Life Changing Moments

I spent some time in the Central Valley.  A place we all know of, but few visit.  It is where our food comes from. Lots of our food.  Every square inch of the valley is producing lots and lots of food.  Who knew grapes were left on the vine to dry and become raisins?  They cut the canes and let them sit for a while and shrivel.  Love seeing "3 avocados for $1.25".  Oranges on the trees, yards with fruit trees, all orange and yummy this time of year.  Need some lemons, walk around the block and help a tree be unburdened a bit.

The Valley is flat and stretches for miles.  It is dusty and windy but a bit of rain fell.  When the wind shifts there is the odor of cows being raised too close together.  It is a lot like much of rural/agricultural America.  Lots of little towns, some, like Visalia have a real down town.  Walmart is there but kept on the edges.  It is California in some ways: In-n-Out Burger, Orange Trees, crazy drivers.  It is also sort of Southern Idaho: Big Pick-ups, large fields needing to be harvested, great Mexican Restaurants, the babble of Spanish.  

Look west and the Coastal Range is in view. Then, 50 miles East, the beginning of the Sierra Mountains.  They spring up from the Valley floor.  A bit of foothill action but when you start to climb, you climb fast.  Up, Up, 1000 feet, 2000, 3000, 5ooo.....Weird trees cover the sides of  the mountains. Some deciduous trees, mostly big pines and scrub of some sort. 

 Then there are the rocks, big rocks.  The kind that could down a Seattle ferry if it dropped on it.  Big.  Did I mention big.  Huge, massive

• colossalstar
• enormousstar
• extensivestar
• gargantuanstar
• giantstar
• giganticstar
• greatstar
• humongousstar

• immensestar
• magnificentstar
• mammothstar
• massivestar
• monstrousstar
• monumentalstar
• toweringstar
• tremendousstar

• vaststar
• behemothicstar
• bulkystar
• cyclopeanstar
• elephantinestar
• grossstar
• immeasurablestar
• jumbostar

• leviathanstar
• lustystar
• mightystar
• mondostar
• monsterstar
• mountainousstar
• outsizestar
• oversizestar

• planetarystar
• prodigiousstar
• stupendousstar
• titanicstar
• wallopingstar
• 
  
• whoppingstar

 rocks..... get my drift.  So You climb, you drive along and then you enter the valley through a very long, dug by hand tunnel.  This is what you see

It is simply magical. I don't know what to even say.  I have seen the pictures.  I simply was not prepared.  I got out of the car and I just sat there with a dropped jaw.  I was sort of like the first time I saw the Grand Canyon, the Leaning Tower, Devil's Tower, the Pacific Ocean, a whale, a hummingbird in the snow.  

We all talk about God and Creation and the Big Bang and the Universe. We are amazed how fast an e-mail can travel or simply the wonder of electricity.  But this. This place is a reminder that good and beautiful things take a long time.  They can not be rushed or pushed or even nudged along. 

This special place was made with the gift of time. First the mountains pushed way way up, the water brought them down and a valley was born.  The world turned cold, the glaciers filled the valley and then moved the rocks with them.  Left them as the glacier moved and worked and pushed into the central valley.    

I have no words, just a reminder that important things take time. A lesson I need to learn as we approach year three of the transplant. 

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/

Moving Forward and still Staying Connected.

She is off treatment, she is back at school, she is thriving. She even missed a class this week because she slept in... how normal is that?

So there is a part of me that wants to step out from under the Cancer World Cloud and move on. We are done, it is over there is no looking back. Wouldn't that be great. Wouldn't that be a perfect thing to do.  Any sane person would do so.  

But we Cancer Mom's are sort of like holocaust survivors. We might have not been in the camps (our kids were) but we carry the scars with us.  Our kids have the tattoos from radiation but we had to be there with them. We were there, we were trying to keep them alive and keep them sane and keep them safe. 

I want to flee and pretend it did  not happen.  I want to flee and pretend it won't return.  I want to think it is done.  But we all know it is never done.  No matter how far out, no matter what the research says... it is never over.   

Someone shared this little picture.  Sort of a reminder that it is never over. So I guess I have no choice but carry on. Work on a book. Do something great to fill the hole cancer dug in our lives.  We are strong and determined and nothing..... will keep us from doing everything we can with our lives.  Small steps.  Each more normal than the last. 

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. 

    

Wishing Rock Dreams....

We had another meeting last night.  Out on the patio, warm, Ice Tea.  Good ideas, good conversation.  No cookies. 

Shannon Huber came.  Jaxon was her special little guy.  He has been gone for a year.  

He was a special little guy.  

After everyone left, she and I had time to talk.  We both agree this Wishing Rock thing is a way to stay connected in a meaningful way with those that have followed us at Seattle Children's.  There is such a need to reach out and touch those that are starting this process.  We are hoping to do a small thing. A meaningful thing.  

We all want our time in Cancer World to have a good purpose.  We need light, not dark.  We need to make sure the hours we all wait, the millions of dollars expended, the long suffering of our children have purpose. I think this project was born from a desire and acknowledgment that  as humans we need connection.  It is important to reach out touch and do a kind act.  More important, the connection needs to be made. 

So, we are off and running.  Things are falling into place. We are going to make this a great thing. 

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.

The Road To Transplant

I never wanted Mary-E to have a transplant.  We had watched our friend Elise go through the process and it was horrific.  GVH, Mouth Sours, the pain, the side effects (or is it affects), the meds, the pain, did I mention the pain.

I so did not want her to go through transplant that I argued with the poor new fellow John Carter when he told me that was what was happening.  I knew a Double Hickman meant transplant.

But, once you realize it is the only chance, the only way your child will survive, the only option in this day and age, you want it so so badly. It is the only thing you can think about.  Is it possible, can you make it, will it work.

But.  You have to get there.  They make you jump through hoops and crawl through tunnels and into deep basements with spiders and giant scary things.  There are endless tests and lots of hard hills and mountains to climb. 

The irony is your child has to be in perfect health.  There has to be nothing wrong. There has to be no problems with organs or cavities or.....This with children who have been radiated, injected with massive amounts of chemical that make them sick.  No colds, no apparent infections, no cells wandering around trying to cause problems.

You are so so careful because you want it so much.  They make the bar really high so you want it.  They make you beg for it, pay for it, pray for it. 

GIVE ME MY TRANSPLANT NOW

Transplant is a saving grace.  It is the one method of treatment that can save your child.  These docs don't like to loose. They want to save every single little person.  Transplant has given them a tool.  It is the last life boat leaving the Titanic.

15 months after transplant, I am finally being able to look back and see progress.   Real progress.  I know there are challenges and there are lots of scary things in the future.  But transplant and only transplant give us that future.

Alistaire, our sweet lovely child and her family are trying to merge on to this road.  They have been shown the on ramp and are being told they Might have a chance to join, maybe, if they are good and universe agrees.



They have only one road to take.  We are all prayer the ramp clears of all traffic and construction and other

obstacles and http://conglomerationofjoy.com/author/conglomerationofjoy/they are able to move forward.
 

Sometimes Dreams come true we are waiting for the the next bit of great news.

WE had an appointment today. Things are so good we don't have to go back for 28 days.  A month, 2 fortnights,40,320 minutes. So what great news!  Now we have to call if she something comes up. So we have to watch for spots and bumps and other things that cause worry.  Pimples, weird food craving, sudden growth of purple and pink hair, a desire to clean the basement.. that sort of thing.  Mostly we have finally reached the point most people reach on day 100.  I will take it.  I will make sure we enjoy every one of these 28 days. 

My focus is shifting to help mom work on moving to the Senior Dorm and recovering from impending hip surgery.  She is a tough bird and we all expect her recover to "exceed expectations" I also am aware there are huge risks in any operation.  Mom is very clear on her wishes and she is going to be fine.  That is my story and I am sticking with it.  I also always have an uneasy feeling in my gut about the whole thing.  I know too much.  She will be fine. It will be fine. Fine I say, Find I say.

It is good.  We were able to see Kaylin today. She is in love with Justin Beiber and he met with her when he was here.  It made her really really happy but what made me happy today was to see her walk into the hospital. Since September 2011, I had never seen her out of one of those large jogging strollers. We saw her today and it was wonderful. 

 You would not recognize her.  She is coming off prednisone and her face is going back to normal but best of all her hair is getting really really long.  What a great gift.

 

So now we wait for the results on Alistair.  She is a special little friend of ours we hold in our hearts and squeeze with all our power.  This is a much loved little girl and her relapse was so so awful for everyone.  When I told M-E she went completely silent.  She went to her dark and quiet place.  It took a while for her to return.  When she did we delivered a Bitty Baby.  Nothing more we could do but pray but always good to have a distraction while waiting.   We visited for a few minutes today and are waiting to hear she is in an acceptable kind of remission for a transplant.  Her cancer (AML) is particularly uncooperative sometimes.  It does not like being poked and prodded. But transplant is the only option and there has to be a bit of a miracle for that to happen. 

 

I thing we are due for a few Miracles.  I need one for her.