast empty sanctuary and the masses repeat:  Lord hear our prayer.  

Mario has been gone for a year, today. He was one of our people. A big lovely young man that fought through so much and his body said, enough.  He received his double cord transplant on January 23, 2011.  The day before Mary-Elizabeth.  We all lived on the floor, watched the progress of each other, complained about the horrible food. Helped each other, asked those weird questions only Cancer mom's ask:  Counts? BK virus? GVHD?

We all survive, we all go on, we all weep, we all worry, we all pray.  We all know tomorrow is another day. 

And I still have to organize my shoes, now there is a big problem the Universe has not sorted out for me.

Connections

As I look back on my life, I can pinpoint times when very significant connections were formed.  These were times of change, transitions, endings, beginnings.  These were times when groups of people were beginning new journeys together.  While we pick up people during our lives there are just those special times: Freshman year of college, first year of the first really job, graduate school,  the like. 

I realize being a bonified member of Cancer World has done the same thing.  While we are all in the same boat much of the time we all have different journeys.  Some good, some not so good.  We often don't know last names or diagnosis or prognosis but we know the pain that binds us together.  We know the fear and the terror and the anxiety  of waiting for scans or counts or waiting for the match notification.  The unique pain of watching the chemo or the blood or the weird green platelets drip into your child's heart via a port or a Hickman.

We all live in terror of Relapse, Re-occurrence, Secondary Cancer or late stage side-effects.  We are caught in the same web avoiding the middle. We fight against it but we are here together, to support, cry, pray, plead, listen, what ever is needed at that moment, for the person entering the web for the first time or the last.  We are here together.  

Some think this is a godly plan of further shaping us and for growth and for......  I just don't believe any God, Any GOD would ever make a child suffer to help a parent learn to be more patient or kind or understanding or more giving.  I believe our children are in this web with us just because.  Luck of the draw, or should I say bad luck.  My God does not make little children suffer to make a point. 

I do believe once here, our needs are taken care of in amazing ways.  The comfort of others comes forward in miraculous haste.  The right doctors, the right nurses, the right donor, the right meal, the right phone call the right person to share their experiences with you.  That is where God is, with the kindness and love and support.  Faith requires you to rest back and let it happen and accept what comes your way.  No requirement to be stoic about it.  No requirement to be happy or accepting.  There are huge fights and battles and challenges and our involvement is required and needed.  There is deep disappointment and loss and grief and agony and helplessness.  It all is often just too much.  There are times you really don't think you can stand one more bit of bad news.  One more moment of sadness.  But reality is you can. It passes, it subsides, it fades a bit. 

It was suggested I break away from those at Children's.  Stay away from the despair.  I might be on the outer edges of the web again but I know I can return to the downward spiral and head to the middle of the web in a blink.  No more could I leave those I have such powerful connections to then fly of my own power. 

Spider Web is the strongest connector in the world outside of the bonds between Cancer Mom's.

You Know Mom...

I am done with being treated for cancer.  If it comes back again, I am not doing it again.

Yes I do.

Okay.  So what are we doing to do for Alistair?

I don't know yet. Lets think about it.

Okay. 

Where are we going to have pancakes?


We were just standing out side by our new little free library and those words came out of her mouth.  No big talk, not deep discussion.  I told her today about Alistair's failure to go into remission and the  new plan.  We know what that means on many levels.  While we pray and plead and light candles and pray some more and boost our Hope Levels, we know that this is zero hour, dark thirty, back to the wall time. 

I asked her if I did the right thing by telling her and she said yes.  Cancer takes so much away but adds a new dimension to your life.  It makes you cautious to get close to people in your own life boat but the people in the boat are really your best friends.  When one is having trouble and in danger everyone is in danger. 

There are no words right now.  We are going to go have pancakes and drop by the church and light a whole bunch of candles. 

Questions that Cann't be Answered.

Why is the D only good if it goes in one direction?

Where do you live?  By the Zoo

Why do you live so far far away!?

Why don't you have hip hop music on our IPOD?

Why don't you just hook up to Pandora?

Why didn't Jordyan share her brown pencil?

Why are you fat?

Why is the clock moving the same all the time?

Endless whys. 

Three days with those under 8 is good for the soul.  There is no doubt about it. 

I think these last few days have helped make me read,

to catch up on Facebook and my own e-mails.  Sometimes God knows how much your "I am can take anything that comes my way" meter needs to have in reserve.

So my question is WHY DOES ANY PARENT HAVE TO HEAR THE WORDS HOSPICE?.

I have written and kvetched and whined about lots of words.  Cancer, relapse, remission, GVH, Kidney Disease, Chronic, AVN... my list is long and complicated. 

I have feared and envisioned works like Hospice and Quality of Life.  I have never had to hear them come from the mouths of our much trusted healers. 

Alistair's parents have heard these words while I was answering a million other questions.

They are going to try one more time, one more round of chemo and a million and one more prayers.  http://conglomerationofjoy.com/2013/04/23/out-of-body-experience/

I can only report, I am beginning to really need some answers. 

And soon THANK-YOU VERY VERY MUCH.

Here is the link to Jai's Blog.  I am out of words and answers for today.

Letting Go

As we travel this path back to some sort of normal we encounter people diverted from the trail.  Their child dies.  I so remember the first child I knew dying and how it affected me.  After all this time one would think it would be less of a shock or painful or devastating.  It simply is not.

If you really know the family there is this long and I mean usually two or three weeks from the time of "hospice" to death. During that time there are all these watching of the signs and never ending hope.  "She smiled today and I think she is going to beat this thing."  This end time, this long and difficult process just has reaffirmed for me how much life can be left in a person after so much pointed constant attack of treatment.  


As a parent it is so painful to watch.  After observing many children die, you get better at helping.  Less thrashing around and agonizing and more positive action.  A long heart felt hug. A basket of china tea cups and tea for the waiting. An extra small pot pie from MetMarket for a meal.  A listening ear. 

It is important to agree every time someone is grasping for hope.   There just isn't any reason not to do so.  The letting go process is long and hard for cancer parents even thought we have seen the need so many times before.  We all start it because we are all faced with the loss of our child and each child is "our child". 

We all support each other because we are the only one's that understand this terrible world.   We know the fear, anxiety, and horrible dread of what might become our reality.  We all plan the funeral, or memorial or what ever the final event will be in our minds during dark times.  Some would scream at us because we are commanded to "stay positive" and not to even think the worst.  We have to think about it and know what we would do.  After the death of a child many often comment on how well everyone handled the impossible efforts of planning the funeral.   It is because they thought it through BEFORE it became unfortunate reality. 

I am watching a mom right now that knows in her heart her child is not going to make it.  Their journey is a long slower version but the handwriting is on the wall.  She is spending some of her energy on making the journey less difficult for those in  a like position.  Sometimes it is all you can do.  Help someone else. 

Lots of parents are upset as their children leave home and go to college or get married.  From the moment children enter our lives we have to start letting go.  We have to let someone else hold them, feed them, care for them.  We have to let them find friends, walk into school, have a sleep-over and a date.  It is our job to let them go and be the best they can be.   But never in all our planning and hoping and dreaming do most have to think about letting them die.

Of course it could be worse, they could become Republican Dawgs or Democratic Cougs. 

 

Someone Asked me about my PTSD

I don't have Post Traumatic Stress Syndrome.  What a silly thing to have at this point in my life.

I have Traumatic Stress Syndrome because we can't seem to get to the "Post" part. 

Jaxon, a lovely little child, died today.  No one was surprised, no one is shocked.  We are just sad. He was sick for a very long time and nothing worked.  Some kids have that problem.    He will be remembered for his smile.

Process....vs. Event.

I have been strangly upset and stuggled the last couple of weeks.  Sort of freaked out and tense and worried. A general milaise. 
 
We went to watch Lincoln the other day.  I had not had the ability to consentrate or focus on anything.  When we came out of the movie I read the E-mail about Rebecca. 

I know this will sound awful but I felt calmer. I knew we were headed to the next level of this journey.  Her parents knew it was over, she was no longer struggling.  It is a calmer place. 

 I knew she was not going to survive the transplant.  Too many organ systems damaged and too much going on with her.  Her ball of yarn was so tightly tangled the yarn had to be cut and she had to go.  It took almost two plus weeks. 

That is such a disconcerting time.  Everyone comes to say goodby not knowing if they should or it is goodby. Everyone is there and supportive but as the parents you still want to push them away because their love and support is pre-mature.  Hard hard stuff.

Death is not easy, nor should it be. There is this long struggle between coming and going, staying and leaving and lots of waiting in-between. You want it over but then you don't want them to leave. 

Birth takes 40 weeks and a day.  Leaving is a lifetime, only you never know how long it is going to be.