The Hair and How it Falls

Our Journey was a bit different than many. Mary-Elizabeth started off as a search for the reason she had swollen optic nerves.  No one ever said the "C" word but after about a month plans were made to do a biopsy of her skull/brain. 

Now wouldn't you expect that I would have been overwhelmed with concern about my child having her skull drilled?  That would have been a reasonable response to the fact my daughter was going under the drill.  

To my shock and disgust, my first thought was "How much hair are they going to have to shave."  When we were told she was going to have chemo and radiation, I secretly wondered how long before the hair was going to go. How shallow can anyone be? Life had taught me how mean girls can be and how much we value "hair." 

Hair came and went and came and went and came and went and then went again, I began to be more accepting of the process. Sometimes it was mouse brown and soft. Garrison Keiler met her, and while I tried to take a picture she smiled, and he petted her soft silky unreal hair.  He commented on how soft it was not knowing it was Chemo Hair.  It came in curly and sometimes straight. It sometimes fell out for a reason, and other times it fell out for no reason.  I do know that she always complained when it was coming back in because it hurt.  Who knew hair growing back could hurt?  

When it forgot to come back, well.  I was just sad.  Mostly sad for her but still sad.     

Seems so silly but I want you to know that the mom's do talk about it.  I don't think we really care about hair on our kid's heads, but it is still just one more of the things out kids lose.  In actuality, I had never seen my daughter's head without hair.  She was born with a fully developed shock of black hair that never left her head. 

During the first few rounds of chemo, she kept much of her hair.  I am always grateful that she had some hair when she had spinal/cranial radiation.  It fell, she left enough DNA in the house, the car, the yard, the tub, the shower, the kitchen, the pillow cases, everywhere there were bits of Mary-Elizabeth.  It came out in ways that were not really noticeable. 

We joked about it, but it was hard.  So hard. Our dear friend Alison helped her buy a wig for the totally bald times.  Mary-Elizabeth soon learned wigs are hot and some of my friends thought she had too much product in her hair.  She gave up the wig after awhile and just let her beautiful head hang out.  

During her relapse and transplant, she was given a combination of drugs that hated hair. It came out in Movie/TV hair loss fashion. Handfuls and brush-fulls.  If you tried to sit with her and she put her head on your shoulder, it was covered in dark black strands of beautiful hair. 

We have never seen that hair again.  Too much chemo, too much radiation, too much prednisone, the death of her thyroid, GVHD. The usual "long-term side-effects."  She avails herself of hormone replacements, creams, potions, lotions, treatments.  It isn't the end of the world but just another factor she addresses every morning when she brushes her fragile hair.    

So why am I writing about hair now?  Why the whining.  Well, we are moving.  Because we are moving, we are going through the house and uncovering years of forgotten items.  I came across the notebook I put together during the first couple of months of her treatment in August of 2014.  In the notebook was a lock of hair.  Crudely folded into a piece of paper.  No date, no time, no real identification. 

When I touched it, I knew.  I understood what it was.  It was the lock I clipped before her first infusion.  The first dose of chemo I let them put in her body.  The hair from the time before we entered Cancer World.  I flipped through the notebook and realized it was filled with pages of anxiety and sadness and fear.  It was full of anticipation and understanding about what was going to happen to my lovely smart, kind and lovely daughter with a full head of hair. 

I wondered where I would keep this memento.  I seemed wrong to toss it. Or burn it. Or frame it. Or weave it into a locket or a bracelet of any kind.  I found a place.  A page in her baby book that hair from her first bang trim, her first curl and her now her last lock of Normal Hair.  

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. 

Transformations and Launchings

Our cells last at most seven years.  The earth is never still. Change is what life is about. If you are "I am against" change, your life is pretty difficult.  If you love to have "new" in your life, than change is a great thing.  

Most change is a slow process. We are don't really even notice it.  An extra pound, a perennial sending out a few shoots, hair going grey, a bit of light creeping back into the day. These are do-able changes.  It is the sudden that makes us all uncomfortable.  The death of a loved one, a building being removed, sudden break of a bone.  

What we don't often realize is that while the event was sudden, there were warning signs.  A known underlying weakness. A slow emptying of a long occupied building, deep circles under the eyes, an extra cookie. We are sometimes too busy to put the clues together. It is only after the event that we have great insight into the event.  While we are often shocked by the end-event, we knew at some level it was coming.  We see the trees and fail to see the forest.  

Meb took off several days with our car and drove to see Grandma Mary.  22 and her first road trip, solo.  

So this might not be a huge event for most but it has been so long in coming that as she drove away, I had to smile.  
16 Drivers-ED
17 Expiration of permit
18 Renew Permit
19 Expiration of Permit
20 Renew Permit.
21 Drivers License
21 Road Trip to Niagara Falls

5200 miles later.... 

Long process.  Slow Process. 
Satisfying Process. 

Not all turn out this way. Sometimes the end result is less pleasant.  Dad's death 4 years ago. Some weird bruises on the top of your child's feet. A pair of pants that don't fit anymore.  But change is happening all the time and we cannot stop it.  No matter what we do. No amount of white plastic boxes or labels or time on our smart phones will keep the world from its constant forward motion.  We have to sit back and enjoy the ride.  

2015 is here.  It came without our efforts.  Time to make the most of it. Because it is all we can do.

 

Thanksgiving and ThanksTaking

It is always a bit of both.  Give a little, take a little.  Leave a little. 

So we cooked.  People came. People ate. Food mounded on the table.  Our tiny turkey of only 21 pounds went on to feed the world. It took three days to do the dishes but what the heck.  Better to spend time together with Friends and Family then to have a clean house.   

For some reason I find I am doing lots of breath holding. But tests are coming and I am always afraid of what they will find.  I just keep waiting for the other shoe to drop. The one that will stick to the floor and not return. I know it is nuts to trust the Universe and also Nuts to not trust the Universe. Childhood Cancer is such a monster. A hideous multi-headed Medusa. Enough. So many kids did not make it to this Thanksgiving and more will be missing next year.  Losses just make it more important to keep going and gathering those we love close and closer. 

 Looking forward and not backward. Pretending there is a long future but know it is not the case for everyone.  So as the knives slip into their designated places, I plan for Christmas Eve.  Crab Bisque, Beecher Cheese and Tomato Soup.  Come one, Come all. Come for the adoration of the Soup Tureen. (We even found the soup bowls)  

Digging Deep and Moving On

Trying to move on is sometimes problematic.  Something we learn very early on that no matter what, the world does not stop.  It keeps moving forward and we keep spinning. It is hard sometimes to step back onto the fast track if you have been hanging out in another dimension.  You know when you are part of the world but not really.  A bit out of step.  A time of exploration and eventual re-entry.  I am working hard on the re-entry part right now. 

No matter what, there is to be daily activity moving life forward. Another class, a long walk, a trip to the grocery store, a book to read, a bit of laundry. Job Applications,  The usual.  

All of Seattle has been in a deep freeze.  I am not sure how cold, I can only observe what the hummingbirds signal.  Each night the feeder freezes.  Each morning I put the warm feeder out at a bout 7 a.m.  I am greeted with a bitty bitty bird scolding me for not waking up earlier.  I try to explain to him that I am shocked he is already up.  I know when he tucks himself into a snuggly part of the pine tree, he goes into a kind of hibernation.  I suggested to him this morning, he might wait a few more minutes.  I have found that earlier delivery of the feeder causes freezing in the bitter cold. 

I guess he and I have a lot in common.  We don't like to wait.

Oh well.  Waiting is highly over-rated.  My daughter complains all the time that I should be patient.  I don't see why that is a virtue.  Okay, maybe it is but there is a huge difference between waiting and being passive.  I am just a little more Pro-active in my dotage. 

I will keep moving forward.  Trusting in the motion and the actions of what needs to be done.  I submit to the demands of those that hound me for sustenance

 and rejoice in the fact I can actually deliver a bit each day. 

Startling Discoveries

All my life I have heard about "3 Minute Eggs".  I am a lover of soft boiled eggs.  Egg cups, Eire Shires (egg scissors) and small spoons are just added fun.  But the fact is I have never been able to perfect the process. 

Boiled the water, dropped in the eggs, watched them break, never quite right.  Three Minutes did not seem to work, 5 was too much.  I just settled.  No big deal. Just looked for the right kind of runny but could easily eat hard eggs.  

Then, it occurred to me maybe what they meant was 3 minutes of boiling if you started them in cold water.  Ever the curious scientist, I did just that.... 3 eggs, cold water, and 3 minutes of boiling.  What could be easier?   

And it works. 

Moral of the story:
1. You are never too old to try something a different way.

She is on the Train back home

so she has had some Grandma Mary time.  Always good. She loves the little old ladies. She loves to listen and comment and just fit in.  It does not take very long for them to realize she is one of them. She has packed 80 plus  years into her short 22.  

We have some very important days ahead of us.  Serious and important.  On Thursday we have the last appointment with the SCCA until January's big annual appointment.  I have lots of hopes that lots of meds are going away.  She has successfully tapered off the side-effect causing drugs and it should make the rest go away.... she could be down to some vitamins a bit of thyroid medicine and over the counter allergy stuff.  Oh, to hope for such a list of meds.

It is hard to hope or trust.  Tomorrow marks our 10 year anniversary.  10 years ago tomorrow this ceaseless, never ending journey began.  But we are only marking the beginning.... we begin on the 14th of August 2014 to mark a new beginning. The end of Double Cord Blood Transplant complications.  2.6 years of constant diligence, concern, anxiety.

It is replaced with new worries but new is always a way to start a school year.  New binders, new roommates, new classes, new teachers.  New. 

We are all about New Starts, New Hope and New Adventures.

She gets off the train at 12:30...... Here we go. 

Reflecting

Stillness

Quiet

Peace

Listening

Pondering

Reflecting

Lots of words for something we don’t embrace as a culture. I remember our friend Yim talking about how in Thailand they begin to teach meditation to kindergarten children and the first block of time was 15 minutes.

15 minutes… I wonder if I can do that. If I can sit for 15 minutes and not think.  If I can just be quiet. 

There is so much going on in my mind. Quiet does not seem to be much of a possibility.  I am going to try.  A moment. A moment of quiet. A moment with the dogs not barking, the phone not ringing, a moment with only silence.

I think things are at a place such a thing is possible.

I will let you know how it goes….

Hoping.

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.

                                                                                                                                                              

Crow Parenting and lessons Cancer Moms could learn.

1.  They loosely define family. There is always mom and dad and a few hangers-on.  They call them Nanny Crows.  It helps because there are usually two babies a year.  Often the Nanny Crows are young adults from prior years that have not quite left their Mom's basement. 

2. They don't let them out of the nest until they can fly on their own.  When they do let them out, they have two adults with them all the time. 

3. They feed them, they stroke their necks and nuzzel them sometimes and then at some point they also ignore their screeching.  When one parent does not respond, the baby goes to the next parent. When that does not work they follow their parents around and skwack some more.  This goes on all day but in the end the kids start to feed themselves.  They score snacks but they learn and watch and figure things out. 

4. They keep them close for awhile but encourage them to play with other bird friends  Often they even let them play with starlings.  When the babies come out of the nest they are adult size with perfect feathers. The parents and the nanny's are pretty bedragled by this time of year.  The parents keep the babies groomed but when they go play with their friends things get out of control.  You can always tell by a feather or two sticking up.  

5. They pay attention to their kids.  No texting, cell phone calls or television.  They work together as a family to steal food from the Stellar Jays. They spend evenings together and fly away to roost about 30 minutes before sunset.  

I often wonder if the Crows record such observations about us?  They learn from each other, they remember faces, they know when food should appear and demand it regularly if not delivered. They set up their own "homes" and jealously guard them, chasing away the most officious interloper.  Raccoons, cats, dogs, even people are chased and dive bombed.  As a greater group they will even take on a Bald Eagle.  

We have watched, we have been amazed, we have been delighted. Our own little nature show.  They are a part of our lives. A weird but present example of parallel lives. 

Many Mom's mention they feel like they stepped off the path and have a hard time rejoining their former lives.  I think we have to do it the ways the Crows do... a bit at a time.  

We

have been fed and coddled and protected and now we are venturing back into the big world.  The thing we need to remember is we are not alone.  We are being watched protected and will be helped along the way. 

We can do it. 

Gathering and Letting Go

 We are

essentially Hunter/Gathers.  We don't necessarily use those skills for the same reasons anymore.  It has been a long time since I went out and captured something for dinner.  However, I am on the hunt for cool and wonderful and life saving items and concepts and words and interesting things all the time. 

I love to watch and look and listen and discover.  It is something deeply embedded into my very being. 

One thing I gather are people.  People with interesting and varied lives. I love their stories and histories. I love digging deeply until I find the connection. The thing that makes us the same yet not the same.  For example, last night I had dinner with one friend and found out the server was the aunt of one of Mary-Elizabeth's friends.  I am sure we were at the same Graduation Party.   The threads that connect up are long and mixed up but they are real and are strong. 

We gather people all our lives.  The roll they play varies over the years but if we are lucky there is a continuity of great depth.  They know our stories and we don't have to explain too much. 

I also have hit a point in my life that I am loosing those very friends.  I learned of the deaths of two such people just yesterday.  Both were gone way before was necessary.  Both were in my life at various times and in various ways.  Those ways change but they were still there.  We still had a connection.  

This shedding of friends and family is much more painful then gathering.  I often wondered why Meb was so uncertain about making friends with her Cancer World buddies.  It is way too hard to loose people after 30 years of friendship let alone a couple of years. 

Here is to Alison Beck and Phil Caplan.  Both leaving in their 6th decade.  Way way too soon. 

She is down to One Last Sirulimus

Next week at this time the "Girls" or more specifically, Pearl Anne will be flying solo. She will be in charge of keeping all that invades from MEB's body. 

Protocol:  Immunosupressants - 180 days post transplant.

Mary-Elizabeth 31 months or about 900 days. 

She is almost done with this step, 24 months, three different kinds of suppressants  she is almost done with them.  I am currently not totally freaked out about it.  

I think we are all so tried of this it is hard not to just be ready to be DONE

I am feeling like the time as come to end this blog after 10 years.   Maybe I am done and leaving this writing forum will help me be DONE.  I won't quit writing, I will just do so in another place, another title, another forum.  

Maybe it is time to move on in the way one can  It is a tentative moving on, not really but sort of.  Hanging out in a different place in Cancer World.   As we all know, we don't ever get to really leave.  Now it is about managing the long term side effects. Kidneys, lungs, brain, menopause, thyroid, cataracts.  (These are not just stuff that might show up, these are guaranteed to be a concern. )  

So this morning, I will just drink my coffee.  Water a bit. Watch some plants grow.  Read my book a bit.  I will enjoy this moment, this instant. This bit of Seattle Sunshine.

 

Not

So how do we define it....

Prayer, chanting,  putting good energy into the universe, wishing, meditation, it is all the same. It might have a different name or method but it in the end it is the same thing. It is those moments when we speak to the otherness surrounding us.  Lots of people say they are non-believers but I have heard them curse and God is usually in the mix. 

I think it is just our nature to want to make sense of the world.  At some point I know I thought I had some control over how the world would turn, or at least the little bit I inhabit.  I can plant the right flowers, cook the right food or go to the right restaurant. I can save for college for my child and for retirement.  I can work hard and help people while making money.  I can take a few pictures and capture a few memories. I can plan for fun events and try to be strong when unfun things happen.  I can grasp things within my reach and keep the world calm and productive.

Ha.... Oh boy... was I so so wrong. Evidently the first time my child suffered with cancer was not enough.  I had to be taught that lesson again.  Nothing. Absolutely Nothing is in my control.  Well... the way I react and respond is in my control but other than that it is a free-for-all.  

Plan and execute the glorious front flower pot.  Watch it struggle and sag and fail. Reasons, many.  Should I have known that slugs and snails love, I mean, love the little petunias... Nothing eats Petunias.  Wrong, those are just sort of petunias.  They have been genetically modified into slug food.  In stead of glorious massive beautifulness. I have this is it. So.... what to do now. 

This is something simple. Something I know how to do.  I have a green thumb.  Hey look at this basket..

So, do I swear at the universe, mope because I have lost my green thumb or go try something really different...

We shall see, because in the end it is not up to us.  We have no control. 

Quiet... sometimes it can be good?

I won't stop posting until Lulu is out of the woods.  It's that sort of "hanging in there" no matter how long or how hard the process.  

We have such a short attention span.  145 minute movies are often deemed "overly long".  Harry Potter is the longest book most kids have read, ever.  We like short, packaged things.  100 calorie brain bursts. 

Cancer is not like that.  It takes a long time to find, it takes a long time to fight, and it takes an even longer time to ever, ever forget.  Oh, that was a silly question.  No forgetting is possible.  It is just another series of events that are seared in your brain.   A Pearl Harbor, John F. Kennedy, 9-11 sort of moment. 

It has been my experience that no news is not a good thing.  It is easy to write about good news, it is hard to write about bad.  For reasons I don't understand, there is a need to package the bad news in such a way as to ease the blow.  Always be positive.  Always figure out something good to say about a situation.  Mad is acceptable, sad is not.  

I promise to post when I have news about Lulu, until then, keep the candles burning.  

So this is how it goes...One thing leads to another...sometimes it seems like an endless cycle.

The quiver and medicine bag are full.  Full of much magic and a variety of potions and spells and noisy machines.(Now the childhood cancer quiver is rather bleak and antiquated but the potions are better than they were.... but those are thoughts for another day. )

Best example would be Meb.  She is on 20 medications.  Of those, only 2 are therapeutic. The rest are for side effect treatment.  

Prednisone and Sirolimus cause lots and lots of side effects and so there is also
Tacrolimus Cream
Bactrim
Valacyclovier
Multiviatims without iron
Omeprozole
Vitamine D
Cetirizine
Levolthyroxine
Lisinopril
Lovaza
Magnesium
Melatonin
Warfrin
Mylanta
Tums
Zofran
Atavan
Hydroxyzine
Scop Patch
Oxycodone
Sunscreene
Cyclobenaprin

Boy the list is so much shorter now.  It used to be 4 pages. 

So Lulu is suffering strictly from side effects.  Her cancer is not doing all of this to her. Her side effects are what is causing all of this havoc.  The cure for cancer is not easy by any sense of the imagination....  Here is the newest on the poor child. 

Lulu had a blood clot in right arm. Went for ct scan to make sure no bleeding on brain..there was not..started blood thinner to get rid of clot.  Her arm is beyond huge ....her blood pressure was running high at midnight but came down at 2am ventilator is on 60...her lungs need to heal for us to come off this...I asked the doctor how long he thought she would be on ventilator and he said he didn't know. We have been in hospital over 3 weeks and day 9 on ventilator....staying strong and fighting another day from ICU...rubbing lulu's head with coconut oil..wiping her eyes. ..lotion on legs and arms..wipe her face ...caress her ear...smell her.....whisper secrets and dirty jokes in her ear...oh my sweet girl you are loved and prayed for by many but I am the lucky one who you call mom...#luvforlulu

The road is feeling like it will never end.

 
  

Ups and hopefully no downs.

Childhood cancer really is rare in the scope of the 300 million or more of us in the U.S.  Some tiny bit of the population.  Sort of like Medulary  Thyroid Cancer.  But once if shows up in your life all of a sudden everyone has it.   You make connections with those that have it, you run into people that have it. It consumes a part of your life.  

Today Meb had an appointment with our lovely Seattle Children's Bone Marrow Doctor.  She is moving to Portland Maine and this was the last time we would be seeing her. By Dr. Pollard.  It was a great appointment, the taper is working, most days. Meb is getting allergies because she is weaning off prednisone.  She has some spots but they have been around less than 24 hours and we are hoping they will subside.

Her kidneys are unhappy but then we have been down that road again.  Hopefully she will not continue to loose kidney function.  Life is good.  

So while I am sitting there I spot a parent that was on and off the floor during Meb's transplant. He is stressed. He is freaked out. Then I saw his son.  He is older than Meb and he is bald again.  Crap... he is back in treatment.  I didn't ask.  There is no way this is a good thing. 

I just can't get away from it.  It haunts me. It terrifies me. It makes me crazy.  It's a slap in the face.  The ability to believe this will ever ever be over eludes me.  By ignoring what goes on around me I can sometimes forget.  But not in a convincing way.  I am just a bundle of freaked out Mom...  

But on the other hand Lulu is responding.  Really responding.  Her story might turn around.   Sounds like her body is fighting. 

Watch out here she comes....Lullu came back from MRI they could not do it because she wouldn't stay still!!!! She opened her eyes and looked at me. She is responding to me...they had me ask her yes or no questions but no response but when I tried to take my hand away so they could get in there she clamped down on my hand and still holding on to mommy...they are ordering ultra sound on right arm where pic line is because it is huge they are afraid of blood clot....but I'm so excited about her moving I'm giddy!! And She Knows My voice...Will Update Later But Celebrate And Dance Because Lulu is Responding And SHE Hear

s us!!!! And we have 11.7 hemo 5k platelets 6100 white blood cells and a 3200 anc.....she is doing it!!!! Still on 70 percent ventilator

Like

No News, Nothing to Report on Lulu....

Hopefully this is a quiet healing time. Hopefully it is a time for family and friends and Lulu's peeps to visit.  

Hospital Week-ends can be very quiet.  Sometimes there are so many people trying to do stuff, the quiet healing time was lost. 

A time to catch up on sleep and reflection. The best part are the nurses.  These are the "I love to work on Week-ends and have the rest of week off" Nurses.  They are full of vim and vigor.  

Because it is more quiet, they have a different energy about them.  

Hoping for only good things for Lulu and her family .

World Cup is Like Childhood Cancer

Lots of player
Lots of teams
Lots of ways to win
No one really understands how it works
It doesn't happen that often but when it does it is all consuming
It comes back no matter how hard you try to avoid it.
Many people are there to watch and help.
Confusing 
Life Consuming for some and totally ignored by many
Needs a large group to cheer you on
Needs a large group to cheer you up when things are bleak
Needs constant fans to continue when it is over
There are Tee Shirts/Jerseys
It never seems to end once it has started
It can slip into the back of your mind for a while but there are always reminders
Some inevitable violence is expected



But most of all I don't understand it... at all. It comes with no warning and is a constant source of excitement and sadness. Some win, some lose there is no way to figure out who is going to do what. 

Sometimes it just "is" 

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....

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.