I've Been Asked Why I Stopped Writing

The longer one hangs out in Cancer World, the more apparent it becomes that it is not a wondrous, happy, healthy, healing place.  It just isn't.  No one exits without deep permanent scarring. The shocking kind that can be hidden, yet still exists under the long sleeves.   

I often wonder if anyone is really interested in watching the Cancer World train wreck day after day, week after week, year after year.  Does my writing help anyone?  Do I do it because 12 years of living here have taken away my ability to write about anything else? Does my constant haranguing make people desensitized to the entire journey?  Cancer World is simply a grind.  An endless plodding grind. 

 One with an ambiguous ending. 

People want happy endings, evidence of great triumph over adversity and life-affirming stories.  The grim reality of Cancer World is there are no happy endings.  Many many children die long horrible deaths.  Some receive reprieves and believe they are done.  Families celebrate "End-of-Treatment," "Cancerversarys" "One Year Off Treatment," "Last Dose of Chemo."  No Hallmark card fits any of these situations. Very few children ever hear the words "Cure."  They are told they continue to be "NED." 

                        No
                        Evidence of
                        Disease

Many are told they are in "Remission"  This is not a word that warms the cockles of our hearts. Simply a reprieve.  Some are short, some are endless.  We all live with the fact next word we will hear is "Relapse or Recurrence."  We know cancer comes back with a vengeance.  There is no way out.  We are here for perpetuity. 

Mary-Elizabeth is currently doing great.  She seems to have settled into her little universe of side-effects.  She handles the GVHD.  She sees the endocrinologist. She manages her hot flashes. She weeps on occasion for the loss of the chance to have a child that carries her particular group of DNA.  She is hyper aware of any changes in her body.  A bump, a sneeze, a strange feeling of concern.  She addresses each of them.  I only try to put my worry in the way back of the fridge and hope it is not growing something disgusting. 

Others have not been so lucky.  We have met so many people over the years and know many many families that have come to the end of the road.  They simply take their children home to die.  

These deaths are painful and agonizing in so many ways. There is no way to describe the veiled anguish of every Mother's post.  They put their best face forward and try to have something happy to say.  

They acknowledge they are counting on God to perform a miracle and have their child with them again. Yet they know, they know all too well, the time of the last smile, the last breath, the last gentle kiss is coming.  The sand is rapidly escaping the hourglass, and there is no way to stop gravity.  The entire process is just overwhelming and excruciating. 

Time does not heal the wound of losing a child.  The pain does not lessen or diminish in few months or few years. This is a gaping, car-swallowing sinkhole kind of wound that never ever heals. The pain of losing a child remains forever.  Life does not get easier, nor does the pain lessen.  

The reason we fight so hard to beat such a demon is that somewhere in our mother souls we know.  We know the depth of the love, the deep well that burrows into the center of the earth and out the other side to connect with the Universe. We know how much we love our children and losing them is not an option.

I ended the blog because I couldn't keep from talking about all the sadness that had been the last few months.  There had been so many losses of such lovely children.  Too many funerals, too many "Joyous Life Celebrations" too many deep sighs choking back tears moments.  

 I don't keep count anymore.  I cringe every time someone celebrates the last dose of Chemo or the end of treatment.  I just hold my breath for them.  I know too much. 

We were at the end-of-treatment to only have the monster return seven years post-remission and 57 months after the last dose of chemo.  What the Hell!?   She is now 5 years post-transplant, and no one is talking cure. No one has said we don't have to worry anymore. No one is saying much.  I think we are all just waiting.

 I certainly am.  

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. 

I think we see the end of the Tunnel

I can see. 

I can hear it,

 I can taste it, 

I can feel it. 

The end is near. 

I am ready but I am not holding my breath.

When I was a law student, My parents lived in exotic locations… like Canada and Switzerland.  One of Dad’s benefits was that we could fly three times a year to visit our parents.  It was a pretty wonderful perk.  We would hop on planes and head out to great vacations. 

The thought of those times was pretty exciting and if I thought about what happened after the last final, I would lose focus.  So I learned to slam a door tight until I was done.   I knew what was behind the door but I did not receive the key until everything was wrapped up.

So…. The door is slammed shut…

So here we are the remaining tasks before we are given the key.

1.     Endocrinology

2.    Big appointments with SCCA

3.    Port Removal

Three things. Three tasks, Then we can look through the door.  Look at the other side. Look at the  world again.  Not confined by all the Bone Marrow Transplant rules.

She is already stepping out.  She has broken rules hard and fast rules……. She had sprouts on her sandwich and

Raw cookie dough….

More shocking and normal things live beyond the end of the Tunnel and we are ready

y.

                                                                                                                                                              

Family and Friends can only stand it so long.

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

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

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

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

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

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

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

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


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

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

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

Fault is in our Star? or how did it come to this....

WE all choose the movies we want to watch.  There is a certain number of movies that fall into "have" to watch.  Then there are the "I can't stand to watch" group. 

I have always been an avid yet timid in my choices.  I went to see the Exorcist when it first came out but I read the book first.  I saw Jurassic Park, again only after seeing the book.  I have seen 2001 a Space Odyssey a couple of times and made Bill Nary watch it.  He complained that it last 2001 years. I have never seen Schindler's List not The Boy in the Striped Pajamas.  Several movies have gone unseen because of all the violence.  Just can't do it. 

Only way I can make it through Game of Thrones is that I have read and loved the books and know when the horse heart eating scene is coming. 

So, huge new movie based on a book about pediatric/young adult cancer kids being in love and dying.  Not sure I can do it.  Several of my friends think it could be cathartic.  The old "this is not your life but someone elss's"   I know it is make believe and the cancer is sort of weird and not very accurate.  Especially about the Sarcoma kid.  I know who dies in the end.  

I just can't quite bring myself to watch it. Now my friend Darlis has read it, Jai has seen it. Tracy told me not to read it. I have this urge to take myself off to a theater by myself with a box of Kleenex but maybe later.   

I already know kids die of cancer do I need to it.... 

Maybe on a day I feel less effected by it all.  Meb is fighting a pretty nasty cold and feeling lousy.  I will use it as an excuse to stay close and fight the urge to pay to see sadness. 

Anyway I just finished a bread making class at an Italian restaurant and I need to track down .00 flour.  Not sure what it is but it makes the best Pizza Dough. They I need a baking stone and something called a couche? and then I need a dough cutting knife and then I need....

Maybe I should just go to the movie and buy the bread.  This is Ciabatta bread.  Means slipper in Italian.  It is supposed to have holes in it and they are called eyes...  More the better.  Who knew?

Lots Out there.

Lots of choices, lots of crazy, lots of pain.  There is a mom who's three year old died. She does not trust she did the best she could.  Best hospital, best questions asked, best efforts to help her child.  She is in so much despair.

There is a mom with a 17 year old that went to his prom and things were going along and his ALL came back just before transplant, with a vengeance and nothing could or did stop it. 

There is a mom who is waiting and watching her child slip a way.  The long slow unwinding of a young life.  Just like birth, death takes awhile.  It is a process.  Sometimes a very surprising long process.  

I have imagined having to say Good by to my daughter.  I have wondered if it would be sooner rather than later.  I was deeply frightened the first time but this last time was not fright but stark terror.

There were times, I was not sure how much more her body could take, or she could take.  
I was at the hospital yesterday and saw a tiny little girl on a bike.  She was working so hard to ride.  So happy to be doing so. She had way too many pumps on her pole to be anywhere close to done.  

I handed off a Wishing Rock bag to the dad, told him he could get a little insertie thing for the heavy pole, said a prayer and walked on.

This sick kid thing seems so surreal.   Stacie is with her daughter Allie (not Yakima Allie). She is holding daughter's hand, rubbing her body with cannabis oil and waiting for the inevitable.  The time when she will take her last labored breath.  The time her spirit will leave behind the cancer ridden, chemo, radiation, surgery ravaged body behind.  She will grieve and rage against the universe and will be surrounded by those that love her and her other children and she will somehow with some super strength, walk out of the hospital and bury her child.  As she lets her grief be known, we will all walk with her and feel the bit of her heart that will never heal. 

I don't remember the child dying part as being part of the bargain.  No one should have to complete the birth to death cycle. No one should ever have to leave the room or the hospital or the hospice again. 

I think about how Mary-E just headed off to see the eye doctor.  10 years ago this week, she went to see him and our journey into Cancer World began.  I am relieved she is able to drive and stay up late and leave the lights on and complain about my cooking.  I love she can do her laundry, is looking for a job and still has a sense of humor.

I am cognizant every single day  of the blessings AND the sadness swirling around me.  Both need to be honored.  

Allie is in the blue jacket.

Great Crow Cacophony

The murder of crows and their cacophony woke up everyone.  Something was happening and we were not paying attention. 

I am sure there are lots of parents that feel like this when they are trying to find out what is wrong with their child.  Everyone has a diagnosis story.  

Ours was swollen optic nerves, two months of scans and exams. Finally the sneaky little blasts flooded ME's blood stream and we were off to the races.  (A race we still run and have had to do again.)

Bloody nose, cough, weird bruises, pain in the legs, lethargy, pain in the stomach.  Often there are numerous trips to the doctor, the emergency room.  

Then when they figure it out it is full bore press.  There is no time to even breath. Life Flights, long admissions, surgeries to place ports and piccs and Hickmans. There are consultations and scans and blood given and taken away.  Huge hubbub..  More noise.  

The noise never ends. Everything beeps. Even things that were formerly silent. Thermometers, IV pumps, phone's, call buttons, beepers, fire alarms.  Everything is trying to get your attention.  It is sort of like "signage overload".  When faced with too much information, we all just shut down. 

I still wake to the pump alarm.  It happens mostly when I am in that weird in between place of kind-a-sleeping.  My mind had stored all the sounds for use at another time.  Sort of like a squirrel and nuts.  

This morning the Crows were alarmed.  They are not quiet about their alarm. Everyone in the neighborhood heard them.  That is what they wanted.  They wanted to be heard and to be acknowledged.  I am sure they are like us, the Cancer Moms and Dads.  We are sitting in a corner of your world and we are screaming as loud as we can and no one truly understands the noise.  We have a doctor writing articles about how cancer is very rare and very curable. We have a family that wrote a book wishing their children had cancer and not autism. 

Hey, we are all just making lots of noise over here and we need some attention.  Something is wrong. Very Very Wrong.  We are a small group, a rare group, a very dissonant group. We have learned we have to be because what we are doing, is something lots of people don't understand. 

We understand but please know we will keep up the noise for as long as it takes.  It is a good song, a necessary harangue. 

The Taper Begins.

Lots of time between now and the end of July for the Sirolimus taper. Prednisonesits around until the first of August.  I thought I would be ecstatic.  I am just a bit worried.  Sort of like a mom sending her child out to school for the first time. 

Since January 24, 2012 the new cells introduced to Mary-Elizabeth's body have been discouraged from working at 100%.  The docs use some kind of suppression.  If they let them just act like an immune system by themselves they attach the host body.  

Pearl Anne has been very willing and able to go on the offensive on a number of occasions.  She had a wild and aggressive spirit. This has caused some serious problems in the past but we are hoping she has settled into her home.  For the last 5 months, there has been no serious flairs of GVHD and there are not too many complaints about not receiving lots of Prednisone to keep things tapped down. We shall see.  Tomorrow Meb will skip her 1 mg of Sirolimus at 8 am.  It will be a start to the taper.  We are crossing our fingers and toes and saying lots of prayers to the universe and all the component parts that it is okay. 

It is a nasty drug:

Sirolimus may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer. To reduce your risk of skin cancer, plan to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen during your treatment. If you experience any of the following symptoms, call your doctor immediately: fever, sore throat, chills, frequent or painful urination, or other signs of infection; new sores or changes on the skin; night sweats; swollen glands in the neck, armpits, or groin; unexplained weight loss; trouble breathing; chest pain; weakness or tiredness that does not go away; or pain, swelling, or fullness in the stomach.

Sirolimus may cause serious side effects or death in patients who have had liver or lung transplants. This medication should not be given to prevent rejection of liver or lung transplants.

There is a part that wants things to continue but this is the first step towards the real end. The real time when we are done. When the trip is almost complete. 

In one day, I have become one of those worrying moms that are so sure the sky is falling.  I have seen it fall before so this is a bit scary.  

She looks good, she feels good. She is making great progress. She will be fine. I will be fine. Everyone will be fine.  

We will be fine.

Maybe today we are able to continue the Taper

So we are at the point where things are really stable and have been for quite awhile.  Little GVH skin flairs every now and then. Some GVH in the scalp, but over all good. 

She has been on steroids, sometimes really really high doses for more than two years. Gut issues, skin issues.  Blood clots, Kidney stuff, Dead bone in leg issues. The usual, unsexy sort of stuff. 

But today we meet with Dr. Carpenter our lovely handsome kangaroo eating doc and I am putting my foot down.  We are done with cancer and post transplant crap.  I have not decided what to take him as a bribe but I will think of something.  Maybe something from the Spam Museum...

So while I have not had a tone of anxiety about this appointment, it has been sitting on my shoulder being irritating.  Today I intend to kill it...

Update at 11

Just one of the many curves in the road we have traveled. 

Unpublished thoughts from the Beginning of Trip, thought appropriate as we are almost done with the journeyu

We woke to Sunshine this morning.  Billings. We have traveled less than a 1000 miles but then that is okay. We are on a road trip. A Sally and Mary-Elizabeth Road Trip.  So we don't get very far very fast sometimes.  Sometimes it is necessary to leave the room in Drummond Montana at 11:45 am. 

We then need to abandon the plan and head off to places unknown.  Only rule.  Must be headed South or East.  No back tracking.

How can you not go to Highway 1 and stop at Hall and Philipsberg and see the worlds best stocked candy store.  Cool, cool old town.  I want to move there.  Of course every town we go to “I want to move here” comes out of my mouth. Small is better.  While not practical it feels,  better.  It is so much better. 

Back on the road but not until we have taken a couple of good pictures and stopped at the Sapphire gallery.  Who knew they grew in Montana.  Then a moment on the really high scary pass with the cool canyons and cool rocks and then a drive through Anaconda…

Then time for some serious driving.  No She wouldn't let me stop at the Ghost Town or the head waters of the Missouri River.  No we could not visit Three Forks State park or go find out why they named Greycliffs , Grey Cliffs.  No we could not go ask to drive through the private property on Crazy Mountain and see how close we could come to the base. (Crazy Mountains, just sitting there on the plain.  Looks like they were plucked up from the Sawtooth range and plopped down.

We drove, we saw the runners for the Special Olympics,  (Event starting in Billings next week-end.)  We were almost smashed by very big, did I mention big pick-up trucks… Frozen lakes, hail, visible snowing in not so high mountains.  Hugh valley vistas, lots of bovines and sheeps…  lots of critters.  There is a great lack of Mooses… I want to see some Mooses.  Not lots of birds, deer crossing and one sheep warning signs.   No sign for the Clinton Montana Testicle Festival. 

Lots of really big trains going and coming and going.  Rail crossings are to be respected.  No messing with them.  There are trains here that could crush your car like an aluminum can.  

So today, we are headed to real sights.  A search for answers.  We will peer into the past and wonder.  Why did Clark carve his name?  Big Horn. Why was Custer so arrogant?  Why do the Praire dogs looks cute and can we have one?  Where did that hunk of rock come from (Devils Tower) and of course it is sacred! 

Odd and only funny at 1:30 am.

            Perkins, that is the Dennys for here.

            Oh, I think that is a USO.

            Clarkfork river…. We have crossed it only 16 times.

            How do those black bovines birth those white babies.

?

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. 

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.  

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.

Euthanizing Children

Euthanizing Children

I could not type those words yesterday.  How do you type those words.  While I often think we go to far in Cancer World and don't step back and let kids have comfort before they re-boot, never did I think about letting them ask to die.  I never even thought about it. 

So let me process this.  So we have a child. They are terminal, they have pain that can not be managed with any amount of drugs.  They are able to ask to die and I have to agree.   

Can a three year old ask? I know a pretty smart three year old, Alistaire.  She has had cancer twice in two years.  She just wants to be a big girl. She asked her mom if she was going to be a big girl.  Does she even understand the word "dead".  Even if she asked would anyone be able to "agree".  She just wants me to upgrade my phone games.  Alistaire does not care about the License Plant Game.

Mary-Elizabeth is now an adult in the eyes of the law.  (She has been an adult much longer than that. )  More than once during the process she wanted me to make it all stop.  There were lots and lots of time that the pain was beyond what could be given to her safely.  Not just once but more than once.  Lots and lots of gut wrenching, "I am going to kill these people if they don't help her kind of pain." 
New Computer system, nurse on break, new codes, no one on the floor, no one responding kind of deal.  I was very very very very clear that I knew the code and I would administer the meds if they did not respond. 

Oh, dear, if that pain was constant, would I agree to her request to be done.  To die.  Oh, see it is good for me to write through.  Would I agree?  See.  It is possible to get to the point when it makes sense. 

But what if there was hope?  What kind of hope?  Hope for snow day or hope that Santa is real kind of hope?  This is certainly a topic for another day.  

Okay.  Enough.  Time to plan the activities of the week.  Walking, cleaning, job hunting, package wrapping. Waiting for the Christmas Cards to arrive.  The usual.

Oh, I better add Laundry...