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.  

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".  

Another Bright Light is going To Go Out....

I somehow connected to this family a couple of years ago.  Their daughter Emily was inflicted with the same Lymphoma as my friend Trisha.  Unfortunately Emily has relapsed again. This family has been on fire.  They have had every buildings in Chicago lit up with Green and Purple, Emily has been at the Police Headquarters, heck she even had a call from Taylor Swift. Emily is squeezing every single moment of life dry.  As we all cry inside for this impending loss. 

 I hate to feel like I only have sad stories to share.  I don't want to be that person but some it is such a big part of being a Cancer Mom.  Knowing we have to be there even during the losses.   

Say an extra pray for peace and painless days.  Light a candle.  Hug your kid.  Forgive your irritating neighbor. Smile at the homeless guy.  (Still feel free to kick the smokers) 

Sorry I haven't updated in a while. It's hard to come up with words when I feel so empty inside.

Emily has been having some good days. She hates radiation, but she has to go for pain management. She has about another week left. Thank God the pain finally subsided. They put her on Methadone. At first, she was miserable. Not only was she in pain, she was very mean. I don't know if it was the pain, or the getting use to the pain meds. Our Emily came back last weekend. She is only functioning on one lung, her left one. She gets up to brush her teeth and after she has to sit down and have some oxygen. What 12 year old should get tired and winded brushing her teeth? I don't know how we are suppose to do this? Looking at her beautiful eyes, her beautiful smile, her little buck teeth. I just can't imagine a world without all those things. We all hurt so bad!!!! We are watching her deteriorate. How is this fair? When I say science has failed her, it really has. ALL our kids need and deserve much better than this. This makes me absolutely sick. Ed and I have been watching a PBS special that was on a few weeks back. It's hard for us to watch so we are getting through it slowly. The last part we watched they were speaking to the first Leukemia survivor. She was in treatment 50 years ago, they listed her medication and I wanted to scream! Emily was on all the same medications. In 50 years, NOTHING has changed. How is this ok? Things in pediatric research needs to change!!!!

Hospice has been coming, the nurse is very nice. Emily likes her. The other day we had to sit and go through the stages...... Emily is entering them. She is not really eating at all. I am told that I should not force her to eat, because her body doesn't know it's hungry, it's too busy trying to keep her breathing and her heart beating. How am I suppose to not make her eat? I feel like I am trapped in a nightmare and I can't wake up.

We are still trying to enjoy everyday for what it is. We will not cry in front of Emily, unless she is crying. Thank you for all your support, prayers, and love. Ed Beazley

Unlike · Comment · Share

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.  

Thanking God She had Acute Lymphoblastic Leukemia and not __________

Yes, it is one of those days.  The kind of cancer your child has/had does not make a difference.  There is fear and trepidation and panic and deep depression no matter what the diagnosis.  The test is that all of these kids qualify for a Make-A-Wish because of their condition.  They all have life threatening illness.  Those of us in Cancer World have seen even the "best" treatment fail, and fail miserably.   

Time and time again the kids die, relapse, fail to achieve remission, develop a secondary cancer, life long struggles with thyroid, skin issues, GVHD, weird hair stuff, infertility.

We all know the number of kids that  are diagnosed do better now but it is still a heart break with every single child that leaves the corporeal world to join the universe.  Heart breaking when a tumor comes back, when a close chemo buddy dies. 

Despite the loss, the sadness, the failure to cure, the great unknown about the future, we have to continue.  We have to continue to support each other, try to make a difference and hope the postings about death and relapse become less a part of our lives.  

Today we honor those that have died since of May 2014 of Osteo Sarcoma. The boys are gone. Katie, the tall lovely girl in the middle is gone. All gone too soon.  All shared the same cursed disease, all were loved and honored and valued and cherished.  All are missed.  Nicole, the lovely child on the left remains cancer free.  Or as they say in Osteo world.  NED, no evidence of disease.  

This is the best those families can hope for at any given moment.  NED.  But the docs are always on guard about finding the disease again.  Sort of like Dr. Carpenter, he told me I could relax for NOW.  I wanted it to be forever. 

So today, March 27, 2015  we are thankful and grateful for NOW.  Because NOW is all we can count on.  NOW is a good place to be. 

Perception and Reality

She looks Great!

Who would ever know she had Leukemia.

Boy treatment must have been very successful.

How could you ever guess she has had 349 doses of chemo therapy?

We hear this all the time.  When the kids really look green and have no hair and have a tube sticking out of their noses, people know. 

It is the times when the hair comes back, maintenance begins and the less obvious effects are there but only if you know where and what to look for.  (never end a sentence with a preposition.)  If you are in the know, you can tell.  The small 1/8th scar at the neck, the back of the arm stretch marks only from massive prednison.  Chipmunk cheeks. The constant use of purell

.  The fear of salad bars. The squirming at the sight of the stagnant pool of water holding the ice cream scoops between servings.  

So much is not visible.  They have color in their cheeks, cute curly hair, a smile that does not quit. 
There is a curious inner strength and wise visage.  It masks the loss of brain matter, fertility, thyroid function, heart health, lung capacity,  hip, knee, and shoulder joints.  No one sees the places where future cancer lurks waiting to show itself.   

Everything is not what they seem.

Many friends and acquaintances knew we were spending time at the NCAA tournament.  Gonzaga played North Dakota State.  Gonzaga really struggled.  North Dakota State was tall, and powerful and could shoot like crazy.  Not only did they shoot, they sunk so many balls without touching the rim, I worried.   It was sort of crazy.  They pushed and went ahead on more than one occasion.  Gonzaga did not pull away, ever, for very far.  I was not willing to believe they were going to win until the the last 36 seconds.  

I talked with a friend this morning and I said it was hard game to watch.  "But they won by 10 points."

It made me think.  Many of our Cancer Kids "look great".  Have hair.  Have color in their cheeks. Are smiling.  Are back in school. College.  Playing sports, in the orchestra.   But.... it has come at a cost.  A huge emotion, physical and future cost.  Costs we can't even calculate as we spend time sitting in the waiting room for the next blood draw, the next LP, the next scan.  

It is always a good idea to step back, and maybe ask a follow up question. Take a moment to not assume everything is as it seems.  

Here is hoping to continued good health AND a better game tomorrow night. 

What a Difference a Moment Can Make

So, I have been dealing with some issues with some "kids" .  They are in the Millennium  generation or better known as the ME ME ME group that we have raised. This group was given way too many participation medals and pats on the back for mediocrity. Their tool box to deal with life in seriously deficient. 

 I remember my dad being upset when I mentioned there was not a dishwasher in my new apartment.  He was shocked that I would even notice.  I heard the lengthy "When  was a boy we lived in a Chicken Coop" recitation.  I then mentioned to him that we had never lived there and we always had a dishwasher, and electricity and plumbing.  He sort or looked at me funny and smiled.   He had not thought of that before. 

So now everyone has a cell phone, most of them "smart".  There are cars that are more than transportation.  They have a million I-things and flat screen TVs and fast computers and faster WiFi.  And we wonder why they are so flummoxed about hard work and responsibility. When and where would they have learned? We never gave them a chance. 

They want it all. They want it now. Everything is not enough.  And when that does not work, they are a bit miffed.  That is their bad press.  But there is a flip side to all of that.  They live in this moment.  The Dali Lama would be impressed with their ability to only focus on NOW.  Not a moment in the future or dwelling on the past, only the NOW.  Granted they need to worry a bit about kindness and giving back and things like that but they have the NOW thing covered. 

But you can get stuck in NOW. I am having a hard time seeing a future and making any plans.  I am stuck by Cancer World glue.  How dare I be so arrogant and make plans for something more than what we are doing today? How dare I believe there is a moving forward?  I have a hard time making plans very far out.  I know the bridge could go up as I travel over it. 

Cancer World takes lots from us. It also teaches lessons.  I am sort of slow on the patience and acceptance part of it.  Not happy when I don't receive answers of certainty.  I am sure they are not telling me everything and I have come to realize why.  Too much to know, too much to take in.  

Cancer World reshapes our reality and shrinks part of your world view.  You learn to focus on this issue, this moment, this point in time.  There is always a goal you are working toward but your life is peppered with the knowledge the bridge might go up at any moment. Any instant. Any nano particle.  

However, In physics, moment is a combination of a physical quantity and a distance.  

So I am going to work on thinking of NOW as a step.  A step in the right direction. 

I will work on really thinking about each moment being a step.

Not all Roads Lead to Klamath Falls

As you drive back and forth from Seattle to Visalia California to see your baby brother you seen a repeated sign:  Klamath Falls.  Next Exit  Klamath Falls. Now Klamath Falls is sort of inconsequential place in the middle of Oregon. I don't know if anyone goes to Klamath Falls.  I know very little about Klamath Falls but after you see the sign enough you begin to  wonder if you should go to Klamath Falls. 

It became sort of a joke.  The kind that develops when you have crossed over a river 36 times in a very short period of time.  Sort of like the License Plate game. When you are on a long drive this is how you make the miles pass with alacrity.  Lots of roads and exits lead to Klamath Falls. But I think in retrospect, it is a place to be avoided.  Sort like ICU or Hospice.  It is a better to avoid it at all cost and hope the Exit passes you by, each and every time.  
+

I just spent a few days driving to and from Visalia with my mom. We drove I-5 and then at Sacramento headed down 99.  Down the center of the San Joaquin Valley.  Rows and Rows of unidentified trees and crops and rice paddies whizzed by as we drove 80+ miles an hour. When the fog cleared we could see from the Sierras to Coastal range.  Flat, fertile, under cultivation.  Almost a cosmic adventure.  Miles and miles of straight rows, small dusty farm towns. Disturbing feed lots, fields populated by field hands and their families.  It makes you think.  It makes you wonder. It makes you appreciate what shows up in the stores.   

The vastness of it all.  I of course want to know how the valley was formed.  As you drop out of the end of the Cascade Mountain range and leave mountains and foot hills behind, it makes you wonder.  How did this all come about?  Or at least it makes me wonder.  

I spent the whole trip wondering where the Sacramento River starts?  When did they built the Lake Shasta Dam?  How many people live in Myrtle Creek?  What was Happy Donut before it became so happy?  When did the first settlers realize they could grow Oranges?  Who brought them to the valley.  Why do we dye ripe olives black?  When did Zinfandel Wine become dark read and not a Rose?

My list of questions goes on and on.  But then travel does that for you, even a short jaunt to visit your brother in his wonderful house with an orange tree and never ending closets.   

My time away also kept me away from many things that have filled my life these past few years.  Three years and 5 months.  It was a bit of time not to dwell on the stuff that makes "Klamath Falls" an unwanted destination.  

I realized you can run but you cannot escape. Just like when you first enter Cancer World and watch your life go away, you realize things don't stop on command or when you are not watching.  A child was buried, several were mourned. More were struggling. Some were given hope, some were given guarded hope, some were just waiting to find some hope.  


Hope is a good thing. It helps us move forward.  It often even answers some of my questions.

Its the "Word" Thing again.

Child having trouble breathing.

Child still in ICU.

Child with a tumor pressing on the end of the stomach.

Child with Relapsed Lymphoma.

Child with tumor growth.


What do we say?
What do we do?

I have racked my brain for days.  I am not one of those "Just buy a gift card" kind of person.  I know on some level it is the best thing.  Some money, a prayer, an encouraging note, a Coffee Card.  Heck I just found out there are McDonald Cards.  I know.  Write a note, put in a 20. Go on with my business. Easy.  I'm done. I have stepped forward and contributed.  The rest will work itself out. 

I want to give something special. I want to give something meaningful. I want to be of help and to take away some of the burden.  I want it all to go away.  But as many of us in Cancer World have learned over the weeks and months and even decades, there is really nothing that helps.   But darn it, there has to be something.  I hate limitations. 

I received news that Katie Elliot took her last labored breath this morning.  Talk about a "no words" moment.  Words won't make a difference to Katie.  Her family will no doubt find words not comforting, for a while because the pain is so excruciating.

I think the reason we are at a loss for words is because sounds don't adequately do the job.  A death is a time for silence, for deep reflection, for gazing out into space to try and connect with the molecules of the spirit.  It is a time to think about the great things the person did during her lifetime and what we learned from her.  

We all die. Some sooner than others.  The only thing that matters is what we do with the earthly time we have.  How many times do we smile, laugh, change another person's life in a good way?  What really matters isn't the balance of the bank account or how many bedrooms and bathrooms we have.  It is what we have done to effect some one's life. 

Everyday a good deed must be accomplished.  That is the important pile of stuff that needs to taken care of and stored and sorted and increased. 

Today we dedicate good deeds to Katie and her very sad mom Darlis

Year Three Evaluation....

There is a secret Facebook Group known as Momcology.  Lots of sub-pages for the different kinds of Childhood Cancer, age groups, locations etc.  Lots and lots of Mom's.  It is a wonderful support group where things are said that are not said in public.  

We are often so caught up in our own room of Cancer World we don't know much about other rooms.  Sarcoma Rooms,Lymphomas, Wilms, AML, ALL, Brain Tumors.... the list is pretty long.   We all learn from each other.  We learn about the way kids are diagnosed, the treatment and the follow-ups.  We learn that some kids have to have a prosthesis eye and they out grow it. We learn Brain Tumor's are bad.  We learn where cancers spread. We learn more than we ever wanted to know. 

But most of all it is a place for the quiet despair and agony of the moms. Moms with traumatized children, dying children, relapsing children. Children with huge struggles from treatment and the lingering after affects.  Teenagers, tiny babies and young adults.  We watch and learn and do what we can to support each other. 

One thing I have gleaned from months and now years of spending time on Momcology is that everyone has "follow-up" appointments. Most Moms deal with something called Scanziety.  It is a little known disorder not yet recognized by the medical community but it is real and lives in the hearts of these strongest of strong women.   They have to face sending their children through MRI, PET and CT scanners at varying intervals. The doctors are looking for signs of wayward cancer.  As the day approaches, the intensity of the Scanziety increases. The tension and fear and feelings of total despair is ever present.  
I don't want to belittle this fear but this week, I am wishing Meb had such a simple follow-up.  A scan, a result, a conference and then a new plan or a sigh of relief and a new date for the next scan.  

Oh, No Not for us. 

 It is a week long process of multiple tests and exams and evaluations.  A week of it.  Blood draws, close physical evaluations, Pulmonary Function tests, two separate eye exams, Dermatology, Hematology, 
gynecology,  two dental exams, PT, and then Vaccinations.  All through the process everyone is on high alert and holding their breath.  What will the test say? When will it all come back? Can they see anything?  Is something hiding out?

It is the same sort of follow-up anxiety but packaged in another way.

 I have come to believe that we will have bad news.  I am just conditioned for that process.  Today Dr. Balter (first of two eye doctors) came out of the exam room and came in my direction.  My heart stopped.  Dead.  I asked him what was wrong and he laughed.  and then said "I totally understand why you would react with so much anxiety. I was the one that started this process.  But she looks great." (He was the doctor that first discovered something was wrong with her in 2004.)

I know she looks great. I know she feels great.  I know she is almost 3 years out of transplant. She is back in school. She is off 99% of her meds. She may not have to go back for this evaluatoin again for 3 years. But  I also know how close leukemia and secondary cancer's hover.  I can say it all the time that things are fine but I also know that when ever we put her under this many thousand's of dollars of tests, something might rear its scary head.   

It happened before.  

So here I sit.  Day 1 of 5 and wonder and wait and try not to work myself into too much of a tizzy.  But as I fail to keep calm, I am not the only one. I am not the only Mom wondering and wanting to know if everything will be okay.  

Day Two Tomorrow:  Derm, Ophthalmology. 

I can do this. We all can do this.  We can survive a simple "Follow-up". 

September a month of Contraditions

It is Pediatric Cancer Awareness month.  I have been aware of Pediatric Cancer for way too long but never really knew it was the month of awareness for until last year.  I am not sure when this all started but September has been significant for a bunch of reasons.

September 13, 2004:  Date of first remission.
September 28, 2011:  Date of Relapse
September 30, 2014:  Things seem to be fine.

So I am working on loving September since we are having good news for two out of three times. 

My questions for today are:  Now What?.

Its time, very much time for me to start generating money in a constant and steady manner.  More efforts in networking, redrafting my resume and then seeing what I need to do to convince someone I am exactly the right person for the job.

I will keep trying... Because if we have learned nothing about the past few Septembers... Trying is the only option.  Eventually you get good news. 

Crow Parenting and lessons Cancer Moms could learn.

1.  They loosely define family. There is always mom and dad and a few hangers-on.  They call them Nanny Crows.  It helps because there are usually two babies a year.  Often the Nanny Crows are young adults from prior years that have not quite left their Mom's basement. 

2. They don't let them out of the nest until they can fly on their own.  When they do let them out, they have two adults with them all the time. 

3. They feed them, they stroke their necks and nuzzel them sometimes and then at some point they also ignore their screeching.  When one parent does not respond, the baby goes to the next parent. When that does not work they follow their parents around and skwack some more.  This goes on all day but in the end the kids start to feed themselves.  They score snacks but they learn and watch and figure things out. 

4. They keep them close for awhile but encourage them to play with other bird friends  Often they even let them play with starlings.  When the babies come out of the nest they are adult size with perfect feathers. The parents and the nanny's are pretty bedragled by this time of year.  The parents keep the babies groomed but when they go play with their friends things get out of control.  You can always tell by a feather or two sticking up.  

5. They pay attention to their kids.  No texting, cell phone calls or television.  They work together as a family to steal food from the Stellar Jays. They spend evenings together and fly away to roost about 30 minutes before sunset.  

I often wonder if the Crows record such observations about us?  They learn from each other, they remember faces, they know when food should appear and demand it regularly if not delivered. They set up their own "homes" and jealously guard them, chasing away the most officious interloper.  Raccoons, cats, dogs, even people are chased and dive bombed.  As a greater group they will even take on a Bald Eagle.  

We have watched, we have been amazed, we have been delighted. Our own little nature show.  They are a part of our lives. A weird but present example of parallel lives. 

Many Mom's mention they feel like they stepped off the path and have a hard time rejoining their former lives.  I think we have to do it the ways the Crows do... a bit at a time.  

We

have been fed and coddled and protected and now we are venturing back into the big world.  The thing we need to remember is we are not alone.  We are being watched protected and will be helped along the way. 

We can do it. 

World Cup is Like Childhood Cancer

Lots of player
Lots of teams
Lots of ways to win
No one really understands how it works
It doesn't happen that often but when it does it is all consuming
It comes back no matter how hard you try to avoid it.
Many people are there to watch and help.
Confusing 
Life Consuming for some and totally ignored by many
Needs a large group to cheer you on
Needs a large group to cheer you up when things are bleak
Needs constant fans to continue when it is over
There are Tee Shirts/Jerseys
It never seems to end once it has started
It can slip into the back of your mind for a while but there are always reminders
Some inevitable violence is expected



But most of all I don't understand it... at all. It comes with no warning and is a constant source of excitement and sadness. Some win, some lose there is no way to figure out who is going to do what. 

Sometimes it just "is" 

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.... 

Family and Friends can only stand it so long.

This is not a criticism but more of an observation.  I am reading through my old blog posts and realize that over the years people have left our lives.  Some have come back and forth and other's have headed in new directions.  As every Momcologist can tell you, it is hard, so hard to hang in, day after day, week after week of what seems like an endless road.  

I read post after post of people confused about where their friends have gone.  How a family member can think one visit is enough.  They have filled in that box and done what they could to be supportive.  Usually at the beginning of the much too long and seemingly endless journey.

 I do understand how it happens.  If you watch TV, it seems so hard to believe curing cancer can go on year after year after year.  That the family never quite believes it is done and they worry endlessly about silly things. No movies, no big crowd events, no unvaccinated kids allowed.  No concerts, no, no, no, no.

We say NO so many time people stop asking. They stop trying to do stuff for us because we say No as a matter of course.  We become un-reliable. We stop even planning anything.  No plans to go out to dinner. No plans to meet people at a fun event. No plans to even have coffee.  It is so hard to grab hold of the concept that we can not make plans.  

I remember every time I tried to go to a play or a musical or a birthday party, I realized it was a very big "Maybe'.  No longer was there a way to plan or project.  Hey, we even had to cancel the Make-a-Wish trip to Venice.  No easy feat.

Your family and friends sort of get it but you are no longer on the same path.  No longer are you including people in everything you do. No longer can you be relied upon to bring the potato salad.  No longer can be the person to show up with the balloons for a party. 

I have been very lucky with the support my friends and family have given us.  There have been losses but those are part of life.  Some left because they couldn't stand it. Some left because they couldn't believe we were such whiners.  I think most did not have the energy or place to worry up close.  I know we are surrounded by prayer and given lots of support in ways we will never know.  St. Joe's with organization of Mr. Boyle took care of us for a long long time.  As Meb always says: There are some great cooks at St. Joe's.  

Not everyone has been so lucky. Lots of people in Cancer World that feel abandoned and alone. I never have.  I have found that as we emerge again from the protective Cancer World Cocoon they are ready to join up again and travel together.  


We have to realize we have been gone. Gone from the real world for a very long time. Sort of hanging around in space waiting.  Sort of like the space program. Everyone is excited about the launch and the landing.  Not able to keep too excited during the 3.5 years it takes to get to Mars.  It is human nature, not awful friends or family.  

Just think, if we had a choice we would hang out at a hospital using Purell every 20 minutes watching bad TV....   Heck no.  And it's okay. 

Our friends are still there, waiting for the all clear call.  

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.

Waves of Pain When a Child is Gone

Facebook has created a place for people to share. They share what they are eating, cute kitten videos and now the pain they experience when a child dies of cancer. 

We have been lucky enough to avoid this most heinous of losses but we always know it is there. It hangs around. I have watched it so many times these last few years.

I remember being on the floor when Meb was in treatment.  Sarah was dying. She had lost her battle with a nasty form of Lymphoma.  On the old floor people were moved to a private room and then a one on one nurse was assigned.  Then the people start to come and say good by.  We all watched as streams of young adults and family members came and went, beyond visiting hours.   

Then the Father showed up.... The hospital helped him come but he clearly was very uncomfortable.  He was standing in the hall one day looking very lost.  I approached him and told him I did not know his daughter but I could tell from what everyone had said, she was a great person.  Her greatness was only validated by all the people that were visiting and letting her know she was loved. 

He looked at me and told me there was going to be a miracle. They were going to fly her to another hospital and she would be well again. I put my hand on his sleeve and he simply grabbed me and I hugged him with all the strength I could muster.  He continued to hold back his tears and fear and terror.  A terror I can only imagine but I have felt emanate from so many whose children are now gone. Rebecca, Mario, Joseph,

Jaxon, Ruby.... this list goes on. 

Micheal was laid to rest yesterday. Allie will leave this planet soon.  Katie and Daniel are moving forward on their bucket lists with great alacrity. 

 It never gets easier. because there will be more.  But the miracles will continue to happen.  Really smart people will keep working to fix these kids.   And we will continue to believe it will be better someday. 

Secret Fears that are not So Secret

Sometimes there has to be some distance between the event and the reflection to make some sense and have some perspective. When we are in the heat of the moment, we can only do so much and take in so much. 

I thought I was pretty much on top of everything until I went to a survivorship conference.   They are all sort of the same. Cancer World people. Inspirational speaker:  I had cancer and I made it and I don't have any problems. (Denial is a great coping mechanism.) 

When you enter cancer world it is all about survival.  What percentage of kids with this kind of cancer "Survive".  I totally understand the need to be so focused but the longer you are around, the more you realize that percentage is only a tip, the very very tippy top of the iceberg of information.  

It is so so complicated and each kid is different. There are things they don't want to talk to us about or they mentions in passing. As we are going down the road, we find out about them.  I can remember when I sat there and heard someone that had treated Mary-E explain that Spinal/Cranial radiation continued to damage their bodies for 3-5 years.   That is a long time in a child age 12.  

I could not believe I had missed that little fact but went back to this blog and sure enough, there it was.  Clear as day.  In my inane babbling about heavy doors shutting, eating and sleeping problems, I had missed an important fact.  These life saving doses of radiation were taking away her brain and thyroid and God only knows what else.   For 3 to 5 years. 

But... do we not follow the protocol. The time tested method of trying to beat this thing. Probably we do what we can to help her live.  

It is only later, in the aftermath and years later do we try to second guess ourselves. 

Should I have done this.....?
Could things have been better if I had done this........?
What would have been the result if we had tried....?

I remember be terrified to know we were going to miss a round of some chemo.  How do we make it up? Will it come back if we don't do more?
How do we know if it is really all gone?

We walk out of clinic for the last time. We note the last bit of Chemo. We celebrate the end of treatment, we go on a Make-a-Wish trip.  

We close our minds to all the doubts that sit in the background.  The stirrings of worry. The little bits of dreams that are unsettling.  We do our best to ignore it.  We want to believe that if we do all the right things and say all the right prayers and banish Spam and other processed foods from the diet, things will be okay.  

Charles Hemenway, MD, PhD. clearly is not a tuned in pediatric oncologist.  He has not seen his patients go through treatment, relapse, try again, relapse, try to find a last ditch drug and study and then watch long slow downward drain of the life that came into the world with so so much promise. 

There is a 70% cure rate.  There is a 30% death rate... The kids endure with grace and courage massive treatment and pain and suffering. 

We fear we will be part of the 30% or the 60% or the 95% of children that die.  We hear the odds, we play the odds but we all know we have no way to change the odds, no matter what we do or how hard we try. 

http://www.healio.com/hematology-oncology/pediatric-oncology/news/online/%7B476b729a-d317-4f7c-8266-d9d76338dac9%7D/new-movie-portrays-teen-cancer-unrealistically-expert-says

No wants to think about the downside of all of this but it is real. It is there and happens.