Sometimes things just don't work but the taper seeming to be.

It started a week ago when we tried to go to brunch at Palisades....  Last time were were there the waiter, once apprised of MEB's dietary restrictions was great.  He brought her things hot and cold from the kitchen, never flinched when she asked.  She can't eat from a buffet. 

 Now you might ask why we would go to Palisades if we knew they had a buffet for brunch.. She has so many other restrictions now we knew there would be something she could eat.  They have a huge variety of stuff that is legal. 

Well we sat down, ordered our much needed coffee and talked to the waitress.  Oh she did not want to play. She made it very clear we were a bother.  We left.  I did stop by the front and asked to speak with the manager.  He apologized and pleaded for another chance but we headed out the door with a promise of better and free things the next time.

We then went to Palominos. It was a bit better.  I won't even mention the ice cold Calamari.

We went over to Boom Noodle for some of their yummy food.  Well of course the menu is changed.  Of course the good Vietnamese noodles and rice dishes are gone.  Of course the lemon broth chicken noodles have disappeared and been replaced by sort of bad Asian food.   We are clearly on a roll. 

We have been sticking pretty close to home but tried to have some BBQ tonight.  So off to RoRo's.  Best stuff in town.  Walked in for ribs, both had been "86"ed.  I don't remember what that means exactly but I knew what it meant   Left there and headed to Hale's Ales. Land of   Panzanella salad.  Love that salad.  The child was mourning the loss of ribs so was pretty snarky.  (This is not the first time we have gone to a BBQ place and found them ribless in Seattle.)  

So something was found among the choices and to top off the evening she ordered a brownie. They have great brownies.  Wonderful brownies..... unless you re-heat them in the pizza oven too long and the are burnt on the bottom. 

My dad was legendary for having the worst meal ever prepared in the restaurant.  He was always afraid to send things back because he knew the chef's would do to them.  Floors, stomping, spitting, was often involved.   We are hoping that with everything else going on, she is not channeling Dad. 

On a better note, the new very slow, very long very complicated taper is going just fine.  

Five Years is not Enough

We all make deals with God all the time. If you help me pass this test, I will say 10 Hail Mary's a week.  If I pass this test, I will never swear again.  I promise to do anything to make this nightmare go away, I will even fold the laundry.  (you have not idea how bad it has gotten)

My daughter should not have cancer, I want her to graduate from St. Joe's and go to Holy Names and graduate from there... that is all I want.  I want those 5 years they talk about.

They always talk about 5 year survival rates.  When the words are tumbling towards you and your brain is in a rapid river and all you want to do is hear good news, 5 years sounds like a gift.   It is something to hang on to as your whole life is being dismantled and you are rushing down the river.  5 years. 

Well let me tell you from deeply felt experience, I want 50 years.  5 is not cutting it.  5 years off treatment flew off the shelf so fast I didn't even notice it was gone.  Whossh, and it was gone.  From what we have been told, it takes 5 years to recover from the treatment.  That should not be counted as the 5 years.  

So the docs need to buck up and they need to look out into the future.  They need to be more optomistic.  They need to re-write the script. 

50 more years...... 50 more years.... or 60.  I am not too picky or demanding. 

Today the Dentist and the Post Office

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

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

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

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

Mercury Must No Longer be in Retrograde

Mary-Elizabeth has her big follow up appointment at SCCA. 

I had my first class at the U and loved it.

I was called at 6:10 am and asked to Sub.

We are moving forward.

Yim recently went to Eugene to visit mom.  He took this picture. Lots of my cool pictures are from his cameras. (He buys and returns camera's  like crazy. He loves America because of the return policy.) 

Yes I know I have two pictures of mom but I don't know how to get rid of the extra....  Things are better but not perfect.

Back to School and Thoughts about tomorrow....at the SCCA

So, here I sit upon the verge of ending my 50th decade in a couple of years and I am returning to school. Kind of.

I am taking a Human Resource's certificate program through the University of Washington.  While it give me a UW Internet address, I am not quite going to the dark side of being a Dawg.  My father would have never approved.

I am not sure where this is leading or what will happen but it seemed manageable.  Two nights a week, not lots of money, information about an area I have worked in before and one I have lots of skills to take to a business or educational institution.  I have run my own business, worked with business people and contracts and lots of stuff or a long time.  I have lots of mediation and conflict skills so who knows where this will lead.   It just seems to be something that requires some but not a bunch of my time and should be workable given where Mary-E is in her treatment.

I was pretty proud of myself putting 16 dates on my calendar.  I love that there is no class on Halloween.  Who knew it was a school holiday.

Mary-Elizabeth has a big appointment at the SCCA.  Blood draws, multiple appointments and we are hoping for an answer from Dr. Carpenter's crystal ball.  She stopped one of her medicines today and we are hoping that the prednisone will start to taper after tomorrow.  I figure ElliMae is settling in and ready to like her new body.  It has been 9 months and a few days.

Hoping, Hoping Hoping.

Oh, Fruit cake is being "fed".  It gets to eat every week or 10 days.  Only the good stuff. 

Oh, dear, I need to get a notebook... and take glitter and beads and glue to class.  Luv it already.

So...... The Eye of GVHD

Limbo
Waiting
Sometimes waiting is a good thing. 
Sometimes it is nervewracking.  We are in the Eye of GVHD. 

Had it.
Took huge prednisone doses.
It went away.  
Drugs went away.
GVHD came back.
More Drugs  and they are about to go away again.  So we wait.


We were at clinic at the break of dawn this A.M.  Blood draw, coffee, Doctor visit. 

What's going on?
Nothing
Any new complaints?
Bumps, bruises?
Skin okay?
Can you walk on your heels?
Has anything changed?

No nothing has changed. 

WE are just waiting for the time to come when the rest of the prednisone and the hydrocortison go away and we see.  See if Ellie Mae has settled in to her new home and is happy.

Everything has been stable and the desire to taper is strong but taper fear is real and very ominous.  Sort of like those peoples waiting for the hurricane to appear.  We are in the eye.  Knowing it is just a matter of time.  

Everyone is trying to make Dr. Carpenter pay attention to this child.  They are waving the taper flag in front of him but he is not responding. We have an appointment in  a couple of weeks.  In person we are hard to ignore.

So we wait, pass the time.  Wonder, make Chiffon Cakes and invite people over for dinner.  Wonder if it is really going to be okay. Take out the good dishes, the silver and the crystal.  Wonder some more. Seems like a good thing to do while we are in the eye.

The eye of the storm only lasts so long.  I am hoping we are prepared, no matter what the second half brings.
                                  

The sun is up, I should walk the dogs.

The Plan:

Water the yard.
And feed the birds.
And floss my teeth.
And fill the yard waste bin with something I don't want.
And do some more desk clearing.
And do some laundry and hang the sheets out to dry.
And rake up the irritating pine cones on the side of the house.
And do some gardening on that side and maybe plant a tree or two. 
And decide what outing we can do today to get Mary-Elizabeth to do some more walking.
And call my mom and tell her about the newest news on Featherville Idaho.
And look on E-bay for Ice cream forks lest I ever return to the 1988's.
Contact my newly found Barnes Cousins and send them some pictures of the family and plan a mini-reunion.
Go on an archaeological dig and find more pictures in the basement and everywhere.
Talk to friends.
Figure out something for dinner.
Finish War and Peace
Finish the two quilt backs so I can start a new one. 


Reality:
Some watering,
Potatoes dug,
The yard waste filled a little bit,
The Russians are almost to Moscow
My cousin Jane came over.  She is moving to Seattle and lots to say.
Trip to Snohomish in search of a desk for Mary-E
A lovely lunch at a Thai Restaurant,
Lots of walking around a cute little town,
Child not exhausted and would like to go again.

Sometimes the things you end up doing are much better than the Plan.

 I think the Spaghetti Nebula just happened without a plan.

Construction

I recently sent an e-mail to my friend Beverly.  She works for the City of Seattle.  To her horror I reported how she might have brought up our plight of the bad food we were being served while in the hospital.  All while she was being served something wonderful from Specialties.  I am glad the Lisa Brandenburg learned my whining is unending.

Anyway, while we were in-patient Beverly sent me a notice from the city explaining the lengthy construction project to be done between February and late September.  The plan was to completely re-do 85th from 15th Avenue NW to the freeway.  Huge project, long project, difficult project.  85th has become a major transportation route over the past few years.  I am not the only person that moved to Ballard.

So we have been living with the project.  Big equipment, big things that go into the ground.  We pound and dig and saw and make all sorts of noise.  We lay cement, we lay pavement we paint and putter and do more stuff.  

We have lived here long enough to know how to avoid it.  Then something happened to me.  Maybe it was going to happen anyway, but it certainly happened sooner than I thought.   I became intensely curious about the project. 

 I started driving on 85th as much as possible.  I loved seeing the progress, the big holes that appeared and disappeared.  I love watching the skill with which the digging guys picked up large items and small and moved them.  It really has been and education in what happens and what is below a street.  Granted there are lots of places and times that guys just stand around, looking in the hole or
 at the curb and contemplate the cost of beer or the best place to find a hamburger.

I realized the other day they were on the last part of the project.  I will miss them when it is gone.  The street will be perfect, the curbs continuous and the pot holes gone.  No more daily surprises.  Just a road. 

Meb has been under re-construction.  I won't miss when the bulldozers and grinders and cement trucks leave the site.  I will always remember what went into making the path smooth.
I

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.

  

So What are you doing now...

When did you get admitted for the transplant?  January 16th

When was the transplant?    January 24^th

When did you leave the hospital March 20^th.

When was day 100?  May 4th

When did you go back to Children’s? May 16th

So now what?

GVH WARSSSSSS

Graft Vs. Host /New Cells are working –yeah.  They don’t recognize their new body-boo

This is a very weird space.  Here we sit.  The line is gone so things like swimming are possible.  (Only in the deep end, only when kids are not in the pool, only, only, only…..)

This is about the time everyone sort of thinks life should return to normal.  It feels like it should.  It feels like there are not big goals and accomplishments and on-line classes, returning to work, big trips, back to the real world.  I think both of us feel like that should be the case but there is this big cloud.  The GvH cloud that seems to be hovering.  It is like we are stuck between floors and there is no one on the other end of the line. They will be there soon, but not now.

Mid-August she completes her Prednisone taper.  We hold our breath, a collective breath holding.  Did it work?  Will the GVH come back?  Will the new cells have learned to love the new body? Will it be time to really see and start to taper off the tacrolimus?  Lots of questions and no way to know the answer. 

So the answer to “So what are you doing?”  is waiting, watching, preparing, staying close to home.  Wondering, hoping, dreaming, investigating, sorting, purging, quilting, jamming, gardening, even reading.  Half-way through.  

We Missed Elli Mae's 5th Month Birthday.

I don't quite get the "new birthday" thing.   Some parents  have cake and ice cream and celebrate every year. We are not that family.  There will be a celebration of sorts on January 24, 2013 but that is more of a

"Get out of Jail" sort of thing but then there are still some parol issues. I wonder when we will really be done.  

Six months brings a bit more freedom but there are still lots of "NO's"  This last admission for GVH sort of took my by surprise and deflated my "We are Rock Stars" attitude.

I am trying to be brave and optomistic and have planned a couple of short get-aways for myself but am also preparing myself for the need to cancell them.  I just hate the Uncertainy and may have to go to the Space Supply Store and buy some Certainty.

Fred told me before this process began that they would give Mary-Elizabeth her a chance to have her life back but we would not be returning to the same life. I told him we really wanted the long term insurance policy.

Every time we do something I realize how much has happened to her. Her body is so beat up.  Time will heal the scars, the holes, the marks.  She will become stronger and more active.  She will do more than wait for her friends to call and will call them.  She will get back into some sort of school before she returns to finish at Gonzaga.  It just takes time. 

It has been 5 months since transplant, 10 months since relapse, 7 months to go to year one. 

We can do this.  Now we need to get ready for the "real" birthday party.  4th of July the dogs go on the grill....