Rainy Day Contemplations

First, I hate to tell everyone, St. Patrick's day is not until tomorrow.  I don't care how much green you wear, how many parades you have, how many fun runs, it does not count!Okay that is off my chest.

Ss some of you might know I had an experience around Christmas that made me want to reach out to some new Cancer Kid families.  They were unfortunately introduced to Cancer World on Christmas Eve. 

I searched my brain and began to put some things in a bag.  I thought long and hard about what those items might be.  After two stints in intense Cancer World, several years apart it took a while.  I had learned a lot between treatments.  There is lots of "stuff" available at Seattle Children's but not always what you really need.  

We ended up spending lots more time inpatient the second time.  Months and months at a time.  Did I mention months and months and weeks and more fortnights.  So the gathering began.

1. A multi-useful bag.  As a parent you are always hauling around stuff.  Cloths, clean and dirty, stuff to go to the shower.  Extra stuff from the room.   A good bag is necessary.  

2. A china cup.  Months of paper cups are hard.  It feels so so institutionalized.  Nothing like that morning cup of coffee from Starbucks in something you can warm your hands on.  For a few nano seconds it is possible to pretend you are having a moment of peace and quiet at your own home.  Also I was moved by this passage years ago.
"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

I also let the new families know there was instant hot water from the nurses and they had tea in the nutrition rooms for the families.

3. A Starbucks card to get the families started on their way to being Gold Club members.  Oh trust me during admissions food and drinks from Starbucks is a life saver given the lack on going lack of nutrition at Seattle Children's.

4. A small shaker of Cinnamon Sugar.  Cinnamon settles the stomach and helps when there is not food from the kitchen because they are closed and your child has been NPO all day because the procedures are backed-up. (Happens all the time.)

5.  A magazine.  During Cancer Treatment the most any parent can read is a page, with lots of pictures.  I think this is one reason bible scriptures are helpful. Short, and to the point.  Granted I did read House of Seven Gables and War and Peace but that was just because I am weird and it took me a long long time and I had started them before.

6. A bead. A small bead that will fit on to the parent ID badges, the necklaces we all wear to ward off evil spirits.  Cora Breuner took a bead off her own necklace and gave it to me during a very scary dark time.  I have handed several to moms in crisis.  I left one with my friend Elizabeth from NJ and with Carol whose daughter survived a transplant for lymphoma.  Some of the kids get beads of courage but the Mom's need them too.

7. A rock.

A stone, a little bit of something to grab on and place and focus on during some of those awful times during the process. The pain, the despair, the fear and the agony that is transplant and cancer treatment.  A stone. A special stone. One that shows a bit of interruption in life.  Not a big one. A little one. One that permeates everything in your life but still only a disruption.  This stone had a disruption but was able to keep it together and regain itself.

8.  A few pre-stamped note cards.  Pretty happy ones. Ones that can be used to thank all the people in the family's life for all they will have done for them.

9. A small warm fleece throw.  Hospitals have blankets but they are nasty and scratchy and smelly and need I go on?  Something soft and warm to gather around your shoulders at 2:00 am is a good thing.

10. A wind chime. Oh yes, the chime.  We didn't stumble on to these until our first night of our first month of Blue Thunder Jail.  Mary-Elizabeth had 6 various IV pumps, we shared a room with two other kids and their pumps.  One night the pumps alarmed every 15 to 20 minutes.  I still can hear the noise in my head.  I came unglued.  The next morning I went to City People's Hardware store and found the smallest, good sounding chime.  Not big, not noisy.  Pleasant tinkling was the goal.   We installed it and things got better.  I think the pumps were feeling unloved.  Our chimes were with us for the entire time of the Transplant.  They were placed for either maximum sunlight or pump duty.  They have been passed on to another patient that will be spending months in the hospital.

Then there is what ever. What ever strikes our fancy.  Maybe some nice cream or hair products. Some shower shoes, a list of places that deliver real food from the outside world.

I approached Seattle Children's Guild Association and this was their reply."

Hi Sally,

 

I hope you are doing well. I am sorry to be getting back to you nearly a month after we met.  It has taken me a while to reach out to different individuals to seek their input.

 

  We talked about the bags and the challenge with storage as well as the contents not necessarily being the right fit for all families.  We think it is a lovely and generous idea, but it is not something we are able to accept and distribute at this time.  I know that every item in the bag is meaningful to you, and for good reason based on everything you shared with me at our meeting.

 

I have reached out to other staff members at Karyn’s recommendation to seek ideas for items that would be most helpful to patient families should you be interested in changing direction of your support.  The response so far has been that food bags and gift cards are the greatest need – which is currently a project that we are doing called Operation Family Care (see attached flyers).   We would welcome your support of these efforts if you were so inclined.  You do not need to be a guild member to participate.

 

Regarding the Wishing Rock Guild, we haven’t processed your application or membership checks as we would need to determine a different project than your original intention. Should you desire to raise funds for the cancer program at Children’s, we can talk about different funds that may interest you in supporting.  

 

Is there a good time Melissa and I can call you and discuss other ideas?  I know you feel strongly about your bags and thus may not want to participate in any other efforts. If that is the case, we totally understand.

 

Thank you Sally.  Hope to hear from you.

 

Aileen Kelly

Executive Director | Guild Association

 

 

 

Not to be dissuaded we are going ahead.  I think Aileen is right.  This should not be a project for Seattle only there are other very deserving families in pain, not just here.

As the rain continues in that steady drippy sort of way that is so Seattle, I will start the foundation paperwork, Work on an agenda for our next meeting on Wednesday the 19th and carry on.  Seems like the right thing to do. Please contact me for more information.

Food Garden at Seattle Children's Hospital?

Oh, I will be taking pictures and asking questions today. 

I have decided I have two passions in my life.  One is increasing awareness of the need for bone marrow and double cord blood donation and the other is making the food they feed the cancer kids better.

I am going to visit with the new head of dietary today.  Pictures later....

If you are from Canada

If you are  from Canada and your visiting Children's Hospital, guess what they feed you for lunch.

NOT HOSPITAL FOOD

Shame on you.  If you can order in for guests, then you should order in for the really important people, the patients.....

Level Six... Heretics...

In the sixth circle, Heretics, such as Epicureans (who say "the soul dies with the body" trapped in flaming tombs.


I am so so confused but then I must consider the times.  Being angry, sometimes rightfully so, put you in level 5 .  Heresy was a big deal in the 12th Century.  But boy do I know about Heresy....Or like I prefer to conicider it, contradiction of those who perceive themselves in power.

What a surprise, some docs think they have been imbued with great powers and should be revered.  An even bigger surprise is that I don't see it that way.  Lots of parents now days don't.  My mom still "listens to the doctor"  and to some extent so do I.  I do consider their opinion and often even do what they say but they have to provide a good explanation first.

Cancer Mom's are really the ones that know their kids.  They have been there from the beginning and they are the only real constant. Some times they are lucky enough to have someone else on the "team" that stays with then during the entire process.  We have had Karyn Brundige... Fabulous person.

Because we have this very complicated and long process, the Mom's are the only ones that know. Really know. Each child has a "note" that follows the child and explains everything but trust me it is so long and in such tiny print no one reads it any more.  More then once I have used the blog to help someone find the right page to read for a date. 

Sometimes the docs and the others need to be questioned and corrected.  Sometimes it works and sometimes it does not... I did let Paul Carpenter MD, PHD, MRI, CAT let Mary-Elizabeth have only 20mgs of Prilosec but he had a good reason.

Oh, secret Heresy is the worst....  The one at Children's is that they feed the kids three meals a day plus snacks.... HEE HEE... don't tell or you will end up on Level Six with me.

I Sat By a Guy named Brad

On the way back from New York.  He was coming here for Christmas.  He was from Southern California.

He had lived in Seattle for a number of years.  He owns a company, lives in Berlin and while at the University of Washington came down with Lymphoma.  While he could have been treated at Children's  he was at the  University and when the big merger happened under the SCCA.  

When he asked why Mary-E did not have a Port, I knew he was one of us or had someone in his life that was from Cancer World.  We had a very long talk.  I was most interested in how his life was now.  What he had experiences over the past few years.  You know I asked him a million questions. 

Brad told me it took him almost 5 years to really feel good again. He counted each and every day a good one when he woke up and had energy.  He has crafted a life for himself that works.  He travels  a lot.  He spent time with friends and family and lived in a place he fell in love with, Berlin.  

I don't know if I let him know how much our visit lifted my spirits.  We spend so much time in Cancer World managing a the crisis d'jour that it is hard to see 5 years down the road, let alone 10.  

I know Mary-E was almost 5 years out when she relapsed so we should have been pretty darn happy.  But you, know, she never felt like survivor.  She always hated that word and relapse was the word that cast the biggest shadow.

Thanks Mr. Brad. 

Yellow River

 

so Seattle Children's Hospital has spent millions of dollars on a new building.  Someone decided that since the ER (Now Known as the ED) was going to have negative numbers, they would completly re-name, re-number, re-color and re-do the entire hospital.  They chose well for the most part.  Green Forest, Purple Mountains and Blue Ocean.  Then it all went to hell with the YELLOW RIVER

 

I have of course commented on this little faux pax to many a person's amusement.  No one has thought about it quite that way.  How could anyone not see it?

 

HEE HEE.  Oh well forever this place will have a yellow river.  Yellow Snow needs to be next.

 

Child is still having major trouble breathing.  Using a fair amount of Oxygen still.  Hoping her $10,000.00 IVIG will make a difference.  She is pretty miserable and still in Strict Isolation.  

 

I will just hang out and enjoy the Yellow River.  It has a Yellow Frog.  Probably a product of the Yellow Discharge from the Nuclear Plant. 

I am in control of the Universe and it does fall apart when I am gone.

I left on the 26th for Eugene.  Mom was gimpy.  She had taken the 25 pound turkey out of the over by herself and twisted and tore a muscle.  The big one.  When questioned about it, she simply pointed out she had never needed help before.  So I mentioned that to Mary-Elizabeth and she said that was just like Me.  I figure I have a few more decades to lift the turkey.

I spent a few days with mom.  We left the house a couple of times.  Housekeeper Thursday and Dentist Friday.  We had lunch at our favorite tomato basil soup and some other yummy things.  I helped with the dogs.  Mia needed no walks with Lily and Tucker around.  There is so much with the toys and the socks and other things. 

Mom was walking with a walker but after  a few days she was able to walk a bit more.  She had chairs strategically located and has most things worked out.  One in the kitchen to keep an eye on the coffee, one by the door outside to keep the dogs happy.  One in the dinning room so she can walk around the table a few times to get stronger. 

I was there to pick up some of the tasks it takes to make life better and running smoothly.  It seemed to work. I has no particular time for my return.  I knew I had to be back on the 6th so I could start school again.

So what happens, Mary-Elizabeth was left with the house and a cold. I had the dogs and there was no real projects to do. So I left.  She coughed and slept and spend some fun times with friends. She even went to a movie.  Life was good and then......

Bad cough became horrible cough.  Sore Throat and more coughing.  A chest Xray and some more coughing.  Nothing really showed up.  Some snotting into cup and then more coughing.I received a call about 3:00 am about a child needing to go to the ER.  Or sorry, ED (emergency is more then a room). 

Anne had a great adventure.  She was very upset as they tortured my daughter while trying to get an IV in for the CT scan.  4 times, no numbing, no nitrous, no......  I don't even want to think how bad it was.  Tears, pain, big pain. 

There will be on more pain if I can help it.  I want a line.

I am so upset by all of this.  It is so hard to see your child tortured.  She is so strong and so worried about all of this.  I am sure this is not as bad as it feels but it is not good to be back at all.  They will fix her and it will be okay and she will get better and we will move on with getting past this year.

It is all my fault.  I went to my class reunion and that caused a blood clot.  I go to New York to hang out with Mick J. and it causes an patient stay......  It is me.  It is not cancer or Pearl Anne it is me.  If I am not around to stomp on the trouble causers, there is a problem. 

I have to remember Pearl Anne is only a year old and she is running around in the body of a young adult.  The two of them can get into a lot of trouble and they have.  Oh have they been out of control.  Well I am back and I am not going any where.   We are getting things under control!

Oh, well live and learn.  I will try and sneak out a bit but leave when Pearl Anne is better behaved.  She can behave if she does not know what I am doing. 

We are having a good time visiting with everyone.  We were most pleased to know that they have fresh Satsumas for my poor baby.   That made me happy. 

Sometimes it is the Little things...... Nasogastric intubation

Doesn' t that just sound nasty.  It is.  No matter what they say or call it.  It is a nasty nasty thing. It is not a little thing, it is just another thing in a long list of awful, terrible, horrible, things.

Essentially they stick a tube through your child's nose into your stomach and feed you that way.  (It is one way that relieves Chef Walter from having to feed the kids.) 

Kids have a very hard time keeping up their eating.  It is not enough to eat Chicken Nuggets and re baked deep fired reconstituted mystery food and re-microwaved, previously in a sealed packaged fake mac & cheese.  The fact is they can't eat a whole lot of the time.  There are so many things that make their stomachs upset.  Chemo, radiation, pre-meds for blood products, mouth sores.  When they are ready to eat while they are on steroids the food they want is white and salty.  Even then they don't like Chef Walter's food.  (Not that he would ask or care or even acknowledge he should be cooking for them.) 

It is a big battle.  The older kids understand.  seldom do you see a teenager with a NG Tube.  They will have none of it.  Mary-E was very very savvy about them.  She would ask what the limit was and would not go below it.  She knew when she had to start eating and she did. 

The little ones are less able to be bribed.  They hurt, or they don't want to eat and no amount of bribery will help.   Remember our favorite little Robin.  Mouth sores=closed mouths.  As Mary-Elizabeth said: "mom she isn't stupid, she knows it hurts."

So the tubes have to happen.  Like everything in Cancer World it is just one more thing.  It is one more reminder that we are set apart from the rest.  We don't cure our children with good food and good sleep and good stories.  We cure our children with pain and suffering and colored poison and tree-less houses and weeks in confined places with filtered air and endless interruptions and pain.  We allow people to experiment and poke and prod and cut and paste and do endless things to them.  Why?  because we have no other choice. 

For reasons we don't understand we find ourselves having to let it happen.  It is what stands between ourselves and total utter despair. 

One thing that helps is other parents in Cancer World.  I have been corresponding with a mom in New York.  Daughter 17, transplant on the 5th. Child in ICU with total Kidney failure.  A couple of fellows have crossed her path and not in a good way. 

I know the docs and other medical staff understand our rage and tantrums and our failure to always be the kindest.  They have been in this trench before with other parents and if they did not understand they would find another area of work. 

I do worry about the poor soul that fails to provide the frosted cranberry scone when it has been one on of those years.  I worry about them. 

Hoping for less damage in my wake as we travel through Cancer World.

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:

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.

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.

 

Someone else's new diagnosis, our version of 9-11

Yesterday someone shared a notice of a newly diagnosed family.  First grader, at Children's, Family well Supported. What to do....  Child had a long chronic cold, will be a Seattle Children's for a while. The family has a meal service set up, they are adjusting.....

Oh, my it brings it all back all so so fast. 

For a few moments the original diagnosis passes by. Confusion, upset, concern, panic, fear, despair, and then more confusion.  How did I handle it? What was I needing in those early months? How did we survive? What would have made it better? 

 I know it took me a long time to figure out how to receive from other's without guilt. It took a long time to put into words what I needed other's to do.  Everyone wants to  help. Everyone wants to something.  No one wants to do something wrong.  Do we call? Do we visit? If we visit do we stay an hour? Do we take food?  Should we send balloon, cookies, flowers, a new puppy?

The fact is they have just had some of the worst news of their life, are in total shock and are just trying to get from one set of rounds to another.  They are learning about counts, are ecstatic that their child is not throwing up and that the hair is still their.  They are grasping on to any little bit of hope available.  They are telling their friends "it is the good kind of childhood cancer". 

I can remember when we would go for a walk on the floor or go to clinic and Mary-Elizabeth would say, "They are new".  I would agree and we would continue.  We each would enter that corner of our  brains that those first memories reside.

9-11 is seared into the memory of many.  Some of us still remember when John Kennedy died.  Some when John Lennon was shot.  Some when they got a call from a friend staying at their house, asking that a call be returned to Children's. 

We all have these dates and times.  Some universal, some personal. 
Hoping for memories of good things.

 

 

Deep into the Corners

In Cancer World the docs are always on a hunt into the recesses of the body for lingering cells. 

They look in the bone marrow, the spinal fluid, the testicles (if applicable).  They are always looking.  They say that cells hang out there and must be tracked down. 

Now Leukemia is not like solid tumors, stray cells don't float around, attach and then find a new place to land and grow.  The cells they find are just evidence that somewhere in the bone marrow, a cell is being bad. 

In Mary-Elizabeth's case the sleeper cells did not show themselves for more than 7 years.  They were shot down and suppressed and waited.  Waited and Waited and then one day they came out to play. 

 I have theories.  Stress, potato chips, bad school food. Lack of diligence, too much diligence.  Cosmic rays, too much fresh air, not enough fresh air. Too many pesticides, not enough pesticides.  It is all a mystery. 

I guess cancer is sort of like a hornet's nest.  It secretly grows in the Rhododendrons in your back yard until one sunny day when you are sitting on the back porch of Carolynn Baker's house and a raccoon climbs up and decides hornet larva would be a great afternoon snack. 

Well I have not been very diligent at my house, especially in the kitchen.  Now that "school" has started, I feel the need to return to the kitchen and really cook.  When I turned around today this is what I found. 

Oopsss.....  Kitchen Faeries are on Restriction until we find the corner.

Better Food Please

http://www.facebook.com/sally.a.lanham#!/BetterFoodPleaseAtSeattleChildrensHospital

I started a Facebook Page about the Hospital Food at Seattle Children's Hospital.  Spread the word....

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.

Defining where you are and where you come from...

Facebook wants to know where my home town.  I don't have a good answer for that question. 

I have lived or my parents have resided in the following places since my birth 12 years ago. ( I adhere to a different calendar than the rest of you.)

In Chronological Order:

Born in Council Idaho
Riggins Idaho
New Meadows Idaho
San Antonio Texas
Parma Idaho
Moscow Idaho
Alexandria Virgina
Washington DC
Ogden Utah
Spirit Lake Idaho
Dalton Garden Idaho
Hayden Lake Idaho
Caldwell Idaho
Oxford England
Midland Michigan
Mt Pleasant Michigan
Dietrich Idaho
Walnut Creek California #
Moscow Idaho
Ontario Canada#
Zurich Switzerland#
Boise Idaho
Seattle Washington
Eugene Oregon#
Cancer World

# Only visited Mom and Dad.

Now how do I pick a town.  My favorite, length of stay, best memories. 

It is so hard to tell.  Each place made an impression. Each place was important in shaping the person I am today.  It is all such a jumble. 

I realized on these last few years that while I have lived in Seattle for almost half my life this is not my home town.  I claim it, I love it, I have been as happy as anyone could be but I don't think it is the last stop on my journey.  I am always looking for the next place.  Some think that is weird but then look at all the places I have missed in my life journey.

and we are here on this strange place called Cancer World.

Until we are off of Cancer World we will stay put.  I will water my trees and grow Grampa's beans.  I will re-purpose my life and will continue to think about what it next.  I guess this picture says it the best.

Cancer World is hard to understand.

We are here.  We are still your friends. We don't call you back. We can't write a thank-you card.  We certainly can't schedule anything.  We are here.  We know you are there. You have helped us all so so much.  Calls notes, offers to stay with the child. Errands, money, coffee cards, groceries, meals, hugs, open ended offers of help.  Prayers, novenas, more prayers, chains of prayers, the list is endless.  We know you are there while we are in this box, in this tiny space with a very very small part of the population. 

We worry in ways you don't. We fuss about things that you have never heard about. 
We talk a different language.  We have different acronyms and lots of weird stuff in our car and in our purses and in our homes.  Some of us have more than one home and Ronald McDonald means a completely different thing to us than to you.

We are sad about different things.  We look at our children and your children.  They have all had there struggles and challenges.  Ours have a certain flavor. You never had to see our child pull out handfuls and brushfuls of hair.  You never had to tell you lovely daughter she could not go to her first dance with her best friend that came from Chicago to visit because her "counts" were too low.  You never watched your daughter secretly die in bits and pieces as her friends go back to college while she monitors her blood sugar and worries about every surface she touches.  You never had to try and explain to her why her friends don't want to visit or come by or take her somewhere "safe".  You understand how hard it is for them to have a friend that has had cancer not only once but twice.  She does not understand why they are afraid, reluctant.  

But, we are still here.  She is at home. She has only been back in the hospital twice.  She is not like Mario in ICU bleeding from her lungs  while having her life supported by a respirator.  She has never been in the ICU.  I can't imagine what Mario's parents are doing right now. 

Mario, Luis, and Mary-Elizabeth had double cord blood transplants with-in days of each other.  They are 18-20, they all had relapsed ALL, they are Hispanic. They have lovely parents and Luis's grandmother makes killer mole'. We have all spent time together, complaining, crying, laughing and learning how to live in Cancer World for the second time.  It is so worrisome when one of the kids is sick.

 I guess being in Cancer World means there are no boundaries between your personal pain and that of all the parents and kids. 

Can you tell that I spent too much time at the hospital today. I had to vent.  91degrees makes me grumpy. 

This was my fortune cookie yesterday.

If you print ti often enought people start to believe it.

http://wljhowell.wordpress.com/2011/07/12/haute-healthy-local-cuisine-coming-to-a-hospital-near-you/#comment-456

Ms. Howell thinks they serve edible food at Seattle Children's Hospital. 

Maybe the world is flat.  If we say it often enough do you think it will be true?

We're Back in the Hospital Again, We're Back in the Hospital Again....

Should be sung to an old country western tune.

But I had such a great time in LA with my family and with the weather and with the rental car.  It was grand.  Dinosaurs, Saber Tooth Cats, (no tigers, they are different), Van Gough, Nixon, Melrose, Compton, Norma's Restaurant, Kindle Donuts, Nigerian Delegation, Quiet Spoken United Pilot that did not understand how we could let the Japanese have the first 787 and not an American Airline, Sabine and Stephan from Munich.  It was wonderful.

Wonderful ends and reality begins.

Above the cute toes, a swollen leg.  Clots in legs cause swelling.

She was complaining when I came home.  I looked, I assessed, we went to dinner.  Then we called Dr. Fassett and then we went to the hospital and then she had an ultrasound and then she was admitted and then.....blood drawn, lovanox (yet two more shots a day).

Lots of blood draws, blood clotting  before it can be tested....

Cancer is creative.  I have to adjust my thinking.  I have a six month old baby.  As baby's grow, they are unpredictable.  They grow and change and just as you have it all figured out, they change again.  I am 6 months through this process.  I should not be surprised when there are new developments.

Okay, I can't fix this situation.  So I shall concentrate my efforts on identifying the warbler I saw by Nixon's birthplace.

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.