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".  

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....  

If you ever doubted.....

Children are resilient.  Lulu is up, talking and here is the most recent post from her mom.  It really really does say it all. 

does anyone in the royalton are have a large pet carrier i could borrow...OREO is allowed to visit lulu but his FAT BUTT just broke ours beyond repair......

And by the way... I wish pets were allow to visit at Seattle Children's...

This crisis has passed.  The universe is good.

Back on the road to a cure.... again. 

A bit of information.... heavy duty waiting....

Quick update on Lulu...I know there hasn't been much last couple days and that is because there isn't much to update. She is still on ventilator. Lungs are slowly releasing fluid. She now has a blood clot in her right arm so on blood thinners. Her blood pressure is kind of all over. She is put back under sedation. She does respond with movement when not sedated but still not answering yes and no questions. Many tests being done next couple days. Keep the prayers coming!!! I believe God has received them and has been answering in small ways. We will take it!! 


News from a friend of Lulu's... 

Hoping our Lasts.... stick this time.

The last dose of Chemo,
The last round of Radiation,
The last Scan,
The last meeting with the Oncologist,

Everyone is very tuned into the lasts.  The first start out in such a shock cloaked whirl of activity, "Last" seems hard to imagine.

We did all the lasts and then we did the big Palisades Party and the Lake Union Party.  We celebrated like the best of them.  The we did the rest of high school and summer camps and summer jobs, and summer vacations and did what we expected to do... Go on with our lives. We had ports removed and we had appointments that allowed such things as normal  dental appointments.  

We took it to heart.  Then...... Out of the blue, when Cancer had been forgotten.  We did it again and it was so so much worse.  We don't even know how much worse it has been because we are not done yet. 

Every time we celebrate the many good results, the ends of ..... fill in the blank.  There is a part of me that says a special prayer.  

Dear Universe:  I know I am a lawyer and we are ones that love endless appeals.  We do believe there are "no answers, just arguments", but in this case, make this be done.  Make this battle with cancer the last and only such battle in the life of this child.

We are headed this summer to many lasts.  I really am not interested in doing any of this again! We all have too much other stuff to do. 

Here's to a bunch of firsts....  Still looking for the cowboy that should have come with my slicker....

Secret Fears that are not So Secret

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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. 

Good news is such a relief

So we go along and we do appointments and blood draws and more appointments.  It is all relative.

We rejoiced in the fact Mary-Elizabeth does not have to plan her life around life long  blood thinning with rat poison. Good news?  I a weird sort of way it is good news. She is 20 years old.  She should never have had blood thinners in the first place.  But as a Cancer Mom one begins to grasp at anything that is not a disaster.  Good news is something not a disaster.

Second bit of news.  Her triglycerides are 300.  300 is a celebration in Post-Transplant, not off immunotherapy world.  In the real world it is a disaster.  300 would set off bells and whistles and drugs and more worry.  In Cancer World it is a huge triumph. 

We take them where we can get them.  "Oh we only have 34 more days of isolation and antibiotics."  "My child is only stage 3 not 4."  "Mary-Elizabeth has the good kind of leukemia we are so lucky." 

It is a lesson in how amazing the human spirit can be when pressed with imminent disaster.  This sort of thing is going on in Boston right now.  "I only have shrapnel wounds right now." " I only lost my leg." 

We all have the ability to make the best of a bad situation.  It takes time sometimes to move from despair to positive but the ability is there.  

It is raining today but look at the wonderful picture of nighttime raindrops I was able to take last night.   

It's all good.  Not our choice, but it is all good.

A certain Kind of maddness Creeps in after a few Days at the Hospital

Being inpatient at the hospital when your kid is being treated for cancer is so difficult. It is impossible to maintain your sanity and sense of humor for more than 6 days.  Max.

First you have the worry of being there if it is not a regularly scheduled admission.  You are there because you child has some unusual unknown bug.  While you might be there for a fever, in Cancer World they are dedicated to finding out exactly what it is.  They draw blood cultures and bunches of Petri dishes full of lemon jello sit around and stew until something grows. 

Lots of times nothing grows and you are still stuck.  If the fever is high enough they put the kids on a broad spectrum antibiotic, sort of like a Z-Pack.  The shot gun approach.  These kids are then stuck until they finish 14 days of the stuff because usually it is IV.  You are already going to be there 8 days beyond sanity and it is just a bone they throw you and they don't mean to ever let you out. 

Then a few days in (3ish) they figure out what you really have and a new type of antibiotic is chosen from the shelf.  It has been pre-tested to see what works the best.  Then you wait again, sometimes the days start over.  

At that point you know for sure that you are there at least two weeks.  But.... it might be longer depending on how low the ANC is at the time.  If the counts are lower then 200 your are stuck like a bug on a windshield waiting some more. 

So you wait.  You wait for every blood draw. You wait for every temperature reading.  You wait to see what comes from the kitchen. You wait to see if she chooses "the dress".  You wait for rounds before a shower because they might have some news. you wait for the platlett YOu  wait for the other closet of shoes to drop. YoU wait for the next does of meds.  You wait for a pint of blood because the bone marrow is not working. You watch more  Dark Shadows and fold more crane. 

During the waiting you worry.  Why is the bone marrow not working? What do we have to do to get out? What did we do wrong? How could this happen to our child?  Did we make the wrong/right decision? Or my favorite:  Remember that day you helped someone put Round-up on their yard and two weeks later you found out you were pregnant and now your child has leukemia?  

When you know how long the admission is going to be 80 days for transplant or 4 for chemo, it is very doable.  You go in, you know the drill, you know the goal.  Because you are headed into a certain specific direction it is survivable   This is what we have to do to go home. 

It is when you have no idea, no control, no sense of when it is going to end.  If there is a bug then you have to be in isolation   (Not even able to use the on-floor bathrooms. I decided not to say "pee on the floor") Everything anyone brings you has to stay in the room.  Everyone has to gown up. Your secret supply of real food has to be heated by a nurse.  You cannot even go to the family room and fill your water pitcher.  It is a fresh kind of hell.  250 square feet with a bed, a chair beeping things and lots of other crazy stuff. 

The minute you hit the room after an eternity in the filthy and more then disgusting ER, you are fighting to get out.  

The other part of this whole thing is they keep talking to us about Shangri La, Or the New hospital wing.  Even though the Cancer kids raise millions in funding and their care pretty much carries the hospital budget, they are in horrible outdated rooms.  They are awful. I don't think they have touched them since the 80's  Mauve has gone there to die.

 The bathrooms are closets, the fixtures are falling apart. Because they get to move into the new part of the hospital, they quit fixing things on the floor about a year ago.  There is a room where 4 people stay that has not had hot water for more then a year.  "too  much to fix it" I was told by the plumber to just use Purell.  Hello!!! anyone read all the information about how HAND WASHING is the only really way to go?

Oh, dear, see I still suffer from Long Stay in the Hospital PTSD.  When I read about someone being there and slowly  unraveling as they wait and pace and try to maintain their sanity, I start to go to that dark place. 

Okay, enough.  Just know until you have done one of those hard long stays, you will never ever understand.  But thanks for trying...... 

Hoping.... Something we have to do as Cancer Moms

Definition of hope

noun

[mass noun]

• 1a feeling of expectation and desire for a particular thing to happen: he looked through her belongings in the hope of coming across some information [count noun]: I had high hopes of making the Olympic team
• [count noun] a person or thing that may help or save someone: their only hope is surgery
• grounds for believing that something good may happen: he does see some hope for the future

• 2 archaic a feeling of trust: our private friendship, upon hope and affiance whereof, I presume to be your petitioner
  
  
  
  
  We do it all the time. We do it every day. We pray, we plead, we often live and breath hope. WE have to keep hope close to our hearts because the other side is so so terrifying. 
  
  
  Often as Cancer Mom's we have to ignore the obvious because we can not fall apart all the time.  I have been having conversation with Rebecca's Mom.  Rebecca is so so sick and her mom has been told the battle is over.  Just as she is ready to realize it, some small, tiny improvement will crop up and then she is back to hoping again.  It is such a push pull situation.  
  
  
  The conversation goes like this:
  
  
  How are you?

  Oh, I am fine,

  
  How is Rebecca? We have been sitting here waiting for her to die.
  
  

  

  What are they telling you?  Well her liver has GVHD, she has cirrhosis, the Hepatic Vascular Disease is very bad but her bilirubin is dropping so I think she is going to be okay. She is on a ventilator  she has aspergillus in her lungs.  Her body is covered with petechiae ( little bruises) and she is bleeding internally.  Her kidneys are not working and.......................
  
  Oh, dear.  It all seems so hopeless.  It breaks by heart but in such circumstances hope is the only thing that attaches us to this mortal coil.  Hope is the only thing that keeps Mom's from falling apart at the wrong times.  Hope is all we have at times like these.
  
  I can't really imagine being the mom in the situation.  I have played the scenario through my head a few times.  But like many things in life, it is not something I can understand if it has not happened.  Sort of like all those people who think their life will be a baby will be the same as it was before the arrival.  Until it happens you don't understand... you only have observation and what ever you have gained through books and movies etc, not the same thing the experience.  
  
  Hoping (desire) for a good outcome......
  
    
  
  
  
  
  

  
  

  
  

Today the Dentist and the Post Office

Before transplant Mary-E went through this long and complicated process.  There were tests done and re-done.  They want these kids to be healthy enough to stand the process.  During that evaluation we found that her body had fully recovered from her first encounter with leukemia. 

We start the process today.  Most of it will be next week but today she visits with a dentist.  He will be assessing the damage done by all of the treatment over the last year.  WE are hoping it is not too bad. 

The body is an amazing thing.  It fights back and repairs itself in many ways.  I am always amazed at how it all works.  We know she does not have GVH in her mouth.  That is more of a blessing then one can imagine.  While my daughter does not talk about what is happening to her she does look online for the sorts of things.  She knows what is out there. 

So today we are off to do something really really difficult.  We are mailing a package at the post office.  Now that is a challenge.

Sometimes it is the Little things...... Nasogastric intubation

Doesn' t that just sound nasty.  It is.  No matter what they say or call it.  It is a nasty nasty thing. It is not a little thing, it is just another thing in a long list of awful, terrible, horrible, things.

Essentially they stick a tube through your child's nose into your stomach and feed you that way.  (It is one way that relieves Chef Walter from having to feed the kids.) 

Kids have a very hard time keeping up their eating.  It is not enough to eat Chicken Nuggets and re baked deep fired reconstituted mystery food and re-microwaved, previously in a sealed packaged fake mac & cheese.  The fact is they can't eat a whole lot of the time.  There are so many things that make their stomachs upset.  Chemo, radiation, pre-meds for blood products, mouth sores.  When they are ready to eat while they are on steroids the food they want is white and salty.  Even then they don't like Chef Walter's food.  (Not that he would ask or care or even acknowledge he should be cooking for them.) 

It is a big battle.  The older kids understand.  seldom do you see a teenager with a NG Tube.  They will have none of it.  Mary-E was very very savvy about them.  She would ask what the limit was and would not go below it.  She knew when she had to start eating and she did. 

The little ones are less able to be bribed.  They hurt, or they don't want to eat and no amount of bribery will help.   Remember our favorite little Robin.  Mouth sores=closed mouths.  As Mary-Elizabeth said: "mom she isn't stupid, she knows it hurts."

So the tubes have to happen.  Like everything in Cancer World it is just one more thing.  It is one more reminder that we are set apart from the rest.  We don't cure our children with good food and good sleep and good stories.  We cure our children with pain and suffering and colored poison and tree-less houses and weeks in confined places with filtered air and endless interruptions and pain.  We allow people to experiment and poke and prod and cut and paste and do endless things to them.  Why?  because we have no other choice. 

For reasons we don't understand we find ourselves having to let it happen.  It is what stands between ourselves and total utter despair. 

One thing that helps is other parents in Cancer World.  I have been corresponding with a mom in New York.  Daughter 17, transplant on the 5th. Child in ICU with total Kidney failure.  A couple of fellows have crossed her path and not in a good way. 

I know the docs and other medical staff understand our rage and tantrums and our failure to always be the kindest.  They have been in this trench before with other parents and if they did not understand they would find another area of work. 

I do worry about the poor soul that fails to provide the frosted cranberry scone when it has been one on of those years.  I worry about them. 

Hoping for less damage in my wake as we travel through Cancer World.

Sweeping

We are not a sweeping culture.  It is a relative simple thing to do but we are a vacuum, leaf blowing, Shark, Swiffer, steamer kind of people now. 

We have forgotten how to sweep.  I have these very clear and distinct memories of Lupe, Mary-Elizabeth's Mexican  Grandmother sweeping.  She would start in one room and move to the next.  Or she would go in front and sweep.  Every day, without fail.

I have been sweeping a bit.  It has a calming affect on the mind.   A purpose, a good result.  It allows the mind to wander to places unknown.  To disengage from the real world and to let it go where it wants to go.  Sort of like dreaming while awake.

I need to do it more.  Time to get back into the garden and prepare for winter, as much as we can prepare for anything.  Transitioning from one set of rules to another even if it is a bit rough.  There is always a "side affect".

Sweeping = sneezing;

Sweeping = calm thought and contemplation;

Sweeping = clean back patio.

Sort of like chemotherapy.  The bad is outweighed by the good.