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.

BLUE THUNDER JAIL

so we are here, we are here for the foreseeable future. We are stuck and no way to get out so we are not going to even try.   Do not pass go, do not collect 200 dollars, we are stuck.  Really really stuck!.

Okay so that is what has to happen.  These folks have no sense of humor.  One little fever, one little bout of dangerously low blood pressure and a racing heart beat... come on.. Oh yeah we almost were given a chance to check out ICU.

We are here.  Here for a pretty long time.  Hopefully not the first month but then I am going to work on adjusting my expectations and getting Toasted cheese Sandwiches from the grill for MEB.

This is a picture of the plane that brought us here.  $29,000.00 and change...  Two smart cars or plane ride with no movie, no treats and no drinks.  Go figure.

We are back in the Hospital

I choose to write in this color because we are in the Giraffe wing this time.  Hem/Onc over flow. 

She did the Temp Creep yesterday.  99.1, 100, 100.4, 100.4, 100.4, 100.4, 100.5, 101.5.  The rules are that we don't go until 101.5.  And as we all know I am a great rule follower, so we headed to the hospital about 4:00 pm.  They were waiting and it took them about 2 minutes to make me panic.  Her heart rate was 121 and her blood pressure was 90is over 50 ish.  She was running a Marathon while sleeping.

Lots of activity, and then Tylenol..  the drug we are taught to fear.   We were in her room around 6:00.  That is record time in the ER it is usually a long process. 

They put us in OVERFLOW.  Now this used to be the locked psych ward so it might be appropriate.  The area has been redone and we have a Hem/onc nurse but it is not the same.  I think they did it because I was so mean to the security nurse.  The room is big, the parent bed is fab, but I want back to my people.  I promise to better next time. 

The Hem/Onc floor is the oldest in the hospital.  It is not being remodeled because of the new construction.  Let us just say, all areas are not created equally. But let me tell we love shabby and familiar and competent.  We love that the best.

The answer to every thing I ask needs to be YES and HOW CAN I DO IT FASTER

There is just no room in my life for any push back.  I am going to be kicked out of this hospital by Security.  Now that they hand out badges they are really starting to think what they think and say means something to me.

I am a Mom on a mission.  I have a sleep debt of 2000 hours and my hands are dry from Purelle.  When I walk in to the hospital, they really should not try to take my orange badge away because we are no longer "in-patient" but rather just day visitors.  Just give me a badge and let me get the party started today.  We could be here for more than 12 hours to get her fueled up to last until Monday. 

I am trying so hard to be a grown up but I just melt down.  I need a release and it seems to be Security right now.  I do feel bad but come on, really, they can't just give me something fast and let us in???  I have so much on my mind. So many things need to come together in the right order. 

She needs to get into remission.  To get into remission, she needs to have lots of chemo and procedures. 

It is better for her not to get sick.  Her counts are so so low that she has nothing at all to fight with so a simple infection, could be devastating. Her body can't fight.  If there is a fight then her bone marrow will try and do it and it should not be doing anything more than making reds and yellows (Platelets are yellowish) and not making any more whites.  Their right to make whites has been canceled for now.

Then we have to find a match and then we have to find a match that is still able to donate and then we have to totally kill her blood marrow with chemo and total body radiation and then...... we wait and pray and hope and swear and kvetch and worry and curse and sort pictures and buy junk we don't need and worry and light candles and fold cloths and make jelly and read good books and bad.  I think you get a picture.

In short right now, I am very very touchy and the word "NO" can bring on the wrath of god.  Please don't take it seriously and please forgive me and please know that Sally is trying as hard as she can to keep Sally Ann under control. 

The 12 Disciples and the Road to Transplant

So here we are..... A week-ago I was headed in a mad dash to Spokane.  She was already at the hospital and we were making arrangements for her to be flown from Spokane to Seattle.  Decisions were being made fast and furious. 

So here we are today.  Meeting with the doctors and she is going to get to home at some point tonight.  Our own beds tonight and Friday night.  If no fevers spike then we are free until Saturday when we have to come back to the clinic for blood work and possible transfusions.  Sunday off, Monday Clinic, Tuesday Spinal cord Chemo. 

Right now, she is waiting for the 12 remaining lymphoblasts to die.  Sad but they have to go.  Twelve.  Seems  inoculas but they are the last 12 standing.  They have had a good battle but we all have to die.  Some sooner than later.  Since I have no choice on the way  any of this goes, I am sending in the Kill those guys notice now.   Generally we have to have them dead before we leave but I think I have been enough of a pain to have them let us out of here and the rest have been falling like flies.

See Gonzaga basketball games make her smile!

The Numbers and Dates and Time

Dates. 
Date of first Diagnosis:  August 13, 2004, Friday
Date of First Remission September 13, 2004
Date of Relapse: September 29, 2011.
Date of Second Remission:  Still waiting.

Numbers:
White Blood Cells upon first Diagnosis:  26,000
White Blood Cells on Relapse:  225,000
White Blood Cells on October 6, 2011  .02

Time: 

Length of first Treatment 2.5 year
Length of second Treatment, 2 years.

Seems like it should be easier but NOOOOOOOOO.  It is so so so different.  Since last week she has had at least 8-10 transfusions, 2 spinal taps, a bone marrow, Hickman Placement, 9 rounds of chemo and now we wait.

Some minor chemo during the month but really now we wait for Blue Thunder to do it's thing.  I have to figure out what it really is because it is on a search and destroy mission in her body.

If she is in remission then we head to transplant.  A very long hard road of killing her bone marrow, keeping her healthy, keeping her in remission.  I guess bone marrow is sort of like a very cranky old cat that refuses to die. It keeps coming back for more and more and more.  Even after transplant there are random cells that float around and cause trouble.

Enough of this.  Today I am working on WHAT TIME ARE WE GOING HOME!!!  We would do better in our own beds. 

Buisness Day Three of Cancer and Mary-Elizabeth is Done with Treatment or so She Wishes

She is done.  She wants to just go home.  So for about 12 minutes we thought about packing up and heading back to Gonzaga.  I am getting a job over there where I can boss people around and she will return to school asking for some extra time for her projects. 



Then she took a shower and ate two pieces of Raisin Toast and visited with the Frol Cousins and all the assorted Medical People and they were appropriately abused. The Sierra's showed up with healing food  Burger Master.  What could be better?

I had a very concerning call from the Bone Marrow folks.  We are on a fast track to transplant.  In Cancer world we are months away.  6 weeks for her HLA typing, then match searching, then lots and lots of rounds of Chemo, Radiation, and then when she has no bone marrow at all, we give her someone else's bone marrow and wait 100 days.  THEN we have a year for it to grow up.  Oh, all of this for only $350,000 or so. 

Two years of medical treatment or a new house.... hard to choose.

Going for Midnight bacon....... at 1:00 am.

Bone Marrow Registry

So here is the deal.

Click on the title of this site.  You will be whisked away and taken to the site.  There are rules and regulations 18 to 60, certain health issues not allowed.  You fill out some information, they send you a mouth swab do hickie and you mail it back.

It is free.

I doubt we will find a match for Mary-Elizabeth this is the paying it forward idea.  If we stuff the pipe-line with enough good healthy people, someone will be called at some time.  I have friends that have been on it for 20 plus years and were never called. 

Since MEB is half Mexican and the Mexicans are Spanish and a huge mixture of lots of native tribes it will be interesting.

Her blood has been sent for HLA testing.  It will tell the right people who would work.  It is world wide so it is a broad brush we are using.

Just so you know the Tarot card reader said there was a match but I waiting on the Magic 8 ball.  M-
E is sure it is the magic blanket and I am sure God could not do this twice and not have a match in place waiting for her HLA testing to be completed.

SAL

Boy......What a difference a day and a night makes...

So here we are on Monday.  I am not sure where Sunday went.  People came and went, the Hickman became more at home.  We spent some time listening to doctors and wondering whether or not to listen to them, waiting for the real Monday doctors to arrive. 

The Blue Thunder seemed to go in alright.  The 2nd dose was given on Sunday night.  No spinal tap today because of low platelets.  They are infusing platelets tonight for an LP tonight. Boring Medical Stuff.

The Monday doctors are working hard and are making decisions with alacrety. 

She has to have a bone marrow transplant.  No other option. She relapced on Month 57 of 60.  Leukemia slept and lay in wait and woke up with a vengeance.  Dr. Julie figures it was around about 6 weeks.  Fills the bone marrow, and then dumps into the blood stream.  Leukemia is so busy making Lymphoblasts that it ignores the rest of the family, platelets and red blood cells.  Sort of like some girls when they have a new boy friend.

So since this morning we have accomplished the following:

1. MEB has had a shower.
2. She has had another round of Chemo.
3. I have had a phone hearing.
4. Her blood has gone to Bethesda to be including in some NIH
    We are on the list for a trial study with the National Institute of Health. 
5. We were told that getting to and through bone marrow transplant is about a year and then......

  SHE CANNOT GO TO SCHOOL FOR A YEAR.... something about having no immune system.  Oh, dear

So what are we going to work on:

Not killing anyone
Trying to figure out work
Trying to figure out where this will go
Trying to wonder how not to do it again
Trying to find my purple slippers
Trying to add the alter
Trying to get back into ALL fighting mode
Trying to not cry every day for too long
Trying to realize it could be worse

Trying to Try to Try

Mixed Messages

October 1, 2011:

So we are tucked into Children's Hospital.  We have been here 28 hours.  It seems like a lifetime or more like two lifetimes.  So here is the update.

Hellish first night.
Lots of beeping, blood products, (platelets and packed cells)  hives, more beeping, people in and out.  Lots of blood draws, an additional IV, lots of tears, a call from the President of Gonzaga, more tears, blood draws, a visit from the fellow, some disturbing information about central lines, more tears, calls to and from family and friends, settling into the floor, finding and loosing things like bathrooms and ice machines, lots of beeping, tears, heavy sighs.  Prayers and curses and prayers and tears, more beeping, more checking of the monitors the blood pressure, the heart rate, xrays, scans, more blood work.

Sleep, finally about 1:30 am, more beeping, some sleep.  4:00 am, up with more blood work and no tears, no more left.  Calls to family regarding bone marrow transplant....

Big surgery day:  Deliver the child to the Blue Zone of Surgery.  Meet lots of doctors residents, interns and finally a person we can trust, a nurse.  Off to surgery, Bone Marrow from both hips, Spinal tap to see if cancer has snuck in there and then a Hickman.

Hickman was probably a very nice man and he is from Seattle and I love his invention.  He invented something that keeps children from having to have endless IV's and blood draws.  It is evidently okay to take toxic chemicals directly into the heart Who Knew.......

Out of surgery, more beeping machines and the such, I took a bit of a break after Johnny showed up and even went to dinner out of the hospital and braved the husky traffic so I could find a tank top that worked with Mr. Hickman.

Finally the doctor can to chat. 

ALL for sure.
No Central Nervous involvement

Chemo starts.  Something they call Blue Thunder.

Sleep.  Finally Sleep. 

I think it was that I installed a chakra chime on the IV pole.  It is much happier now.