Sunday, December 27, 2015

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. 

Saturday, December 26, 2015

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. 

Friday, December 04, 2015

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. 


Sunday, November 29, 2015

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. 

Friday, November 20, 2015

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. 



Thursday, November 19, 2015

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. 





Friday, November 06, 2015

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. 


Friday, August 14, 2015

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.  




Thursday, July 09, 2015

Back and Forth

In and Out
Over and Under
Up and Down
Happy and Sad
Joy and Sadness
Fear and Bravery
Determination and Capitulation
Despair and Faith
Agreeable and Recalcitrant
Healthy and Sick
Life and Dead
Obstreperous and Tractable


This list is much much longer.  The one that we focus on is

Remission and Recurrence or NED and Recurrence.
I thought it was bad that we don't ever get to know if "Recurrence is going to happen or Remission Sticks.  It is such a roller coaster and so much happens in between.   We are close to the four-year Relapse mark.  We have passed the 11th Anniversary of being in Cancer World.  I am finally starting to breath again.  AND THEN.

She gets a stomachache, or she is really tried or her back hurts or there is a small weird bump or her eyes keep getting conjunctivitis or ____________ fill in the blank. I don't like to be a constant complainer or worrier but I at my core I am worried.  I am worried.  That little voice sits on my shoulder and keeps telling me to not let my guard down.  I am not out of the woods.  There is no exit to this genuinely secret glen.

I visit with families that have just entered Cancer World.  I spend time with them imparting secrets about hospital living and Cancer World survival.  I go to kid's funerals.  Those that Cancer destroyed.
On one day, I visited with a mom who's 4-month little girl was born with a tumor the size of an orange and the funeral of a fourteen-year-old.  Needless to say, I had ice cream for dinner.  It was all too much.

Many think I am just crazy to keep visiting and going.  I don't want to be one of those people that walk away from family and friends when it is tough.  I have seen that happen with many.  It is too much most of the time but in reality it is impossible to do it alone.  I could never have done it without those that stepped up and lent a hand and gave at the perfect moment.





Thursday, July 02, 2015

Been Dragging My Feet

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

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

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

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

When I was in highschool, I read a Ray Bradbury short story about a man that returned to Dinosaur times to hunt.  There was required path, and you were only to kill the appointed Dinosaur.  It had been determined it would die soon and not affect the timeline.  This man stepped off the path and upon return he found a small glistening blue butterfly on his boot.  When the doors opened to return him after the hunt,
everything seemed familiar but were slightly off.  It was not the same.  It is never going to be the same.  No matter how hard we try and no matter how hard we pretend and no matter how hard everyone wants it to be the same, We stepped off the path.  

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






Monday, June 15, 2015

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".  


Friday, June 12, 2015

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. 


Tuesday, May 19, 2015

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.  

Monday, May 18, 2015

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.  

Sunday, May 10, 2015

Peeking out of the Rabbit Hole....

We are coming up on 11 years from the moment that Doctor Balter looked into Mary-Elizabeth's eyes.  Eleven....  People talk about water flowing down a stream or river and washing away the  pain and fear and despair.  After 11 years, I am sure I have seen these same water molecules more than one time. 

Running water is very healing.  It heals our souls and allows us to move forward.  It takes great efforts to stop water.  It will travel great distances and make amazing detours to get where it wants to go or must go.  Sort of like Cancer Moms.  We are pretty unstoppable. 

I spent the week-end with a bunch this week-end.  I was invited to join nine other women in an amazing house in Leavenworth.  We were taken care of in a wonderful way.  Laughter, Wine, Good Food, Quiet Time.  It's so weird to be able to walk into a room and not have to introduce yourself.  The very fact you are there is enough.  No on is "there" unless they have been through the entire process.  We are Moms of Cancer Kids.  We are the lucky ones and have kids that are still with us. 

I have been trying since the beginning of all of this to figure out how to heal. The entire process has been so difficult, time consuming, soul consuming.  In all the rush to keep Mary-Elizabeth alive and handle life, lots gets pushed aside.  I know people are just sick and tired of hearing me talk about being a Cancer Mom, other kids dying. All the struggles with Hospital food, insurance companies, medication side effects, cost of job loss, cost of unreimbursed medical stuff, everything.  It should be over, it should be done but I have not been able to put myself really back together.  

As I look back, I had started the process three and a half years ago when Relapse reared its ugly head. Things were starting to turn around.  I was flirting with maybe having a real life.  I was working on my weight.  I was paying attention to the new lines and wrinkles that had appeared and put some of the world back into perspective.   

I have been bashing around and trying to figure it all out.  A bit of escape, a bit of fun, a lot of miles on the car. Some pretty special times away.  Cruise to San Diego,  Time on a beach on Camano Island, time alone in my house, time..... but inmost cases I was still worried about someone or something.  There was always an element of care taking going on.  I was worried about the people with me or needed to do something for someone.  

The Leavenworth Retreat for Momcology was so different.  We were in a wonderful place but we had only one thing to do.  Be pampered.  Food, treats, massages, henna tattoos, quiet time.... I even tried Yoga.  It was so amazing.  Time and NO worries was the required activity.  Time with coffee on a deck and a bit of wine.  Some much needed retail therapy and time to process, listen, commiserate.  

Most of us have a strong support system.  People that made it possible for us to come out of this tornado with some semblance of a life.  They did our laundry, sent us money, fed us, brought us wine, cleaned up our back  yard and were on call for everything we were willing request.  It was remarkable.   But.....

There is something so healing to be with your  Peeps... Those that have walked that mile and been on the same journey.  We don't have to explain the anxiety, the fear, the anger, the disappointment, the loss of the certain well planned future of our children
.  We are freed up to speak and know we don't have to explain.   I came away in a completely different space.  As I packed my bags and combed my now curly hair, I felt restored and revived in a great way.  I felt encouraged and newly connected to those that spent the week-end with me.  

Let's be honest.  We need way more slumber parties.  The YaYa Sisterhood had much more content about the needs of women to help each other and we should pay more attention.

Time to spread the word about Momcology and work on making more retreats happen. 

Thursday, April 30, 2015

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 · 

Tuesday, April 21, 2015

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.  




Sunday, April 19, 2015

Mixed Blessings

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

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

Katie will never be forgotten. 


Tuesday, April 14, 2015

Finally Getting Some Traction

And then the phone rang.  A voice asked if I was interested in doing an investigation in a Puget Sound School District.  And just like that, I was back in the land of  the grown ups. 

I sit here this evening with papers in files, notes to be reviewed, more questions to ask and soon there will be a report to write.  

Feels good.  While I have learned to adjust to almost anything, I really miss working.  It is good for the soul.  Hopefully there will be more of this work where it came from because if this becomes a real "gig" I might be able to fill in the Daruma that has been sitting in the window for a long long time.  

This feels so so good.  

So here is how this all works. 
Bodhidharma was a Buddhist monk who lived during the 5th/6th century AD. He is traditionally credited as the transmitter of Ch'an (Zen) to China. Little contemporary biographical information on Bodhidharma is extant, and subsequent accounts became layered with legend.[1] According to one tradition, Bodhidharma gained a reputation for, among other things, his practice of wall-gazing. Legend claims that he sat facing a wall in meditation for a period of nine years without moving, which caused his legs and arms to fall off from atrophy.[2] Another popular legend is that after falling asleep during his nine-year meditation he became angry with himself and cut off his eyelids to avoid ever falling asleep again.

So As I have been told, you make a wish or set a goal and color in an eye.  When the wish or goal is met you color in the other.   

I am so so close. 

Friday, March 27, 2015

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. 

Saturday, March 21, 2015

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. 

Monday, March 16, 2015

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.... 



Tuesday, March 10, 2015

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....  

Friday, February 27, 2015

Anxiety feels like Hunger, serious and scary and crazy hunger.


How do I know?  You ask?  Oh well you can  be having a great day.  A sunny in Seattle day. A day where there are birds chirping, daffodil blooming, warm breeze coming through your new front screen door.  It can be a day that it doesn't bother you that the windows are in serious need of a wash.  


Then:

A phone call out of the blue letting you know a dear friend has died.  The very friend that has been on your mind because a mutual friend had died and you didn't want to tell him about his passing.  

I have had people in my life that have very short lists of friends and people in their life.  They sort of hide away and keep to themselves.  I always thought that would be a lonely sort of place.  Losing the people that have touched your lives in a special way is also very lonely.  

Mikie was a part of our entire Ballard house life.  He had a little dog named Betty Boop and all the matching items one would imagine of a great queen.  He planted and fussed and cleaned around the place.  He talked to everyone, he fed all the dogs treats, he painted, installed new doors, he went on endless walks with us and commented on every sort of event in the neighborhood.   

He was a funny little thing but he was a great friend.  A bit clueless sometimes about lots of things like giving my roll of butcher paper away when he moved because he figured if I let him use it to wrap his stuff, I didn't want it back ..... but I loved him.  Mary-Elizabeth loved him. The whole neighborhood loved him.  His presence is woven into our lives with bits of shiny pottery, a beautiful chair, a fun pot, a well planted traffic circle.  

He added great beauty to anywhere that he touched.  I have been looking for my pictures of him or of the Ken Cake we made him for his birthday.  Right now they are not easily available but had Mike been with me, he would have loved seeing the baby hummingbirds.  

He was loved. He will be missed.  The world is a lesser place because he is no longer here.   He and Dad can smoke small cigars together in Heaven.