Facts, not Reasons or Solutions.

Tacro level: Stable
No Stones

No evidence of a clot
Nothing backed up
No masses
No >>>>>>> fill in the space with words no one knows.

Kidney 1: 12.5cm  up from 11.6
Kidney 2:  12.7  up from 11.3

"What does that mean?"

No answers to what that means, yet.

Who knew kidneys could grow?  We learn something every day. 

Today I am glad there are no masses, blood clots and stones. 

Tomorrow, who knows what that will bring.

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.

Faulkland Islands, Trinity Ridge Fire, Double Cord Blood Transplants.

What?  Are you crazy?
Do you have a screw loose?

Don't you remember January of 1982?  Some Argentinians landed on the Falkland Islands.  They were not welcome and the Brits sent a bunch of ship to "defend the empire".  We waited for  three weeks for the ships to get there. 

It was so so weird to sit around and listen to the news about how they were sailng and where they were going to engage the enemy. For those of you that forgot, the Brits won, lost a couple of ships.  200+ Brits dies and 650 or so Argentinians.

The Trinity Ridge Fire is taking forever to arrive at Featherville.  Yes, the fire people named two fires starting within a day or two of each other Trinity Bridge and Trinity Ridge.  It is not fault my spelling is off sometimes. 

More than a week-ago my Cousin Judd was told to go to his cabin and take all of his cherished possessions with him and get out.  The fire was coming.  The fire is still not there.  They are waiting.

Mary-E had a double cord blood transplant.  And we are waiting.

It is the not knowing when the waiting will be over. 

I know that during the Falklands, we were in law school and it was January and we were deep in our books.

I know those from Featherville have been trying to figure out what to do.

I know I have been trying to be busy and doing positive things with my time. 

Sometimes the waiting gets to me.  Today my friend Liz took me to the Pacific Northwest Alaska Quilt show in Tacoma.  Sometimes waiting is a good thing.

Sometimes things just GO

It's not right or wrong, it just is.  All day, we spent all day at the clinic.  No way around it, and someone asked if spent a lot of time waiting and we really did not.

In at 10:30:  Back into a room.
Heat the child
Look for vein that wants to cooperate
Look some more for a vein that wants to be invaded.
Look again.
Look yet again.
Find the vein, Mom looks away.

I want her to have a port put in because I cann't stand the pokes but then I don't think that is a reasonable request.

IVIG, 138 minutes plus a flush or two.

Then a doctor appointment.  Never were we bored or kept waiting, not really.  It just is how the day goes.

I am practicing the "nature, time and patience" chant a lot.

I spoke to Michael Reinfelt today.  His daughter had a transplant many moons ago.  He and Susan came to visit us during transplant.  He told me it took about 4 years before life really settled down. 

I guess we have a bit of a way to go.  I can do this.  She can do this.  Sometimes I just assume this is going to over and done.  We have had no big set backs, no big serious issues, no ICU, no drilling of bones to stimulate growth. 

WE can do this, we can do this, we can do this.  Said three times while twirling around.

Now if I could just figure out why I have the urge to buy wine and make Muffalletta sandwiches.

Fires are burning.

If you are from Idaho and have lived in Southern Idaho where fires grow to thousands of acres in a few hours, you appreciate the power of flames.  Feather ville front porch.


Lots of fires happen other places than Seattle.  I drove by Cle Elum an hour before they began understand and fear and flee fire.  

 I have a cousin that is waiting for his house to burn in Idaho.  His house is in Featherville.  It is such a feeling of dread, knowing it is coming, hoping the wind with shift, hoping it will be okay but resigned to the fact it might very well happen no matter how many fire trucks are sitting in the town ready to defend.

 Everyone is very aware of dread and fear.  What it is like to know something is going to happen and we can not stop it.  It creates that pit in the middle of the abdomen and waits and grows and nags.  It does not hurt but it makes you aware of something you are ignoring and can not fix.

Tomorrow is one of those days for Mary-E.  She has to have various blood draws and some IVIG (Immune Globulin).  She is dreading the insertion of the IV and then the infusion.  IVIG can cause some serious allergic side affects.  I hate each time she has to give blood and get poked.  It is ugly.  Her body is so so tired of all the assaults and shows it's anger by creating really really big bruises and lumps.  I am grinding my teeth just thinking about it. 

I called Cousin Judd and he was driving a load of something to Montana.  He had been to Featherville and had taken out a few items and said good bye to his house.  He was keeping himself busy until he heard the news.

I think I will find a project, or maybe make a list of projects.  Something to keep my mind off of tomorrow and of course all the other things I know could come or not.

Freezer needs to be defrosted
Cupboard needs to emptied, sorted and cleaned out.

They are going to use some of their toys today.

A small camera is going down her throat and into her stomach.   It is sort of an adult video game. They will a biopsy and some more cultures and then the decisions will be made.

They are looking for GVHD.  The girls have to be slapped down a bit.

Let me look into my Crystal Ball:  More prednisone, more beclamethosone.  More puffy hurty cheeks, more sleepless nights, more.......

When they said that this was a year, they meant it.  I am thinking we get to go home on Thursday. 

On the fun and cool side.  I am getting to educate lots of people about a long forgotten place, high on the hill, a place of ghosties and crazies and long pregnant silences... WOOOOOO,. Wooooooo, Woooooo. We have been watching endless BB episodes of Dark Shadows.  (Before Barnabas)  Sort of fun. 

We are also going to put together a visual for Chef Walter.  Maybe he can learn what a sandwich is if we send him a picture or make it a game. The game might be:  Find the Real Food.

Walter claims to be a member and supporter of the local food movement.  I love fruit that is grown in China, shipped to Thailand to be packed and then shipped to Seattle. 

How cool is that. We will play, find the real food with some fruit tomorrow. 

Some times Life Takes you by surprise even when you should know better

I made pasta sauce.  She ate a tiny bit.  Two hours later we were at Seattle Children's and she will be there a few days.   Was my food so bad that she wanted to eat Chef Walter's?

Things have been so good. So stable. Then, a perfect storm.  She had been tapering off her medicines given to address her GVHD (Graft vs. Host).  She took her last dose of Prednisone and in 12 hours she was in sever pain and in tears.

Two liters of fluid a dose of pain meds, lots of blood draws, an Xray.  I had hoped since she was feeling better we would be going home. Silly me.  Silly Silly me.  1:30 am we moved into a room on the Hem/Onc floor.  I was so shocked.  I asked if it was okay for me to go home and figure out what to do with the dogs and she went to sleep.

So here we are.  Is it GVHD. Did the girls get too rambunctious and decide to act up now that all the drugs keeping them at bay over that last few months?  Is it a bad case of stomach flu or a scary infection?  Is it my cooking?  We shall culture and scan and scope until they "eliminate" possible causes.

It should not be a shock.  She had been home since March 20th.  What was I thinking?.  Did I really think my child would go through this without additional admissions.  You bet I did.  I was sure we were done with the hospital stuff.  I had decided that this was the week.  The week we planned a trip to Eugene.  The week I concentrated on finding a new job.  The week I found a publisher for my ever growing mass of written work.  This was the week.....

This IS the week we do the hospital again.  It is a bit less intense.  She is sleeping, being off prednisone, even for a few days lets her sleep.  I am spending my time watching endless episode of Dark Shadows and doing needlepoint.  I am sleeping at home.  It is all good.

Okay, I can do that.  I can load the room with stuff that makes it more like home.  I can be witty and challenging for the docs.  I can........  I just don't want to do so. 

Spreading our Wings, a bit.

Sort of Scary.  Sort of Bold.  Sort of........  This is such a weird place to be.  We just hopped in the car and drove beyond 30 minutes.  We did not make it to Flower World because as we headed north the dark foreboding rain clouds headed south and then they let loose of their cargo.  You get the picture.

We ended up at Maltby Cafe.  The home the 5 pound cinnamon roll.  (We brought most of it home.) Then, just because, we started down a road to an unknown place.  Remember we were being bold. 

In case you are wondering, Maltby road leads to the Bothell-Woodenville road.  Turn left and drive through a million and one strip malls and arrive in Bothell.  Turn Right and head back to town.  Okay, not much of an adventure but we did find a really big transfer station. 

It was just nice not to be too worried about being so far away.  She has about 60% of her immune system back.  Some T-Cells.  Some other assorted white blood cells but there are a million of things that she had to experience again in order to really be able to go forth, explore and go back to College. 

 ALL of her Baby Shots. All of them.  Oh well she does not remember the first ones.  Scarred,  my child is going to be forever scarred.  Or maybe I will be the one that needs therapy.  I remember commenting to my doctor that I thought the reason kids were not fully vaccinated had to do with how hard it was to watch your kids go through the process.  

 Happy 1st Birthday Lily.

Little did I know vaccinations were the least of what I would watch her do. 

So, we will continue.  Keep alert.  Keep an eye out for GVH as some of her medicines are withdrawn, Keep praying and recognize each day is one closer to the real end of this process, January 24, 2013.

Twilight Ballard

I feel like I am in one of those movies.  Where things look the same but the really smart heroine knows that something is wrong.  Something has been moved or changed or things are not as they seem. 

It looks like my bed. It looks like my daughter. If feel like my dogs when we walk.  I sort of recognize the kitchen and the freezer.  I kind of remember why I froze the tofu.  (Can you even freeze Tofu.)  I remember that flower bed.  I remember that dog and that person walking her.  We have been home almost two weeks and it is still not right.  I am still not settled in so many ways. 

This must be how someone feels after they wake from a long coma or get out of prison or recover from amnesia.  Familiar, yet different. 

While we were in the hospital home was the goal.  We are home and now what.  Pretty hard to see progress with the esoteric things in our lives like immune system building and weird bumps in the stomach. 

I guess I should just keep doing the familiar things.  Find my footing, get firmly planted again in "normal". 

It was fun at clinic today.  Try asking a Doc that does not know you about going to Hawaii in a couple of months.  They don't even know what to say......  Sort of fun.   I figured if they knew we wanted to go there we could maybe go to Whidby or Bainbridge or heck Mercer Island.   Never hurts to ask.

Meb is doing Laundry.  I am getting ready for a 6:45 am.... that means morning.... check in at Children's tomorrow.    Lily will be up.