Back and Forth

In and Out
Over and Under
Up and Down
Happy and Sad
Joy and Sadness
Fear and Bravery
Determination and Capitulation
Despair and Faith
Agreeable and Recalcitrant
Healthy and Sick
Life and Dead
Obstreperous and Tractable


This list is much much longer.  The one that we focus on is

Remission and Recurrence or NED and Recurrence.
I thought it was bad that we don't ever get to know if "Recurrence is going to happen or Remission Sticks.  It is such a roller coaster and so much happens in between.   We are close to the four-year Relapse mark.  We have passed the 11th Anniversary of being in Cancer World.  I am finally starting to breath again.  AND THEN.

She gets a stomachache, or she is really tried or her back hurts or there is a small weird bump or her eyes keep getting conjunctivitis or ____________ fill in the blank. I don't like to be a constant complainer or worrier but I at my core I am worried.  I am worried.  That little voice sits on my shoulder and keeps telling me to not let my guard down.  I am not out of the woods.  There is no exit to this genuinely secret glen.

I visit with families that have just entered Cancer World.  I spend time with them imparting secrets about hospital living and Cancer World survival.  I go to kid's funerals.  Those that Cancer destroyed.
On one day, I visited with a mom who's 4-month little girl was born with a tumor the size of an orange and the funeral of a fourteen-year-old.  Needless to say, I had ice cream for dinner.  It was all too much.

Many think I am just crazy to keep visiting and going.  I don't want to be one of those people that walk away from family and friends when it is tough.  I have seen that happen with many.  It is too much most of the time but in reality it is impossible to do it alone.  I could never have done it without those that stepped up and lent a hand and gave at the perfect moment.

Emily is Gone

Another one... Another Loss.  It sometimes seems like a steady stream... She was a strong determined little girl. Her family was with her all the way..... Her family is exhausted and need lots of good energy sent their way.  Sometimes when I post these things people tell me they are sorry for my loss.  It is never about my loss... it is about the world's loss.  We all are less for what has happened here.  

Childhood Cancer is a tough one.  

Just Sent MEB to California for a Couple of Weeks ...... I am So So Lucky

As usual, this summer is not working out as I had anticipated.  Thought the child would be working in Spokane but as it happens, she is on a different kind of adventure.  Her summer is falling together with bits and pieces of this and that. 

Camp Sparkle for Gilda's Club will take two weeks.  It is a camp for kids that have had cancer somewhere in their lives.  Moms, Dads, Sibs... They spend a week doing healing things.  Fun things.  They all love Meb because she knows, she knows what it is to have cancer and to have lost friends to cancer. 

She is spending two weeks with her Uncle David, maybe more depending on how his summer goes.  She is going to get to work in the office with his great assistant Donna and learn the business side of things.  She is great at doing those sort of things and had lots of organizational skills. 

She wants to spend some time with her Grandma in Eugene.  Maybe for the Country Fair.... Maybe some time on the water somewhere in the Puget Sound,  Maybe some time in Central Washington with a metal lathe and some cutting torches,  Maybe.... The Summer is full of maybes... and Maybe that is okay. 

I decided yesterday that Maybe this is just a great gift from the Gods.  Maybe I we just need to settle an unusual summer,  one not dominated by BMT fears.  Maybe this is what it is supposed to be.  I just keep receiving notices and reading posts about kids that will not be spending the Summer with their Mom's.  

Our little world of Childhood Cancer is losing some bright futures right now. Young lives are winding down and people are just down right sad.  No other word for it.  Sad.  Emily seems to be done after cramming so much into her "life list".  This was the post this morning from her family.

We are losing our Emily. She is still paralyzed. I thought today would be the day, but this little girl is a fighter and came back to tell me how much she loved me, that I am the best mom that she could have asked for, and that she is so happy that she chose me to be her mom. She is not in pain anymore, but is struggling to breathe. Please pray that God brings her home to him, so she can dance in fields of flowers. And run and play with her friends Becca, Albert, and Sarah. And be greeted by my dad and her Nonna. This is heart wrenching to watch. As selfish as I want to be, I won't. I need God to answer my prayers!

This is a very personal time for us, I ask you please to respect our privacy. I have shared her for four years, i need this time for me. I am spending every second with my baby. It hurts so much to imagine that I will never have another hug or kiss from my girl. Or hear her say "mommy" the special way that she does. This hurts so damn bad. 

Enjoy every breath your child can take with ease.  

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/

Nothing Prepares us for the Death of a Child.

I remember when I was first pregnant with Mary-Elizabeth I was convinced I would never ever be ready to give birth.  I later looked back and realized all the sleepless nights, the getting up at at the oddest times to use the bathroom, all the discomfort that robbed me from sleep was preparation for after the birth. The birth for which I could not wait.... 

Life prepares you for what is coming your way. Little by little.  We roll over, we sit, we crawl, we pull ourselves up, we walk, we run... Much of what happens in the way of preparation happens in a simple way.  It sort of sneaks up and and at some point you are readied for the next task.  Unfortunately, sometimes the preparation is not for good things. 

I was visiting with a Cancer World Mom the other day and she related how she felt the early challenges with her child had prepared her for the Leukemia Battle.  I am a great believer in this idea and concept. It's the old "what doesn't kill you, makes you stronger" concept.  I have had way too much practice and experience, not in a good thing by the way.... 

Cancer Parents are reminded and buffeted every day with loss and the child death.  Every time a child dies, or one is dying or may die, the pit in the stomach is made wider and deeper.  As parents there is no adequate way for us to prepare for what is coming.  We all loose a gold fish, a bird, a cat or a dog.  We then loose our grandparents and extended family members and parents.  It sort of gets us ready for the next steps in the journey.  It paves the way, it gives some practice at handling the pain and emptiness that follows the death. 

 I so distinctly remember being unable to breath when my dad died.  As much as he is missed, it was okay that he was gone.  He had a great life. He did the things he cared about, he helped people, he ate BBQ in Magnolia, Arkansas, he read good books, he spent time with people he loved and in places he loved.  His lose was gigantic at first and then time seemed to make it okay.  At unexpected moments a memory will pop back or an item will present itself and it begins again.  The horrible feeling of emptiness piles up again.  It has been almost 20 years since my Grandmother died and I still think about sending her something or calling her.  

All of these parent and elder loses is the universe preparing us for the endings that are coming.  Giving us some prospective on the end of this life and how to best make the transitions.  Helping clean out a family home teaches us about the need to pare down and to focus on what little we need for the future.  The slow decline of a parent or a family member lets us practice and prepare for our trip down that particular rabbit hole and for their death.  

We are still always shocked and horrified and breathless when they die.  If it is sudden or if it is long and lingering.  We are still in a "state".  It should be a shock and heart break.  Those we lose are so important to us.  The greater the feeling of emptiness, the deeper the love we were able to share when they were with us in physical form.  It is a part of life, the ebbing and flowing of tides. 

So.... when a child dies before a parent we are stuck.  We don't know how to move on... even months and years afterwards, the wound is fresh and open and throbbing.  The reason being there is no way on this green earth for us to have any way to prepare. Death of a child is not supposed to happen. They are our little bit of immortality, the continuation of our story, they hold the future.  The pattern of understanding is simply dismantled in a blink of an eye.  It is over.  

I still have my child, she is away at school but we have looked long and hard at the brink and often slipped dreadfully close.  We have watched other's headed down that sad and solitaire path.  No one can join, relieve, help, or comfort those on the road to child loss.  They are on the mountain alone.  

From a comfortable distance, it is easy to say "why don't they stop treatment?"  "Why don't they go home?" "Don't they know it's over?"  I have to be honest, I have thought this at some point.  I guess it comes from seeing the suffering of everyone.  But then how do we ever be alright about stopping the treatment of our children? A cure, a reprieve, a new study, a new medicine. A new......   It is so so hard. 

Nothing ever gets us ready.  We have too much experience and know what our kids are missing during treatment and what they will be missing in the future.  We have to trim back our expectations and the dreams of their lives.  

When that lovely little squiggly life is put into our arms we just don't have it in us to think "Our child might die a horrible long agonizing death from childhood cancer."  It is not on the radar. At the beginning of life, we don't often think about death. 

I wish it was not on any one's radar.  It seem lately more and more parents are facing this horrible end to their child's life.  Keep them in your hearts. While we can't prepare, we can be supportive and helpful and if nothing else, sit and have a cup of coffee with them and let them tell you a good memory.

So here we are.... gliding along, not knowing others are really struggling...

That is a lie.  I know there are horrible battles going on every day, all day and every night. I know kids are dying and mom's are crying and people are getting horrible horrible bad, worse than you can imagine news.

As we head out of this current orbit around the Double Cord Blood Transplant  universe and head to the unknown galaxy of Post DCBT, I try to be a bit like Lot and not looking back at   Sodom and Gomorrah.  I don't want to know what is going on behind me but I know I am turning into a pillar of salt.  I have not found it possible to just walk away.  Or in my case, run like hell. 

It is so hard.  Sitting here tonight, working on my blog, trying to do some editing, figuring out what I need to do to publish and then I hear a ping.  A bell like sound that says I have a private message on Facebook.  I check and it says:  

I thought you would want to know my dear son passed away yesterday. 

I see those words and it is like a kick in the gut.  This is a kid that had 10 months of chemo and a major surgery and was clear and then, it was back just a few months ago and now it is over for him.  20 years old. I can just feel the balloon of hope and prayers collapsing around a devastated family and friends and his best friend that did a campaign for him to go to Europe.  (The hope was to take  both families but from what I can gather, it was just the two boys.   I am sure they had a great time. ) 

So I stop.  I reconnoiter, I check on my kid.  I gather the Momcologist around this devastated mom.  I relieve her of the responsibility of "telling" another human. I start to look for the obituary because I will go to the funeral/service.   I do a quick search and find the child's Facebook and Twitter account.  I heave a heavy sigh. I write a few words and do what I think helps and then I turn away and head back on our road to recovery.  

But I know it is like the Ray Bradbury story about the guy that steps off the designated trail when he goes back in time to hunt dinosaurs.  When he returns the world has changed.  I have stepped on another butterfly and the world will not be the same.  A bit of hope chips away.  

Every time one of these children die, they take a part of the universe with them.  How much they take depends on where they were in the child's life. The moms have a Grand Canyon, Winslow Crater, Pacific Ocean kind of hole in their lives.  The loss is never minor or insignificant.  It is gaping, hard to close and subject to multiple infections and complications. 

So we say goodbye to another child.  A family is decimated, the world looses amazing potential.   His last tweet:

If you do everything right, people won't know you did anything at all.

Why Mom's just don't get over the death of their cancer kids...

I am sure not everyone experiences motherhood the same way.  I know the instant I realized I was pregnant, I had a bond.  I was attached.  Of course she was sort of attached to me but I was attached.  It was like nothing I had ever experienced. My life changed in a way I didn't  understand.

I often hear about Mom's that had to "bond" with their child.  I wonder how that happens but I know even in those situations, the bond is there.  After we are clearly and permanently attached, then we have to become unattached so the kids can grow and mature and find their own lives. 

While the leaving the nest part is gradual, there are times the process is like lighting.  7th and 8th grade is one of the big pulling away times.  A time they are finding out who they are and how they fit with all of their friends.  It is a time many mom's mourn the loss of their babies but it is part of the process.  Little by little we let loose, they grow bolder, they develop out of family friendships.  It creates a place in their lives, creates a crease in the bond that allows a clean break to be made in a painless but significant way.

The entire process is mess up if at any time they enter Cancer World. Instead of a child gently pulling away, the Mother/Child bond intensifies exponentially.  All of a sudden not only are you caring for your child in an intense 24 hour a day, seven days a week way, your child is sick. You are on an adrenaline rush that lasts for several years.  No breaking away, no time to think, constant, intense caregiving.  It makes the bond so so much tighter.  Just imagine a strand of thread as the normal bond and a 10 inch cable made out of spider web as the bond created after Diagnosis. The cable eventually becomes the size of a 1000 year old Red Wood Tree. If they get better, the bond is always strong.

So here is the situation.  Child born, bond created. Child grows, child moves away in the natural course of things.  Child gets Cancer child moves back, no breaks not natural cut off, bond becomes super natural in order for the child to survive.  

But what happens if child dies?

Nothing is gradual. Nothing is normal. Nothing prepares anyone for the death.  It is like amputation without anesthesia.  And when it is done, the final most abhorant break in the bond occurs, Mom's are supposed to just go on. They are to be strong and brave and act like nothing happened.

Like many in Cancer World, we have seen the fall-out of the amputations.  I still hear from Guliany's mom in Turkey.  I hear from Shannon, and Kate and Kristi.  I see posts from Nyla's mom and Mario's moms.  I see the gut wrenching screams and pain and suffering of these Moms.  Jackie and Sheri and  Elizabeth or countless more.  Mom's that did all they could to keep their children with them.  Keep the bond going. Keep the connection.  

I don't perceive there is a difference in whether or not the child died suddenly or it was a long process.   They see other children with exactly the same flavor of cancer, same treatment and some kids do fine.  Some make it out alive.  They scream..... in pain about the unfairness of their child's death.  We need to let them scream and not make them feel like they are failures for not "moving on".

There is no way to figure it out.  Just don't ever assume that because the child died a year ago, two months ago or 40 years ago it is okay to ask how the mom or dad got over it.   The hole might have been walled off and there might be appearance of Normal but those parents could still use a hug. A hungry listening ear and understanding. 

So much potential. So much loss. So sad for everyone. 

When they die, are they really gone?

Ironically I had a dream I was able to give Michael a hug last night ... I just remember that I was so happy to see that he was standing... and gave him a big hug. I wish I could have picked him from my dream and could hug him for real ... Kristy Messenger....


Kristy is a mom that lost her child a few weeks ago.  He was a lovely young man, diagnosed in August of 2013 and had a form of ALL that would not leave his body.  By all accounts he was a great kid.  Loved and adored by many and the world will miss him.  He was destine to do more than die of Childhood Cancer. 

We can rail and scream and harangue all we want but there are so many than die.  Despite the "rare and unusual" it is not rare enough.  More like "less often than it used to be."

That being said..... when are they gone.  I observed the long slow dying process and the grieving process.  It is a journey as long or longer sometimes than  any of us could realize. 

Kristy had a dream. I still have dreams about Dad.  Some are odd, some seems so so real.  I think they are.  Many cultures and faith traditions attache 40 days of transition.  Jesus hung around for 40 days.  There is a special 49th day ceremony or prayers in the Buddhist tradition.  It takes time for the spirit and those left behind to adjust.

I don't dismiss anything anyone believes as wrong.  I think Dad hung around for a long time after he died.  I have memories of my Grandmother standing at the foot of my bed.  Mary-Elizabeth had a conversation with Joseph Boyle during the Navajo Healing Ceremony. 

I watch people put away the lives of their lost ones.  I see them plan the funeral, the memorial celebrations.  The anniversaries, the birthdays, the day they died.  It is hard to watch but I think it is a part of the process. 

 I don't think those we love ever are really gone.  They also now live on in Cyberspace.  I have not been able to resist the urge to post a note on a friend's page.  

Let's face it, if a ghost can turn on or off a light, they can certainly read their Facebook Page.  I think even Mark Twain would agree and he was pretty cynical about all of us as spiritual beings. 

I don't know if it is a spirit, a flash of a smell,  a ghost, a memory, a feeling or just a wonderful thought.  I don't think we ever totally lose those that have died.  We are so connected in life, how can that connection ever be severed.  Not completely.   

We live here and now.  We know we have limited sight and hearing and perceptions.  Anything is possible.

  Kristy, keep hugging that child every chance you get. 

 I am sure our loved ones are always watching.... 

Music is back.

I never realized it was gone but it has been gone for a long long time.   I am not sure why but it was. 

My dad was an adventurer.  He saw the world as a place to learn and explore.  He was curious and always had his nose in a book.  He carried that curiosity with him throughout his life.  When he went to college he squeezed everything possible out of it.  He took lots and lots of different classes, Music and Art Appreciation, Photography to name a few.  When we all went to college he encouraged we explore our passions.  

I took a few classes, lots of history, Zoology even though it was not in my major or minor. I did take Music Appreciation.  I learned a lot in both classes.  I fell in love with certain pieces of music.  One was the Mouldau a piece by Smetana.  It is the musical story.  The river starts as a small stream and moves to a big wild river, then on to a stolid reliable river and then ends up in the ocean.   

https://www.youtube.com/watch?v=kdtLuyWuPDs

It made me listen to music differently and in a way I never had before.  I learned about recurring themes and refrains in symphonies and other such pieces of music.   

I have historically loved lots of different kinds of music.  No fond of Rap or long guitar rifts. I think mostly because I don't like loud banging.  Enough of that goes on in my head most of the time.  I don't need to have it enter from another source. Some Jazz is okay, not all.  Squeaking does not make me happy.    But some music resonates with me in ways I don't understand or why some and not other.   Some melodies, some lyrics, some passages.  I remember sitting in front of the stereo player listening to musicals we owned. 

Over the past few years music was replaced by NPR.  Seldom did I play music in the car.  If I am traveling long distances I most often have Pod casts playing or a book going.  If you asked me to go to a play I am much more likely to go than to a listen to music.   

Something started to happen.  Some music started to creep back in.  It is seldom background noise, it is something that takes part of my brain to listen and it has not had any energy or extra power to do so for a long time. I think all the processing nooks and crannies have been filled with ANC, BMT, CPR, NED and all the rest of the stuff in Cancer World. 

The ability started to wake up bit by bit.  Patty took me to a U-2 concert ( not YouTube) I went to see Char, I found time for Mindy Smith, Rod Stewart finally came to town when I could see him.  James Taylor and Carol King performed together.  I made the journey to see Dixie Chicks.  Bit by bit.  Noise gave way to music. 

One of my friends mentioned he had seen the Vancouver Symphony play James Bond music and I started poking around the Seattle Symphony home page.  I had not looked at the schedule in a meaningful way for a long time. Maybe I could sit and be absorbed by music for more than 20 minutes. Maybe there was room in my being again.   We received tickets for a Pops performance at the Symphony.   I ended up going with my invisible friend Juliette Pinette. (I don't call her imaginary because you are the only one that can't see her.)  It took about 12 seconds into a Sousa March for the levee break. 

 Oh yes, music is back.  I bought two tickets before I left, went with ME last night to see Brahms' Second and have nailed down a subscription for the upcoming year.  

Something is currently compelling about complete absorption into something so complicated and amazing. Something not of this world.  It is a sort of drug.  If I could be there every day sitting in the darkened quiet listening to the amazing sound from horns answering the violins and the triangle.  The simple triangle.   That simple moment of clear sound. 

I guess the Music is back.  Anyone want to join me for a bit of Beethoven or Stravinsky. No fur necessary. 

Shifting Focus

Sometimes it is hard to make the shift.  Sometimes we have so much on one plain we don't see the other side or have another view of the world. 

I was reminded of this when I saw this picture.  I clearly stole it from an amazing photographer.  

 Are we coming or going?  Beginning or end? Start or finish? I guess it is the old "To Be or Not to Be? That is the question.

I think I am so beyond the worry and concern.  I think I can help other's who are starting the voyage but it takes just a moment, a note, a post, a call, an old picture, a question, a piece of paper to have it all come back in a rush.  Classic PTSD. I wonder when it does go away?

Meb drove herself to the eye doctor today.  She went to see Dr. Balter.  The same eye doctor who found the swollen optic nerves 10 years ago.  10 years of our lives have passed since that fate filled day.  120 months 3650 days.  One thing I can say is I sort of really know what has happened during these last 87,600 hours.  Oh do I know what has happened.  

Okay, so I have decided we are taking off.  We are not landing, we are not sitting around on any old daisy and just waiting for life to speed by too fast.  (Speeding is only for Iowa highways)

Lots Out there.

Lots of choices, lots of crazy, lots of pain.  There is a mom who's three year old died. She does not trust she did the best she could.  Best hospital, best questions asked, best efforts to help her child.  She is in so much despair.

There is a mom with a 17 year old that went to his prom and things were going along and his ALL came back just before transplant, with a vengeance and nothing could or did stop it. 

There is a mom who is waiting and watching her child slip a way.  The long slow unwinding of a young life.  Just like birth, death takes awhile.  It is a process.  Sometimes a very surprising long process.  

I have imagined having to say Good by to my daughter.  I have wondered if it would be sooner rather than later.  I was deeply frightened the first time but this last time was not fright but stark terror.

There were times, I was not sure how much more her body could take, or she could take.  
I was at the hospital yesterday and saw a tiny little girl on a bike.  She was working so hard to ride.  So happy to be doing so. She had way too many pumps on her pole to be anywhere close to done.  

I handed off a Wishing Rock bag to the dad, told him he could get a little insertie thing for the heavy pole, said a prayer and walked on.

This sick kid thing seems so surreal.   Stacie is with her daughter Allie (not Yakima Allie). She is holding daughter's hand, rubbing her body with cannabis oil and waiting for the inevitable.  The time when she will take her last labored breath.  The time her spirit will leave behind the cancer ridden, chemo, radiation, surgery ravaged body behind.  She will grieve and rage against the universe and will be surrounded by those that love her and her other children and she will somehow with some super strength, walk out of the hospital and bury her child.  As she lets her grief be known, we will all walk with her and feel the bit of her heart that will never heal. 

I don't remember the child dying part as being part of the bargain.  No one should have to complete the birth to death cycle. No one should ever have to leave the room or the hospital or the hospice again. 

I think about how Mary-E just headed off to see the eye doctor.  10 years ago this week, she went to see him and our journey into Cancer World began.  I am relieved she is able to drive and stay up late and leave the lights on and complain about my cooking.  I love she can do her laundry, is looking for a job and still has a sense of humor.

I am cognizant every single day  of the blessings AND the sadness swirling around me.  Both need to be honored.  

Allie is in the blue jacket.

Great Crow Cacophony

The murder of crows and their cacophony woke up everyone.  Something was happening and we were not paying attention. 

I am sure there are lots of parents that feel like this when they are trying to find out what is wrong with their child.  Everyone has a diagnosis story.  

Ours was swollen optic nerves, two months of scans and exams. Finally the sneaky little blasts flooded ME's blood stream and we were off to the races.  (A race we still run and have had to do again.)

Bloody nose, cough, weird bruises, pain in the legs, lethargy, pain in the stomach.  Often there are numerous trips to the doctor, the emergency room.  

Then when they figure it out it is full bore press.  There is no time to even breath. Life Flights, long admissions, surgeries to place ports and piccs and Hickmans. There are consultations and scans and blood given and taken away.  Huge hubbub..  More noise.  

The noise never ends. Everything beeps. Even things that were formerly silent. Thermometers, IV pumps, phone's, call buttons, beepers, fire alarms.  Everything is trying to get your attention.  It is sort of like "signage overload".  When faced with too much information, we all just shut down. 

I still wake to the pump alarm.  It happens mostly when I am in that weird in between place of kind-a-sleeping.  My mind had stored all the sounds for use at another time.  Sort of like a squirrel and nuts.  

This morning the Crows were alarmed.  They are not quiet about their alarm. Everyone in the neighborhood heard them.  That is what they wanted.  They wanted to be heard and to be acknowledged.  I am sure they are like us, the Cancer Moms and Dads.  We are sitting in a corner of your world and we are screaming as loud as we can and no one truly understands the noise.  We have a doctor writing articles about how cancer is very rare and very curable. We have a family that wrote a book wishing their children had cancer and not autism. 

Hey, we are all just making lots of noise over here and we need some attention.  Something is wrong. Very Very Wrong.  We are a small group, a rare group, a very dissonant group. We have learned we have to be because what we are doing, is something lots of people don't understand. 

We understand but please know we will keep up the noise for as long as it takes.  It is a good song, a necessary harangue.