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.

NOT ABOUT MARY-E BUT BOY DOES CANCER SUCK FOR KIDS.

cANCER SUCKS.

It just does. It is scary and sad and way way unfair.  After all these years, decades and centuries, it still just sucks and it is predictable.

I have very basic, old knowledge gleened over the years from listening to Dad and Keith (guy from Montana that taught me put ketchup on my scrammbled eggs) study while in Med school from listening to my Dad's half of a telephone call.  Comments like "yes breast cancer metastized to the liver" sort of knowledge.

Well guess what guys, bone cancer still goes to the lungs.

We met Katie Elliot and her mom Darlis and her dad Nathan when Katie first started chemo for Osteosarcoma about a year ago.  They are from Alaska and a great bunch.  I passed the Angry Bird hat on to Katie and gave her the best chimes for her pole.  She is 16 and trying to keep up with school and always smiles and does what the doctor's say.  She had a spot on her knee of cancer and they treated her by shrinking the tumor and then removed her knee and gave her new parts.   This is how they treat this now.  In the old days of Ted Kennedy's son's cancer they just cut off his leg.  

So Katie has had to stick around because of an infection and not healing and some other nasty stuff and yesterday she had a scan. They are very fond of full body scans when you have this disease. 

Dammmmm it...... Some spots have shown up on her lungs.  Surgery, I am sure some more chemo. Dammmmmmmmm it. 

Okay.  We will wrap our minds around this and figure out how to help Mom and Dad and distract Katie and swear a bit and have them over for dinner and take them real food while they are in the hospital. 

Cancer Sucks.

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

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

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

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

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

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

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

Mercury Must No Longer be in Retrograde

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

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

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

We are moving forward.

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

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

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

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

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

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

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

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

Hoping, Hoping Hoping.

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

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

Light the Night

In Seattle, Light the Night is way cool because it is around Green Lake.  It involves hundred's if not thousands of people walking with lighted balloons. The money raised is used for Lymphoma and Leukemia research.

We have been once to support Elise Reinfeldt but Mary-Elizabeth has never participated. 

There are two kinds of balloon, red and white.  White balloons are carried by survivors.  She has never felt like a survivor and it turned out she wasn't done with cancer yet. 

I am hoping next year or the year after we can do the walk and both feel like survivors.

I am trying to think of Cancer as Strep throat.   All it took was some research and a bit of moldy bread to find the cure but before they found the cure, they knew the cause.   We need to find both right now. We know leukemia can be cured by bone marrow transplants but what a cure!... we need some moldy bread.....

September 29, 2011, is our 9-11

Cancer returned, or I should say was re-confirmed.  A year ago today, we all, already knew it was back. 

Next September 29, 2013, I am going to project Cancer is way behind and has no chance to return.

I think I am going to make Fruit cake today and pray someone kills a deer or an elk so I can make Mincemeat.

Mindy Smith.... and our Journey

Sometime in late 2004 I was listening to NPR one early Sunday morning.  They had a singer/song writer on and she had done one song with Dolly Parton and had just released an album.  She sang a song "One Moment More" which was written after the death of her mom from breast cancer.
Since I am way hip and way cool I scrambled to write down her name and immediatly found her album on Amazon and ordered it.  Love her music, her voice, her range of music.  After I heard her music I tried really had to see her live.  She lives in Tennesee and does not get out much.

When she player here, it is usually at a place called the Tractor Tavern in down town Ballard.  It has been in down town for many years.  It was there before cool built up around it. Two store fronts, a stage, a few chairs a bar on the right and guy at the door asking for $17.00.  Musicians love it, small intimate, weird clientel.  It is one of "those places" where you never know who is going to do a set.

I, of course, have never been cool enought for such dives.  I still am not that cool but when I found out she was coming to town, I ordered tickets.  Come hell or high water, I was going to see her.  And I did.

Her voice was not at it's best because of a cold but she kept going...., the music was too loud because I am old but it was wonderful to finally see her, to hear her play new songs and old.  She skirts on the edges of "way cool" sort of country, sort of rock, some pop thrown in and some Jesus music, but then she is from Tennesee now... formally Long Island.

For one of her encores, she played One Moment More.  The song that started it all for me. It is a haunting melody that most think is about a guy leaving a girl behind. 

I like singer/songwriters a lot.  I didn't realize it until Beth Peterson said something about "singer/songwriters".  I like to listen to music from a person's life.  It tells a story.  I love books and art and all those things that are from a real seed of life.  

I loved my evening, even though I was up way past my bed time.  I plan to try and be up more often..... I also plan to never have to play "One Moment More" at any one's funeral.  So there.

Oh My....

The gum wall makes everyone in Cancer World squeamish.

I am so so sorry.  I have just started going back through the blog and editing it.

Boy am I a bad speller and writer sometimes.  I did some reading of the old stuff and it made me itchy and I have a great tolerance for “design decisions”.  I can forgive almost anything.  Working on forgiving myself.  (Sorry love sentence fragments.) 

I just dump my thoughts down and leave the pain and the anguish on the page. I don’t even really remember what I have said. 

I am going to go back and work on each month.  I do my best editing on real paper and will be working in Word.  I will replace the new and improved version as I finish that process.

Quiet, a good kind.

We are all up this morning.  I am off to the zoo for some walking.  I had to change insurance policies after I left the office and it closed.  I was lucky enough to be a member of the King County Bar Association.  As a member I was able to be added to their group policy.  It is always much better to be on a group policy.  

Group Health has a program with the Woodland Park Zoo.  On Tuesday and Thursday mornings a group meets at the zoo and walks for an hour through the zoo.  We enter just after it opens.

The zoo is strangely quiet at that time.  The animals are semi-active.  The keepers are busy, the paths are empty.  The zoo is basically deserted on those mornings.  The store is open but no one is present.  The small food places are closed in the morning.  The paths have a few workers and volunteers it is mostly your group. As we leave the strollers and children arrive with their Lycra wearing mothers and a father or two.  Sort of nice to be beyond that phase of my life.

Some people walk in groups, others are alone.  Someone asked me if I had found a group to join.  I am not not joining a group but I am not seeking company, just yet.  I am basically exploring.  New exhibits, old animals.  Learning my way around.  Still looking for some things that are missing.  I could not find the penguins the other day.  Found the Flamingo’s and one goose that thinks he is a Flamingo. 

I am using the time as decompression time.  I want to wander and think, stop when I want.  Just wander for a bit.  Unstructured.  No conversation.  It works for me.

Until I go to start the car and it is dead.  Really dead.  It is having a free ride to Honda of Seattle for some more work.  Hope it is not really really dead.  

Favorite quote from the Sweet Potato Queen   “There are just two kinds of cars.  Good cars run.”

The Child is Gone and Not in the Hospital

 

Allie and MEB the relapse twins, both going places.

 

She announced yesterday that she was going to go to her dad’s for awhile.  No medical “encounters” for a while so she was going to stay.  Arranged, it packed her stuff and had him come get her. So there.

I think it was the change for the first day of autumn or Patty Pages 34^th birthday or she is finally feeling better about being a bit further away.

Ana and Johnny live in that weird part that is Lynnwood but sort of Mukilteo and it is “in the circle”.  The circle drawn by people that don’t really know how far places can be if there is traffic.  But she is feeling safe and a bit more adventurous. 

Someone has offered us a beach cabin on Camano Island and I really really want to go there for a few days. 

This is the first step.

 

 

Paper and Pens

I have number of pens.  I keep them with me and use them when I can.  I have found I do so much better with a real piece of paper.  It is real, it has substance, it does innocently disappear behind Spider Solitaire.

I of course love my fountain pens.  Love the ink the blotches, the purple inky fingers.  I love the way they write, the way they make me write.  I don't mind the mess, the lack of ink at the most inopportune time.   I love the bottles I have to care around and the look on the TSA guy's face when he opens a bottle still does not understand.

Good paper, good ink, good friends.  It is a good thing.  I am going through drawers and boxes.  Who knows what will show up in your mail box.  

The worry fairy....

We are in a really good place.  Meb is back in school, sort of.  I am going to take a couple of Human Resource classes at the U so I am back in school, sort of.  She is feeling better each day, sort of.

The worry fairy is less present every day but is still hovering, sort of.  We went to see Katie and Darlis yesterday.   (They were here for dinner and Darlis commented how they would not be enjoying the 2nd floor over flow facilities during their stay in Seattle. Katie spiked a fever and bam..... 2nd floor.) We stopped by the 3rd floor to see if they were really on 2nd. 

In the hall was Abby, Chipper, always smiling, always up and moving and always always always ........ standing with three people.  She was trying to take a step.  A single step.  It was so apparent how hard this process was for her.  The pain on her mom's face, the deep confusion on her face.  The happy smile of Megan (one of our favorite nurses) trying to pretend this was expected.

Transplant, is so much more difficult then anyone can imagine.  The months of preparation, the months of recovery, what am I saying the years, of recovery.  You read about it, you see what other people go through, you go through it.  It is not an easy thing.  I hate to keep whining about it but this is not a simple thing. It is not over for us at all.  It permeates every part of our lives. 

Then, get this.  One of the kids who is at day 90ish, gets to have another transplant because instead of having one of the cord blood units go away, he still has both in his bone marrow. 

Now that is just a blooming nightmare.  Two sets of cells have taken up residence.  Who knew?  Who wanted to know?  Who could even imagine.  No one ever told me both could stick around! Now it did not happen to Mary-E but just think.  I don't think she would do it again. 

We are so lucky, sort of.   Project for today: I am going to put  the Worry Fairy in a box and make her stay there, sort of.

Hope and Hubris

Hubris: 

1.       Excessive pride or arrogance

2.       Excessive ambition that usually least to the downfall of a hero in classical tragedy

 

Hope:

1.       To have a wish to get or do something or for something to happen or be true, especially that seems possible or likely.

2.       A feeling that something desirable is likely to happen.

 

Cancer World Mom’s are so hubristic and so hopeful that we make each other gag sometimes.   They are filling our children full of poison and weird stuff and we just ask for more.  WE KNOW they will get better. WE know they will not die. We know they will not have immune systems that allow diseases not seen since the 14^th century to enter their bodies.  Our kids will not suffer all of THOSE side effects and lose their balance and lose their fine motor skills and their gray matter and their executive functioning and their fertility and their skin and their hair and their thyroid and their  sight and their kidneys and…….

We know they will get better, because we are their MOMS and we can weave through this maze of drugs and side effects and procedures and tapers and IV medications and our sheer will of being MOMS will make only good things happen.

The fact is most of the children, if not all, have a MOM with an iron will.  A mom that knows she can do better then the next mom.  A mom that is working so hard to hold on to the hope and to believe they have made it out of the tunnel and are going home.  We are going to be able to continue life, with a child intact.  A child that can look back and say:  I HAD CANCER and I beat it.  

 

When something does not go as planned, as expected or as promised, we are furious.   When the child ends up in the hospital with a fever or procedure is not scheduled correctly or the transplant has to be done again because both donors are still hanging around, we are just devastated.  We know somehow it is our fault.  We have somehow failed to do what needed to be done.  

The hardest thing of all is accepting that we really don’t make stuff happen, good or bad.  We aren’t in charge of the weird bacterium that floats around and causes an infection.  We are not in control of how an incision heals.  We don’t make the ANC go up or down.   We really are at the whim of cancer and it’s affect on our children. 

Hope and our Hubris  is how we survive

Getting Back on the Bike...

Might be a crazy thing to do. 

Might fall.

Might not.

Might hurt.

Might not.

I am wondering why I am thinking about this, of all things.  Maybe this time of Pre-Prednison taper I am able to think about other things.  Getting on the bike might be okay.  I used to ride a fair amount.  Lots of Lake Washington trail kind of stuff.  Down to Seward park.  Had the outfit, the helmet, still have the bike and the helmet.... The outfit, I don't think so...

Maybe I will try.  Or maybe I will think about trying.....

Dedications....

If I ever had to dedicate something to my child it would be a spiffy crew shell to be given to Holy Names specifically for the JV team to practice in and to row in during meets.  Hands down.  If they would not agree to that, I would give it to Green Lake Crew to beat Holy Names.

It simply sucks that I have thought about what I would do "IF".  Just as I forgetting what I would do, I was reminded last year I could be a mom dedicating something to my child.

The Seahawks dedicated the last game to Mario Guzman.  I don't ever want to have to think about it.

Ruby's parents raised money for a Bench in her favorite park.  Heidi bought a shell for Mt. Baker Crew.  I saw it go by and realized the majority of them are named after dead loved ones.

I want to dedicate things to my living daughter.  Simple as that.  I want her to dedicate something to me when I die.  None of this dedicating to people I love.

Okay, back to setting up the tent in our neighbor's yard.  Long story. Pictures to follow.

Dedicate today to someone you love that you can reach out and touch someway real.

It is something that comes up every now and then. 

Taking Care of Me

I have almost forgotten what that means.  Everyone says it sort of like:  Time heals all wounds.  It is a good thing to say, a heartfelt sentiments but sometimes it

"Easier said than done."

I am going to try to focus on me.

Step 1:  I made coffee and will drink it where I want to drink it.
Step 2:  I will get dressed and go to Woodland Park Zoo for a couple of hours and not feel guilty about not walking my dogs but instead walking around the zoo.
Step 3:  I will drink more coffee.
Step 4:  I will set up my office upstairs so I can be ready for school to start on October 1st.
Step 5:  Feed me today.  Let other's join, but feed me.  Food that is fresh and healthy and flavorful...
Step 6:  Use the good china for just the family.  
  

Okay, that gets me to noon.  See.  I know there are a million other things I could do for myself but I seem to have lost track.  Hair is good.  Toes could use some work.   Maybe something will come clear while I am walking with the animals.

I am having such a hard time going to the zoo.  It is so much easier to look around and see what needs to be done and to let it go.

I need to do somethings for me.

Going to take a shower.
Taking the newly polished round silver tray back to the basement.

Putting in a load of laundry.

So there.  The girls can walk the dogs.

So...... The Eye of GVHD

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

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


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

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

No nothing has changed. 

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

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

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

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

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

Sweeping

We are not a sweeping culture.  It is a relative simple thing to do but we are a vacuum, leaf blowing, Shark, Swiffer, steamer kind of people now. 

We have forgotten how to sweep.  I have these very clear and distinct memories of Lupe, Mary-Elizabeth's Mexican  Grandmother sweeping.  She would start in one room and move to the next.  Or she would go in front and sweep.  Every day, without fail.

I have been sweeping a bit.  It has a calming affect on the mind.   A purpose, a good result.  It allows the mind to wander to places unknown.  To disengage from the real world and to let it go where it wants to go.  Sort of like dreaming while awake.

I need to do it more.  Time to get back into the garden and prepare for winter, as much as we can prepare for anything.  Transitioning from one set of rules to another even if it is a bit rough.  There is always a "side affect".

Sweeping = sneezing;

Sweeping = calm thought and contemplation;

Sweeping = clean back patio.

Sort of like chemotherapy.  The bad is outweighed by the good.