The Chicken That Saved Us is not just about Autism

I have a friend who has a friend who wrote a book called The Chicken Who Saved Us by Kristin Jarvis Adams.  

I bought the book because I too have a friend with a chicken and an Autistic Child. It is about a boy and a chicken with a deep connection but more than that, it is about a Mom seeking to help her son with a severe chromosomal problem.  He was a child with T8M, a defect that puts an extra chromosome in some cells but not all of them.  It is a very rare and it affects patients differently. 

In this case, Andrew's bone marrow producer attacked his own body and was slowly killing him.  After much falderal, it was deemed he should have a bone marrow transplant at Seattle Children's.
As the mother of a BMT child, I was hooked.  It was absorbing to read about a Non-Cancer Mom's experience through the process.  It was like watching my own daughter's journey.  
Child is sick.
Child is eventually diagnosed.
Child is deemed ready for transplant.
Child is made ready for transplant.
Child is taken to the verge of death and transplant happens.
Child hovers on edge of death for several days.
Child recovers. 
Child's family tries to get back to normal. 
Major parts of this story are my story. Major experiences are my life for the past few years. Major parts ring so true.  
As I read this book, I realized the "Aloneness" of the mom is so apparent.  I realized that while Seattle Children's does amazing things, they are missing the Mom's connecting to Mom's piece.  I know they try.  It is not enough to have a meeting at the Ron Don house or pizza in the conference room.  The efforts to reach each other has to come from us.  Those of us in the same aquarium.  We need to be the ones that reach out and connect to each other.  
Being a Cancer/BMT Mom is such a fragile and unusual thing to be.  It is a combination of Tigress, Jelly Fish (the stinging kind), contemplative nun, superior researcher, knower of all things.  It is not possible to understand what it means to be a Cancer Mom.  You can look at one and imagine you are one, but you can't ever comprehend what it is to be in this small well defined and unique group.  
As a group, we keep trying.  Reaching out. Making noise, trying to send those lifelines to those who are deep in the battle.   I think maybe this book will help other's realize the needs and complications of those in our exclusive world. 
Read this book to understand your journey and to help those currently on the same path. 

Going Home

What is it about home?  I guess, as parents, we should be happy that our child wants to return.  It means we have done a good job. We have made "home" a haven, a place of rest and rejuvenation. 

Sometimes the journey is to provide solace for the last days of a child or a parent or a loved one.  Home.  A place of good memories, hard times conquered, times of peace, times of joy, times of sadness.  But most of all it is our sanctuary. 

Why do we question a Salmon's desire to return to the place of its birth.  As humans, we seem to want to return to our place of comfort and relief. Our own bed, our own "stuff," familiar sounds, smells and simple things like dogs barking in the morning. While Mary-Elizabeth has never been explicit about her wishes, if a choice should have to be made. But whenever a child knows they are done with treatment and wants to go home, she is very adamant. She wants to know they were able to do so.  

We have not had to face the choice, but we have known those who have.  We have been part of those discussions and have tried to be helpful.  Sometimes it simply is not possible.  So much has been done to treat a person that such a move would end their life before they could make the journey.  I know after the transplant Mary-Elizabeth had 8 or 9 IV pumps.  I don't think our electric system would have been able to handle the power needs. Sometimes distance and medical fragility keep it from happening.  Sometimes the thought of the death of a child being part of the continued fabric of a home is the real consideration.   

I recently re-read the blog of a special friend of our Jai Anderson.  She took Allistaire home to continue her journey from a place of comfort.  Allistaire wanted to go home. She wanted to be where she had known only love and support and comfort.  She did, she spent time with her family. They spent time with her and then she left them to spend time trying to figure out how to live with her departure.   

Loss of a child is a post for a million other days.  It simply is.  For now I will not know the depth of that pain but will imagine it at times in my deep dark fears that swirl around being a Cancer Mom.  I just deeply hope everyone is able to go home. 

I have several pictures of Allistaire that I have used over the years.  I love this one. 

 But this is the one that haunts me.  This was taken just after Allistaire died.   She was at home. She was with her family and she was in her favorite bed with her pink sheets.  

Home is powerful place. 

https://conglomerationofjoy.com  is where Jai shares her journey.

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.  

Another Old Draft..... Written several years ago.

"I am leaving you with a gift: peace of mind and heart. And the peace I give isn't fragile like the peace the world gives. So don't be troubled or afraid. Remember what I told you: I am going away, but I will come back to you again. If you really love me, you will be very happy for me, for now I can go to the Father, who is greater than I am. I have told you these things before they happen so that when they do, you will believe in me."


I look at this passage and know someone sent it to me.  I think it is interesting to read it in the context of today and now.   Cancer World certainly made me re-evaluate my relationship with spiritual world.  

My spirituality was practical:  There is a God.  God is Good. There is not a "Plan" or predestination sort of thing.  God did not "give" my child leukemia in order to teach me a lesson.  The Old Testament God just does not hold much credence with me.  I have often wondered at those who don't see a God in the simple things, like a flower or a sunset.  If nothing else, it's nice to share such moments. 

When Mary-Elizabeth relapsed, I told Father Hightower I was furious.  I was incensed. I was heartbroken and it was all God's fault.  He held me in his arms and gave me a place for my fury.  He simply said " God has big shoulders".   He made it all right for my anger and pain.  I didn't have to put it in a deep dark place and try to handle it.  I could be apoplectic until I could figure out how to cope. 

During the 12 years of Cancer World, I have been able to find a path because I knew I had the strength to return to a place of "peace of mind and  heart".  I could not always stay there but I could return to that place of hope, understanding, calm, simple sanity.  I knew there was a sanctuary waiting for my return.  I know there are special places and events that feed my soul.  The ocean, a sudden downpour, a soft rain, a trip around a bend in a road, a new bird, an old tree.  

I have no answers.  But I know "peace of mind and heart"  are a good goal and place to be. 

I really Really Really Tried to Stop

But I have decided I need to check in on occasion.  Basically, life is good.  She is five years out from transplant and if you did not know better you would never know she was sick. 

No one would notice the total imbalance of her endocrine system.  A tendency to have lung issues, a loss of fertility, a loss of hair, thyroid and a myriad of other issues.        

Her skin has tantrums as small rashes seem to come and go.  Never really letting anyone relax.  Pearl Anne is 5 years old and so like any young immune system she is unpredictable. She was unable to fight off the last cold. 6 weeks, two doses of antibiotics and prednisone and still a cough. 

She has a five year follow-up next year with her favorite, Paul Carpenter, MD.  They will banter, she will complain, he will ask her questions about private parts.  It will be good. 

I continue to feel lucky to have my child with me.  I mourn and grieve over the fact she continues to suffer due to the treatment.  Was it worth it, yes.  Would I authorize the treatments again, absolutely.  Do I know I am lucky?  of course.  

Yes, she is alive. Yes, she continues to grow and mature. Yes someday she can say she is a survivor.  But I always worry it will return in some form or another.  I wonder what live would have been had she not been radiated and poisoned and poked and prodded and tortured.  What she have done with her life had four and a half of her life been spent chained to a hospital bed?  What would my life had been?   I guess we will never know. 

We have a life.  It is a good life.  Progress is being made every day.   I really have no complaints.  

I plead every day that things continue as is....

Oh My..... A Good Place To End this Journey.

June 17, 2004 was the beginning of what has been a long arduous trek though the Cancer World Mountains.  12 years ago.  Half of Mary-Elizabeth's life.  She is going to enter her 24th year in a day or so. It is time to let that new chapter not be about Cancer World. 

She was 12 when diagnosed.  Seems like such a long long time ago.  Seems so unfair and so sad and yet her last 12 years have been astonishing.  Mary-Elizabeth has grown into a special and amazing young woman with a deep understanding of the universe.  She is kind and loving and has suffered more loss than most her age.  

Many of her contemporaries have said good-bye to Grand Parents, even parents.  Few have had little people in their lives dies long horrible deaths. Few have drawn unicorns with five year old and not been able to build Legos with them a year later.  Few have seen contemporaries die. Few have had end-of-life discussions with their parents. Few have mentioned what needs to happen at their funeral. 

It is time to put Cancer in the back seat for a bit.  Find the future path. Find the place where plans can be made.  Try to learn how to say;  "next year" we will.......  

The writing will not stop.  It will reform in another universe.  It is therapeutic for me to put words on paper.  If they are on paper, they can be revisited when necessary.  Sort of like a dictionary.  It holds the words.  I don't have to memorize everything.  I can have a place, a basket, a drawer, a special mountain top, a piece of beach for things to reside. 

Mary-Elizabeth Sierra Lanham is a fully functioning human being with a bright future. 

She is leaving Cancer World Today.  I will be the repository and the guard.  She can move forward with only good things in her life. 

The END.... a good ending. 

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

Sometimes it is too hard to stay connected.

Sometimes it is just too hard to connect to Facebook or other parts of the Web. 

I would love to open the site and not see how many angels have been born. 

I would love to open to not see how many kids have been admitted for unexpected reasons. 

I would love to not learn some new and "special" side effect.  

I would love to be able to reach out and help a mother who stumbled  across an old Valentine.  Such a small item can mean a day of heartache. 

I would love to not read that a child is about to find a new set of wings.  I would love to have words or pictures or signs I could send to the mother and family. Something that would make a difference. b 

It is not an option for me.  I am either connected and life is hard and discouraging and terribly sad or I am blind to the hardship and suffering.  I walk away sometimes for a little bit but then we all need some shelter out of the meteor shower.   

Then I seem to be pulled back.  While I have the luxury of not being in the heat of battle, the battle and struggles are not far away.   It is like a haunting.  You catch glimpses out of the corner of your eye.  Just a momentary visit by a demon. Something that reminds you to be wary. 

I guess I will plunge back into Cancer World. 
Even though Seattle Children's does not like me.  Here is the most recent love note. 


I need to review with you both visiting standards and visiting protocols.  I understand you’ve done some remarkable work supporting both families and patients.  That said we need to insure that there are never any occasions where families or patients are visited without the needed approvals.  Simply said there can be no cold calling or spontaneous surprise visits to hospital families and patients.  I’d like the chance to review this with you and look forward to that opportunity



Just love these people sometimes. 

The Meaning of Everything.

Lent is starting.

Yesterday was my Father's Birthday.

The Rain is coming down.  

The planets are appearing to be very close to each other in the Morning Sky.

Trump is winning.

Hillary is not.

Plants are up too soon.

I don't know, I feel like I am on the verge.

Verge of Change.

Verge of Adventure.

Not sure what it really is but it is.  

Things have been over the horizon for so long. Hanging out there waiting to happen.  No real ability to grab on to something or to create any tractions to move one way or another.  There are moments of clarity and then they slip over the side of the mountain and disappear.  No matter what direction I head, the maze does not seem to open up in a meaningful way.  

My dear friend Alison told me once to "trust the motion".  One step, one rock, one inch.  Head in a direction and see where it takes you.  Trust in the motion.  Keep inching forward.  Know it is possible to plunge into a deep crevasse but sometimes there is something magical at the bottom.  

Cancer World put a stop to life as I knew it.  It kept me in suspended animation for an inordinate period.  In order to bring any sort of sense to live you have to step off the moving walkway.  Step away from what had been your trajectory.   

I have to keep moving forward and trust in the motion.... 

Bright Sides

"Look on the Bright Side"

I am sure I have said the phrase a million and one times.  I am certain I have heard it a million and two times.  It is sometimes said without thinking.  It is in our repertoire of things we say when words fail us. It is an easy thing to say but a hard task to accomplish in most instances.  It is okay to feel sad and afraid because sometimes horrible things happen.   But the gift of time often allows for healing, understanding, and acceptance of any bad situation. 

Sometimes there is no "Bright Side".  Sometimes both sides of a penny are dark and gloomy.  It is not always possible to happy about the fact your child has relapsed AGAIN, and the odds are similar to the odds of winning the Power Ball.  I know there are times when news hits me in the gut so hard, I can not breathe.  I am shocked in a time in my life I don't think I can be shocked by anything.  It is so hard sometimes to ramp myself up to see a friend, or break some news to the family or worse yet, to your child.  
I am not talking about our family.  Things are going great right now.  Mary-E is cooking along and will graduate after only four years of schooling.  She will do so being ever so close to graduating with honors.   She is ready to take on the world in one way or another.  

But day after day, week after week, I am holding my breath, knowing this will never be a solid state of being.  Many say to me "Look on the Brightside." "Don't dwell on what could happen."  "Don't be pessimistic."   While knowing each day could bring new cancer or a new side effect is not being pessimistic. A bit of well-placed pessimism is simply my reality. It is just that little niggling voice sitting on my shoulder reminding me to value and enjoy every day.  It lets me forgive myself for my many imperfections, my never organized house, piles of self-reproducing laundry,  my endless to-do list.   
It makes me try harder to do things that make a difference in people's lives. It makes me balance what I want.  I want to spend time with people that make my life richer and more interesting.  My house is not perfect, but six people are coming for dinner. The lamb is a bit spicy but then why did God make sour cream? 
The bright sides of my penny bring me back to this moment in time. This is where I stay, knowing the penny, no matter how dark, is still a work in process.  There is a good chance it there will shine on both sides.  

Sorting Chrismas over the

I think we have more than enough.  Let us all be honest, I have always been a Christmas freak.  I love things that are different, unusual and not ordinary.  Over the years, especially during the Cancer Years, there has been neither money or time availability to go and seek out new things.  We have had to have small trees, fake trees, dog and cat and kid proof trees.  We have not had everything out in a very very long time.

This year we are taking the time and going through everything.  There were years we did not take down Christmas and things were packed in different boxes and they were missing their buddies.  There were probably  20  "Christmas" boxes.  To be a Christmas box all you have to do is have one such item in your hollow space and you are thusly marked.  I have done some boxes over the years, and the labels don't make any sense anymore. 

I am surprised at the memories invoked by the ornaments.  Only one from my childhood remains. Several given to me by family and friends over the years. Some from my Teaching years, Thank-you again, James, John and Judy.  Some to Mary-E. Some to me.  Some from me to Mary-Elizabeth. Some from Mary-E to me.  

It is a strange power a piece of glittery glass or a piece of colored and glued paper can hold.  Each contains the spirit of Christmas past and the power to carry those spirits forward.   I have come to realize how powerful those memories can be.  Some from BC (before cancer) some AC.  It seems mind boggling.  A Santa, a small ugly scary as hell Nutcracker head, a beautiful tree, a small old little girl.  It is all good.  

Like all things, it is worth spending a few moments with them.  Pondering if they will remain part of the regular line-up or be sent away for someone else to enjoy.  There will definitely be fewer boxes.  I do know it has been a good exercise to pull them all out.  All of them.  I have found very few duplications. Only filler ornaments, placeholders, space fillers but basically, they are unique, special and filled with great power. 

Back to work. Nine boxes filled, inventoried and numbered.  Two are Mary-E's for her new home next year.  It is all good. 

Worry

As Mom would say.... is like a Rocking Chair, it never gets you anywhere. 

It is so built into my being now.  I have seen too much not to worry.  I know I can soon tuck the worry away but it just is sitting on my shoulders. I pound it down with a box of donuts but it creeps back.  Looking for a new way to manage it but I think I have to come to realize it will always be there and be more accepting and forgiving.  Sort of like Pope Frances suggested as a good theme for the year.  

I worry.  It sucks.  I have a lot to worry about given what has happened.  Time to acknowledge it is there and let it sit

on a shelf like that stupid Elf-on-The Shelf.  I will let the Elf record the worry and report to some cosmic being that is taking care of things.  I have to let it go and begin moving forward instead of waiting for the next shoe to drop.  

Next shoe? You ask.  Hasn't it already dropped like a big bomb over ancient and unreplaceable town centers?  Oh, you must think there are only two shoes.   Once you enter Cancer World, one discovers our monster is a long caterpillar with many many legs and matching shoes. 
Time has come.  Maybe that is my New Year's Resolution.  I will put Worry away. 

Christmas. Sometimes it is hard even if things are alright in your world.

Cancer is such a horrible thing.  Many ask why I don't just leave well enough alone.  How do you do that when people you have met, and some you never meet, have a child that is dying because they have run out of options.  Parents are making decisions to halt treatment.  Parents with children already gone.  Parents that know they will soon have to make decisions they don't want to make.  

I don't seem to be able just to walk away. Too many children and families are affected.  Not millions, but even one is too many.

This is one of those years that things are great.  Okay, so the dish fairies took a day off, the laundry is waiting. There are a million things to do but in shifting priorities to "Essential,"  other things have been accomplished.  Star Wars has been viewed.  Presents opened and appreciated.  Sharing an excellent dinner with friends and family.  Calls to and from people you love and enjoy.  
Dishes can wait, boxes can be cut down and recycled, laundry mountains are a thing of art.  

I am taking a moment to make sure the coffee is good, the house is warm, and  the dogs get a good walk.  The kidlet has the rest she needs.  

I also have to figure out when I am going to see

Star Wars, again. 

Christmas Card Dilemma

Perfect Cards
Perfect Stamps
Perfect Return Address Lables

No Idea what to Write!

I have tried several things over the last couple of months, and I can't write it.  As I look over the last year I don't see much to report.  No massive events. No significant problems solved.  Losses of several family members are a drag in a Christmas Card.  I hate those long whiny letters.  Maybe I should write a haiku.  

Year has passed quick-

ly. No real news, hope remains

For a great New Year.

That might work.  

Or my other thought:

A Picture is better than a thousand words. 

It's Tonsillitis, Mono, Strep or Mumps

But my reaction to this simple sore throat is not reasonable.  Just taking her to Urgent Care and then to pick up meds made me very very grumpy.  

She is currently in bed with a very sore throat, a fever and no desire to move. It will be fine.  I will make a quick trip over the mountains and through the woods but it will be fine.  She is having her first real nasty bug since being released from her transplant docs.  Her immune system is less than that of a 4-year-old.  She is now considered "fully vaccinated" but we don't know if she has titers to the vaccines.  Yeah, did you know they can run a simple blood test and let you know if you need a booster?  One of many secret tests we learned about during the last 11 years.  
What I have learned from this experience is that my "okayness" is veiled behind a thin sheet of wet tissue paper.  All of the fear, anxiety, irrational worry and the rest is held back by a few atoms spinning around a few molecules and fibers.  

The question will be, how long before I am able to bounce back.  How long does this gripping fear last?

Hoping it goes before the last turkey sandwich. 

Cancer World Christmas

So before I begin, let's remember this entire post is from only my experience.  I don't have any significant experience with other hospitals. Also, I love Christmas more than anyone. 

What I love about Christmas is finding the perfect gift.  I have never been one to set a certain price or a certain number of gifts. It just has to be one perfect gift. It has to be thoughtful, and the

person has to know it was not random or obligatory.  Because of those rules, I sort of shy away from the tremendous gift giving to kids with cancer at this time of the year.  They are doing just fine. Lots and lots of people step up, and the kids have a great Christmas for the most part.  We all know it sucks and is hard but at Seattle Children's, nary a child is forgotten.  

So, The Wishing Rock Project is not going to do anything for the children.  We are going to continue to be there to support the Moms.  We are going to continue to visit the hospital, seek out new families and try our best to visit as much as we can.  Deliver as many Starbucks Cards, reusable bags, windchimes, and beads of endurance and, of course, some chocolate.  
We think this is a good idea because as soon as Christmas is over, Cancer is still there.  Moments of forgetting are real and necessary but having the strength to keep going is also a requirement. 

Please. after all the Holiday Season chaos is over, remember Cancer World is still there. 

Getting It

I get it.  I understand it.  I have lived it. I have experienced it. I have witnessed it.  IT has changed me forever.  

I remember when one of my favorite mom's asked if living in Cancer World had changed me in any way.  I had not thought about the changes.  While your child is in treatment, there is so much else to think about; so many things to do; so much to worry about.  You are running faster than you ever imagined you could run.   It is overwhelming and more than you can ever imagine. Recently I have been thinking about it, a lot. 

There are lots of losses balanced by gains.  No one wants to hear about the losses.  I have stopped counting the times I have read the long slow creep towards death that many children make. Death is a reality for many children.  The longer you are around Cancer World, the more loss there is.  It makes me less than enthusiastic about the success stories.  When a family announces the last dose of chemo, the finish of radiation, remission, end of treatment, the end..... of __________. I shudder a bit.  I stick that bit of knowledge in the back of brain with a reminder to check back in a couple of years, and then in five years and then.... Relapse and the terror of a Bone Marrow Transplant. 

I just get it.  I want lots of remission/success stories.  I bet there are more than we know, but we don't hear about them. There is a group of families that just finish treatment, have a party and go on with life. They know they are lucky and are not bragging about it.  
The Relapse/Secondary Cancer Gang is loud and vocal.  It is necessary because if you believe you are scared the first time, the second time is over the top. It is not like a Relapse is getting a C. Relapse if an F.  It is hard to come back from it.  You need lots and lots of A's to make up for an F. Unlike college if you flunk you can take the same class again.  If you fail Algebra II, they don't make you take Calculus 4. 

In Cancer World, they bring out bigger and nastier forms of treatment.  Things they don't want to use unless absolutely necessary.  The Nuclear Bombs and other sorts of weapons of Mass Destruction.  Who knew there were so many ways to kill. 

As I sit here in year 11, I am beginning to forget what life used to be like when it was "Normal."  I don't recognize the landscape of my life in any ...way.  I see glimpses of it when I run into people I knew from before.  I am beginning to realize I have made an impact on people's lives in mostly good ways.  I was downtown and went to Cafe Zum Zum.  I walked in, and the owner looked at me and started to scope up my favorite.  He then chided me for my long absence, telling me he was still smoking because I had not been around to give him a hard time. 
It made me smile. While much has changed, change is part of life.  It is well past time I explore this new landscape.  When the

 Cancer World Asteroid landed in our laps, it forever changed the world we inhabit.

I get it. 

The "Giving Back" piece of Cancer World

If I had a super computer or a friend at the IRS, I would ask someone to figure out how many Foundations and other Non-Profit organizations are working to help those in Cancer World. My sense is that there are 1000's.  It makes sense because so many have been affected by this disease.  

After being in Cancer World, people either flee or feeI a need to give back.  One is compelled to try and return in some way the flood of what you have received.  It is important to shine a light on the path for those still in the dark place. Send something back to help those who are still climbing out of the despair which is Childhood Cancer.  

During the darkest times of our lives, we are given so much. It is impossible to meaningfully repay those that stepped in and lifted a burden from our shoulders.   The people that did our laundry took our dog, helped with trash, fed us, brought us groceries, prayed for us endlessly, and kept us in their hearts, never expected to receive something in return.  They were gifts.  Pure grace flowing from one heart to another. 

I have come to realize a small act. A small gesture. An instant of connection can make all the difference.  While I have a bit of frustration from not being able to organize folks and make things efficient, I know lots of people are making a little bit of difference, and a little bit is more than enough. 

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.