I've Been Asked Why I Stopped Writing

The longer one hangs out in Cancer World, the more apparent it becomes that it is not a wondrous, happy, healthy, healing place.  It just isn't.  No one exits without deep permanent scarring. The shocking kind that can be hidden, yet still exists under the long sleeves.   

I often wonder if anyone is really interested in watching the Cancer World train wreck day after day, week after week, year after year.  Does my writing help anyone?  Do I do it because 12 years of living here have taken away my ability to write about anything else? Does my constant haranguing make people desensitized to the entire journey?  Cancer World is simply a grind.  An endless plodding grind. 

 One with an ambiguous ending. 

People want happy endings, evidence of great triumph over adversity and life-affirming stories.  The grim reality of Cancer World is there are no happy endings.  Many many children die long horrible deaths.  Some receive reprieves and believe they are done.  Families celebrate "End-of-Treatment," "Cancerversarys" "One Year Off Treatment," "Last Dose of Chemo."  No Hallmark card fits any of these situations. Very few children ever hear the words "Cure."  They are told they continue to be "NED." 

                        No
                        Evidence of
                        Disease

Many are told they are in "Remission"  This is not a word that warms the cockles of our hearts. Simply a reprieve.  Some are short, some are endless.  We all live with the fact next word we will hear is "Relapse or Recurrence."  We know cancer comes back with a vengeance.  There is no way out.  We are here for perpetuity. 

Mary-Elizabeth is currently doing great.  She seems to have settled into her little universe of side-effects.  She handles the GVHD.  She sees the endocrinologist. She manages her hot flashes. She weeps on occasion for the loss of the chance to have a child that carries her particular group of DNA.  She is hyper aware of any changes in her body.  A bump, a sneeze, a strange feeling of concern.  She addresses each of them.  I only try to put my worry in the way back of the fridge and hope it is not growing something disgusting. 

Others have not been so lucky.  We have met so many people over the years and know many many families that have come to the end of the road.  They simply take their children home to die.  

These deaths are painful and agonizing in so many ways. There is no way to describe the veiled anguish of every Mother's post.  They put their best face forward and try to have something happy to say.  

They acknowledge they are counting on God to perform a miracle and have their child with them again. Yet they know, they know all too well, the time of the last smile, the last breath, the last gentle kiss is coming.  The sand is rapidly escaping the hourglass, and there is no way to stop gravity.  The entire process is just overwhelming and excruciating. 

Time does not heal the wound of losing a child.  The pain does not lessen or diminish in few months or few years. This is a gaping, car-swallowing sinkhole kind of wound that never ever heals. The pain of losing a child remains forever.  Life does not get easier, nor does the pain lessen.  

The reason we fight so hard to beat such a demon is that somewhere in our mother souls we know.  We know the depth of the love, the deep well that burrows into the center of the earth and out the other side to connect with the Universe. We know how much we love our children and losing them is not an option.

I ended the blog because I couldn't keep from talking about all the sadness that had been the last few months.  There had been so many losses of such lovely children.  Too many funerals, too many "Joyous Life Celebrations" too many deep sighs choking back tears moments.  

 I don't keep count anymore.  I cringe every time someone celebrates the last dose of Chemo or the end of treatment.  I just hold my breath for them.  I know too much. 

We were at the end-of-treatment to only have the monster return seven years post-remission and 57 months after the last dose of chemo.  What the Hell!?   She is now 5 years post-transplant, and no one is talking cure. No one has said we don't have to worry anymore. No one is saying much.  I think we are all just waiting.

 I certainly am.  

Cliff Notes

They were useful in their time.  I know there are folks reading this blog that never used them and don't know what they are.  To catch you up, they were the precursor to Google, Wikipedia, and instant streaming movies.  If you didn't want to read Moby Dick, ( I read it all the way through and can discuss whale blubber with the best of them.) you picked up the little yellow and black book.  

It is how some people survived college and even high school. 

But like many short cuts, you often miss something important. 

In Cancer World there are no short cuts.  No easy way out. No way to skip a difficult chapter.  To make matter's more concerning, they add chapters and change the ending all the time.  I was reading an article in the New York Times Magazine about romance novels.  Judith Krantz pointed out there always has to be a happy ending.  Not so from where I sit. 

Today is just one of those days.  Allistaire is in the hospital with a blood infection. Her mom is by her side in stark terror of what this means.  Allistaire is supposed to be getting stronger, and Jai is training for Obliteride ( a Fred Hutch fundraiser).  Sierra is locked up in isolation because of a bad bug.  Jade is not in full remission. Violet is facing an MRI tomorrow. Alex keeps slogging through chemo and is a teenager that just wants to "BE DONE!" and there are a million other kids facing "Scans" 

We are hoping to be done with our Cliff Notes but only know that we have to be happy for "NOW".  As a Cancer Mom, I see

what cancer has taken from Mary-Elizabeth and worry but know I am not alone. 

Because our children are pure gold, September is Childhood Cancer Month.  Keep them in mind.  

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. 

If you ever doubted.....

Children are resilient.  Lulu is up, talking and here is the most recent post from her mom.  It really really does say it all. 

does anyone in the royalton are have a large pet carrier i could borrow...OREO is allowed to visit lulu but his FAT BUTT just broke ours beyond repair......

And by the way... I wish pets were allow to visit at Seattle Children's...

This crisis has passed.  The universe is good.

Back on the road to a cure.... again. 

Hoping for Good Results Tomorrow.

Here is the newest  and for once Good news.

Lulu Ysarua Martinez No bleeding on the brain!!!!!! To many meds and sedatives is the problem so doctors are working on that....will do lung xray in morning .. going to bed...will update in am unless there is a change...sweet dreams my lu...we are all holding you and praying.... just keep your spirit alive and keep on fighting you are amazing....