Certain Days there is Space for me to do Certain things.

For the first time since transplant, I am leaving our house for what seems like long time.  I am truly going to be away.  We were in Eugene a whole lot of last summer but it was different because if need be, I could be home in 5 hours. The dogs were with me.   

Nothing huge.  This time time I am leaving the dogs, the house and someone is taking up residence for the entire time we are gone. I have taken this time as a time to clean out a few things.  One of them is my voice mail.  

As everyone knows, I am terrible about listening to messages.  I just look and call back.  Seems like we can cut to the chase.  Seems like a good thing.  So I took some time and cleared some messages. They are stingy about how many you can have at one time.   I listened to the first few messages on the rest.  I have three or so very very old messages of Mary-E as a child and one or two from Mom.  I have a few from my sibs but the most difficult are the ones from our Dad..... That voice, that bit of humor and whimsy, that call made to point fun at some sort of item in the news, a serious point to be discussed about a legal issue or just to say hello.  I could not bring myself to listen.  Just hearing the voice, for a few minutes was enough.  For now.

There has been lots of discussion about the new Cancer Kid movie coming out this summer. It seems to pop up everywhere.  I made the compromise and watched 50/50. Someone needs to tell the peeps in Hollywood that when the hair goes, it also means the eyebrows and the lashes....  I would give it a 4 out of 10.  Love the people. Story written by someone with a book and no real cancer world experience.

So I The Fault is in the Stars appears again.  Yes again today.  I protest. I look at another web page.  There is a secret Facebook page for moms and caregivers only. Have to be added, have to be approved. Have to know the secret handshake and have the correct browser.  They have teamed up with another organization that listed some of there projects... 

I hit a link and found this...
www.youtube.com/watch?v=5iTImZGOtc4

This is real. This does have the real ending. Hollywood should make this into a movie.  

Now we are off for a bit of an adventure....  

Seattle to?????

Two Worlds

So there is a big movie coming out this summer. "The Fault is in Our Stars".  Young adults, cancer, love, death. 

Cancer just keeps popping up and I feel like I am playing gofer game.  We see it all around us.

You can't ever win. They are everywhere and there are more and more of them coming.  I am sure the Hem/Onc docs and researchers feel the same. Just as they solve one problem, another pops up.  No matter how prepared you are, they keep coming back.  Never ending. 

As many many know a number of us are working on founding a Non-Profit named the Wishing Rock Project.  It is mixed group.  Friends, relatives, neighbors, Cancer Moms.  All working to make a connection to the new families.  I was meeting with one of the moms tomorrow.  I received a message from her apologizing she could not meet.  Scans were done last week and they found cancer again.  Again. Again. Oh Crap.... Again. 

It took my breath away.  A moment of terror.  Then I realized I need to send one of the Wishing Rock Bags to her.  Sometimes it is all you can do.  Reach out, let them know you are listening and try to give them a place to leave a bit of the pain and fear and endless anxiety. 

Here is a family trying to regain traction in the "real world".  Moving forward, working on catching up and trying not to look back too much.  Starting to think it was over.  And then....  It has been my experience that no matter how much time has passed and no matter how good things appear a bit of you remains in Cancer World.  Just a tiny finger or a wrinkle or a bit of gray hair.  It remains.  It is stretchy and can seem to be a very very very long tether but a tether it is. No matter what, it is there. It may be invisible to the "real world" eye but it is there.  

Given this is our dual reality, we are going to pull at the tether a bit.  I am amazed that ME is willing to go the distance.  She was not even willing to go to Eugene until Dr. Belle promised to be there, just in case.  Some how she is at a place she is willing to test the tether.  We are headed to places with no doctors, no internet and no good coffee.  It will be a challenge. We are taking a book to read on the road.  I hope to be able to needlepoint for a few days. 

We both understand this is only a temporary escape but we are going to find a bit of respite. A bit of joy, a bit of adventure and a bit of fun.  We expect to find these guys. 

Promise, I am leaving the mallet home. 

I Can't seem to walk into the fire anymore....

I just don't have it in me anymore.  I don't have the strength or the will to really be of help to people in legal battles.  I thought I might be able to do a little.  I was wrong.  I was so so wrong.  

Making a phone call on behalf of someone is hard.  I don't think I can handle the disappointment. The expectations that things should be fair. I have lost my touch.  

I always was a tenuous lawyer at best.  I never was a Lawyer.  You know one of those people that always wears a tie and suit and never leave the office.  They are there because they are Lawyers.   I think it is sort of like the military.  They want you young.  Mold-able. Some insecure in their selves so they cloak their insecurity with Lawyer Ness....  

Now maybe it is not fair. I do pull out the lawyer sometimes.  It is always a judgement call. Always a wonder if it is a good idea.  We lawyers don't have the best reputation and we know how to make people miserable.  Maybe that is what is missing from me.  I just don't have it in me any more. 

My entire being has changed. I move in a different reality.  You see me, you talk to me, you do things with me but I am really not attached to the world in the same way. 

I spent the morning with a Mom in the Chicago area with a child headed to transplant.  They might be denied because of a myriad of reasons.  Oops, no life saving procedure for you.  Go back start again.  Sorry. 

I so dreaded transplant.  I have seen Elise R. go through it and knew of its horrors.  It was so bad.  I never saw anyone have a "easy" time. I was horrified when they told us she was headed to transplant. I tried to talk them out of it.  I didn't want the double lumen. I didn't want to have to find a donor. I didn't want.... and then.

I couldn't wait.  Once I knew it was coming, I was ready. Let's do this. Lets get going. What do you mean it takes months? What is the hold up?  What do you mean she might not be in remission? .007 looks pretty good to me. Why do we have to do all those tests AGAIN  We just did them!  Oh, you mean if things aren't perfect we might not go to transplant?  Oh, I want my transplant and I want it now....

The old, wanting what you can't have.

Would I have let her sign the papers if I had known what I know now?  I would because she has finally turned the corner.  If she was one of the many that have died?  I don't know.  I really don't know.  

We all make the best decisions we can at the moment it has to be made. Then we have to walk the path chosen.  

Conversation goes this way:

I don't know how to best make a decision?

But it has to be made.

What ever decision is made, is the right one. 

Sunning Turtles

Reminded me it was important to take a few moments, when the sun arrives.  

I am sure 93% of Seattle is out soaking up some much needed vitamin D.  I let myself spend a bit of time in the sun. 

Wishing Rock Dreams....

We had another meeting last night.  Out on the patio, warm, Ice Tea.  Good ideas, good conversation.  No cookies. 

Shannon Huber came.  Jaxon was her special little guy.  He has been gone for a year.  

He was a special little guy.  

After everyone left, she and I had time to talk.  We both agree this Wishing Rock thing is a way to stay connected in a meaningful way with those that have followed us at Seattle Children's.  There is such a need to reach out and touch those that are starting this process.  We are hoping to do a small thing. A meaningful thing.  

We all want our time in Cancer World to have a good purpose.  We need light, not dark.  We need to make sure the hours we all wait, the millions of dollars expended, the long suffering of our children have purpose. I think this project was born from a desire and acknowledgment that  as humans we need connection.  It is important to reach out touch and do a kind act.  More important, the connection needs to be made. 

So, we are off and running.  Things are falling into place. We are going to make this a great thing. 

Hope

Down a deep narrow dark alley a fern reaches for a bit of life giving sunlight.  We all need to reach out a bit 

Slight Variations and the Twilight Zone

We grew up on the Twilight Zone.  I remember an episode where a women's house was invaded and she was trying to get rid of the tiny invaders.  They had little laser type things. They pestered her and it was sort of scary.  As she pounded at them and smashed them with a broom the camera scanned down and there, on their tiny little space ship was an American flag...

One of my first lesson's in perception..

We have been in the Twilight Zone for a long time.  Sometimes it seems normal and might look normal but that little pesky laser thing keeps hanging around.  You know it is there but just not sure where.

I am looking out my window and am looking at my amazing two trees.  Each is a Katsura, a Japanese tree, round leaves, early leaves on, early leave off.  Each fall the trees turn and are a little bit different.  One if more orange and red, the other is more yellow.  One is taller and more narrow.  Their bark is a bit different  They are not identical upon some serious examinations.   

As a species, we look for differences. We spend a whole bunch of energy trying to be "like" everyone, yet somehow different.  We want the similarities to be positive unless there is a problem, real or perceived, and then we want to differentiate.

  It sort of goes like this:

My child has the good kind of ALL (like there could ever be any good kind of Childhood Cancer.) 

They found three 10/10 bone marrow matches.   The cells are coming from Australia.

There are no cells we are going to have to use cord blood. 

We are in a trial. 

There isn't a trial but we are trying to get on one.

We have never had to miss a day of chemo because the counts are good.

We have missed whole doses of chemo because the counts were so good.

This is a relapse post Lymphoma Treatment.

This is a relapse three months off treatment. Six months, two years, 57 months...

This is a new secondary cancer.

All are variations on a theme but they are still the same terrible childhood cancer.  It just sucks.  No other way to put it.  It just is a bad bad thing.  

The good part is that we come together, we recognize the pain, we gather our resources, we help each other, we learn about how wonderful and generous the world can be. We find the strength and help of God, in all his/her iterations is ever present. 

I guess I choose to make my Twilight Zone look a bit less dreary....

Cancer Mom: Humor a Must

Keeping a sense of humor is required.  It is necessary to not go into the deep dark place of reality.  It is important to deflect the constant barrage that is being a Cancer Mom.  If we don't laugh, we will cry, fall apart, kill the barrister, bomb a bank and then go back to the hospital to face the next thing.

Today I was on the phone with someone from our team from Cancer Part 1. They were commenting on how beautiful Mary-Elizabeth's skin had always been.  I pointed out the freckles came from radiation and during the difficult acne years she was on so much chemo she had no white blood cells to make a pimple. 

As a Cancer Mom we have to dig and find the funny moment or  thing about the situation or we will die.  Humor is a must.  We don't have a choice.  We are here. We are here to stay. We have no practice, no idea what we are doing but we have to be ready to laugh about it.  Granted, sometimes it can be "too soon" but at some point the laughter comes. 

Example:  ME as in the hospital for an overnight dose of something so nasty the nurses double gowned and masked when they were administrating the chemo.  It was the night of Bush v. Kerry election.  Things were going okay as we drifted off to sleep. When she finally woke up and we had the final news Kerry would really really lose, she started to be nauseated.  It went on for hours and hours.  It took an act of God to get us home. 

One of the young interns came in and asked what the problem seemed to be.  He knew she did not have her nausea under control.  I told him it was her body's reaction to 4 more years of Bush.   He just looked at me,turned around an left the room.  I thought it was funny and partially true.  But then I was sleep deprived, had a child with a life threatening disease and nothing was really funny. In fact it is a way to keep grief, disappointment, frustration and anger at bay.  It holds it in the underground tanks until they begin to leak.

As a group, we are mostly able to see some sun in the dark clouds.  If we don't, we get dragged down to places of horrible despair and we do not have the chance to be there too long. We plow through for the most part.

At some point it has to ooze out and be exposed to the sun and healing has to begin.  I am attaching a link to a great bit of writing from a mom who finally met her anger and has decided to let it be acknowledged.

http://mindithemagnificent.com/2014/04/23/an-unexpected-guest/

It is worth a read. 

Just know eventually most everything can be turned around and show its fun side.  We keep the brave out so everyone does not know how scared we really are.  

Eagle Sighting

WE are bird watchers.  Binoculars, feeding, listing making, discussions,  Come Look.... It is the story of my life.  We are observers. We were trained to see things other people don't. 

In fact after I took the MMPI (some sort of test established to figure out if you are sane) during law school, I was called in and asked about some of my answers.  I had answered yes to the question:  Do you see things other people don't?  I answered yes.  I do see things other people don't.  I am more observant and aware.    A gift and a curse.  

I see pain and suffering in odd places.  It does not leave me. I read between the lines, I observe the silence and lack of communication as a sort of communication. I don't see dead people but I see very sad and hurting people.  It was the best and the worst of my lawyer time.  I wanted to help. I want to make it better. Many things can't ever be made better. 

MEB is doing great. But she is deeply deeply scarred and will carry those within her being forever.  Many are not visible. They are there.  Sometimes they rear their ugly head in odd ways. Panic over bad grades, worry about when a check will clear, avoiding new things.  Now lots of these are very normal stuff.  Hers has a bit of unusual intensity. It makes me worry but then I don't think there will ever be an end to the worry.  

We went to a special birthday party yesterday and went for a walk looking for a beach path.  She would not enter the wooded area even though it was raining and dry under the branches.  She fears the woods because of the fungus, the mold the stuff in those areas.  No amount of coaxing would work.  Instead, I left the dry and we walked up a pretty impressive hill.  5 flights on the Fitbit. 

 During the walk we were looking up and down and out on the water. Then it was spotted, the large mass of dense sticks tucked in the top third of a Douglas fir.  We had seen a couple of mature Bald Eagles flying around and now we knew why.  A moment of quiet observation of a good thing.  The sort of observation makes you think about things grander and more mysterious. A special moment of wonder.

Then there is the really frustrating bit of observation. A new bird, a flash of yellow, serious concentration on the small black and yellow being searching for food.  But sometimes even with the most astute observation can be thwarted.  Somethings are so very difficult.  One of these visited. I will never probably know which one it was.  It just was one of them.

One thing I have learned is that a flash of observation sometimes has to be enough.  We seldom really ever know the answer.  

Piles of Pennys

So how long will the penny be around?  Canada has stopped using them. We have them but they feel weird. I have a big jar of them because we started saving change a couple of years ago. Or to be more precise, I started to save change.


Some are shiny. Some are old and tarnished. Some are really made with copper. I even have a couple made of aluminum from WWII times. We are attached to our pennies. 


 A penny for your thoughts.
A penny saved is a penny earned.
Penny wise but pound foolish.


No one really pays attention to them but I bet if we just stopped using them on a certain day, there would be screams.

I think like many things the penny will fade from our memory.  It will be something we think about when we run across those spare ones fallen in the corner of a drawer.  Insignificant. Minor. Minuscule, not worth the bother.

It makes me wonder what else we have let fall in the drawer.  An unfinished letter, an old stamp, a memory card, a cord from a long gone electronic devise, a half-used up pen, a key, a broken chain. Things that seem to have slipped away from our lives. 

Because I know things can slip away, I try really hard to keep in touch with the important ones.  I am working on people right now.  I figure what is the worst that people can do be ignore me.  (Not that I am easy to ignore.) I want to make sure I contact and connect with people in a real way.  A call, a note, a real cup of coffee. An invitation.  It is not necessary for the house to be perfect or even acceptable.  No one notices I have a pile of piles that needs to be filed or bits and bits of projects on my table in progress.  A book or 10 on the coffee table might lead to a good conversation and some exchanges of ideas.

I guess as my soul energy returns I can reach out more.  I have been in a quiet place for a long time.  A place of self reflection, a bit of self pity, a place of worry and deep concern.  A bunch of pennies have piled up and it is time to use them.   

I am the Mother of a Bonifide 17 year old as of April 12, 2014

Yes her age in the US is 21.  If she was in Korea it would 22 and if she were in Saudi, who knows (they have a truly complicated calendar.)


We all know she is an old soul.  She never was a child. I remember a time when she was about 9 months old and lying on the bed, looking at me and talking. She was just jabbering in completely sensible statements with lots of meaning and inflection.  I was not able to understand but it was at that moment I realized she was never ever going to "not talk".  She is an old old wise soul.  She carries cancer around with great grace.  She doesn't flaunt it, she doesn't explain it, she uses it to her greatest advantage.  Not in a bad way. She is able to take the lessons learned and apply them to her life.  She is very serious about school and picking her friends.  She knows she has to say no to lots and lots of things.  She has watched death swirling around her and knows lose as no one should at that age. 




She has lost 4 full years of her life.  Two years during Cancer Part I and then two during Cancer Part II.  She did not have the energy to keep growing emotionally.  She had to keep focused on getting well.


Driving was a big example.  


She took Driver's Ed at 16, pretty normal.  I could never get her to drive after that.  She just would not venture out.  I remember taking off the moment I was able to drive and never stopped.   I even bought her a car in anticipation of her driving.  Okay it was a tank but it would protect her when she ran into those things that jump out all over the place when kids learn to drive.  


Well she just didn't do it.  No driving. No real movement.  My mom finally told me to "leave her alone!!!"  She told me ME would drive when she was ready.  She always had her own schedule and was going to stick with it.  Mom was correct in that regard.


ME decided it was time. With the help of John Carden and several hours of driving and cones for parking practice.  I guess she does great without her mom in the car.   It is all good. 


She scheduled the written test and passed. She scheduled the driving test and passed. She went to the licensing bureau and they took a wonderful picture.


One more step in the road to normal. Hopefully the transplant will give her the years to catch up. Boys are next.  Her dad can worry about that!....

Windchimes.....

WE have lots of them.  Lots and lots.  My ear only likes certain types.  They need to be tuned.  Not just clanky.  They need to happy sounds.  They clear the air and the surrounding area of bad vibes.  They must be willing to become tired and faded over time.  A bit of rust seems to be all right.  It is a good thing.  clear crisp sounds. 


I recorded some of the night sounds.  It starts with slow movements of the trees, there is a rustle in the magical Douglas fir in the neighbor's yard.  It gains some power as it flows through the rest of the grove.  Then they start.  The first clang of the rough, single temple bell, the various chimes join in, followed by the gong. The garden gong.  A virtual cacophony ensues.   As quickly as it starts the silence returns.  


On a good night they will bang and clang with great enthusiasm.  Great fervent evil spirit banishing sounds ring out.  Mostly we have to be happy with a bit of some tinkling. Gentle reminder of the presence of good spirits.


I found a new set the other day at Good Will.  Brand new, Woodstock Chimes.  Olympic... power of the ancient gods.  I know why they had been donated, they are deep and resounding as they sway with the trees.  They have a whole area of their own.  One set it all that is needed outside of Mary-Elizabeth's room to keep away lots of goblins.  Lots and lots.  


I need them.  A small barrier against the never known predators stalking us.  I am not sure how to keep the demons away.  Sort of like garlic against vampires.  Not sure if it works but know it is something I can do.  It is one small thing. I guess it is why the tiny chimes are in the Wishing Rock bags.


Every day I read about someone just beginning the Cancer World journey or the Bone Marrow Process.  I take a moment, feel the panic, take a deep breath, say a bit of prayer and answer with a comment.  It is not a usual comment.  Even today I don't really understand how horrible the process has been.  Day after day, week after week.  While I was responding to a mom, I came up with the name of my book.   "It Certainly Isn't Like it is on TV!!!!!" 


Please come visit on a windy day.  Enter through the secret barrier of the chimes.  Know they are there for everyone.  Each a message to those we have lost, those who we will lose, all who are fighting, all that hope to never have to fight again.  

Marys and Sallys and SallyAnn

I had an interesting conversation with Esther Smith last night.  It was midnight her time, in New York City.  (She and I have a weird connection about Address Books and a bunch of other stuff.  She teaches at Cooper-Union and her husband runs a Printing Press company Purgatory Pie Press.  Worth checking it all out.)


So last night she posted a question about the following sentence: Mary's going to the store to pick up some coffee for Mary's brunch tomorrow.  


So the question revolved around the issue of Mary's as a possessive or Mary's as a contraction for Mary is.   I love questions like this because if you made the statement with the spoken words others would understand you.  We say it all the time and don't think twice about it.   Mary's = Mary is if the context makes sense.  But when it is written, it is clearly incorrect.


Sally's writing a blog post this morning.
Sally's blog was about Sally's blog.


Perceptions, expectations, reality, it is all such a slippery slope of words and other such nonsense.  I have such a different reaction to everything I read and hear than you do. We each have every thing filtered through our own life experience.  It depends on so many things.  Something as simple as how tired we happen to be or what has gone on that morning.  How frustrated, how emotionally spent we happen to be.




Because of my lawyer training, I don't quite hear things the same way as you do.  I usually ask the question more than one time because I want to make sure I understand.  It is just something I do because there are so many ways to say so many things.  We all live with assumptions and make them at the most inopportune time. 


It made me think about Marys and Sallys and all the rest.  I have found I definitely carry two Sallys with me most of the time.  One is Lawyer Sally.  Outside Sally, Hard to get along with sometimes Sally.  She sort of heads out into the world read for battle.  SallyAnn is not like that at all.  She is about 10 or 12 years old.  She sort of was stuck when her brother Eddie was taken to Napa State Hospital.  It did not make sense to her why he had to go.  So she is not quite grown up yet.  She still likes to watch old movies from the 50's and loves Cream of Mushroom Soup on everything. 


The Sallys knows lots of Marys.  Her Mom, her Mother-in-law, her daughter, Mother Mary, several cousin Marys and Aunt Marys.  Lots and lots of them.  She feels a certain comfort in all the Marys in her house and her life.   Marys keep her centered and her feet on the ground.  She seeks them out when she is upset and is a bit confused and worried and panicked and generally out of sorts.  The Marys give the Sally and SallyAnn a place to rest and they catch her all the time when she is floundering.  


Sally's blog is a lot about one Mary or another.  SallyAnn knows that no matter what has happened to Mary-Elizabeth, Mother Mary also had it bad.  Her child suffered and died in away she never imagined.  


So Mary's keeping me sane during this time of growth and transition. Now who knows which Mary's providing the solace and balance but since I have lots in my life, we can rest assured it is one of them. 


(Some have commented on how my writing in this blog should be more polished.  I don't think Lawyer Sally writes here.  There is a smaller more confused scared SallyAnn that is the main writer. She writes when she is scared and hurt and overwhelmed.  That is her best stuff.  She pours her heart onto the "web" and in a sense lets it go.  Sometimes, like today she is just babbling but feels a need to express some babbling. Rest assured, some day grown up Sally's going to do some editing. )               

Thoughts on Change

"Everything in the universe is constantly change and nothing stays the same and we must understand how quickly time flows by if was to wake up and truly live our live"

Jiko, from A Tale for the Time Being.

But how do we know if we are awake?  I guess that is only one of the questions.   Do our dreams prod us? Do our fears let us know we are slacking or we are awake?  I wish I knew the answer to all of that but I suspect the definition is different for everyone. 

I know we all expect to live each day to the fullest if we are that sort of person.  I think some are more bold than others.  Some are risk takers, some are risk avoiders.  I know for sure my daughter is a watcher and thinker and she does not make a move without much cogitation.  The whole menu is read before a decision is made.  I am more of an impulsive person.   Both methods are good things.

I suffer from a fair amount of PTSD from the whole cancer twice in a decade thing.  It changes you but I think it does so for the better in lots of ways.  It certainly opens you eyes to another realm.  I am entering the alumni role now.  We have graduated, so to speak.  It gives me time to reach back and try to help those in the midst of the process. 

I remember when MEB was first diagnosed and St. Joseph came to the rescue.  The school, the church, the families.  The first on our door step was Rick Boyle.  He has been at our side during all of it, the first diagnosis, the relapse everything. It was an amazing gift and will never be forgotten.  Not to say everyone did not do something of great value at the time.  He was part of my new tribe.  He knew in that way only one in the same situation can know. 

After induction to the tribe a creation of new part of your being happens.  Sort of like a growth.  Maybe it would be better to think of it as some sort multiple new neurons in your brain.  It can't be removed and it sort of becomes your friend.  That bit of growth gives you more compassion, more insight, more creative powers, the ability to help those in your tribe survive.  It makes you know things no one wants to know.

So our time in Cancer World keeps changing who we are and what we see and do.   I am trying to make it less of who I am.  I don't know if I will ever be free of the worry and anxiety it produces.  I find that if I can help someone else and focus on their journey, it helps. A lot.

Change is always changing.  Time is always moving forward. I have no control over much.  Mostly I think I have control but then I am very very wrong.   Everyday I try to do positive things for others.  Good things for myself and keep moving through life   Awake.

Busy Busy Squirrls

When I was a kid we had a house in Spirit Lake Idaho.  It was a great house.  We had a big lot with three giant trees on the other side of the street with big maples on our side.  We also had a sour cherry tree on the side of the house but mom sort of hacked it to death so she could see the lake while having coffee in the morning. 

One day we happened upon a large bag of nuts and Mom dumped them at the base of a tree.  We left to do some errands or go swimming or go visit Grandma and Grandpa on the other side of town.  When we came home there was still mass activity.  It went on for hours.  The squirrels did not quit until each and every nut was gone. 

Mom felt awful.  She was sure they were exhausted.  She never ever provided an unending supply of nuts to them again. 

Mary-Elizabeth is very Squirrel like.  She starts a project and will not rest until it is done.  She does her homework ahead of time.  She spends hours and hours on something until she really really understands it.  The hours she has worked on her homework and her test prep is amazing. 

I remember how things went when she started 8th grade, still in treatment, still suffering from nasty chemo brain and the radiation was still reducing the brain cells.  She would come home from school and start studying and did so until she went to bed exhausted.  Every day, every week-end every break.  She was like the squirrels.   Despite everything she graduated with Honors from Holy Name Academy, was accepted into 9 of the 11 schools she had applied. 

She struggled as every freshman struggles but finally was able to be a successful Gonzaga Student.  Many more hours, lots of study groups, tutors... what ever it took.  Then.... September 28, 2010 the leukemia returned with a vengeance.  Now remember she did go take her tests before her school ending blood draw.

One Relapse, One Double Cord Blood Transplant, Two years of struggle and pain and misery and back to Gonzaga.  Hours and weeks of study and more tutors and time with professors and lots of other helpful people and ME was finally given proof hard hard work pays off.  Yesterday she received a letter from the Math Department letting her know she was one of 50 out of over 1000 nominated for the math prize. 

 

 

 

The squirrels had their dens filled and ME has filled her brain one hard problem at a time.  Go MEB!!!!!

Darn I wish I would have thought of that earlier.

Mary-E is doing great. She is thriving, she is applying for Engineering internships. Her professors are happy with her progress. She is at the top of her game.  I should not complain, or worry or even note this ongoing sadness in her life.

Every time she sees a new baby or a small child she melts. Every time she has a hot flash she melts.  Every time she realizes she will never have a baby of her own making she dies a little bit in side.

Why in the hell did I not make sure she had some of her eggs frozen when she was between treatments?  Why?  What was I thinking?  Why didn't someone mention it to me?  It would have been a costly but do-able process. It could have happened over a summer.  I could have found some money somewhere, there are people at the U that take care of those things. 

For all those of you that will reply or think about how she can adopt or foster or snatch a cute baby from an abandoned stroller, she knows. She knows she has other options.  But that is not the point.  Trust me every single boy, of appropriate age stored Sperm.  Easy peasy.  No issue, not discussion of cost, deed was done and they moved on to injecting horrible poison into their body. Like many things, not so simple for girls.

Boy one bit of advice I would give everyone with a girl child would be to store some eggs when it is time. 

Just a thought for the day.

Rainy Day Contemplations

First, I hate to tell everyone, St. Patrick's day is not until tomorrow.  I don't care how much green you wear, how many parades you have, how many fun runs, it does not count!Okay that is off my chest.

Ss some of you might know I had an experience around Christmas that made me want to reach out to some new Cancer Kid families.  They were unfortunately introduced to Cancer World on Christmas Eve. 

I searched my brain and began to put some things in a bag.  I thought long and hard about what those items might be.  After two stints in intense Cancer World, several years apart it took a while.  I had learned a lot between treatments.  There is lots of "stuff" available at Seattle Children's but not always what you really need.  

We ended up spending lots more time inpatient the second time.  Months and months at a time.  Did I mention months and months and weeks and more fortnights.  So the gathering began.

1. A multi-useful bag.  As a parent you are always hauling around stuff.  Cloths, clean and dirty, stuff to go to the shower.  Extra stuff from the room.   A good bag is necessary.  

2. A china cup.  Months of paper cups are hard.  It feels so so institutionalized.  Nothing like that morning cup of coffee from Starbucks in something you can warm your hands on.  For a few nano seconds it is possible to pretend you are having a moment of peace and quiet at your own home.  Also I was moved by this passage years ago.
"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

I also let the new families know there was instant hot water from the nurses and they had tea in the nutrition rooms for the families.

3. A Starbucks card to get the families started on their way to being Gold Club members.  Oh trust me during admissions food and drinks from Starbucks is a life saver given the lack on going lack of nutrition at Seattle Children's.

4. A small shaker of Cinnamon Sugar.  Cinnamon settles the stomach and helps when there is not food from the kitchen because they are closed and your child has been NPO all day because the procedures are backed-up. (Happens all the time.)

5.  A magazine.  During Cancer Treatment the most any parent can read is a page, with lots of pictures.  I think this is one reason bible scriptures are helpful. Short, and to the point.  Granted I did read House of Seven Gables and War and Peace but that was just because I am weird and it took me a long long time and I had started them before.

6. A bead. A small bead that will fit on to the parent ID badges, the necklaces we all wear to ward off evil spirits.  Cora Breuner took a bead off her own necklace and gave it to me during a very scary dark time.  I have handed several to moms in crisis.  I left one with my friend Elizabeth from NJ and with Carol whose daughter survived a transplant for lymphoma.  Some of the kids get beads of courage but the Mom's need them too.

7. A rock.

A stone, a little bit of something to grab on and place and focus on during some of those awful times during the process. The pain, the despair, the fear and the agony that is transplant and cancer treatment.  A stone. A special stone. One that shows a bit of interruption in life.  Not a big one. A little one. One that permeates everything in your life but still only a disruption.  This stone had a disruption but was able to keep it together and regain itself.

8.  A few pre-stamped note cards.  Pretty happy ones. Ones that can be used to thank all the people in the family's life for all they will have done for them.

9. A small warm fleece throw.  Hospitals have blankets but they are nasty and scratchy and smelly and need I go on?  Something soft and warm to gather around your shoulders at 2:00 am is a good thing.

10. A wind chime. Oh yes, the chime.  We didn't stumble on to these until our first night of our first month of Blue Thunder Jail.  Mary-Elizabeth had 6 various IV pumps, we shared a room with two other kids and their pumps.  One night the pumps alarmed every 15 to 20 minutes.  I still can hear the noise in my head.  I came unglued.  The next morning I went to City People's Hardware store and found the smallest, good sounding chime.  Not big, not noisy.  Pleasant tinkling was the goal.   We installed it and things got better.  I think the pumps were feeling unloved.  Our chimes were with us for the entire time of the Transplant.  They were placed for either maximum sunlight or pump duty.  They have been passed on to another patient that will be spending months in the hospital.

Then there is what ever. What ever strikes our fancy.  Maybe some nice cream or hair products. Some shower shoes, a list of places that deliver real food from the outside world.

I approached Seattle Children's Guild Association and this was their reply."

Hi Sally,

 

I hope you are doing well. I am sorry to be getting back to you nearly a month after we met.  It has taken me a while to reach out to different individuals to seek their input.

 

  We talked about the bags and the challenge with storage as well as the contents not necessarily being the right fit for all families.  We think it is a lovely and generous idea, but it is not something we are able to accept and distribute at this time.  I know that every item in the bag is meaningful to you, and for good reason based on everything you shared with me at our meeting.

 

I have reached out to other staff members at Karyn’s recommendation to seek ideas for items that would be most helpful to patient families should you be interested in changing direction of your support.  The response so far has been that food bags and gift cards are the greatest need – which is currently a project that we are doing called Operation Family Care (see attached flyers).   We would welcome your support of these efforts if you were so inclined.  You do not need to be a guild member to participate.

 

Regarding the Wishing Rock Guild, we haven’t processed your application or membership checks as we would need to determine a different project than your original intention. Should you desire to raise funds for the cancer program at Children’s, we can talk about different funds that may interest you in supporting.  

 

Is there a good time Melissa and I can call you and discuss other ideas?  I know you feel strongly about your bags and thus may not want to participate in any other efforts. If that is the case, we totally understand.

 

Thank you Sally.  Hope to hear from you.

 

Aileen Kelly

Executive Director | Guild Association

 

 

 

Not to be dissuaded we are going ahead.  I think Aileen is right.  This should not be a project for Seattle only there are other very deserving families in pain, not just here.

As the rain continues in that steady drippy sort of way that is so Seattle, I will start the foundation paperwork, Work on an agenda for our next meeting on Wednesday the 19th and carry on.  Seems like the right thing to do. Please contact me for more information.

Passages...

Some are dark and gloomy. Some are sudden. Some are full of light and wonder. Some are just so scary we cannot even begin to comprehend the importance of the event. 
Sometimes they slip by and we don't know they happened. 

I hate to plow through life and not notice.  Not pay attention to the important moments.  The person that needs a moment of your time to re-establish their grasp on their life.  The moment to listen and try and help.  We need this going both ways.


We lost such an important person today. Anne Lunceford, age 93.  She had been slowly winding down for awhile.  A long while.  She knew people and still was able to express herself but the spring was pretty weak for a long time.  She had been a part of my life since I was 13 years old.  Always a smile, always a willing moment. Always reading her bible quietly. Hair always the same.  

 

She is going to be so surprised when she is greeted by her last dog, Min Min.  No one had the heart to tell her Minnie had died.

 

She made a million cookies, said a million prayers, took in a million dogs and cats that were not her own.  There was always a calf in the corner of the kitchen that was wanting a special bit of extra care. She would never turn you away hungry. She would always take your forgotten paper to school. She would never be upset when Kelsie the Westie locked her out of the car. She would never not pick you up at 2:00 am at the train station.  She always gave you the best of everything. She gave the best she had to those she loved and she loved everyone.

 

The world is a smaller sadder place today than yesterday or even this morning.  If everyone did just one Grammy like thing.  It will end up being a grander place.

Intentions

We are all guilty of misunderstanding the intentions of other.  We read them through our own intention prism.  Sometimes the view is drastically altered depending on the overall ambiance of the moment.

We intend to be supportive but things get in the way and we are dealing with our own crisis and then there is the snow storm and a new project.  We intended to reach out and then the perfect moment passes and then the acceptable moment passes and then it is just too darn late and it is embarrassing and shameful and oh well.  We intended to reach out.  The other person or family might never know. Too late now and it is best to ignore the event ever even happened.  The best intentions are now a reason we don't see or communicate with someone we dearly loved. 

Sometimes it is a good idea to reach out AFTER the big moment.  The person reaching out feels better. The person touched once again by a friend will not be reminded of the unintended slight but be relieved things are fine.

For more than a year I have been "intending" to call.  I finally did.  It was a good thing.  You never know when it will be too late to call.