Trying to Cope

So while I let my mind expand and adjust to new issues with Mary-Elizabeth, hard life long never changing issues, I think and analyze and take in new knowledge and finish old quilts and ponder and sort of stew. I explore the world in a way I have not done before.

So yesterday I watched a movie called "Helvetica".  Boy do I know a lot about fonts. This is Helvetica and the is Not. I found out I am a serif person.  I like the little do hickeys on the letters.  More the better.

I have become the expert in splitting hairs and defining things.  Good Cancer from bad cancer, good side effect from bad side effect, reaching a deeper understanding of a distinction with out difference. 

So Marriage:  big on the ballot.  Lots of ads, lots of deeply religious people feel this is the and attack on God.  I can understand that but marriage in this country is such a mishmash.  You can get married on top of manhole cover by a homeless person at midnight, provided he has a licence from someplace that says he is a minister.  You can have the world's biggest wedding in the biggest church with all the incense and music. 

Neither will work if you don't fill out the Civil license and mail it in and do it right.  If you don't follow the "legal rules". The government won't recognize your marriage and the civil part of it will not be valid.  You have to jump through hoops but if you don't sign on the dotted line and register and pay the county the money- so sad too bad you are not legally married.

No right to inherit, no right to sue for wrongful death, no step up in basis in your joint home, no right to make funeral arrangements no pension or social security benefits.  Okay, sort of morbid here. 

No one is asking that every church, every, mosque, every temple marry people.  We are just asking that everyone be allowed to go to the court house, buy a license, pay the money, sign the paper.  How hard can that be?

Tomorrow:  The similarities in Christianity, Islam and Judaism and why I should be allowed to go to Mecca and touch the Kaaba.

BTW.  Meb and a bunch of girls are at the Space Needle with the wives and girlfriends of the Seahawks having a girl's day.  It's not all bad.

Rain is Good. Lots of Rain is bad.

Big rain, big wind, big waves, big snow.  Sandy is showing herself to be a big problem. 

Manhattan is 33 feet about sea level.  They seem to have been pounded twice in two years.  Maybe there is a reason the real estate was so cheap.  I just did not realize how much flooding there was in the streets, the subway, everywhere.

There are people out in the streets, there are cars driving through puddles, there are bodegas selling coffee.  These are just crazy people.

This picture says it best.  Boy would this be a surprise.

Some wise person told me

God answers all prayers.  Sometimes the answer is No.

We did not receive any good answers today.  Still Chronic Kidney Disease (CKD).  No going back.  Only not moving forward.

Well, hell we are great at doing that.  We know how to stay put for a long long time and we know how to wait.  We don't like it very much but we know how to do it.

Who could have known? Who would have figured out "Your Child has Leukemia" was a better diagnosis than, CKD...  At least with Leukemia they hand you a plan and you head out to conquer that mountain.  Your life goes to hell but then it all settles down. 

This comes with vague general comments like, don't eat processed food, avoid salt, and water and protein and.........  we will have to see how it goes and....

So we left the hospital today, had lunch and went to Paint the Town.  Painting pottery seemed like the only thing we could do.  Nothing more nothing less.  So we sat quietly and did three colors and Mary-Elizabeth's was perfect.  We watched the bored mom's and nanny's trying to explain how the colors worked.   Some finally let the eyes and hands of 4 years do their magic.  Other's "though it best to go home for while and let it dry".  One small child decided her grandma needed a few painting lessons. 

We both are working our way from anger and disappointment and denial to some sort of way to cope.  Heaven knows we have done lots of coping.  I just don't know what else I can do.

So, I will be supportive of families dealing with "just leukemia" as  they start the journey.  I will hug the mom of a child who also received bad news.  I will mourn the loss of another child that relapsed the same time Mary-Elizabeth did and say an extra prayer. 

Okay, she is going to be a cancer survivor and she will keep herself healthy and take care of those kidneys of hers.  It is just what has to happen.  No amount of whining or cajoling is going to make this diagnosis different.   No that I am not going to keep on trying.

I will carry on and try and do something positive with my life. 

Headed to the Hospital for a big appointment

Hoping for some good news, prepared for bad.  It always helps if you try to make stuff better so maybe something positive will come from these appointments today. 

I was reminded of this post today by another family.  We are waiting.


http://mary-elizabethsbump.blogspot.com/search?q=godot

Long hard Treks..

Tracy Hentz and I had a chat today.  She is our favorite former fellow and great friend.  She is back in New York right now with a million dogs and cats and her family.  Her heart is as big as her great brain.

She called to talk about Kidneys.  She said they are the black box of the body.  No one really understands the but Dr. Hignorianiepqulire is the best. We saw the best, we received bad news but not as bad as it feels. Things will be okay.

So I love that answer. Several of our secret team, don't ask, it is a secret, have said that they have seen people improve.  I like that answer.  I was told this is sort one of those things that creates worries and concern and can be problematic but we have been on this endless trek and will continue and eventually make it to the end.

I am feeling like this 40 year thing is a real drag but then we aren't in the desert.

And The New York Times endorsed Obama.

Karma is not my friend or why Newt is Calling

I always blame things on a former life.  I think Karma is biting me  on the butt for this life. 

Years ago a long time friend from junior high, Brad Lancaster was a real Right Wing Republican.  I am not sure where he stands on politics but I don't know how he could have traveled any further to the right then he was then.  Anyway, in the spirit of being fair and balanced, I gave him a membership to the ACLU.  That must have been a good thing because he left Paint Contracting to be a lawyer.

So the ACLU is sort of like Martha Stewart.  They sell their mailing lists to EVERYONE.  Brad is probably still receiving helpful information from the Left wing.

So yesterday, I received a call from Newt's wife.  She kindly explained she and Newt made a movie about God in America.  I could have ordered the box set. 

Oh, dear.  My first reaction was horror.  My second reaction is to seek and kill.  Given the week we have had.  Stay out of my way.

Oh, and then... The housekeepers put flannel sheets on my bed.  I am the only person in the universe that hates flannel sheets.

I am off the light some candles and sacrifice a lamb and sit under a tree and meditate and send money to some television preacher and go on a Mission for the Mormon Church.

Balance

There is always someone trying to walk on a wire across some big open space.  Grand Canyon, the quad at U of W ( I go there you know), or just between a building or two.

We ooh and awww and we are amazed all holding our breath lest they plummet to their death.  We are so impressed with their strength and determination and their ability to concentrate so so much that they don't fall.  They have to breathe so we hold our breath for them in support.

We Cancer World people live on that wire and we hold our breath all the time.  We try so so hard to make it across to the other side. 

"Your child has cancer.  Here is the plan.  You have two years and 14 days to suffer."  They mention secondary cancers and other such stuff but you focus on "getting to the other side."  We mostly get to the other side.

Remember the movie Holes, well after you live on the wire for a what seems like a million years, you find the "other side"  is not inviting.

There are Holes, and dangerous animals and scary twists and turns.  There is no way to prepare for anything but as Paul Schliep put it.... Surprises.

Pick an organ, any organ. Cancer treatment can effect it... If not now, in the future.  It took 5 years for Mary-Elizabeth's thyroid to die.  Her kidney's are not so forgiving this time.  Total Body Radiation, pages of meds, months of steroids and well...... 

Kidney's are sick.  They are tired of filtering and doing their job.  They are going to have hissy fits and not do their job very well.  They don't regenerate like their neighbor the liver.  My brain is not big enough to wrap around this issue. 

 I do know the answer is not a Kidney "transplant". OMG.  Everyone this is not television medicine.  Transplants are the last resort.  They are the worst thing that can happen to someone.  Needing a transplant is like having a tiny bottle of air and having to make it until next Tuesday for the Russian capsule to bring some more!   Now, not that I am not grateful for the fact they are even available but this is a terrible experience.  It is not Jump out of the twin towers or die in the flames bad, but it is close.  She had to jump and hope they built the net in time. 

I am hoping we make it across the abyss.

Hearing Words, now Seeking understanding

Stage 3 Kidney disease......

Kidneys are not like livers, they don't heal.  They can be stabilized and encouraged and protected from further damage but......

So that is the news.  I don't have any other answers other than we are going for ramman tonight.  Doing some research and freaking out a little bit.

I think I am going to go watch some South Park or some more sushi movies....  I just can't think about it right now.  I makes me sad.

Worry won't go back in the box.

Tomorrow in the morning, we go to the SCCA.  We meet with the Goddess of Kidney Function.  I am sure she thinks she does other stuff but she is to impart to us the answers to all of our questions:

1. How big is a kidney?
2. Why do they grow?
3. What makes them grow?
4. Should we worry about them growing?
5. Do they shrink?
6. Is that a good thing or a bad thing?
7. Why are her numbers bad?
8. How do we make them better?
9. When will she be better?
10. How much should I worry?

She will think me odd but it won't be the first time.  My worry is a problem.

I sort of put my worry and concern in a little box.  I take it out on occasion and look at it and roll it around in my hand.  I put it close to my heart and take it's temperature.  I talk to it quietly and then try and stuff it back into the box.  One never wants Worry to be mad.  We all know that all hell will break loose. 

Worry won't go back in the box today. I will take it to school and it will keep me up for part of the night.  It will wake me early in the morning and then we will go face it.

Seattle Children's and other matters.

Seattle Children's is acting like an Adult Child raised by an alcoholic.  They keep secrets, they walk on eggshells, they are fearful of what "others" will say about them.  They don't have the ability or the hutzba to just do something. 

From all the reading I have done, they are wedded to the Continuous Improvement Process or the Toyota Method.  It is a great industrial model where institutions work to simplify, streamline and organize their lives.  A place for everything and everything in it's place.  Their are a million places at Children's and I can say they are doing a great job organizing stuff. 

My favorite part of the process would be the little blue tape shapes on flat surfaces and the label  "Kleenex".  I sort of felt like I was in pre-school and we were working on our words.  Say after me children "Kleenex" 

I think CPI has held the kitchen back decades.  Part of the CPI process requires strict and continuous uniformity.  I think that works great for car making or surgery or even cleaning but it just limits the heck out of the kitchen and dietary.  For example:  What if the kids love and thrive on satsumas? You know those great little round yummy bits of goodness found in the stores only this time of year?  Well they would not be allowed to be added to the kid's choices because they are not  something that could be rotated through every 8th day because of limited supply during the summer.

CPI makes it so much easier to rely on pre-packaged frozen, canned, dried and processed foods you have to use in desolate part of the country.  No one has had the smarts or wisdom or for thought to adapt the process to the modern, health conscious consumer. 
 Where should the best examples of healthy food be found? At Seattle Children's hospital.  Fine they have stopped service huge soda's for 1.00.  Fine they are not deep frying the food from the kitchen.  They are re-heating already processed food.  Fine they have removed the two portion sized cookies from the cashier's areas.  There are no real changes and according to their new President Lisa Brandeburg, none are coming for "several years".  I am sure if those in charge of these matters had to eat their own cooking, things would change.  Even Chef Walter, I have won a million and one awards,Bronowitz does not eat his own food. 

The fat filled cheese sticks and coated in some sort of crust green beans are still there.  We live in the State of Washington.  If you ask for apples on your tray, they bring you something in a package, covered in "preservatives" that are brown and disgusting.  Just for every one's information there are a million great kinds of crunchy, tasty, local, fresh apples this time of year.  Show some leadership and serve them.

Which would you like to eat:

Experimenting in New Worlds.

The State of Washington was kind enough to give me a life time substituting certificate.  This is not the first time I have taken that certificate and inflicted my long-ago acquired teaching skills on some children.

I have never done more than visit a Kindergarten class.  I figured this time of year would be fine.  New kids, just learning the ropes.  5 years old.  I could handle them.

I pretty much did.  23 kids.  In various stages of uniform dress.  They looked at me suspiciously and I eyed them.  Some smiled, some retreated in terror and some just looked me in the eye to let me know I was just a visitor.

The hardest part of a day was not when there was no recess (rain) and the new computers crashed  but bathroom time. They are marched to the bathroom no less then 4 times a day.  It was not until the 4th trip that anyone mentioned not everyone had to "go" but everyone had to wash their hands, with soap.  Bathroom time, is play time inside of a room that echos.... 

 The class came equipped with lots of projects and an aide. 

I think I scared one child for life and I helped darling child.  While reading Madeline, (a 'line' re-enforcing book) I tried to explain about the appendix and how it was removed.  Clearly I should have followed the script.  Silly me asked if the children knew what it was.  Everyone raised their hand to say "No".  Trying to keep it simple I told them it was a small thing in their body that sometimes became infected and had to be taken out.  I mentioned it was about the size of a thumb and they cut it off.   One boy later asked, with great concern "what happens after they cut your thumb off?"  We moved on.....

Then there was sweet little girl.  When asked to draw the faces of the people in their "immediate" family, the aide defined it as only the people that lived in their houses.   Several children were told  "only the people in your home overnight" She turned to me and explained in an earnest way.  "My daddy does not live with us because he was never married to my mommy.  I have three brother and they have really short curly hair so this is how I drew them.  My mommy has lots more braided hair then I do, so I made it very long.  I don't think she has red lips.  My brothers don't have red lips.  How do people get red lips?  I want my daddy to be in my family so I drew him, is that okay?"  I assured her it was just fine, and of course he was part of her family and then I put on lipstick and told her that was how people made their lip's red. She will not need the same amount of therapy as the little boy who is worried about the safty of his thumbs.

A day with healthy, young, engaged kids is good for every one's soul.  Of course I came home ready to be a Kindergarten teacher but I will have to do that in my next life.  

Back to my real life.  Liver function down, Kidney function creeping back up, Face with bad spots of GVH,  an appointment with a kidney doctor on Thursday.

It is fun to visit other worlds.

Better Food Please at Seattle Children's

I feel like a 4 year old in a room of adults.  They are talking and drinking and discussing big heavy important topics and I can not get their attention. The House is on Fire.

They pretend to listen when I interrupt but the house is burning.  First I ask nicely. Then I get a bit frantic and then I scream.  They still just go on eating and drinking and ignoring me.

I have always had this issue.  Some answers are so clear to me.  When I was a family lawyer I could see the solution but soon learned it takes some people longer to have clarity. I had a case once where I made a suggestion during mediation as to what the best solution might be.  When the case settled, I withdrew.  The old "hitting your head against the wall" thing.

The case went to trial and the judge did exactly, down to the minute, what I had suggested.  I some times see to the end and don't understand it is necessary to "Show your work".

So for more than a year I have been screaming at the hospital.  I had a friend suggest they just don't take me seriously because they think I am kidding.  How could a mom with a child going through a transplant thing Food is important? 

I have never been a tree person, but rather a forest person.  How can the food they feed the kids not be important?

So as I sit here today, again at the end of my 10 cup pot of espresso, I will try again.  I know there is a full floor of exhausted parents that have to deal with side effects and new meds and bad news about their children's.  They have left jobs and families and dogs and everything they love and are on the SCCA floor fighting for one more day for their child.  They don't want to go over to the Met Market and spend $60.00 or even $6.00 for something to feed their child. 

I am not done.  In fact the further out from transplant we get, the more real energy I have.
http://www.facebook.com/BetterFoodPleaseAtSeattleChildrensHospital

Clouds....

The sun was coming up this morning and Tucker decided it was time to greet the day.  He has to run into the back garden, savagely shake the hose and then search for officious interlopers.  It is his style.

I stumble into the kitchen prepare my 10 cup espresso maker and put it on the stove and then fix the dog's breakfast of kibble, carrots, raw meat.  I putter around the  kitchen and then I sit down to see what has happened over the preceding night.  Who "liked" and who posted and pretty much sit here until my coffee kicks in.

This is Seattle and we have rain, but we also have lots of sunshine moments.  This morning was one of them.  I looked out my window and I could see lots of blue sky and really high white, happy clouds, the ones that make you smile.  While I was appreciating the blue sky moment a giant black, rain filled cloud obscured the happy little clouds.  But.... what I realized is that it was moving very fast.  It sped by and then the high pretty happy little clouds and blue sky re-appeared.

Need I say more about how this a metaphore about life in Cancer World yada yada yada...

Just hoping for really speedy black clouds.

Intimidation and Bullying of Staff at Seattle Children's Hospital

Seattle Children's Hospital is the best place in the world.  It cures cancer and makes little tiny babies well and it treats diseases no one has every heard of before.  They take care of everyone and anyone.  The staff, down to light bulb cart guy, are friendly, concerned and wonderful to the families.  The doctors, well some are "doctors" but the majority are amazing.  Watching the interaction between a surgeon and your child will bring tears to your eyes.  Everyone really really cares. It is a great place.

UNLESS YOU CROSS THEM...

During the last year we have had to live there while Mary-Elizabeth either receives treatment or recovers from treatment.  I was really trying to see if there could be some positive changes made to the food served.  I became weary and financially stretched having to leave the hospital each and every day to buy her food that she would eat.   ( I am not alone.)

I complained, I commented, I asked the nursing staff and they all encouraged me to continue to campaign. 

What I found strange were the statements like:
"Who is going to see this?" "Please don't use my name, I don't want to lose my job."  " It is great you are doing this, they don't listen to us." 

I began to realize there was some bullying by upper management and some intimidation going on with the staff.  They are frightened.   Really frightened.  And they have reason to be. 

Some one that works there provided me some information that she found on the intranet.  She forwarded it to me and I put here and on the Better Food Please at Seattle Children's hospital Facebook page. 

She was called in on the carpet and fears for her job.  I was called and asked to take it down because it was not meant to be seen by anyone "outside" of the 6000 people that work at the hospital.  I did remind the person that called me about Federal, State and City laws that protect employees in such cases.  We also had a discussion about the First Amendment. 


I also think it odd to believe anything on an Intranet would be private.  But those are discussion for another day and time. 

Evidently there is a verified history of bullying and intimidation at the hospital.

Children's has a culture of intimidation, the document said, and within that culture, doctors expect nurses to do their work, including sometimes administering medications, according to a KOMO source.

The report also said doctors and nurses with seniority intimidate and bully others


http://www.komonews.com/news/problemsolvers/114687319.html

Well They are not going to intimidate or bully me.  I also am pleased to know they read what I have to say.  Maybe someday they will listen. 

Hey Mark call me anytime. It would be better for you to hire....me.  I am a great advocate.

So, I am back in my Go With the Flow Mode.....

A week or so ago, I took a phone call from someone at the SCCA.  On the other end of the phone was a lovely, kind, smart, caring doctor asking me some questions.

To the normal happy go luck parent they would have been simple questions.  They would have been answered and then dismissed as nothing to worry about. We will do a couple of tests and see how it goes.

I am like the hyper alert crazy person when it comes to my daughter.  I have a 12th sense when a call comes and I analyze everything to the nth degree.  I hear what they say, imagine what they don't say and I go to the deepest, darkest place in the Universe.    It is my blood and in by very being. 

I have no choice.  I was born on the Salmon River, the famous River of No Return.  My  river looks like this.  Not a nice straight or normal river.  It is full of twists and turns and rapids and hidden rocks.  Remember once you go down this river, you never go back. 

When I receive one of those calls, I feel like this.  

 

I tell myself it will be all right, I think about what could happen, I call my family, my friends and share the panic.  I don't want to be one of those crazy wolf crying persons but  we all have to remember where we are in this journey.  We are not done with this river, yet.

 

So more appointments, some things to do and drop off, more blood to be let.  School is a good distraction.  I am picking up the language and looking for the secret handshake.  I think I have to do an MBA but that needs to wait until next month.

 

Floating Along.

 

 

 

 

 

 

Think of this as a Presidential Debate Answer

We are going to see the Kidney Doctor on the 25th of October.  Between now and then the following information will be gathered:

1. Blood Test for BK will be returned
2. New Creatine Tests will be run
3. Some Urine tests will be completed

Until then, because she has no pain or huge puffy feet and remains the right color we are just chunking along. 

Prednisone is going down. She continues to study and watch mindless television and walk the dogs.

I continue to go to school and try to figure out where I might fit into an organization.

Monday I am going to substitute in Kindergarten.... Should be fun.

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.

Progress on Mission Nutrician????? Shouldn't nutrician have always been the mission?

I was asked to take down this post.  I was told I should not have it.  I posted it because I thought it was a bit of insight into the way they think at the hospital.  It was written by an award winning Chef.  If you Google "Chef Walter Bronowitz" you will see lots and lots of things and many are awards. He has taught people how to cook. He is a "leader in his field."  He has been at Seattle Children's for more than 7 years.  He was promised a new kitchen and he has been pouting about not getting it for low these many years. So after much screaming, much pleading, this is the best they can do.  They can bake a fake cheese sandwich on high fructose wheat bread and want to be patted on the back.   

I took this down because I wanted to help someone.  I am putting this back up because I was at the hospital today and this is what was for lunch.   

So here is the missive from Chef Walter

BUILDING A BETTER GRILLED CHEESE SANDWICH


Pop quiz: When is a grilled cheese sandwich more than cheese melted between two pieces of bread?

Answer: When the person eating it is a child in the hospital.

At Seattle Children’s, the food we deliver is part of the care we deliver.

That’s why the Dietary Department is focused on getting more nutritious meals to patients. This spring, the cooks at Children’s introduced a dozen fresher, more nutritious items to patient menus (including a new, improved grilled cheese sandwich).

By next month, they’ll debut eight more.

Although the changes were in the works before the hospital’s Mission: Nutrition initiative launched last month, they have been swept into that widespread effort to bring healthier food choices to patients, staff, families and visitors, says Walter Bronowitz, Dietary manager and executive chef.

But building a better grilled cheese sandwich for patients isn’t as easy as it sounds. It means finding new products and, in some cases, new vendors. And, preparing nutritious entrees onsite (instead heating frozen foods) takes more space, time and thought.

While the hospital has grown around it, the kitchen – which prepares food for inpatient units, the café and catering – has been the same size since Children’s built its current campus in 1958.

When Building Hope opens in April, Walter’s crew will be challenged to do even more with the space it has. As they roll out their new menu items, the cooks and kitchen staff are very aware that they need solid processes to sustain the quality of their food as their workload grows.

That’s why the kitchen team is using Continuous Performance Improvement (CPI) principles to create and test drive the best systems for preparing and serving their new, more nutritious menu items.

Recipe for success
Here’s how CPI helped Walter, cook Heather Anderson and the Dietary team build a better grilled cheese sandwich.

Step one: more than bread and cheese
Since food is part of clinical care, there’s no improvising when it comes to feeding our patients. The cooks created a recipe for a more nutritious grilled cheese sandwich (baked, on whole wheat bread and two slices of tomato), along with standard processes to ensure every sandwich that leaves the kitchen is the same.
Step two: a place for everything and everything in its place
Walter’s team assigned space in their work area for ingredients they need on-hand for all their new recipes. Then they ran the numbers to determine just how much they needed. Now, they stock once a day instead of running to the storeroom or walk-in fridge to grab items whenever they run out. The result is a steadier work flow with much less waste – of food and of time.
Step three: batch it, time it, test it
Rather than making 90 grilled cheese sandwiches at once – and letting them sit while 90 meal trays are prepared – the cooks are making small batches so the grilled cheese sandwiches reach patients hotter and fresher. They used controlled trial-and-error – timing tray production and measuring sandwich temperature with each variation – to answer important questions about how small to make the batches.
Step four: check it and change it
After the new grilled cheese sandwiches hit the patient menu, the kitchen team kept close tabs for four or five weeks, re-testing, re-timing and adjusting their batch quantity until they found the right balance for maximum “yum.” They’ll revisit the process and tweak it regularly going forward.
Looking to the future
It doesn’t end with grilled cheese; the cooks and kitchen staff use the same process for every new item on the patient menu. Next up: French toast and Spanish rice.

“The thing about CPI work is that it requires some experimentation to learn what will work best,” notes Walter (pictured left). “We’re working through our new menu items one by one and letting each change settle into place to make sure it works before we go on to the next one.”

It’s a heavy investment of time and energy up-front for a long-term payoff: more nutritious meals for patients and a more efficient kitchen for staff.

Walter is already gearing up for the future patient kitchen – which is currently just a shell in the basement of Building Hope. Some day, that kitchen will be capable of preparing individual meals for patients – room service style.

“Once we open the new building and we’re serving the extra patients well from our existing kitchen, we’ll turn our attention to the CPI projects we’ll need to make the next kitchen work,” he says.


Comments: I have removed all the names.  It is pretty clear I am not the only one that is upset. 



Comment by:
I'll give you that there is some improvement happening in very small baby steps and I'll even give you that there are principles being applied to try and streamline the efficiency of the cafeteria. HOWEVER, the picture alone at the top is BEYOND shameful. It is appalling to me that we serve grilled cheese (which isn't even cheese, but rather a piece of trans-fat filled oil) on a piece of 'whole wheat bread' that is filled with high fructose corn syrup and say that we're making a better sandwich.
We should be embarrassed by the fact that we even 'brag' about this as an improvement and we should be ashamed that our cafeteria has consistently fallen to the bottom of the pile and has not been updated since 1958. Nutrition should be at the core of a message of health and clearly it is at the bottom for our cafeteria and management.
There are hospitals around the country and even in this city that are doing a hundred times better with the food they supply, supporting local farms and making their own food.
This article is embarrassing, shameful and sad. Hippocrates said, “Let food be thy medicine and medicine be thy food” - I'm not sure that we can even say we serve real food in our cafeteria.


 I too agree wAt least use real cheese. Also, adding tomatoes to the sandwich is not real practical. Vegetables are very important however I don't know many children who would eat tomatoes on a grilled cheese. Even children who would eat a variety of veggies probably would not go for that one. The fake cheese is quite ridiculous.



You just expressed the exact sentiments that we discuss on a daily basis as nurses. Especially on the SCCA unit, maintaining adequate nutrition in nauseated/anorexic patients is a CONSTANT battle. If the hospital provided food options that were actually edible, Children's would save money on tray fulls of wasted meals. More importantly, financially strapped and emotionally stressed families would not be forced to leave their child's side to then spend extra money to grocery shop. We are lucky enough to live in a city where there is access to an abundance of local and organic goods, yet Sound Cafe offers heated canned soup and salad fixings from a bag. If we truly "are what we eat", then what does that say to the youth who we offer scrambled eggs from a carton? I find it offensive that the processed, low nutrient food we serve is compared to the care we deliver. Healthcare is ever evolving and ethically challenging on many levels. What would be most ethical and socially responsible for our patients from a nutritional standpoint would be to think bigger than a "new" grilled cheese sandwich.


The food we serve the kids here is appaling. I am embarrassed to serve trays to families. And the food offered in the cafeteria is beyond gross. Horrednous that, with all the information in this day and age about whole foods, you are bragging about making a grilled cheese "healthier" by adding some tomatoes?
And I like what's next on your list of things to improve: french toast and Spanish rice! Can't we start with things like LOCAL, ORGANIC vegetables? A salad bar that is appealing with fresh lettuce (iceburg??? NO!) and tomoatoes that look like they have been sitting on the back of some truck for two years.
Let's give our families who are paying THOUSANDS a day some good food that is nurishing, healthy and delicious. Let's stock our Nurishment Rooms with good options- this "juice" we offer, the peanut butter, bread- ALL CONTAIN HIGH FRUCOSE CORN SYRUP!!
When I was hired 5 years ago, all the talk was about food improvement. Here we are and I have seen no positive changes. This picture of the "healthier grilled cheese" is gross and offensive. You all should be ashamed!!

 

Oh by the way, I am so pleased someone at Children's is reading my blog. Hey Mark, it was great to see you today.

 

No other news...

But we have given them the materials and images to see what the next step will be. 

The ultrasound was very on time and quick.  I made it to class, sporting my drowned rat look. 

My sister did ask if they are looking for Kidney GVH... Never heard of that but will ask the question tomorrow.  Don't like even knowing there is such a thing.

Off to bed, to sleep?  These days it is questionable.  Stole some carrots from a garden for the dogs.... so dark I really only snagged onions... Bad Sally.

No Kidney Transplant tomorrow.

Okay, maybe my imagination was a bit off the wall but then who would ever imagine having a child with leukemia twice? 

Back from the appointment and her creatinine is down, not normal but down.  Lots of tests are being done but results will take while. 

 The ultrasound is still on for this afternoon at 4:30 and then we should no more tonight.  They are looking for the following:

a. Evidence of a dissolved or current blood clot
b. Evidence of something like a kidney stone
c. Anything else that might be hanging around and not allowed.

The blood tests are going to look at her liver function and also see if there is any BK virus.  She had it in her bladder last time and it causes major major, horrible, terrible, bone chilling pain.  We were assured by Dr. Tracolomis that if it is in the kidneys there is no pain associated with it.

So we wait, we wonder and I quit saving for a Kidney Transplant. 

I wonder if this is what they will precribe after Monday's Doctor's Appointments?

Herbs like Siberian ginseng, dandelion and cinnamon are also effective in lowering creatinine levels. Drinking aloe vera juice also has many health benefits like controlling blood pressure and blood sugar levels and improving the function of the kidneys. Holy basil is also effective in strengthening the kidneys. You can take a teaspoon of basil juice and honey each and consume it every morning on an empty stomach for a few months.

Didn't really sleep.  Not really tired.  Just weary.  Made a list of my class work, doing the reading and working on a HR resume.

Organizing my wine, since the butler appears to have fallen down on the job.

Doing Laundry.

Walking the dogs.

Raking some leaves.

Charging my phone.

Harvesting the last of the tomatoes and drying them in the oven.

Father Tran is coming to work with Mary-Elizabeth tonight. 

Trying to stay unfocused on Tomorrow.

Everything is fine... Renal UltraSound on Monday.

Cancer is a Monday to Friday event.  If there is an emergency they can go into full throttle but everyone likes the "regular" folks.  So I bet that when the decision was made there was a discussion about whether to make the ultra sound happen on the week-end. 

Making it happen and having someone read it and really figure it out are two very important parts.  The real docs are around during the week so we will wait.

I will watch South Park, quilt a bit.  Make some complicated dish for dinner. Read all the back issues of the newspaper and get caught up.  I will put my new Obama for President magnet on my car and I will try not to devour the kitchen's contents. I will walk the dogs, watch the rain, go to church and light some candles and work on War and Peace.

I will call my mom tomorrow and let her know and she will tell me not to worry and then will hang up, call all my siblings and will make everyone worry.  We will all call each other and tell the other not to worry and then continue to worry.

We have been on this journey for such a long long time and every little, little, tiny thing just upsets the apple cart. 

Maybe I will re-organize my wine.  I have some from a Winery I don't remember visiting.  I bought some really good wine from there but I don't remember being there...... My credit card does...... Sometimes forgetting is a good thing.

The Worry Begins.......

BMT, Bone Marrow Transplant doctors are a skittish bunch.   A bad number one day (1.2) is okay. An explanation of lack of drinking makes the number acceptable.   A repeated bad number with lots of drinking (1.3) is not okay.  Two calls, two sets of appointments, that weird worried voice, the one that sets my nerves on edge... 

"She has to come in tomorrow and again on Monday......  for a full appointment. We will make room for her."

Sounds Innocent to normal folks.  It made me think about making sure we had a hospital bag packed.  

It is just scary.  In that deeply awful way that chills my soul.  I know the voice, I know the fear.  The kidneys are not happy. They are keeping some things and getting rid of others and because of everything they have been through even the smallest increase makes them worry.  If the doctor's are worried, then I am terrified.  

There is the secret floor at the hospital.  It is a place no one talks about.  No it is not the inpatient psych unit, or the pool or the hem/onc overflow unit, it is dialysis.  Oh please let us not go there.  

See, an increase from baseline sends me over the edge.  I will come back. I will focus on getting the house ready for the housekeepers.

I am a Morning Blogger.

Like lots of things, some times are better then others.  I have not really had a morning at home since last Friday.  Lots of Morning things have been happening.  Blood draws, trips to the airport, housekeeper Fridays.  The usual sort of thing.  I am finding I need the quiet, a good pot of coffee and a a moment to reflect.  Maybe my anxiety builds up and then must be put on the paper to release and forget it.  

I realize that last few months I have had endless amounts of quiet time.  It took me a long time to just get off the fast track and settle in to "not working" and now I have started to merge back into the lanes of life.  School, job hunting, and general life that needs attending to on a regular basis.   

I have found I can be away for a couple of days but then the word and thoughts need a place to go and stay there.  Silence from us is not a bad thing.  

This was supposed to be an off week  and only be a blood draw to check a tacrolimus level.  Traco- is a very powerful and dangerous immunosupresent.  It does lots of things and one of them is make the kidneys mad.  She had an appointment on the 2nd of October and her kidney function was a bit "elevated".  Monday was a double check on levels but the meds were not taken at the right time so we had a draw yesterday morning.  Besides lots of water drinking, her levels are still high so I am not sure what that means but I expect to hear from them today.  

The call will go something like this..... "Um, we need you come in at....... just for a minute or two, just for a blood draw.  We need more information."  

Her veins are not cooperating.  We will negotiate for a Hector blood draw.  He is the best at the hospital and hope he is not on vacation.         

I think it is time to ask for another port.  They are a bit reluctant but if there need to be multiple blood draws and other stuff, it is time to press the issue.  

Hoping for a quiet week-end.  Always hoping.                                

Reflecting on Time Away

Love the high desert valleys.  The sage brush, the rolling hills, the orchards, vineyards and the little farms, wineries and dusty towns.  Lots of big big pick-up trucks and big big parking lots.  There would be a small small store and a big big parking lot.  Now I understand why Amber and Sam are so freaked out by the parking garage.

We stayed at the Sunnyside Inn and that is a very small dusty deserted little town.  The other towns seemed to have faired better.  We drove around and found Walmart had built on the outer edges of town. Walmart=Death of downtown.

Mary-Elizabeth and Lori and the dogs did well.  I guess I snuck out of town the right way.  No car or house or people disasters.  It was grand to have some time to just wander and take side roads and find funny little places to eat and shop and taste wine. 

The Valley is not Walla Walla.  Most of the wineries have big fake old looking Estates.  Some are sort of garage likes, front living room of old house like and industrial park sheik.  The reason one goes to old fabulous mansions and chateaus in France is because that was the family home.  I sort of like the places that have a couple of tables set up in the fermenting shed, with grapes sitting and turning into great wine.

I have decided that next time, I am going to have a list and a map of the small tiny makers and if there is a water feature in the front, I will drive on to the next.

Leaving.......

Not feeling bad about it....
Going to enjoy my time with the Republicans of Eastern Washington.
Not going to bring back to much wine because I really don't drink it
Leaving most of my technology behind.

Looking for rest, relaxation and some new adventures.

Breath Holding........

Not sure when to relax and breathe.  There is not a class for this or a hand-book or a coach to help me breathe when it is appropriate.

Why am I uptight and worried?  She has her taper, she has a picture in a cool show on First Thursday.  I am back in school and love it.  She has recovered from her less than steller engineering test results but is back at the books and working on her stuff.  The car was in the spa for a week and is happy. The house received  a new fridge and the dishwasher had some new parts.  Every thing is fine.... Ever thing is fine. The clock is back in place.  Nothing can go wrong.  My very presence does not divert disaster.

I can leave for 48 hours and go stalk a chef from Seattle that had cancer and knows how important food is and will help me work on the hospital issues as soon as I have her harvest dinner in Prosser and everyone drinks lots of wine and has a good time.   I can go to my favorite winery and spend a couple of nights in Sunnyside and enjoy a couple of days away....

I know this will work.  No coming back to anything not working or anyone sick.  I can do this and have a good time. 

I am breathing.....  and will do so in a few minutes.

Cancer Smiles.

How are things going?  Fine
How are you doing? Fine
When are you done? Soon
What do you need? Nothing

Smiling all the way. 

People need us to be happy and accepting and thrilled with treatment and the universe and other such things.  Stories about cancer need to have happy endings.  There needs to be lots of "blessings" and " new adventures" and "new opportunities" .

Every now and then you see us cry or despair or whine and then we pick ourselves up and carry on.

We do it because we need it to be true also.  We need to cope someway and hide from the  the pain and fear and terror that is really our lives.  I have encountered several new leukemia patients.  I would like to reach out to them in a more concrete way but know they are not ready to meet me or hear from me.  They are struggling with getting their child into remission and through this round of treatment.  We are proof that sometimes is does not work and is not okay.  But we are becoming evidence that maybe it can work with a transplant.

I am posting a picture of Trisha.  She is the sister-in-law of a dear friend of mine.  We have had the privilege to spend time around family weddings.  She has a lovely family and a two year old.  About 7 or 8  months ago she was diagnosed with lymphoma.  Regular treatment did not work and so she is Transplant Bound.

She and Mary-E have a special relationship since Meb has been through the transplant and has helpful hints for each other.  She is starting round two of nasty chemo.  She is smiling...

She has to smile, Katie has to smile, Mary-Elizabeth has to smile, the moms have to smile.  We have to smile, we have to say "fine", "fabulous", "wonderful" or we fall apart. 

And quite frankly we don't have time for that.....We have to make sure this darn cancer is cured, sooner than later.