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.  

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.  

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".  

She was Surprised and I was Relieved.

FOR IMMEDIATE RELEASE

Mary-Elizabeth Sierra Lanham Named to Dean's List at Gonzaga University

SPOKANE, WA (6/12/2015)—Mary-Elizabeth Sierra Lanham, a resident of Lynnwood, WA has earned placement on the Gonzaga University Dean's List for Spring semester 2015. Students must earn a 3.5 to 3.69 grade-point average to be listed.

Gonzaga University is a humanistic, private Catholic University providing a Jesuit education to more than 7,500 students. Situated along the Spokane River near downtown Spokane, Wash., Gonzaga is routinely recognized among the West’s best comprehensive regional universities. Gonzaga offers 75 fields of study, 25 master’s degrees, a doctorate in leadership studies, and a Juris Doctor degree through its School of Law.

Among her circle of friends, this is not such a huge thing.  It is something that kids do on a pretty regular basis.  She has always been a good student and sometimes even amazing.  But it is not easy and it is something she works so hard at doing. 

Every grade, every point, every single test and quiz and report is the result of hours of study and preparation.  Radiation and Methotrexate into her spinal fluid have robbed her of many things we take for granted.  She can't memorize.  She can't keep something in her short term memory if her life depended on it.  All those people that memorize, drop the info on the page and then forget have a skill she no longer possesses.  She has to do an extended solitary process of making sure she understands and learns the material.  

She does not believe she made the Deans list and even argued with the Registrar about the posting.  

I have watched her spend every bit of her energy on being a good student.  Lots of her fun time in life was spent in the hospital and then studying or getting ready to study.  

I think back to the first time I saw the 12 inch lead door closed her into the Radiation Suite.  I knew the damaging radiation was destroying more than elusive cancer cells.  I have come to appreciate how much was destroyed.  I think it is going to be okay.  It just made the hill higher, slicker, rockier, and more difficult.   

It didn't make it impossible. 

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.  

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

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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. 

Dear Mary-Elizabeth

I'm  not sure how much you know about what I have been through.  I think you guess a lot but have tried to keep focused on your journey.  As you know WE had cancer.  WE had a relapse. WE had a Double Cord Blood Transplant.  But you have returned to your life and I am sort of waiting for mine to be found again. 

 I think I have been looking in all the wrong places.  It is such a weird thing to loose your way when  you are not ready to be done with your working life.  It just seems unreal. I am not ready to step back from the world just yet.  I still feel 18 and have lots to offer.  I am just wiser than I used to be.  I have seem more, felt more and lost more.  This next part needs to be good because, let's face it, I am a bit more than middle-aged. 

This last week I have had a chance to re-connect with some friends.  They say you can see yourself most clearly in the eyes of others.  It is always good to see a positive reflections.  And to be honest, I don't think it was just the good wine we drank.

I think I might have to turn back a bit to law. To figure out a way to use my specialized skill set but not be eaten alive.  I have realized that to do the Family Law piece the way I did it, I took on the pain of the family.  It was woven into my being,  I don't have that capacity any more.  My own pain and worry have filled that part of my being.  

Okay, let me see if I can figure that out.... 

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....  

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.

Diagnosis Hope vs Treatment Reality

Someone mentioned to me that their grandchild had been diagnosed with osteo sacoma.  They were obviously upset and the depth of their confusion and pain and fear were very apparent.  It is a very scary thing. Hearing those words sticks with you for the rest of your life.  It is a "Where were you when Kennedy was Shot" question.  (Yes, I am that old.)  The child will be in treatment for 9 months.  The family has arranged to be home for a year because they are teachers and their fellow teachers have given them sick time from a pool.  There is a sister. 

The grandmother is trying to figure out what to do. How could this happen?  Does it matter if the child is 8? This is so rare how can they cure it? Do the doctors know what they are doing?

As I sit here this morning watching the birds gather sustenance from the bird feeder buffet, I just sigh.  Katie Elliot will be buried in a week.  I met her family when they were starting treatment.  Three years later, treatment is over.  She too had Osteo.  She did not make it out alive. 

When you first hear those words, the thing that gives you comfort is the "plan" or the "road map".  There it is, the PLAN.  Yes this is a lousy diagnosis but we have a PLAN.  Something to look at, something to put on a calendar. An end point is sitting there for all to see.  You can plan your live around the PLAN.

I still have some of the calendars and all the Road Maps.  I look a them when I am sorting through things.  I still look and wonder at the amount of hope and optimism contained on those pages.  The PLAN.  

What you soon realize is that the PLAN is kind of a guide.  You know where you want to go and you head West.  Sort of like being on the top of the Continental Divide and heading to the ocean.  There are million ways to get there and the ocean is a vast. But with enough effort and enough perseverance and some luck, you do arrive.

 The journey is not easy. The path is not straight. There are losses of untold magnitude.  Some are secret losses you don't discover for many many years.  It is a journey some have to make more than once.  But it is doable. 

As the family begins on their journey, my first words of advice would be to hang on to all the hope they can.  They will need it as they make their journey and have to face the reality of the bumps on they way.  Second bit, be ready for a wild ride.  Third, remember you are not alone. 

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

The Downside of Too Much Information in Cancer World

As everyone can agree.  I am on the computer and writing way too much.  I embraced this blog as a way to put the information about ME out there in 2004.  It all started before diagnosis.  I became very aware that she could listen to me talking on the phone.  I could not stand to tell the story time and time again.   

Remember when we talked on the phone?  

Well in the past ten years many bloggers have joined me.  Lots of parents and patients added their stories to the web.  Then came Caring Bridge.  A blog site dedicated to patients and their families.  Then Facebook exploded and support groups showed up.  

In my case the group is Momcology.  Secret handshake, passwords, have to prove you are one of us, initiation and vocabulary test before you can join.  You know the sort of site.  (Never pass up a chance to support this effort.)

With every good thing, there is a downside.  This explosion of sites and access and ways to interact has intensified the knowledge of how bad Childhood Cancer really is a lot of the time.  We know on some level it the worst of all worlds but HIIPA has made it harder to find out what happened to someone you spent weeks with in the hospital.  If you were in such a state you failed to get a good contact number, people just disappear.  It leaves you in a place where you let yourself believe they survived. 

It is no longer possible to be that naive.  More and more the relapses, life ending infections and complications, the impending deaths of precious lives is part of every day. Parents  put their desperate pleas to the universe in a post along with a small picture of their most valued and irreplaceable child. 

Another pin prick, more blood drips, more sadness pools at  our feet.  I am not suggesting they should not share.  I know the need to say the words and let the power of those fears dissipate if only for a bit.  A chance to reach out and find others in the same dense fog. This is a dark, dank lonely and sad place.  Cancer World is a place of despair and frustration and fear. We are here and we are here together,  our group, our tribe, our fellow travelers. We understand what they are feeling.  We know the steps they take. We know that bottomless fear and despair of lack of solutions.  We know we are dumping poison and radiating our children to as close death as possible in hope of bringing them back.  Hoping they can get back to "NORMAL".  

Some parents are sad, some are angry, some curse God, some plan the destruction of the National Institute of Health. Some raise money by shaving off their hair, some walk, some run, some have auctions and events.  You absolutly have to do something. This kind of fear and despair has to vent out of the pressure cooker that is Childhood Cancer.  I took on Chef Walter at Seattle Children's Hospital for failing to have anything to feed my daughter during her long stay.  (Check out 
www.facebook.com/BetterFoodPleaseAtSeattleChildrensHospital)  

This week I have learned of three relapses and four deaths.  I have read the agony and cries of mothers who are living with the loss of their children as time keeps marching forgetting them. I have learned of families being sent home because there is nothing left to do.  I have discovered, with more frequency, the term "Comfort Chemo". 

So... Where does all this leave me.  I can't fix it. I couldn't even shame Seattle Children's into serving something more than unwashed iceberg lettuce, frozen toasted cheese sandwiches and hot dogs.  

(Photo Stolen from Liz Selleck)

But I guess I can take a lesson from our children.

Don't stop. 
Don't give up. 

 Even when they say there is nothing left to do but Comfort Chemo.  

Journey Reality

so.... We are creeping up on the 3rd birthday of Pearl Anne.  She has been stepping up and working hard to be a grown-up immune system.  She did need some help and some re-vaccination had to be done.  Some times when you are two, you are so busy with life and saying "NO" that you forget to produce titters when you are given a little bit of a bad virus and are supposed to get to work. 

Anyway last week was a crazy, stressful and very tiring.  I, for one, am out of shape in the going to a million appointments at several hospital institutions in short order.  But we did it.  We have been excused from next year's appointment and are not expected back for the week-long trudge until 2017.  A very good thing.

So I managed to get myself pretty worked up and freaked out over the course of the week.  Mary-E looks great but then she did the first time Leukemia creeped into our lives.  She was in perfect health when I sent her off to college when she relapsed.  I know that with every blood draw, every bruise, every hair that falls, it could be a sign and not a good sign.  

Well this time what you see is what you get.  Thankfully.  

I asked Paul Carpenter (our favorite Aussie Bone Marrow Doctor) when I could stop worrying.  He asked Mary-E what she wanted to hear.  I said I wanted to hear the truth.  His reply to me was  "She is fine for now.  You will always have a reason to worry." 

That was not the answer I wanted.  I wanted him to say we were done. They had fixed her and we were released.  Instead, we have just been transferred from Pediatric Bone Marrow Transplant Service to the Adult. She will be closely followed for the rest of her life.  They are watching and waiting for something to appear, the next thing to be handled.  This journey is just going at different speed. It is not over. 

I, like a million families of children struck by cancer, want it to be over.....  Really Really Really OVER.  It is never over.  It is never ever really over. We don't get to go back to the time before cancer. I know this but there are moments I want to believe it is not the case.  

I think it is sort of like giving birth.  The pain of the actual birth recedes with time and more children are born.  So.... you ask. 24 months until the next big appointment. There will be some small check-ins.  She is essentially done.  But in reality she is not done.  She is done for NOW.  I wanted her to be done done.  I wanted to put away that knot in my stomach. I wanted to not wake at 3 a.m. in the morning with a start.  A deep chill of a horrifying dream. Over, I want it to be over.  

I am working on gathering the strength to go forward and constantly prepare for battle.  Even it is just by taking a few deep breaths.  I need to re-charge somehow.  One step, One moment. One thing at a time. 

Best use of my energy.  Putting away Christmas...... with a label maker as part of the process.  

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".