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.

Medical Flight to Seattle Children's

Hopes:
 We get to go in a helicopter at some point. 
The pilot is cute.
 They have snacks. This does not count as a wish.

Fears:

That we have to do this at all??

Who Ever Said Life is FAIR

Did not have a happy healthy child diagnosed with Cancer twice in less than a decade.

I am sitting at Sacred Heart's Pediatric Hem/Onc Florr looking at the lights of Gonzaga and quietly crying.  Meb is in her new room hooked up to IV's  and chattering with her friends from college.  They arrived at 10:00 pm.  I am giving them some time and space and trying to process. 

Today we heard the words "Very rare, very unusual Late Relapse"  Now isn't that just very special.

She knew,  she knew in that deep dark place that she goes when the world is not cooperating, that it was back.  It is back with a vengeance. 

Last time  26,000 White Blood Cells
This time 225,000 White Blood Cells

97% of the WBC's are useless unformed pieces of useless, wasteful, horrid  schmeckt. 

We are back to square one.  We are starting over.  But this is not a good thing.  She is older, she has a body that has been beaten up before, she is in so so much more danger.  I am just terrified.  I don't know how to even breath right now. 

The plan is as follows:  More liquids, some platelets, some blood, lots of benidryle, some sleep, some more blood tests and then we wait and let those in the know do their job.

They will tell me things and I will write them here and then in a couple of years I will go back and read what I have written.  I hope it is a happy story. 

As I have often said.  God answers all prayers, sometimes the answer is NO.  We  have just cried all day.  All of our hopeful enthusiasm that comes with the statistics that make up Cancer World are gone.  How do we explain to all those parents that go through week after week, day after day treatment of their children, it could be for naught.

They could have a lovely child in school doing well, loving life and then have a weird toe bruise that brings the illusion down. 

So so so so so sad. It will take me a few days to be able to be positive again.

July 18th, 2011

The day has started off in an ordinary manner.  Quiet house, all the lights on. Sleepy residents, Noisy birds.  Surrounded by treasures from the "spare room" upstairs. Mostly pictures.  Pictures that bring back great moments.  They cause the brain to flash back in time.  It is sort of cool.  So for all of you that scoff at such things, it does happen. The image is there, the moment is relived.  What a great thing.

Time for more coffee.

Father's Day and the Last Picture

It did not pass unnoticed.  I was just sad and keep being sad.  We always gave dad really weird stuff.  Like things we had taken from the garage that was he did not know we had stolen.  Or weird garden tools, or books.  Books he and I would only read.  "A Path Between Two Seas".   "My Reading Life" or "War and Peace" 

We each received great things from our dad.  Each person that ever came in contact with Dad was given a gift.  A thought, a conversation, a cup of coffee, a good diagnosis, a kind word. 

It has been six months since his last cup of coffee.  We have all moved on, we have all missed him every day.  We have all been "fine" but there are moments, moments of realization that have come to us all.  Mine came when I ran across this picture.  It was taken by Yim when he went to the Train Station with him.  It made me sob.  \

But then sometimes the best things in the world make us very very sad.  If we can be sad, we can also feel love and joy and all the good things in life. 

Chicken Smuggling.

During my youth(25 to 31) my Father moved the family to Sarnia Ontario Canada. When I say family, I mean Mom and Dad. We all sort of popped in on occasion. Mom was not certain she wanted to go and be a “Landed Immigrant” or that she wanted to move us there. She was well practiced at following my father around the world as he enjoyed new adventures with Dow Chemical. She was a bit resistant and told him she would move if they could find a house on Lake Huron. Since they seldom become available she was certain they could continue to live in sunny warm Walnut Creek California.

Under the heading of be careful what you wish for: a house on Lake Huron became available. It was beautiful, built on an acre, overlooking Lake Huron. Now as a typical American, I did not understand how “Great” the Great Lakes are!.They are sort of like the Grand Canyon and take your breath away. I became even more impressed when they froze and the wind gods decided to blow. The pile of broken lake ice that created small mountains in less than 24 hours were more than 25 feet high was even more impressive. But then let’s not forget the amount of leaves that must be raked in the fall on an acre of land for a house on a lake. Big, all I remember about Canada was how Big everything was. Big trees, big storms, big wind, big snow big leaves, big lake. . And big prices on chickens

After arrival in Canada everyone settled in. Dad was working, mom was being mom. She was adjusting to the seasons and loving the amount of flowers she was able to buy to plant at the big new house. She loved the neighbors, and the flea markets, interesting auctions and the shops where Dad could buy beautiful suits. They explored the whole of Ontario. It was a bit of heaven with a couple of twists. God always makes you appreciate the good things by throwing in reality.

Beautiful Trees = Lots of Leaves

Lovely warm Summers = Snow and gale force winds that will blow a favorite pet away

Warm summer swimming in the summer=impassible yet impressive ice

Lovely fresh vegetable and produce at the market=the world’s most expensive chickens.



It was not the fact our cat would not eat Canadian cat food that caused my mother to resort to crime, it was the chickens.

In Port Huron a mere 3 miles over the bridge and one stop at the boarder chickens sold for 39 cents a pound. In Canada the chickens were $2.50 a pound. Poultry had a strong support in Canada and it was expensive. Even with the exchange rate, it was too much for my mother to bear. So she resorted to smuggling. What could any self respecting thrifty raised in America housewife during the depression do but smuggle Chickens into Canada. What was the worst that could happen, she would lose her cheap chicken. Her husband could lose his work visa and they would be deported. The chickens only were only 39 cents a pound. Of course she had to be a chicken smuggler.

Mom went to the U.S. about once a week or so. She always stopped on the way back and would pick up a hot bird or two or three or four. On one occasion she was traveling with my very proper but practical elderly Grandmother. Grandmother wore rather loose dresses and mom took the opportunity to bring back a couple extra because they could be nestled close to Grandmother concealed by her dress. Mom tucked them in and they headed over the border.

Grandma was fidgety, Mom was calm. She was using her 70+ mother to smuggle birds. What would be upsetting or concerning about that? The border guards are smart. They have a sixth sense They questioned my Mom who denied anything but Purina Cat chow resting on my Grandmother’s wheel chair. He looked at my Grandmother and asked and she simply shook her head all the time looking guilty and holding her breath. I am sure he did not ask her to exit the vehicle because he could see the wheel chair in the back of the car and the cat chow. He looked at her suspiciously but then what could these ladies ever do? He let them through knowing something was up but not sure what it was nor would he ever. The chickens were safe. Grandmother aged a few months but the family was safe until the next trip.

Mom never did get caught.

Even when it is cold and Rainey

The birds still sing.

Have you Noticed

They don't call it remember the precious and wonderful people that you loved and are gone day.  They call if Memorial Day.  Are we supposed to go to a memorial some where?  I think it is too give us a chance to pause and maybe be reflect and definitely think about who is gone from this realm.  So what would Father want.  He wants me to plant a few things and hope for them to grow.  What could be better?

Lessons from the Palm Tree

So here is the deal.  The palm tree is not really a tree but rather grass. It "flowers" every year and keeps growing up and up and up. The old flowrs die and then the fronds that are close or under them start to dye.  The new growth is above the new "flowers".  The dead and dying stuff should come off but I have found that if you leave a bit of it the birds find many many uses for the less desirable parts. Humming birds take the fuzzy stuff for next building.  The Chickadees spend hours filling the crevises with seeds for future use. The finches, starlings, robins, crows use the hairy sort of strands for next nest improvements.  The berries are treasured by the squirles. 

Lessons:  Make use of the old stuff, keep growing, keep moving forward and get a hair cut every now and then.

God's To Do List

There are moments that things come clear.  I took MEB and Jenny to see Archbishop TuTu last night in Tacoma.  It was an evening of music, dance a few speeches and then the Archbishop.   It sort of goes like this. 

God created everything, everything we see but for the world to be wonderful and fabulous, we had to wait for Man, God's partners to really get things going.  Some good, some bad and some really awful.  It took man to invent the wheel, poetry and music.  It took man to create global warming and nuclear weapons.  

The only way to make life better on this planet if we do it.  Hamburgers don't fall from the sky for the hungry masses.  Levis don't fall from the sky.  We need to make sure those things happen. 

It was a simple message that was delivered with humor and with simple directions.  Go be the good things we need done every day.

The horrible things we see in the newspaper every day.  "God's to-do List."