Home After 6 Days.

We are home. We are home.  We are HOME.

Now, how to stay here. 

For the last seven days, six nights we have been at Children's.  They love how much disease has fled from her bone marrow and her high return of things like platelets and red blood cells and Neutraphils.  So she started the next 42 days of therapy called Intensification

They call it intensification for a reason.

36 hours of High Dose Methotrexate given along with dexamethazone and Thioguinine.  Then 12 after it ended they started72 hours of Ara-C. 

So guess what? She feels really really lousy and is hunkered down waiting for her counts to drop into the basement again, and hope she does not get sick before Thanksgiving.

Then on the 29th of November we do  6 days 5 more nights of other chemo.

The donor search is on. If they find a donor, we meet with the transplant team.  There is a good chance we might have to do this round of chemo again if the donor is not found, or she gets sick or..... the list of possibilities goes on. 

She has a long long road ahead of her and is pretty down right now. Mary-Elizabeth is a fighter and a trooper and real sport but most of all she is a brave confident young woman realizing her worst nightmare.  This has been and will continue to be the worst thing in her life.  It is pretty hard to be positive all the time no matter how much that is part of your basic being.

She has a great attitude, she does everything perfectly, she listens to the doctors, she advocates for herself and she feels like she has let everyone down.  She told me she was so sorry for making all of us go through this.  I in turn apologized for not giving her a better set of genes. 

I pulled out all the stops, Barnes and Noble, North Face and then Specialties.  Did you know that each cookie is TWO servings?  I really did not need to learn that today.  I am going to stick to the words from House of Seven Gables:

Prolixity
Inveteracy

Ingurgitated
Irrefragably
Whencesoever

Most are not even in a modern dictionary.  Got to love that.......

Almost Home

Tomorrow at this time we will be done with this 6 day admission.  No counts until next week.  She just feels lousy.  Really lousy, not wanting to go to the cafeteria to seek out real food between 1 and 4 am.  Rumour has it that there is real food because they want to be good the the people that have to be here.  I guess our staying here is optional.

Chef Walter Speaks and I reply.

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FROM:

• sally lanham

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• Bronowitz, Walter N.

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• Sally Lanham

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Saturday, November 5, 2011 9:17 AM

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I guess this is what I would have liked to see:

Seattle Children's Hospital is pleased to announce an entirely new menus for the cafeteria.The food served will be vastly varied. For example, the ever popular "Hot Dog Bar" will change next week. Instead of just hot dogs the bar will now include, Polish Sausages, a variety of chicken, German, Italian and other varieties. The "dogs" will be grilled when possible. There will be a number of new "Bars" added in rotation featuring Thai, Spanish, Indian, and Greek themes.

Each hot bar will have no less than three prepared roasted or steamed veggies. There have been rave reviews about the roasted butternut squash, fennel, onion and garlic combination closely followed by the always favorite lightly sauteed green beans, feta and shallots. The Chef has determined that these sorts of choices make a huge difference in each meal. Olive oil will be the new butter but then we all need our butter.

There will be a number of new home made soups. African Peanut, Carrot Cashew, Potato Leek and Kale Mexican Chicken soup, Ciopino, Tom Kau Gai, Won-ton, Pho and a number of other delightful selections. There will be fresh bread and rolls baked on site as an option. The kitchen will also be producing a new line of comfort deserts each day. Bread puddings, cinnamon rolls, home made cookies that will be baked all day long and of course the ever favorite, Chef Walter's ooey gooey brownies and apple crisp.

Despite sever limitations in the current cafeteria, the hospital, under the guidance of Chef Walter is completely revamping the choices made available to the staff, families and most of all the children suffering from cancer and the treatments needed to battle this disease.

The hospital, one of the foremost prestigious in the nation will begin immediately to provide healthy, appetizing food for the "Cancer Kids". The dietitians and the kitchen staff will institute a program where a child can call at any time and have the food of their choice delivered to them while it is hot and still appetizing. The staff understands that while it might be ideal to ask a child on high dose chemo therapy what they might want to eat the next day, that because of the treatment and side effects. The kids will know if they want a fresh Ceasar salad or teryaki at 3:00 am it can be ordered and delivered within 30 minutes. No more waiting three hours of a smoothie that arrives on a smelly tray.

Chef Walter and the head of nutrition will set aside an hour each week to meet with the patients and families on the Hem/Onc floor to try come up with other ideas about what will work for everyone.

Finally Children's Hospital will be hosting the first Hospital Chef Cook-off on December 1, 2011. Chefs from all over the region will be invited.

P.S. Effective immediately, the pastry chef shall be preparing a birthday cake for each child spending their birthday in the hospital. (sorry no candles)




________________________________
From: "Bronowitz, Walter N." <walter.bronowitz@seattlechildrens.org>
To: "'quilting_goddess@yahoo.com'"
Cc: "Prado, Patty" <patricia.prado@seattlechildrens.org>
Sent: Friday, November 4, 2011 10:37 AM
Subject: Responding to your concerns



Dear Ms. Lanham

I’m writing to respond to the concerns you’ve shared about the food service at Seattle Children’s. I am sorry you were disappointed in the initial response you received. When I first learned there was patient unhappy with the food they were receiving, I thought it would be most appropriate for you or your daughter to speak directly with the Dietician who is familiar with all the options appropriate for SCCA patients.

In the six years that I have been Executive Chef, we’ve offered a rotation of thirty soups, twenty two salads and bars. We continue to refine and change some of these, but not those that remain popular. As a rule, we don’t change menus or menu items that are still selling well.

What has not changed in the time you mention is the “look” of the café and serving areas. I am painfully aware of this and the much-needed changes have been limited by other construction and renovation priorities. Our hope is now that construction has started on new buildings the needed changes will arrive although not as soon as we would all like.

It may be helpful for you to know that we buy from five different local bakeries and product is delivered everyday. Much of the product we get to make salads come from bags, due to lack of food preparation space this kitchen affords us. The biggest influence on our fruit is seasonality and we are hoping to get to a point where we can be flexible enough to be able to consider seasonality more.

The amount of food that goes to waste on the Hem/Onc area is excessive, and some of that can be from the “what is served” category, but much of it is also from the constantly changing sensitivity of the patients to everything, especially smells.
We are working on a new delivery systems that will greatly cut down on wait time, however, smoothies are not made with ice cream, so they will always be “melted”.

I trust you know that any patient that wants an alternative to a “regular” meal can request alternatives either from our Food Service staff or from Dieticians or Diet Techs depending on their diet requirements/restrictions. Not having the correct food show up is not acceptable. Simple requests being “bungled” are not acceptable. I hope someone was told when this happened and I would encourage you to do so in the future.

I hope you understand that our hearts and best interest is in providing the best experience to patients & families. Obviously in your case we fell short, but we need to hear from those whose needs we didn’t meet so we know where improvement is needed. I hope we can make it up to you in your next visit. I’m sorry you had to take time from an already stressful life to share your feedback, but please know it is appreciated.

Thank you,

Walter N. Bronowitz CCC, CCE, AAC
Executive Chef / Dietary Manager
Seattle Children's Hospital
206 987-6057 OFFICE (Numerals: Arial 8; OFFICE/FAX/CELL/PAGER: Arial 6 – Color R117, G119, B123)
206 987-2035 FAX
walter.bronowitz@seattlechildrens.org
OFFICE 4800 Sand Point Way NE, Seattle, WA 98105
MAIL M/S B-5595, PO Box 5371, Seattle, WA 98145
WWW seattlechildrens.org

The R Words

R: Remission
R: Relapse
R: Recurrence
R: interventional Radiology
R: Rejection


Not liking many of the R words now.  We are way too familiar with all of them.

These have been dark, bad days but she is more than half-way through the Chemo.  Methotrexate is done, Ara-C has been hung.  It finishes after 72 hours.  If her body gets rid of the Methotexate we can go home.  We wait and see and RELIE on good RENAL function.

10 Hours in.... More to go

so we sit.  More accurately I sit, she sleeps.  She has a huge  IV pole with two arms, 4 pumps and two miles of tubing.  Fluid and Methotrexate is going in one side of the Hepzibah and fluids  and anti nausea meds going in the other.  Two lines running.  Sort of impressive.

So on today's menu we have Vincristine, Methotrexate and Deximethazone.  Tomorrow is IT Methotrexate (in the spine), 24 hours of Methotrexate and then Deximethazone.  That is as far as I can stand to look.  There are some other chemo coming because after you put the Methotrexate in, you have to wait until it is out of your system.  Something about renal and liver failure.

Lest you were wondering, you are missing the Asian Appetizer bar....yum. 

Back Again..... But Progress has been recognized.

So we are headed back. 
Monday:  .07 bad cells found.
Tuesday Clinic: ANC 736
Wednesday : Admission for high dose Methotrexate over 36 hours: Ara-C and assorted other goodies

6 days.... 6 nights and then we see.

Lots of "Then we Wait."

So No Remission for Us.....

While this is such a different stint in Cancer World, this no remission thing is way to familiar in a scary way.


Round one:  Remission expected in the first week.No Remission for Us.


Round two:  80% are in Remission by end of the Re-Induction.  No Remission for us.


We do have an appointment today and will be receiving a calendar of the next plan.  The next treatment will be in the hospital and then we will get out of the hospital once she stabilizes and then we wait for her counts to return and then.......


The good news.  Because she wont be having a bone marrow transplant before Christmas, We can have a real Christmas Tree.

Yeah for small gifts.

So Now What

Lots of people seem to think we are done.  Cancer is done, we can get back to normal.

So sad to say, we have not even started.  We are praying and hoping and demanding and asking and pleading that she is now in remission.  We just heard she is not in remission.   She has to be less than .05 and she is less than .07.  Oh so close but not close enough.  

Had she been in remission  they would have tried  to keep her in remission until they find a doner, and they kill all her bone marrow with high dose chemo and total body radiation.  Then she gets a transplant and we hold our breath for 100 days.

Since she is not in remission there will be more chemo and more inpatient time.  We will know more tomorrow.

More tomorrows are coming.  Just enjoying the time at home.

Big Battles and little victories

Cancer World is a place of wars.  We battle infection, bad cells, nausea, headaches, hives, memory loss, aches, mouth sores, diarrhea, weight loss, high blood sugar, low blood sugar, sleeplessness, exhaustion, fevers, fungus and a million other things.  But most of all we fight to keep hopeful.

Cancer World reshapes your view of the world.  Everything you believe to be true comes into question.  Life's fairness, the justice in the universe, the existence of god, karma, and your organizational skills.

It is all so so much. 

Today marks the 32nd day we have been back in Cancer World in full on battle.   She has had 15 doses of chemo therapy, lost her hair, lost 15 pounds, had four trips to the OR/Procedure room and still carries on with great promise and hope.

Today there was a victory.  The accumulation of 338 Neutriphils enable us to De-camp and come home.  We did not even unpack but rather just both went to bed in our own beds.  We fell asleep for a couple of hours.  No rushing, no waiting, no worry about counts or what the next meal will be.  Just sleep.  A small victory for today ad all we needed to do to keep doing what needs to be done.

There are no Answers Only Arguments

In law school we had a professor named Neil.  He was a great scattered teacher that could be headed in an alternate direction with a simple question.  He taught Civil Procedure.  We were discussing a very complicated yet flexible rule.  One of the CPA guys stood up in class and yelled:  JUST   TELL US THE ANSWER

Neil turned around and said:  Mr. Frustrated CPA Lawyer wannabe, there are no answers only arguments.

So here I sit in Starbucks at Children's Hospital 30 days after the news was broken to us.  She has 190 neutraphils and I think that is close enough to 201.

Wanna make bets about whether or not we can get out of here today???

In Boston they did a Hospital Chef Cook-Off. I wonder how Chef Walter would do.

I am starting 
to get some ideas..........

http://www.boston.com/jobs/news/jobdoc/2011/10/hospital_chefs_sick_of_institu.html?comments=all

Did you know today was the 28th? and we have been in the Hospital since the 9th of October!!!!!!

I am loosing time and space here.  Seems to be dragging but I guess that is to be expected.  I am just totally discomberated.  I don't know where stuff is, I can't focus, I am even having the urge to do laundry.  The world is just alllllll our of sorts.

I feel like I am inside a glass jar and can't find the way out.  I am functioning inside my the jar and trying to communicate but then find it is not being successful. 

This is such a different journey than last time and I knew it would be but the reality of DIFFERENT is beginning to sink in.  I have to just forget everything I think I know and go with what is happening.  I have to figure out a way to focus on what needs to be done and get it done.

  I am not able to focus on even little things.  Stuff is scattered between here and the hospital.  Like right now, where is my Kindle and my Ipod Nano.  I think they ran away with my blue  ink cartridges.  What's with that? 

So I I will take a few deep breaths and see what the day brings. 

Searching of "FOOD" at Seattle Children's Hospital

So we have been here 17 days.  I have been kvetching about the food served here and to Mary-Elizabeth.  In all fairness her breakfast has been okay for most part.  She is most concerned that the English Muffin not be frozen and really prefers her toasted cheese toasted on both sides.

I spent a little bit of time reading the cafeteria menus for this week. 

Breakfast:
Pancakes
Cheese Blintz
Biscuits and Gravy
Breakfast burrito
Biscuits and Gravy
French Toast
and yes
Biscuits and Gravy

Did I mention that 3 out of 7 breakfasts were biscuits and gravy?

Hot Bar

Hot Dog Bar 3/14th of the meals
Appetizer Bar 2/14ths
Taco/Nacho Bar 2/14ths
Asian Appetizer Bar 1/14
Fajita Bar 2/14th
Baked Potato Bar 2/14th
Pasta Bar 2/14th

It appears to me that if it can't be dumped out of a bag and deep fried we don't get to have it as an option.  Thousand's of people come here each week.  What would happen if there were fresh greens, fresh fruit that was not limited to Red Delicious and Granny Smith Apples and if the broccoli was steamed instead of just put in cheese sauce and served as soup.

I think for the price of all of this, it could be better.  I am hoping for better.  On day 17, it is pretty sad.

Dancing Doctors and bribes bring results.

So this a place of serious medicine.  A child is not at Children's for the normal "stuff"  There are 50+ specialties here but none of them are for things you want your child to ever experience.  That being said, this is a Children's Hospital of the first Rank.

Giraffe, Whale, Balloon, Airplane, Train, etc.  Lots of art, clowns, mac and cheese.  All good stuff for kids.  Mirth... a good word.  There are a million volunteers that work here to make this a wonderful place.  I was almost assaulted by the Pumpkin Lady.  They were handing out lots of small cute and wonderfully painted pumpkins to any one that had a child whose day would be made with a small gesture of kindness. 

She almost cried when I told her I could not take them because while everyone saw a cute holiday decoration, I saw a fungus carrying menace.

So, in such a place, you can get Doctors who don't know what brings up ANC to do lots of things.  One of them is Dance.  It is called the secret ANC dance and several have been performing for us.  This is sort of like the Sasquatch of dances because only a rare few have seen it.  (It was not filmed less we destroy the careers of young up and coming docs.)

Imagine,  8-12-15 years of education, a quarter of a million dollars in debt and the Chicken dance.  The vision will be burned into my brain for eternity.

Because I believe we all have to do our part, I also resorted to bribes.  I will do anything to return us to home and to some quiet time in our own beds.

Alternate Medicine works..... ANC 79, Monosites 109.... they are coming back.

5 am and other wierd and random thoughts.

So our bathroom is being destroyed and rebuilt.  I hear rumours that it will be wonderful and fabulous and oh so magical.  Thanks to Heidi Behrns Benedict, the girl to call during any design emergency.

Destruction took only a day.  Once the bad mold was found, it was taken out with no mercy.  It ended up in the back yard and will be hauled to the dump.  It is a big pile of stuff and is sort of amazing.  Back yard looks like a West Virgina road side, including the toilet and sink randomly scattered along the side of the house.

We are limping along with only one bathroom and a sort of working shower upstairs. (Next Project).  but we need to deal with one issue at a time.  

I am not going to state the obvious here.  I am not going to complain about being here 18 days.  It might take me longer to settle in then other people but it seems like I might have finally quit fighting the bit.

We are here for as long as it takes.  I will continue to escape when I can and do what I need to do.  

So here is to the docs that came to the room and did the Chicken Dance.  It was great and uplifting and I think as important as my consulting of the magic 8 ball.  Go Docs....... Doctor Dan was especially wonderful.

Also does anyone know why all of the American Girl dolls have hair?  I think I will send them an e-mail.

Why is it that I wake up at 5:00, after Midnight Bacon and before Starbucks opens?

Maybe I can go back to bed now.

Competitive Lukemia Relapse Protocol

Competition is healthy, sometimes, maybe, always???  

So maybe in Cancer World it is just a distraction a way to keep your mind off the next test, the next round of chemo, the next possible heavy blow.  Cancer part one was wimpy compared to this more "Competitive" version. 
First time:  26,000 white blood cells
Second time:  225,000 white blood cells.

First ANC report for M-E  18
First ANC for Allie 72


Now we want more Neutrophils and don't even know how to get them.  

Darn....  We do know that Meb's bone marrow has started to work but I am thinking it is not giving the old college try.  Not working out fast enough, not doing enough drills, not paying attention to the docs and the residents and only sort of paying attention to the ANC dance (Go Dr. Erin)

Yesterday when Mary-E's line would accept drugs and chemo but would not give back blood, she was willing to submit to a real blood draw to see what her number were and they dropped a bit. 

A month ago, no one was thinking about ANC's and platelet counts and how much hair could come out in one brushful.  No one was wondering how much someone could drink and "eliminate" in a day.  No one was worried about how much blood one body could soak up in a day or a week.  It was all just about the next test, the next project or the next baking adventure.

Now it is about lab tests and results, HLA typing, getting into remission, getting to transplant, getting a match, getting the next chemo without ALL of the side effects.

It is a fight and a competition against bone marrow and mechanisms that create cells and divide and do things no one understands completely.

"What make the bone marrow switch from making reds and platelets to Neutrophils" asks Sally... 

"We don't know" answer the Docs. 

 "What make Likemia return?" asks Sally.  "We don't know." answer the Docs. 
"What causes Lookemia?"  Asks Sally.
"We don't know?" answer the Docs. 
 "Will this work this time?" asks Sally.
  "We don't know." answer the Docs.

"God, why did this happen again?"asks Sally.

"I am not telling." answers God.

I don't think this Competition is fair!!!

We Are Calling Security......

We have lost some Neutraphils......  She lost 6 and we know that Allie stole 5 of them but we are still missing one.

Foiled Again

So, we know we are getting closer to being sprung.  We know the numbers are going up.  We know the doses of antibiotics are counting down, we know this but now we can't prove it....

Her Hickman will not give up any blood.  If there is no blood then there are no counts and if there is no way to tell the progress.

So if your Hickman does not work the nurses insist you practice your yoga poses and then you are supposed to cough.  Sit up, breath deeply, moving your arms in the air, doing shipping signals.  So when none of that does the job the nurses order an Xray stat.

Mary-Elizabeth stayed awake since she was told that the Xray would happen at 5 am. She heard the word, Shift change and went back to sleep.  

We walked to Xray and they looked to see if the lines were still in her heart... (pausing a moment to deal with nausea).  The line is fine, the TPA has been ordered.  It is sort of like Draino for the Hickman.   So we wait. 

63 and Counting

So we as Lukemia shapes our world again, we start to change how we see the world.  No planning for the future, no worrying about what bulbs to order for the garden.  No looking beyond tomorrow.  Focusing on just this moment.  This blood draw, this dose of Chemo, this ___________. 

Little goal:  finish the 14 days of antibiotics, ANC 200 and then home.

Big  goal:  Bone Marrow Transplant. 
I sat down and did a bit of research on what it took to get to transplant and have discovered I should stay focused on little goals and not project too far in the future. 

Johnny and Ana and the kids came for dinner tonight.  Johnny brought magic enchiladas.  He is sure that is the answer to the ANC issue.

We shall see.

  (Do you think I should be worried when this is on my child's mattress?)

18, we have 18 182 to go.

Maybe there is an end to this Blue Thunder Jail Sentence.  I am going to start bringing stuff home!!!!After I clean the basement.

More than Leaves are Falling.

Loving Fall. But after only three days, I came home and most of the leaves from this tree are on the ground.Sort of amazing how fast they lept off the branches and experimented with gravity. 

MEB's hair is going just as fast.  Last time, we had  months of shedding, some bathroom drains with some hair. This time it is movie falling out.  She brushes her hair and the brush is full.  It is full, it is so full and the waste basket becomes full of hair.  Good News she has the ability to grow lots of hair.  Bad News, she will have no hair by the end of the week-end.

Nothing, and I mean nothing, did I mention nothing about this process is pretty or familiar.  Nothing is the same, nothing from CP1 (Cancer Part 1), is helping us cope. If anything,it is making it worse because we feel like veterans and find that we are not even on the same planet.  We know cancer, we know how to fight cancer this is not cancer, this is some other creature that has invaded our lives. 

So how do we deal: Anger, frustration, humor, bacon, some quiet time at home to regroup.... like before we deal and try to remind ourselves that each day, every moment is something we have now.

  Gravity is still with us, rain is still with us, leaves grow back and hair grows back.  The leaves will be raked, the head will be shaved and then we will wait, we will wait and see. 

Heartburn is not for sissys

so long long night for Mary-Elizabeth.  She has to have two 5 day "pulses" of Dexemethoson.  It is a steroid that even in small doses creates havoc.  In this dose, it is considered a Chemo Therapy. 


We have a healthy respect for Steroids since they can put kids into remission:  Stop the bone marrow from working.  It also stops and starts other things. 

Starts a private engine running in your brain.  Sort of a personal tornado that comes and goes.  It keeps you up, makes you want to clean things, it is anxiety of great great power.  I used to look forward to the frantic cleaning that happened.  No real sleep happens.  More like dosing.  No ability to concentrate and that is just for a few days following the "pulse".

It also causes heart burn.  Bad heart burn.  She did everything she could to keep the heartburn away last night.  Illegal tums were eaten, Ben and Jerry's consumed and then she did not say anything more until this AM.

Of course we addressed the issues.  When the nurse said we could discuss it with our doctors when they did rounds, I suggested that would not be soon enough.  She was given the secret hospital tums and some breakfast and felt a bit better.  She was told that she was going to ask next time.

She still has "no data" and as Tracy said, that is a good thing.  Bad Bone Marrow needs a long time out.  Fred has suggested that we ask the residents to do the ANC dance.  We are working on that one.

So the house needed some attention.

Well, here we sit.  No white blood cells,none appear to be coming any time soon.  The reds and platelets are dying like Republicans in the Primary and we sit and wait.  No magic cures or tricks. 

While we have been sitting, there is a project going on at the house.  It is sort of my fault because I should just let sleeping rotting wood continue to sleep.  In my inevitable manner, I wanted to address the issue.  I wanted to get the sort of moldy stuff out of the basement.  The bathroom just felt damp to me.   It would not ever dry out.  (My grandfather was a water whitcher)

So I called the guys and they pulled out a bit of tile and then..... I will post some pictures when I am in possession of them. 

Down Stairs Bathroom will be beautiful says Heidi Behrns Benedict.  This from woman than told me to keep an open mind and proceeded to put my underwear drawer in my living room.  More on Heidi later.  She is one of my great angels.

Just what I needed, a bathroom remodel in the middle of the remodel of Mary-Elizabeth's bone marrow remodel. 

Lesson learned:  Just because your child is fighting the battle of her life, make sure you pay enough attention to all the members of your life, you house being one of them.

Hospital Food

So I love food.  We all know how much I love food.  I even let myself eat stuff that no one eats anymore.  I have been known to eat Kraft Mac and Cheese, I have added a hot dog to that on occasion.  I will have a Dick's Special and fries.   I love ice cream and red meat, and lots of other goodies. 

I am not a fan of Seattle Children's hospital food after the first couple of days.  Coming to the hospital is sort of like going camping.  You lessen your standards and just know that a serving of fried spam will not kill you and is sort of a treat.  So some bacon, (best thing they make) a toasted cheese sandwich.  A trip through the salad bar full of Macaroni Salad and pickled beets won't create too much havoc.  It is do-able on day one but by day 12, it is darn near impossible to swallow.

There are things that are good, tasty and even appetizing.  I think there is some basic food here somewhere but I don't find it very often.  Over cooked, over sauced, processed, dumped from a can, Michale Palin would have a hay day with this place.

Fruit, treated and dumped from a bag.  Salad, a bit dry around the edgedsm from a box.  Meat balls, I don't even want to think about it.  and that is all from the cafeteria.  Don't get me started on what comes to the room.

Nothing has been eaten off MEB's tray since she arrived.  I imagine 90% of the food that arrives on this floor has been thrown away.  Presentation.  Put all the food together, open the tray and AWWWWWGGG. 

Did you know that there is someone here that believes corn and canned ravioli are a good idea?  If French Toast is kept in the same place as the bacon it even falls apart.

I know it can be better.  I know because I have been to other hospitals.  Best lentil soup, U of W.  Best Salmon, Swedish, Best meat loaf, Sacred Heart.

I need a project, this is going to be mine.  I would buy food in the cafeteria if I could find some.  I know I am not in a time warp and it is out there, really close.  Fresh greens, green beans, real mashed potatoes, cheddar cheese........

We are going to be here for months.  I can't have leave every day to find food and bring something for Mary-Elizabeth to eat.  We have a tiny tiny space in the fridge so bringing food in all the time is a bit problematic.  This is going  to be a learning process.  I am going to learn. 

Packaging and Managed Expectations

So it is all about packaging.  Nothing is simple.  MEB had to have a patch to deliver some medication.  It took three days to arrive because it was not in their pharmacy.  It arrived to day and is the size of the tip of her finger.  It arrived in a package the size of a thank-you card envelope.  You know the size. 

Everything in Cancer World comes packaged.  Even the packages are packaged.  A bag of IV fluids are sealed and then  they are in a sealed package.  Anything that comes into the room has to stay in the room lest the package is contaminated and then can not be repackaged.  Lots of landfill is created.  No waste management here.

The news comes packaged as well.  There is the big package:

Your child has relapsed.

Buried inside of that package is the :  Your child must go into remission and these things make this happen. 

If you child does not go into remission, then  you must open this package and it has other things inside.

If you make it transplant here is your very special special box of goodies.  Best not look there until it is time because you really don't want to look now it might make you close package number one.

Hair Loss is in all the packages.

Heavy Sigh

Heavy sigh....

I do this a lot. A way to get rid of the bad air and let in the good. I tend to not breath and find that it helps a bit to re-oxygenated my blood. I am a very good crisis manager and am good on my feet. At the end of the day when I have a moment to process and think about how the day went and what I could do differently to prevent the event, I do.

Mary-E had a couple of good days. No apparent side-affects, no need for blood or platelets, no headaches, nausea, wanted to eat steak and leave the room and go to Starbucks. She was able to unhooked from her IV because she was able to drink as more than was required. (These people are so excited by pee.) Being the optimist I was just ready to grab on to that bit of good news and project only great things happening. Maybe going home, maybe a walk in the Hem/Onc halls, maybe some real conversation and some chance to see my lovely daughter. She tends to go to a very quiet deep dark place, sort of like a turtle. When she is feeling awful, she does not complain she gets very very quiet. It is impossible to find her when she is "gone" like that. It is almost like hibernation. As a parent, it is so so hard to just let her stay. As a mom, I want to fix it.

After a couple of good days, yesterday her whole body hurt, headache, nausea, wanting to be back on IV. Using all of her strength to keep from throwing up. She went back to that deep deep dark place and was gone again. I should know by now that this happens but she is 16 days out from the Mitozanton (Blue Thunder) and I would like to think it had done its job and we can get on to mending.

Nothing is going to "fix" this easily. So a bit of sighing was necessary at the end of the day was the result.

So I am up, headed to the shower. Going to have some Tortilla Soup or Stuffed Peppers for breakfast and then head over to the hospital for the day and night. I am going to play Angry Birds and maybe do some reading.

Seattle Bone Marrow Drive

http://marrow.org/Pages/DonorDriveSearch.aspx?key=081-4-01012

There is a drive at Seward Park on Saturday.

Its the Little Things that make the difference

So you think it is the big things.  Cars, Graduations, Birthdays, Trips to the Moon.  When I was a history major, it was the big events the wars, the elections, the disasters that made the history books. 

We don't pay enough attention to the little things.  The stuff that matters but not in a big way.  The person that offers to spend the night. The person that stops and spends five minutes listening.  A dose of zofran and a few moments of being IV free.  The ability to smile and find something positive in an awful situation, the ability to listen.  Just to listen.

 I have been trying to step out of our world of waiting and focus on the lesser events.  So much is swirling around I have to grasp on to something.  We have a roommate and she is having a very difficult time right now.  She is so so quiet and has gone to that deep place where mom's can't find their children.  In better times she is a bright and shiny thing full of life.  She is my role model.  She is the one that says what she thinks, asks for what she wants and needs.  She is older than I am, she is six. 

Last night before I came home, I had a chance to talk with her mom for a bit and when we were both back in the room, Allie got mad at something that was said.   Everyone was busy trying to make her feel better but I took it as a little sign.  She might be very sick right now, she might not be hungry, she might not want to go to the bathroom when people want her to go BUT she is able to be angry.  She is in there somewhere and she is fighting. 

So another day of managing and handling and putting a string of little things together.  A smile, a good cup of coffee, a note to thank someone for their support, while we wait. 

Crisis of Faith

So is it a crisis of faith if you are still are mad at God? I guess if I am mad there must be some sort of belief going on....

As we settle into the issues of what is happening and not happening, I am perplexed as to what I believe right now. I guess I have not given up on God but I am so so mad. It just seems so unfair.

This is such a scary time because even those in the know don't know. Will she have more chemo for several days and then we do more waiting. Here number are still at 0 and when I ask how soon they will be climbing, I am given that very sad and condescending smile. You know the one, the one we give our children when they ask if their are fairies and Santa Clause. 

Mom and I have been having Midnight coffee.  It is sort of nice to wake up and have the coffee already made.  Mom watches the street activity and loves to report.  Last night was quiet but 15 bags of groceries and a couple of cases of beer went into the house across the street. 

Waiting, I hate this waiting.  I guess I need to re-bond with waiting.  It is the thing of Cancer World.  I guess if we are going to be here for a while, a long while, I better keep God as the focus of my anger.  I better keep her around. 

A burning bush or something would be nice for some insight.

Kitchen Lights at 5:00 am and other observations of a reluctant dog walker.

If the puppy had too much to eat and then maybe swolled a treat whole, they need to get up at night.  One time we were up it was determined a walk in my housecoat was required. 

So so glad we did.  The sky was clear, the moon full and Orian was up in all of his glory.  The dogs were a bit confused but would never pass up a chance to walk.

Fluffy slippers, fluffy house coat, and dog walking in the deep deep dark.  Out, shuffle of leaves, down the block to see what has happened in the last few hours.  Quiet street, full moon, orian high in the sky.  Walking and looking.  Amazing how many people keep their shades open. 

The houses are dark but the kitchen lights seem to be the unifying force.  The kitchens are dark, but secret lights are left on.  The lights that draw the occupants in for some cookies and milk, or early morning coffee when the house is still dormant.  A safe place, a place where all good things happen.  Where love is produced in the form of mac and cheese, stuffed peppers, chocolate chip cookies and just some cinnomon toast.  The heart of the home and the place everyone gathers. 

At 5:00 am it is nice to know the kitchens are waiting for the peeps to apear and be welcomed.

P.S.  To the person that put a pumpkin on our poarch, thank-you.  It has been noticed and will be carved at the appropriate moment.

Grandma Mary and I have been kicked off the Island.

Wild and Crazy sneezing has stopped.  Mom and Tracy are going to go to the hospital today.  Grandma Mary was going to spend the night and I am going to gown up and go in later today.

Evidently the tribe members are limiting our time and no sleep overs for me until Monday night. Grandma Mary is also not allowed.  The worry is that she will not sleep and will be distracted by Midnight bacon.  The tribe as spoken.  I guess it is alright.  I let myself get too exhausted and now need to re-charge.  I am just not sure how do to this. 

Some said that they didn't know what I did to re-charge and I think I might have a hard time figuring that out.  I know it starts with some sleep, mindless television and then cooking a good meal, gathering the people I care about and some water aerobics thrown in the mix. 

I really really love to find weird stuff in the kitchen and see what happens when I throw it together.  I don't think it is the cooking but the watching people eat that makes it all good. 

I was surprised to wake up sneezing yesterday.  It was like college after finals when you go home and there is a total break down and you just get sick.  I am just going to go with it because this is where we are right now. 

I suggested to a dear friend that I must have done something in a former life and this is way too much bad Karma for anyone.  I was instantly scolded and told that this is just part of my journey and the lessons are here to learn.  What makes me sad is MEB is on this journey with me. 

Off to the office to deal with some things and then to the hospital to see what is going on and then home for some more rest. 

Still Zero and I woke up with a cold.

So we are still at 0.  Zero. zip, nada, etc.  There are not Neutrophils floating around in her blood.  Neutrophils  are a special sort of White Blood Cell and when they start to rally it is a signal to the rest of the good cells to kick back into production.   She has been 0 for lots of days. 

If she woke up with an ANC (Actual Neutrophil Count) of 200 she could not go home today.  She has to do 14 days of the IV antibiotic she was was put on yesterday.  Good news, she was taken off the broad spectrum stuff, bad news it is a 3 a day IV and pretty hard to manage from home.  So Earliest out 13 days from today. 

Dr. Tracy arrived yesterday and spent the night. At 3:00 am I woke up with a cold.  I don't even know what to do now. It will be gloves, mask and gown for me today while I am in the hospital.  I need to figure out this a bit better.   I guess it was bound to catch up with me.  The last thing Mary-Elizabeth needs is a virus. 

Mom and Alex shows up today.  There are other folks that will step in.  Time to not only call in the troops and let them do something.

Things we learned on this Admission

So we are living in the world of big scary bugs.  Everything is about sanitizing.  I thought I knew what there was to know about bug killing but here is the news.

When you use alcohol to clean something, it is not the application of the alcohol that kills, it is the DRYING of the alcohol that kills the bugs.

15 seconds of wiping and then 15 seconds of annihilating drying.  Who knew? 

New Words...... and the Recipe for Cinnamon Toast

Viridian Streptococcus

So not sure what it is but it does not sound good.  Every time she had a fever during ALL-Part 1, they drew lots of blood and then put them in these cool culture bottles and sent them off to grow things.  Never grew anything

Well in the spirit of ALL-Part 2, something is growing in the little jars.  Not only is it growing, it has a name.  I have not looked to see whether it makes toes fall off but I don't like the fact anything is growing AT all. 

She is sleeping right now.  I am going to work on organizing Bone Marrow Drives and waiting for her back poke.  She is going to be poked in the clinic and not in Surgery.  I think that will work much better and we will be more relaxed about it.  Lots of pokes have happened there.

As you know we face lots and lots of challenges.  One of them is with the hospital food.  As I mentioned 7 years ago, this is the place that "hospital food" came to hide lest anyone try to update.  This place is so 1950's.  White bread, chicken strips, Campbell's soup, iceberg lettuce.  I am sure  that the rational is that this is a children's hospital and of course we should have only food kids like. 

The message they have not heard is that kids have much more sophisticated pallets than before.  My daughter likes pizza but Paggliaci pizza.  She was raised on roasted beets and whole wheat bread, fresh fruit and real corn.  Something crafted from food not dumped out of a bag and called food.  

So yesterday she exercised her option to call and order what she really wanted.  I called and ordered Cinnamon Toast.  What could be more 1950's.  The answer:  We don't make that.  Well when I think about it of course they don't make it.  It does not come from a pre-ordered bag.    I sat on the phone and projected my:  I am going to come through the phone and remove your life force, energy and we started to do some problem solving. 

 It sort of went like this:  Do you have any spices in the kitchen?
Do you have any sugar in the Kitchen?
What if you just sent us some Cinnamon and some sugar packets and bread and butter?

See how easy that is?

Hope that killing our new friend Viridian Streptococcus is as easy.