The Hair and How it Falls

Our Journey was a bit different than many. Mary-Elizabeth started off as a search for the reason she had swollen optic nerves.  No one ever said the "C" word but after about a month plans were made to do a biopsy of her skull/brain. 

Now wouldn't you expect that I would have been overwhelmed with concern about my child having her skull drilled?  That would have been a reasonable response to the fact my daughter was going under the drill.  

To my shock and disgust, my first thought was "How much hair are they going to have to shave."  When we were told she was going to have chemo and radiation, I secretly wondered how long before the hair was going to go. How shallow can anyone be? Life had taught me how mean girls can be and how much we value "hair." 

Hair came and went and came and went and came and went and then went again, I began to be more accepting of the process. Sometimes it was mouse brown and soft. Garrison Keiler met her, and while I tried to take a picture she smiled, and he petted her soft silky unreal hair.  He commented on how soft it was not knowing it was Chemo Hair.  It came in curly and sometimes straight. It sometimes fell out for a reason, and other times it fell out for no reason.  I do know that she always complained when it was coming back in because it hurt.  Who knew hair growing back could hurt?  

When it forgot to come back, well.  I was just sad.  Mostly sad for her but still sad.     

Seems so silly but I want you to know that the mom's do talk about it.  I don't think we really care about hair on our kid's heads, but it is still just one more of the things out kids lose.  In actuality, I had never seen my daughter's head without hair.  She was born with a fully developed shock of black hair that never left her head. 

During the first few rounds of chemo, she kept much of her hair.  I am always grateful that she had some hair when she had spinal/cranial radiation.  It fell, she left enough DNA in the house, the car, the yard, the tub, the shower, the kitchen, the pillow cases, everywhere there were bits of Mary-Elizabeth.  It came out in ways that were not really noticeable. 

We joked about it, but it was hard.  So hard. Our dear friend Alison helped her buy a wig for the totally bald times.  Mary-Elizabeth soon learned wigs are hot and some of my friends thought she had too much product in her hair.  She gave up the wig after awhile and just let her beautiful head hang out.  

During her relapse and transplant, she was given a combination of drugs that hated hair. It came out in Movie/TV hair loss fashion. Handfuls and brush-fulls.  If you tried to sit with her and she put her head on your shoulder, it was covered in dark black strands of beautiful hair. 

We have never seen that hair again.  Too much chemo, too much radiation, too much prednisone, the death of her thyroid, GVHD. The usual "long-term side-effects."  She avails herself of hormone replacements, creams, potions, lotions, treatments.  It isn't the end of the world but just another factor she addresses every morning when she brushes her fragile hair.    

So why am I writing about hair now?  Why the whining.  Well, we are moving.  Because we are moving, we are going through the house and uncovering years of forgotten items.  I came across the notebook I put together during the first couple of months of her treatment in August of 2014.  In the notebook was a lock of hair.  Crudely folded into a piece of paper.  No date, no time, no real identification. 

When I touched it, I knew.  I understood what it was.  It was the lock I clipped before her first infusion.  The first dose of chemo I let them put in her body.  The hair from the time before we entered Cancer World.  I flipped through the notebook and realized it was filled with pages of anxiety and sadness and fear.  It was full of anticipation and understanding about what was going to happen to my lovely smart, kind and lovely daughter with a full head of hair. 

I wondered where I would keep this memento.  I seemed wrong to toss it. Or burn it. Or frame it. Or weave it into a locket or a bracelet of any kind.  I found a place.  A page in her baby book that hair from her first bang trim, her first curl and her now her last lock of Normal Hair.  

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. 

  

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.  

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.

Been Dragging My Feet

For reasons unknown, I have not been able to make myself go to Children's Hospital with Wishing Rock Bags.  I have them packed, I have sorted, I have great new People Magazines, but I have not been able to go.  I plan it and then when it is time to leave, I take to my bed to watch Keeping Up With the Kardashians.  Yes, it is bad.  It can be very very bad.  

I had a million and one reasons for not going.  I was tired, I might have the bubonic plague, there is a terror alert, and I am on the top of the list. They won't let me in. The Seattle Guild Society was right, these silly little bags are meaningless. 
Then I had to go.  I made myself go.  I told someone I was going.  I had to do it.  And I did.
I went.  And I remembered why I do this.  I let someone tell me their story.  I listened to them, told them hospital survival secrets and let them know about Midnight Bacon. 

Something about the act of giving back and listening and just being there is so potent. We don't even have to know each other's names we just know.  We know the deep-seated fear, the questioning of everything that might have caused the issue. The wondering "WHY" no one found it earlier. The realization that no matter what you do or what you let them do to your children, it might not be enough. It might not work.  It does not work sometimes.  It might come back. The treatment might bring more cancer and an endless list of long-term side effects.  Knowing the fear never goes away.  Knowing the future is something other's can focus upon because we have just this moment in time.  

Life is so much more than what we had planned and more about what we can do this moment.  It's okay to watch your friend's lives continue.  Plans being made.  It is part of your stepping off the path.  

When I was in highschool, I read a Ray Bradbury short story about a man that returned to Dinosaur times to hunt.  There was required path, and you were only to kill the appointed Dinosaur.  It had been determined it would die soon and not affect the timeline.  This man stepped off the path and upon return he found a small glistening blue butterfly on his boot.  When the doors opened to return him after the hunt,

everything seemed familiar but were slightly off.  It was not the same.  It is never going to be the same.  No matter how hard we try and no matter how hard we pretend and no matter how hard everyone wants it to be the same, We stepped off the path.  

The only thing we can do is help those behind us.  
So.... I will consider myself cured of the plague, be kind to security and keep at it.  Besides, I'm almost caught up with the Kardashians. 

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".  

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.  

Cancer Moms

WE are Strong  and we are determined.  We are also very tired.   It was great to spend some time with my peeps.  It is amazing when I look at this picture.  Some have kids that have died. Some are trying to keep their children alive. Some have faced horrible decisions and struggled to return to normal.  We are so so thankful to have met and shared the journey with such powerful people.  

When I look at this picture, I realize there are bits of joy that leak out no matter what.  No matter how bad it has been and how hopeless it seems.  Joy wins.  

Mixed Blessings

Oh dear.  Lovely lovely day in Seattle. 

Beautiful morning, nice breeze, calm seas, great people.  How could anyone be sad or upset? You Ask.  We were there to remember Katie Elliot.  Someone that left because of Childhood Cancer.  Someone that fought a good fight. Someone that spent her short 18 years squeezing as much out of life as she could.  

We met, we talked, we re-connected.  We supported the kids that have survived. We cried with the Mom's and Dad's with less successful stories. 

Katie will never be forgotten. 

Making Memories after Diagnosis

 There is a certain urgency when a child has been diagnosed.  We rush to do so many things. Memories have to be made and made NOW. 

What if these are the last of the memories? What if we don't survive long enough to go on our Make-A-Wish?  What if there is no time for  high school and college and marriage and the first job and the first car and the first broken heart?  What if? It is a panic that strikes the heart of each and every parent, grandparent, relatives and friends.  We have to make memories NOW.  We have to take advantage of this time, this moment, this......
everything. 

Well, take it from an expert, there are plenty of memories being made each and every moment.  Each day, each blood draw, each visit from the Child Life, Social Worker, Ukulele Guy.  Now granted not all the memories are good.  Treatment will erase many memories, but there will be memories. They will be a different kind and those that share them will be altered by the events. But  often there are bits and pieces of good memories.   

We are altered to our very core.  On a cellular level.  When your child faces amputation, total body radiation, red, blue, yellow chemo, and endless invasive procedures, bone marrow transplants,  it has to change you.  As you watch people you love perish and their loved ones writhe in  pain for moments, and hours and months and years, it is hard not to be transformed. 

Human beings are made up by the bits and pieces of who we are and what we learn and experience in life. We absorb things every day. We also are a product of what we remember.  Often we are a bit like Kimchi and need to sit about and wait until we are done.  But eventually there is a good end product.

The moment we hear the words "Your Child Has ____________________ we begin to incorporate the new "Memories" into who we are and will become.  

 It is a good reminder that we should value, treasure and work on this every single day....  

Mary-Elizabeth has become a great writer.

In my life time I have been through cancer twice and spent 10 year dealing with it and its effects, but I am still standing here. I am lucky. I call the time spent dealing with cancer as being in  Cancer World. Unfortunately, ever day new people are thrown into this world, floundering trying to figure out what has happened. It is this reason that my mother started a nonprofit called The Wishing Rock Project. This is a small, but growing group of people reaching out to families, at Seattle Children’s Hospital, whose child have been touched by cancer and whose families are struggling to survive being part of Cancer World. We create and deliver bags filled will essential and special items that might help as the new families begin their pain staking battle.  We found the items really helpful and while the collection is sort of weird on the surface, each item has a deep meaning.  

My mother has been delivering the bags, but I knew I should be the one delivering so that the parents can see that surviving is possible. Despite my knowing what was right, I was terrified because I wasn’t sure how seeing a child in the same position I was in just 2 and 3 years before was going to affect me or how many bad memories it would bring back.  I finally  summoned up the courage to deliver a bag to a family that had been in contact with Wishing Rock.  I arrived and introduced myself to the parents and the look of hope on their faces when they saw me will stay with me forever. I talked with the mother sharing my wisdom of what to expect and answering questions on how to deal with various situations that might arise. The healing power of Honey Nut Cheerio, Metro Mint Water and cheese cake can never be under estimated.   I also sat down with the 6 year old girl and told her despite how yucky she felt right now, things will be better. Showing this family that there is a light at the end of the darkness was the best feeling I have ever had. I learned I was strong enough to help others in the same situation I had been in and make their scary situation a little less scary. I now deliver bags when I am able and do not plan on stopping anytime soon.