Lust....? Really. End of first Month when you lust after normal!! Dante must have been a Repulbican.

Second Circle (Lust)

Gianciotto Discovers Paolo and Francesca by Jean Auguste Dominique Ingres

In the second circle of Hell are those overcome by lust. Dante condemns these "carnal malefactors"^[9] for letting their appetites sway their reason. They are the first ones to be truly punished in Hell. These souls are blown back and forth by the terrible winds of a violent storm, without rest. This symbolizes the power of lust to blow one about needlessly and aimlessly.


Lust.  I really think we have to re-thinking this.  Of all the things in the world, this is the second level. 

"Carnal Malefactors"  have to love those words.  How can you not.  But I am afraid part of this does apply.  Every parent in the world has felt the punishment, even if they didn't deserve it.

These souls are blown back and forth by the terrible winds of a violent storm, without rest.

Boy if that does not feel like our lives.  Some days there is just no relief.  And when you feel like you have escaped another gust comes again and batters you even worse. 

We have had one of those weeks.  It all resolved around food in one way or another.  

So ME is on several drugs that make her kidneys stupid.  She "wastes" magnesium.  So to fix that hole in the dike, she takes 1200 milligrams of the stuff and eats lots of popcorn and dark chocolate.  It also makes her very cautious about the amount of fiber she eats because it causes some very undesirable side-effects.  I am buying white bread for the first time since 1883.

She is going to be put on Rat Poison.  Warforin.  Lovely drug but it will let her body heal from all the shots and gigantic, continent size bruises.  No shots, that is good.  BUT the levels have to be steady.  Rat Poison inhibits Vitamin K which is made in your stomach.  So there are things you cann't eat like spinach and all other green leafy veggies.  Cranberry juice, avocado and soy lots of other things.  She can eat all those things but has to do so in the same amounts each day.  If she gets sick or more active that changes things.  She has to have a finger poke every three day until the levels are figured. 

Then one of her drugs has made her triglycerides go way way, sludge for blood, high.  So what should she eat to help with that:  Fruits Veggies, lots of greens, low carb, non-fat dairy.... Well lets see all the stuff you can eat here are eliminated by Rat Poison and Magnesium....

It is pretty much Brown Rice and Salmon, three leaves of spinach and some green tea, in regular measured amounts.

"What about pizza?"  Can you make it yourself with low fat ham and some non-fat cheese?
Oh, did I mention, low carb....

It was too much tormenting windy gales for one day.  She just went to bed and cried. 

"Mom, I do everything right.  I take my meds, I follow all, well most of the rules and now this.  I am afraid to eat anything!"

Pancakes, no butter, no bacon for breakfast.  I won't talk about dinner.

She feels under attack.  We will spend a bit of time working on finding out what works...  French bread has no fiber.  Salmon is wonderful.  A bit of white rice won't kill her. 

On a better note, no asteroid hit the earth.  That would have ruined our day.

Rebecca

Day 48ish.
Sister gave her bone marrow.  Mostly matched but not all the way. 7 months off treatment before relapse.  Trying to get her life back. Trying to be a normal kid.

She has been in ICU for more then a month.  Kidneys, Dialysis,seizures, weird blood pressures, spleen unhappy, sepsis.  Lots of scary things.

I spent some time with her mom when I was in New York. We chat on occasion and I try to answer the questions.  There are a million questions.  When did this happen to Mary-Elizabeth? How did you get over this problem? When did this start to happen for her?  How did you handle this....?  Will she ever get her life back?  Boy if that is not THE question.

It is so hard.  It hard on the kids, hard on the families.  It is just hard.  We all are looking for a way to handle the hardness.  One we we do it is to help other's but it adds a layer of difficulty with every connection.  You don't always want to share what you know and how you know it.  

We were down having Hector the Magnificent draw MEB's blood.  There was a mom and a little girl, 7ish, sitting with her American Girl Doll named Lily. Lily was all garbed up and pasted up ready for her EKG and a blood draw.  The little girl was explaining to Mary-Elizabeth how she was brave and didn't have things done to her that hurt very much any more.  The mom was so happy that they were celebrating 4 years off treatment.  I looked at Mary-E and she looked at me and then returned to testing.

Later I complimented her on how she had not said anything.  We both knew there was no reason in the world to share our story. 

When you are sharing, you always hold back the scary observation.  The bit of wisdom you have garnered along the way.  The words you never want to hear spoken outloud.

Sometimes it is important to just listen, and pray. Today after I heard Rebbecca was having some Liver issues, I talked to the third grade I was teaching.  I explained a bit about Leukemia and touched on Bone Marrow transplants.  I told them about Rebbecca and told them I had promised her mom they would say an extra prayer for her.  I had told Rebecca's mom 3rd graders prayers have great power. 

I think they do.  I think the little ones have such strength and purity of belief.  

We said a prayer for Rebbecca at the end class and Grace said she would mention her tomorrow.  Grace is in charge of prayer this week and she wrote it down.   

Special Powers........

We Asked for it and WE Got it..... Now What?

Endless complaints have been flowing from this house about the prednison.  Endless.  Did I mention we complained a whole bunch.

Well today we saw Dr. Paul (I eat Kangaroo) Carpenter.  Two of the steroids have exited, as per tapers connived by lots of people, and things look great. So....

She begins to taper her Prednison tomorrow.  Down 2.5 milligrams a week. 

Do you hear cheers and screams of joy.  Yes and no.  Part of what you hear is the concern this won't be a good thing.  This taper is very different then the last one so we are going to think only good thoughts and hope for no return of GVH. 

Sometimes it takes a whole lot of bravery to take the journey to the place you want to go.
As much as this feels good, it is also scary.

Time will tell. 22.5 for the rest of the week.  Yeah....

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.

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.

GVH WARs Part II

WE went to see Dr. Paul Carpenter again at the SCCA. He is the doc from Australia that eats kangaroo. (yet again another story for another day)  He was our attending when she first started to have Gut GVH.  He put her on a course of steroids and the like.  As we so politely pointed out yesterday:  You did not fix her!

I explained that I really did not want to return to Children’s for another round of Chef Walter food and days of Dark Shadows watching. 

So here is the plan:  She now is being tapered in a very different way.  She is going to be taking Pred on one day, HydroCortoson on the next day. She is going to taper off the icky corn oil stuff and the noisy pink pills and then try to get off the Pred.  Or something like that. 

It appears to be pretty endless but then it was pointed out to me we signed on for a year. Not six months.  Not 9 months but for a year.  I was questioned about what I was doing and whether or not I was home being care taker.  I did not mention I had abandoned my child for 6 days.

So we wait, we see, we wait some more.

It made me so so glad to know the Dr. Paul does have a beautiful Crystal ball that he consults on a fairly regular basis.  He did say it appears to be cloudy most of the time. 

We can wait, half way there. 

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.  

LIfe is better with Grandma Mary here.....

She is still in pain and not able to come home.  We will try again.  The plan is to feed her a McGriddle and see if it makes her pain return.

Hoping it works.

Grandma is here.  She walked into the hospital room.  It was so good to see her.  She hopped on the train and came to "keep me busy so as not to bother Mary-Elizabeth."

Mom is doing laundry.

More instructions for Chef Walter. This is not food.

Just Ickie News.

We watched hours and hours of Dark Shadows.  (Vicky Winters has been saved, Matthew is dead, Laura Collins is back and she is a Phoenix and stares for hours into the fire. Burke loves Laura and Vicky but is dating Caroline.  No one knows what is in the basement room.  Sam Evan's connection to the manslaugter charge is not clear but we are only on episode 144.)

Mary-Elizabeth's GVH is not gone.  She has to take a bunch of the steroids again and just cried yesterday.  Her line has to stay in, her appointments are more frequent, she has to stay on her immunosupresents longer and she is so so bummed.  I am bummed.  We are both just sick and tried of this right now. 

When this sort of thing happens, we both just crawl into a hole and re-group and re-tool and re-watch 1225 episodes of a long lots soap opera. 

It is just no fair.  Things were acting like life was good and returning to some sort of normal.  I was going to really really figure out the work thing, take care of my clients that are loosing their Mikkelborg home.  Start back to water aerobics.  I was cooking, and sorting and even going to keep up the laundry after Anne was so nice to do it ALL.

So that is all out the window.  My mind can only do so much when it is worried and anxious and afraid and sad and Oh my god I sound like a bad television pharmaceutical commercial. 

So what to do.....  Today I will hopefully be bringing Meb home and we will start the process again.  A little big less sure of good results and tapers.  Sometimes it is just what it is.  Thinking good thoughts and being positive and happy and all that crap does not work.  At least not today.  We are pretty good at making the best of things and we will get back to that place.  

This episode has just done the job of reminding us that it is a YEAR long program. She can not travel.  She can not be more than an hour from the hospital. She can not, she can not, she must, she has to....   

Okay. Enough pouting.  I will work on making my garden an even more special place then before.  My new, yet to be identified humming bird will be identified.  I will find more than two varieties of Saliva.  I will do some more purging.  I will do my laundry.  I will organize my pictures, I will.........

Oh, here was last night's dinner.  Chef Walter gets awards for this food. 

 Thank God for Wednesday Austin Pizza Night. 

It was just one of those days...

Started out great.  Had to wait a long time for her endoscopy.  Evidently the Gastro Team is in Japan learning the Toyota Method and the three fellows are all off for a month so our doc was swamped.  The Toyota Method teaches ways to be efficient.  I know a really big way to be efficient.  Be at work.....

So because her stomach does not always digest her food right and empty Michael Collins (Australian anesthesiologist who eats Kangaroo) had to entibate her and it really did a number on her throat.  She was pretty sore and pretty freaked out and pretty unhappy last night.  She was awake when they took it out.

No answers, some noise about somethings I did not want to hear about but no one had any answers because they were backed up and there was no report. 

I finally came home about 10 last night.  She is tired, I am tired and we are tired. 

It will be fine. She will be fine.  I will be fine. 

Fine is not always fine.

I am posting pictures of food for Walter to see.  It does not come in packages.

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. 

Less than 36 hours and it seems like forever.

and it is not that bad.  So she is sleeping.  I am thinking about all the bad things I am going to say about the white bread toasted American Cheese Sandwich she received last night.  I love seeing everyone. Talking to everyone. Trying not to think about what is going to happen.  


There are going to be lots and lots of tests and scans and cultures and scoping but it will only affirm what we all know.  She has to go back on to the Anti GVHD stuff again and most likely longer.  It just really really sucks.


I am having a hard time getting on top of it.  I did make sure the plants were watered. The birds fed. The milk box emptied.  The dishwasher started.  The dead food out of the fridge. The sorts of things that keep the day running.  (I did have to call my neighbor to make sure the dead food made it to yard waste.)  


While I am an expert at handling and managing and maneuvering and manipulating this place.  It takes so much out of me.  I feel the same way I did the day we left after 2.5 months.  How is that possible. 


I have to mix it up.  I am going to only say nice things about Chef Walter. 


All the containers the food is served in are compostable.


We hope the salad was washed.

The not quite toasted American Cheese was a pretty  color.  White bread has no nutrition and I am so sure that is what should be fed to children with cancer. 


See I can be nice. 

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.

Day 100 is almost here....

 IF THE BRIDGE GOES UP IT SHOULD BE FOR A BIG REASON.

The trees have lost their leaves, spent a winter bare and have now returned to their full compliment of foliage.  So much looks the same.  It just does not feel the same. 

I so remember when this happened last time, when we were headed to maintenance from intense treatment. As much as I hated the frenetic pace of active treatment, there is a lot of fear associated with not having frequent blood draws and scans and .......... 

We are a long ways from being cut loose from blood draws and constant monitering but there is still a lot of anxiety.  Her bone marrow was clear but then

 I HAVE HEARD THAT BEFORE.

Her counts are good. 

BUT THE PLATELETS ARE DROPPING

She seems to be doing well and no really new GvH.
BUT IT CAN AND WILL POP UP ANY WHERE, ANY TIME. 

Here is the list of things to watch for:  CATARACTS, LYMPHOMA, LUNG, LIVER......

So what do we do.  We trust in the passage of time.  The advancement of medical technology.  The power of prayer and chocolate.  We take each day as it comes and try to not panic too much too often (chocolate).  We look for new ways to rebuild a life and slowly mearge back into traffic. 

The things that just happen.

We sort of missed winter.  As I look out the window I see everything coming to life.  It is very calming to see what happens despite the fact we are not actively involved.

No wonder our ancestors were so in love with Spring.  But when I think about it, they were cognisant and aware of each of the seasons.  They thought they had to do some thing to make the seasons change. 

We thing we are helping Mary-E rebuild her immune system.  In reality we are just waiting for it to happen "naturally" Most of everything we are doing is to keep from happening:  infections from fungus and bacteria and creepy crawly stuff and viruses.  The rest is just happening. 

The body is just doing most of it.  The cells went into the bone by themselves. Once they arrived, they started to become working bone marrow.  They are now branching off and making the different kinds of cells that make up a fully developed grown up real person immune system.  We are just trying to give her body time to grow the new system.

After the world's longest eye exam, I asked the doctor (sort of reminded me of the absent- minded professor) why the skin and eyes were so susceptible to GVHD.  (Graft vs. Host Disease).  He was the first person to explain to me the body is constantly under attach by the environment.  The skin, the eyes, the gut.   So as the new cells wake up they attack these areas first.

So we wait.  We watch the leaves emerge, the tulips grow and gain color, a few weeds come and the birds build their new homes. 

Taking a moment and enjoying the spring, happy to know that we don't have to sacrifice any animals to make it happen.