So here we are.... gliding along, not knowing others are really struggling...

That is a lie.  I know there are horrible battles going on every day, all day and every night. I know kids are dying and mom's are crying and people are getting horrible horrible bad, worse than you can imagine news.

As we head out of this current orbit around the Double Cord Blood Transplant  universe and head to the unknown galaxy of Post DCBT, I try to be a bit like Lot and not looking back at   Sodom and Gomorrah.  I don't want to know what is going on behind me but I know I am turning into a pillar of salt.  I have not found it possible to just walk away.  Or in my case, run like hell. 

It is so hard.  Sitting here tonight, working on my blog, trying to do some editing, figuring out what I need to do to publish and then I hear a ping.  A bell like sound that says I have a private message on Facebook.  I check and it says:  

I thought you would want to know my dear son passed away yesterday. 

I see those words and it is like a kick in the gut.  This is a kid that had 10 months of chemo and a major surgery and was clear and then, it was back just a few months ago and now it is over for him.  20 years old. I can just feel the balloon of hope and prayers collapsing around a devastated family and friends and his best friend that did a campaign for him to go to Europe.  (The hope was to take  both families but from what I can gather, it was just the two boys.   I am sure they had a great time. ) 

So I stop.  I reconnoiter, I check on my kid.  I gather the Momcologist around this devastated mom.  I relieve her of the responsibility of "telling" another human. I start to look for the obituary because I will go to the funeral/service.   I do a quick search and find the child's Facebook and Twitter account.  I heave a heavy sigh. I write a few words and do what I think helps and then I turn away and head back on our road to recovery.  

But I know it is like the Ray Bradbury story about the guy that steps off the designated trail when he goes back in time to hunt dinosaurs.  When he returns the world has changed.  I have stepped on another butterfly and the world will not be the same.  A bit of hope chips away.  

Every time one of these children die, they take a part of the universe with them.  How much they take depends on where they were in the child's life. The moms have a Grand Canyon, Winslow Crater, Pacific Ocean kind of hole in their lives.  The loss is never minor or insignificant.  It is gaping, hard to close and subject to multiple infections and complications. 

So we say goodbye to another child.  A family is decimated, the world looses amazing potential.   His last tweet:

If you do everything right, people won't know you did anything at all.

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

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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. 

Two Worlds

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

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

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

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

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

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

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

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

Promise, I am leaving the mallet home. 

Landslides and the little pebbles that follow.

Whidbey Island let go a couple of weeks ago.  In the middle of the night for no apparent reason.  Bits and pieces of it continue to slide.  I looked a the before pictures and it is clear this was not the first slide and won't be the last. 

The land below the cliff was covered in trees and well vegetated.  It had been 100 years since the last slide and everyone had forgotten.  Our memory can fade and we don't remember who put the big stone ups at Stonehenge or what happens if one group of people declare another should be wiped out of existence. (I am an old history major.)

But the important thing is memory fades.  On a conscious level at least. We as a group no longer see a saber tooth cat and have a flight or fight reaction.  We see it as novelty and empathize with our fore fathers and mothers.  Simple. But somewhere deep in our souls we carry the fear of the next cat attack.  We have transferred the fear to other things both big and small.  Cars, disease, asteroids hitting earth, choking on Cheerios, germs. 

Cancer Parents have another list of fears.  Scans, blood draws, MRD results.  It has one big word attached to it,  RELAPSE.  It haunts us and with good reason.  As a parent when the first diagnosis happens, we focus on Remission, then cure.  We work on getting our child out of intense treatment and into maintenance.  We hate being in maintenance because the visits and blood test that reassure us of continued remission are few and far between but it is a sign we are headed to cure.

But as parents living in Cancer World there is this niggling fear RELAPSE is living around the corner still.  It is alive and real and very present.  It is that small pebble letting loose from the slide signaling the big slide. 

It is not possible to live any sort of life in fear of horrible things happening all the time.  You have to let your life move forward. It is important to keep making plans for the future.  It is not mentally or emotionally possible to keep watch all the time.  It is necessary to keep the RELAPSE monster at bay.

We are not even close to the edge.  Things are beginning to firm up and it seems we are going to be on solid ground.  I am going to look away from the once crumbling cliff and hope for the best.  When I encounter a mom or dad with a hopeful story about how long it has been since the last dose of treatment, I am not sharing our story.  We never know if the cliff is going to present itself.

Turkish News...

i'm not neutropenic anymore :) and the Mc test results: engraftment is %80-%90 okey..

 but i dont know that is that have to be %100 ? is %80 - %90 a good rate? i'm excited.. 

still have Bk virus :( and vomiting.. maybe when this problems end they let me go to home :)  it has been 2 months that i'm here..

So Guliany is the 4th person person in her country to have a double cord blood transplant.  She asks me these sort of questions and then I ask our docs and then they tell me and I tell her and then she tells her doctor. 

Sort of funny how that works.  Sort of amazing how the Internet works and what a great gift it has become. 

Good news from any part of the country is more then welcome.

Go Gonzaga and why are they not number 1?  Could someone please explain that to me.

  

She has escaped but I did not....

She is out, She is out, She is out.  She has escaped the horror that now surrounds each and every blood draw. Her bruises are solid PURPLE. She is giving herself two more shots a day.  Each shot = a bruise.  It is nuts.  I look at her bruises, and scars and the stretch marks from the prednisone.  It makes me so sad.

With each admission and each time the process becomes more complicated and hurtful and frustrating: she cries, she is sad and then we move on.   Today she needed to get out today so she could go to the Ruby Project class and do some printing.  Photography is a great thing for her right now. Great Distraction.

I, on the other hand had challenges and a couple fun things today.

 Did not sleep in;
Did arrive just as the donut lady was serving to the  SCCA floor;
Had coffee with Amber and Karen;
Missed rounds;
Met some new people with a 9 month old ALL baby, let broken heart heal;
Tried to take a nap but then quicker then you could say "Discharge"they were pushing us out the door; 
Dropped Mary-E at the house and headed for my root canal appointment;
Found a great parking place;
Was on time and there was very little paper-work;
Met with the nice doctor;
Could not convince her that a hand full of pain meds and time would make the excrusiating pain in my tooth go away;

OMG. 

Never go to the Root Canal lady without a fully charged I-Pod.  They drill and dig and then start again. Then they dig some more.  I never thought it would end. 

And when it did, it was a lie.  I am expected back for one, maybe two more chances for drilling and digging and ......

I will have a book loaded on my I-Phone, it will be charged and I will have really fabulous earphones. 

My ordeal will be over in a few weeks.  She is not so lucky.  Headphones fix my situation.  I wish  I could find the magic ones that would fix her.

  

Bright Moments in Gray Days

Grey or is it Gray skies.  Rain, dripping.  Dogs sleeping. Child Sleeping. We are done doing errands today. 

Up at 5:00 a.m.
Out of the house by 6:00 a.m.
Off to Hospital for the "Line Pull".

Yes, they put her to sleep, and every so gently but ever so firmly remove the double Hickman from her body.  The one that has transported blood, platletts, IVIG, chemo therapy, fluides, more drugs then I can list, pain meds, anti-everything meds. 

The Line has been less willing to give up some of it's precisous fluids lately. It was more willing to receive than to reliquishe.  Since it is such a risk for infection the decission  was made to have it leave the building.

I was not in favor of it but she was so so ready to have it go.  She is in charge.  She has to have the IV's if necessary and blood draws.  I will not say a thing...

 Okay maybe one I told you so but not for now.  For now I will let her sleep off the side affects of the sleepy medicine.  I will get a couple of things done while it is quiet.

Oh, while she was recovering, I was conspiring with the secret committe to over take the caffiteria and food service.  I love a good conspiracy.

Feeling So Helpless, so what to do.

"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

A child will a very aggressive and very rare, 300 a year,lymphoma is dying.  We saw her less than two weeks ago and she was going to have a bone marrow transplant and life was good.  Now she is saying goodbye. 

The news took my breath away.  We were at Children's for our first "after SCCA"  appointment.  It had not gone as planned so I was a bit Grumpy.  I saw Ruby's aunt and received the news. 

 My mind immediately went into overdrive and I was simply stymied.  What do we do for the parents of dying children?  Do leave them alone to grieve and spend the last few days with the most precious thing in their lives?  Do we go visit?  Do we give them gift cards? Do we do their laundry? Do we take them food? Do we do something? Do we do nothing?

I called my sister Belle.   I asked.  Her answer was "There is nothing you can do". Most people flee.  Most don't know what to do or what to say.  They simply flee.  We know what to do after someone dies but as a culture we certainly lack the "before" part.

Okay that was helpful..... NOT.  So I remembered a post I did a long time ago.  I don't remember the book but I remember the quote.  So here is what I am going to do. 

Anne Holm brought us three kinds of cookie dough.  We had not used it yet so last night Mary-E made all the cookies.  I am going to put them in a basket with some good china cups, some tea and take it to Kate.  The nurses have instant hot water and so when people come, they will be able to give people some tea.  

Something to not spill as the tears do.  A little something from a Mom who has been too close to the same situation, more than once.