Music is back.

I never realized it was gone but it has been gone for a long long time.   I am not sure why but it was. 

My dad was an adventurer.  He saw the world as a place to learn and explore.  He was curious and always had his nose in a book.  He carried that curiosity with him throughout his life.  When he went to college he squeezed everything possible out of it.  He took lots and lots of different classes, Music and Art Appreciation, Photography to name a few.  When we all went to college he encouraged we explore our passions.  

I took a few classes, lots of history, Zoology even though it was not in my major or minor. I did take Music Appreciation.  I learned a lot in both classes.  I fell in love with certain pieces of music.  One was the Mouldau a piece by Smetana.  It is the musical story.  The river starts as a small stream and moves to a big wild river, then on to a stolid reliable river and then ends up in the ocean.   

https://www.youtube.com/watch?v=kdtLuyWuPDs

It made me listen to music differently and in a way I never had before.  I learned about recurring themes and refrains in symphonies and other such pieces of music.   

I have historically loved lots of different kinds of music.  No fond of Rap or long guitar rifts. I think mostly because I don't like loud banging.  Enough of that goes on in my head most of the time.  I don't need to have it enter from another source. Some Jazz is okay, not all.  Squeaking does not make me happy.    But some music resonates with me in ways I don't understand or why some and not other.   Some melodies, some lyrics, some passages.  I remember sitting in front of the stereo player listening to musicals we owned. 

Over the past few years music was replaced by NPR.  Seldom did I play music in the car.  If I am traveling long distances I most often have Pod casts playing or a book going.  If you asked me to go to a play I am much more likely to go than to a listen to music.   

Something started to happen.  Some music started to creep back in.  It is seldom background noise, it is something that takes part of my brain to listen and it has not had any energy or extra power to do so for a long time. I think all the processing nooks and crannies have been filled with ANC, BMT, CPR, NED and all the rest of the stuff in Cancer World. 

The ability started to wake up bit by bit.  Patty took me to a U-2 concert ( not YouTube) I went to see Char, I found time for Mindy Smith, Rod Stewart finally came to town when I could see him.  James Taylor and Carol King performed together.  I made the journey to see Dixie Chicks.  Bit by bit.  Noise gave way to music. 

One of my friends mentioned he had seen the Vancouver Symphony play James Bond music and I started poking around the Seattle Symphony home page.  I had not looked at the schedule in a meaningful way for a long time. Maybe I could sit and be absorbed by music for more than 20 minutes. Maybe there was room in my being again.   We received tickets for a Pops performance at the Symphony.   I ended up going with my invisible friend Juliette Pinette. (I don't call her imaginary because you are the only one that can't see her.)  It took about 12 seconds into a Sousa March for the levee break. 

 Oh yes, music is back.  I bought two tickets before I left, went with ME last night to see Brahms' Second and have nailed down a subscription for the upcoming year.  

Something is currently compelling about complete absorption into something so complicated and amazing. Something not of this world.  It is a sort of drug.  If I could be there every day sitting in the darkened quiet listening to the amazing sound from horns answering the violins and the triangle.  The simple triangle.   That simple moment of clear sound. 

I guess the Music is back.  Anyone want to join me for a bit of Beethoven or Stravinsky. No fur necessary. 

To Vaccinate or Not To Vaccinate... WE have the luxury of asking that question.

Rotavirus vaccines are being rolled out across Africa at a remarkable pace thanks to the support of the GAVI Alliance. To date, 21 African countries have introduced rotavirus vaccines in their national immunization programs (NIPs), of which 17 were supported by GAVI. PATH, through the Vaccine Implementation Technical Assistance Consortium, has successfully assisted and supported GAVI and countries in the design, planning, introduction, and/or integration of rotavirus vaccines. 

It baffles my mind that there are people out there that choose deliberately not to give their child the best possible chance to survive and grow into a healthy child.   The article above was posted by Kathy Neuzil MD.  She works for PATH.  They work on educating people around the world on the purpose and need for vaccinations.

I think of all the people that died of small pox, and suffered from Polio or died of Whooping Cough.  It just makes me crazy. 

I know there are lots and lots of scared moms that are sure vaccines cause autism.  There lives were forever changed because of that diagnosis and they want an answer.  I certainly would want an answer but over and over again the link is not valid.   Unfortunately many of the times that Autism Spectrum disorders manifest themselves at some point during a child's development, chances are there is some sort of vaccination that has happened. 

Now I am not a medical professional, I don't have a degree in Public Health, I had the mumps, measles and chicken pox and lived to tell about it.  I was also vaccinated with everything that was available.   I hated each and every time ME had to have her shots.  I started making her Dad take her to those appointments.  But

I also know what it is like to watch a child suffer and struggle fighting a disease.  Why would anyone not prevent a disease if they could.  If there was a vaccine to fight childhood cancer, I would be the first in line to make sure every child received that gift.

I can't talk about this issue anymore.  Neither can I talk about guns.    

I have seen too much death of young innocent children and the destruction is does to their families.  

Just so we are clear, I gained a new appreciation for donuts and Spam after our trip across the country.  I also craved fresh veggies and green green salad.  

Just Give Me the Answer!!!!!

"There are no Answers only Arguments"

Famous words were spoken by Neil Franklin to his Civil Procedure class in about 1983.  One of the OCD CPA's that decided adding a JD to his name would be easy.  He wanted answers, he wanted certainty.  He was in the wrong world.  

Law is about change, pushing the envelope, finding new inroads to old systems.  It is about the creative expanding the boundaries of the old set rules.  Many things we take for granted were taboo and forbidden many many years ago.  Women voting, blacks voting, Asians and Whites marrying in King County, being able to marry anyone you wish, despite apparent gender designations. The law is giant amoeba and we are better for it. 

Medicine is very like law. Always learning, always changing, always developing.  Not that long ago the barber was bleeding patients and they were doing transfusions with goose quills and lamb blood.  Yes, we have come a long way but we still don't have all the answers. 

Childhood Cancer is a huge amorphous amoeba.   Every single person I have ever encountered has a Diagnosis Story.

We noticed _________________
We took the child to the doctor______ times.
We had___________ tests.
WE had ___________ scans.

They did not find it until________ months later. 

Common story.  Horrible stories. Great fear that if they had found it earlier something could have been avoided.  We know that if you catch the cold early the pneumonia won't come.  Wish that was the case with childhood cancers.  

Yes, early detection is good but boy I don't see it makes the treatment shorter or cancer is avoidable if you find it early.  It is sort of like being pregnant.  You are or you are not... 

There are so many times during this process that no answers are readily available.  Very few tests/scans/examinations or other woowoo magic give you the answer.  Most likely it is a process of elimination.  

Meb's sort of went like this.

Swollen Optic Nerves
Not high blood pressure
Not diabetes
Not kidney failure
Not leukemia (first blood draw)
Might not be a brain tumor
Mass sitting on the top sagital sinus
Maybe a brain tumor
Not metastasized bone tumor
Not a brain tumor

Oh, leukemia.  (second blood draw 2 months later in anticipation of biopsy of mass.

For years, yes years, Mary-E has had her blood cultured.  Only once has there been a positive.  They were used to exclude fungus, bacteria, lots of nasty things.  Only after something grows do they investigate further.  It is a long process and there are no answers, no easy answers. It is not TV medicine.  

We all want the easy answer.  Actually we would take any answer.  Even if it is a bad answer because the not knowing the answer is crazy making.  Not knowing makes me go to a dark scary horrible place. I meet many of my other peeps there.  The mom's waiting, wondering and hoping for a good outcome but we know. We know better.  We know it is bad.  
But then we think "It could be worse".  I remember sitting and waiting to see the brain surgeon at Seattle Children's.  We sat near the Hem/Onc desk and I watched the small bald headed children  being checked in. I said a little prayer and thanked God I was not waiting to see "Those" doctors.  Boy was I wrong...  

But we did finally get an answer.  We knew what the problem was and had a plan.  A way forward. It was a good thing.  

Knowing is always better than no knowing.  After you know you feel like you have SOME control over what is going to happen. It is a good thing.  Each and every time there is a levee in the road and you are frustrated and ready to pull out your hair and kill the next person who tells you "no we are out of blue berry muffin, you remind yourself that you know.  

Sometimes knowing has to be enough. 

Shifting Focus

Sometimes it is hard to make the shift.  Sometimes we have so much on one plain we don't see the other side or have another view of the world. 

I was reminded of this when I saw this picture.  I clearly stole it from an amazing photographer.  

 Are we coming or going?  Beginning or end? Start or finish? I guess it is the old "To Be or Not to Be? That is the question.

I think I am so beyond the worry and concern.  I think I can help other's who are starting the voyage but it takes just a moment, a note, a post, a call, an old picture, a question, a piece of paper to have it all come back in a rush.  Classic PTSD. I wonder when it does go away?

Meb drove herself to the eye doctor today.  She went to see Dr. Balter.  The same eye doctor who found the swollen optic nerves 10 years ago.  10 years of our lives have passed since that fate filled day.  120 months 3650 days.  One thing I can say is I sort of really know what has happened during these last 87,600 hours.  Oh do I know what has happened.  

Okay, so I have decided we are taking off.  We are not landing, we are not sitting around on any old daisy and just waiting for life to speed by too fast.  (Speeding is only for Iowa highways)

oH mY gODDDDDD Good News

New food trays at Seattle Children's.  No more of the lovely 1980's food trays. 

They are making in house Mac + Cheese and real pizza.  New patient chef is actually cooking for the kids......

2.5 years.  I'm just happy to know the food is a bit better for the kids.  Glad as heck that Chef Walter has left the building.  He can take his pre-cooked pre-frozen grilled cheese with him. 

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.

One less Portrait of Dorian Gray is in the upstairs room.

Someone really really special left very very early.  I mean, lets be honest, when I first met him, 54 would have felt ancient. Now it feels young. Kirk never aged.  We knew there was a portrait somewhere!

Kirk Hadley, or Captain Kirk to many, made a quick exit.  He died.   He just up and died.  I don't know much but I do know he will be missed.  Not that everyone won't be missed but I will miss him and feel the loss for a long long time. 

He smiled, he questioned, he cried.  He was a whole person.  He was someone you could not see for years, maybe decades and then slip back in to the same easy place in your relationship. He was my friend and I loved him. 

In early May I was questioning the wisdom of taking a trip with my daughter across the country.  Cons:  No visible means of support, ancient car (with good tires), family members upset that I was not working.  All the grown up reasons we don't do things.  It did not make sense to drive 5600 miles on a whim.  

I received my call from Lori and then  I knew.  I could meet a sudden end or Mary-E could relapse again or have a stroke or a pulmonary embolism or be on a college campus and have some gun toting maniac come shooting.  

Pros: Time, I had time.  Mary-Elizabeth had time.  

Not everyone has time. Time is precious. Time is not to be taken for granted.  We all assumed Kirk had time.  More time. Lots more time.  His time ran out.  He doesn't get to see his grandchildren. He does not get to play another round of golf. He does not get to see his son's continue to grow into fine young men. He does not get to have his mom's pot roast.  

Time, not money, or jobs, or new cars.  Time is the defining factor.  Time is painfully limited but seems infinite.  

Time with someone is limited.
Time without someone is infinite. 

Capt Kirk.  You will be greatly missed.  You were loved and appreciated and valued.  

 

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....

Childhood Cancer...... Rare? Depends on your perspective.

Childhood cancer is seen as a rare disease.  Lots of money goes to things like Breast Cancer, Lung Cancer and Colon Cancer. 

So these are the facts:

 Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids a day.

 35,000 children are currently in treatment for cancer.

 Some 25% of all kids who are diagnosed with cancer die.

• Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
• Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.

 More children die of cancer every year than adults died in 9/11.

 Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.

 The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.

 The death of a child is one of the most traumatic events a family might face.

• Families who have lost children are often financially and emotionally depleted.

This is Cancer World.  Now given there are over 300,000 million people in this world, Cancer is Rare.

When you are in Cancer World, none of it seems rare... It is our lives.  I am not sure why they always report the occurrence of childhood cancer as if it is surprising.  Those of us here it is not rare. 

Each parent of child with Neuroblastoma, knows a dozen kids with the same "Rare  form of cancer.  For a child to die of OsteoSarcoma, shish, happens all the time.  For a child to fail at a Bone Marrow Transplant, so so common.

It is all about perspective.  It just irks the Cancer Mom's when the words

Rare

seldom,

almost never happens

are bandied about our feathers ruffle and our feelings are hurt.  We are so so sensitive because all the kids we know have cancer.  It is not a rare event. It is our everyday life. 

When you enter Cancer World you are immediately

 put on a floor with kids that all have the same thing disease.  As your former live is taken over by being in Cancer World, you make more and more connections with families with cancer.  If you take stock of your life and your connections, few begin to be Cancer Free families. 

Because your child had cancer, everyone with cancer in their life begins to share.  You learn all about their journeys.  It is a way to connect and to be supportive. Sort of like when you are first pregnant and most women have a birth story to share.   Sharing and connecting is in our very beings. 

Childhood Cancer is rare when taken from the view of the entire population of the United States.  It is not rare on the 7th and 8th floor of Seattle Children's Hospital.  

It is the most financially and emotionally devastating form of cancer.  You think it is hard to parent a Teenager, try doing so with one that has been through treatment or diagnosed during that time.  We all complain we did not receive a manual for babies. We certainly don't have a manual for helping a child die and for burying a son or daughter. 

Lots of people are upset by the book "The Fault is in our Stars" and another one called, "I Wish My Child had Cancer".  

It is all about perspective.  How are we looking at things?  Which part of the animal is the blind person touching?   I get upset when I think someone should know better when they speak.  Dr. Charles Hemenway, an oncologist was one of them.  He really upset lots of families belittling their pain and struggles. He then explained himself as being a kind caring oncologist but not a lot of people bought his explanation.

He is one that should know better. 

Again, perspective.  Where are we seeing this story unfold? 

Multiple Uses for Weird Things in Our lives.

I find things that have one purpose and often they morph into something else.  Something completely not related.  Take the china mug for instance. 

Somehow over the years, my mom has come to want her coffee hot.  She does not want it to be microwaved if possible. She wants it hot. She wants it piping and strong and so she has it that way.   Thus the saga of the China Mug.  Not pottery, but china.   Bone China. Best possible quality.   She is so certain as to what she wants, she leaves a couple of mugs at our house.  She travels with her mugs and she looks for them always. 

China Mugs are part of the Wishing Rock Project bags.  May seem silly, such an item to be tucked in a bag with other much more practical things.  Trust me, it is hard to have a hot cup of anything at Seattle Children's.  The mugs are a symbol of trying hard to hold on to something civilized during a very difficult and de-humanizing time in every one's life. 

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 

The Mug is so much more. So much more. But then many things are. 

I was working in my kitchen and it was time to run the my salt cellar through the dishwasher.  I decided to figure out what it was.  I have used it for years.  I found it at Goodwill and it is a cool piece.  I just never could figure out what it was.  Well I have been using a container used to stain slides.  The wire to lift the insert out is missing. 

So now I am wondering what has been in this thing!!!!  I have used it for years.  How just creepy and scary is that!!!!!.  Is it contaminated with some horrible stained disease?  Have I made people sick?  It is too late now?

Just some of the questions I have. Just a few of many many that run through my brain every day.  

Okay.  Time to go wash the mugs for the bags to be delivered this week for Wishing Rock and to double wash the Salt Cellar. 

Waves of Pain When a Child is Gone

Facebook has created a place for people to share. They share what they are eating, cute kitten videos and now the pain they experience when a child dies of cancer. 

We have been lucky enough to avoid this most heinous of losses but we always know it is there. It hangs around. I have watched it so many times these last few years.

I remember being on the floor when Meb was in treatment.  Sarah was dying. She had lost her battle with a nasty form of Lymphoma.  On the old floor people were moved to a private room and then a one on one nurse was assigned.  Then the people start to come and say good by.  We all watched as streams of young adults and family members came and went, beyond visiting hours.   

Then the Father showed up.... The hospital helped him come but he clearly was very uncomfortable.  He was standing in the hall one day looking very lost.  I approached him and told him I did not know his daughter but I could tell from what everyone had said, she was a great person.  Her greatness was only validated by all the people that were visiting and letting her know she was loved. 

He looked at me and told me there was going to be a miracle. They were going to fly her to another hospital and she would be well again. I put my hand on his sleeve and he simply grabbed me and I hugged him with all the strength I could muster.  He continued to hold back his tears and fear and terror.  A terror I can only imagine but I have felt emanate from so many whose children are now gone. Rebecca, Mario, Joseph,

Jaxon, Ruby.... this list goes on. 

Micheal was laid to rest yesterday. Allie will leave this planet soon.  Katie and Daniel are moving forward on their bucket lists with great alacrity. 

 It never gets easier. because there will be more.  But the miracles will continue to happen.  Really smart people will keep working to fix these kids.   And we will continue to believe it will be better someday. 

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. 

Slowly Sneaking Out and About

Lionel Richie, The Seattle Symphony, Shrek the Musical (Blanchett's annual Musical).  Oh my this is feeling great and exciting and a bit nerve racking. 

Little by little we take baby steps returning to the world that has gone on without us.  

Pearl Ann ( Meb's Cord Blood Donor) has been without a dose or two of her medicines that keep her under wraps.  We are being quiet about it. Hoping she does not notice and get too excited about the new freedom.  She is still heavily supervised but like all toddlers we are trying to give her a little bit of freedom.

So Far So Good.... Now we hope the musical does not scare her. 

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. 

 

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. 

When do we stop treating..... When are we done?

I didn't realize that when we were first in Cancer World we were just on the fringes. Mary-Elizabeth had High Risk ALL with never confirmed but treated CNS involvement.  She did the 2.5 years, 12 doses of spinal and cranial radiation.  The whole ball of wax.  

I met someone I had known in a previous life and she was the first child I knew that died from this most heinous disease. But she was really the only one.  As I look back, I know we sort of sailed through Cancer World Part I. 

We wondered about people, we had some connections but not like now.  When Meb relapsed and we started doing serious hospital time and a transplant, we really were in the thick of things  We were introduced to an entire other world. A place of deep darkness and horrible results.  Heart rending darkness.  We had been in and out before, a day, may three or four.  Now we were doing months.   Weeks and sometimes it felt like years.  It had a whole new intensiveness. The difference between John Glenn flying around the world and a moon landing. 

I don't ever remember a discussion in Cancer World I when there was a discussion about being done with treatment because there were no more options. I never heard the words Hospice, Palliative Care or words like End of life care.  Because of my relationship with one of the providers, I knew it happened.  Tracy would call it a "do over". 

This time has been different.  I don't know if it is because we spent time with sickest kids, have reached out more, Facebook, or what but there are lots of kids dying and getting ready to die.   Many children just run out of options. 

Their parents are in such agony.  When you start you are told the odds.  Even when they are not what you want to hear, you know there is a chance. There is a possibility, there is hope, there might be a new discovery.  There might be a "miracle".  There might be..... our world if full of might be's.  Might be a new study. Might try a new drug. Might be......  

In so many cases there are no longer any options.  The cancer wins.  The brave decision is made to stop the treatment.  There will be no "Cure". The cancer wins.  

I have no way to even think about making that decision.  My daughter has been very clear that she is done.  She won't do all of this again. She is a full fledged adult and she is in charge of most things in her life.  She will not submit to treatment.  She lives her life with that in mind.   It is hard to think about but then it is easier than having to make the decision as to what to submit a child to in treatment world.  

We give them poison, we bemoan the fact they cannot have more poison because the counts aren't good. We watch the door close on the radiation chamber and are glad the protocol is going forward. We grind, conceal and give them endless amounts of drugs and potions.  We do anything anyone suggests to save them.  To let their lives continue. To let them return to normal.  Does it ever?


Done, when are we done?  I don't think we ever are done.  Done is an illusion. We just reach the end in different ways. Some return home and try to return to normal

. Some stop all treatment. Some watch a child slip away.  Some bury their child and try to go on with life.  


I don't know even what to say at this juncture. I just know what I can do.  I can try and be as supportive and listen to those at different stages and maybe be a shoulder.  I will try never to pass up an opportunity to do something positive for someone in pain.  I will never forget that we are all done at some point and we need to make this time of value.