Hope and then....

Lulu Ysarua Martinez is feisty and fighting!! She has went day and a half no blood pressure meds fever staying at 99 she has 3600 white blood cells she has a 1248 anc which means she now has cells that can help her body fight the infection..she is moving her eyebrows shaking her head flaring her nose and coughed. ..her lungs are still bad but they do have ventilator turned down to 4 0 and she is fighting machine and breathing on her own.. her sisters and dad and close friends all got to see it but the best was her baby sister Rylee Ruth squealing SHE IS DOING IT....today we cry tears of joy and high fives around the whole icu unit...Lulu is a fighter



Lulu Ysarua Martinez had rough night oxygen kept dropping changed ventilator to normal breathe pattern which she needs to be on she has had no other movement so they moving her down for mri...doctors are concerned we are seeing reflexes and not movement.she has been off sedatives for 3 days...
Ugg.....3.steps forward and 2 back will post after mri


Who knows.  It is just what it is.  This fighting cancer thing is so hard. But then maybe life is schizophrenic for a reason. 

Every day, every moment, we have to keep focused on what is important in our lives.  Keep in the front of our minds the important persons we love and value. 

Life changes. Stuff is just stuff. Connections with people is what is important. 

Just saying. It is the little dots and squiggles that make our life whole.  

Sometimes things just don't change but then that is good???

Lulu Ysarua Martinez witching hour as the nurses call it started at 3:30 for whatever reason that's when it begins didn't crash but scared the ba geezuz out of the staff...current situation lung xray at 5 am showed no improvement and pupils still full dilated and unresponsive will update when I can it's just hard because of all the stuff going on...we as a family are tired and mentally drained but we are hoping for a miraculous day....go lu!!!

No real change. No improvement. But then things are not worse.

"Not Worse" is sometimes the best it gets.  There is often lots of discussion about the extraordinary efforts made to save a person. Lots of docs doing making lots of heroic decisions. But how do you not do it with a young previously healthy person. 

My dad was afraid the medical system would geta hold of him and would and he would not be able to make them stop.  This is not that situation.  


Those of us in Cancer World are lucky to have the resources we have.  The care and treatment for our kids at the Cancer Centers is frankly impressive and amazing. The technology, the training, the resources we have to help our children needs to be applauded. 

So today is a waiting day.  I hope it become a healing day.

  

Music is back.

I never realized it was gone but it has been gone for a long long time.   I am not sure why but it was. 

My dad was an adventurer.  He saw the world as a place to learn and explore.  He was curious and always had his nose in a book.  He carried that curiosity with him throughout his life.  When he went to college he squeezed everything possible out of it.  He took lots and lots of different classes, Music and Art Appreciation, Photography to name a few.  When we all went to college he encouraged we explore our passions.  

I took a few classes, lots of history, Zoology even though it was not in my major or minor. I did take Music Appreciation.  I learned a lot in both classes.  I fell in love with certain pieces of music.  One was the Mouldau a piece by Smetana.  It is the musical story.  The river starts as a small stream and moves to a big wild river, then on to a stolid reliable river and then ends up in the ocean.   

https://www.youtube.com/watch?v=kdtLuyWuPDs

It made me listen to music differently and in a way I never had before.  I learned about recurring themes and refrains in symphonies and other such pieces of music.   

I have historically loved lots of different kinds of music.  No fond of Rap or long guitar rifts. I think mostly because I don't like loud banging.  Enough of that goes on in my head most of the time.  I don't need to have it enter from another source. Some Jazz is okay, not all.  Squeaking does not make me happy.    But some music resonates with me in ways I don't understand or why some and not other.   Some melodies, some lyrics, some passages.  I remember sitting in front of the stereo player listening to musicals we owned. 

Over the past few years music was replaced by NPR.  Seldom did I play music in the car.  If I am traveling long distances I most often have Pod casts playing or a book going.  If you asked me to go to a play I am much more likely to go than to a listen to music.   

Something started to happen.  Some music started to creep back in.  It is seldom background noise, it is something that takes part of my brain to listen and it has not had any energy or extra power to do so for a long time. I think all the processing nooks and crannies have been filled with ANC, BMT, CPR, NED and all the rest of the stuff in Cancer World. 

The ability started to wake up bit by bit.  Patty took me to a U-2 concert ( not YouTube) I went to see Char, I found time for Mindy Smith, Rod Stewart finally came to town when I could see him.  James Taylor and Carol King performed together.  I made the journey to see Dixie Chicks.  Bit by bit.  Noise gave way to music. 

One of my friends mentioned he had seen the Vancouver Symphony play James Bond music and I started poking around the Seattle Symphony home page.  I had not looked at the schedule in a meaningful way for a long time. Maybe I could sit and be absorbed by music for more than 20 minutes. Maybe there was room in my being again.   We received tickets for a Pops performance at the Symphony.   I ended up going with my invisible friend Juliette Pinette. (I don't call her imaginary because you are the only one that can't see her.)  It took about 12 seconds into a Sousa March for the levee break. 

 Oh yes, music is back.  I bought two tickets before I left, went with ME last night to see Brahms' Second and have nailed down a subscription for the upcoming year.  

Something is currently compelling about complete absorption into something so complicated and amazing. Something not of this world.  It is a sort of drug.  If I could be there every day sitting in the darkened quiet listening to the amazing sound from horns answering the violins and the triangle.  The simple triangle.   That simple moment of clear sound. 

I guess the Music is back.  Anyone want to join me for a bit of Beethoven or Stravinsky. No fur necessary. 

Hoping our Lasts.... stick this time.

The last dose of Chemo,
The last round of Radiation,
The last Scan,
The last meeting with the Oncologist,

Everyone is very tuned into the lasts.  The first start out in such a shock cloaked whirl of activity, "Last" seems hard to imagine.

We did all the lasts and then we did the big Palisades Party and the Lake Union Party.  We celebrated like the best of them.  The we did the rest of high school and summer camps and summer jobs, and summer vacations and did what we expected to do... Go on with our lives. We had ports removed and we had appointments that allowed such things as normal  dental appointments.  

We took it to heart.  Then...... Out of the blue, when Cancer had been forgotten.  We did it again and it was so so much worse.  We don't even know how much worse it has been because we are not done yet. 

Every time we celebrate the many good results, the ends of ..... fill in the blank.  There is a part of me that says a special prayer.  

Dear Universe:  I know I am a lawyer and we are ones that love endless appeals.  We do believe there are "no answers, just arguments", but in this case, make this be done.  Make this battle with cancer the last and only such battle in the life of this child.

We are headed this summer to many lasts.  I really am not interested in doing any of this again! We all have too much other stuff to do. 

Here's to a bunch of firsts....  Still looking for the cowboy that should have come with my slicker....

Dark Side of the Moon..

Sun again. A bit of sun.  We are finally at the end of Eastern Journey.  We swing around the back side of the falls and head back West.

Frankly I was a  bit disappointed at the falls last night.  We of Western blood are not used to seeing falls quite like this.  From here we are on the top looking down.  I was raised with  Bridle falls, Yellowstone falls,

Snoqualmie falls.  They come to us from mountains high above.   This is something where the water just falls, over a cliff and we are level with them .  the mist was also in the way and the huge Midwest thunderstorm.

The sun woke me about 6 am and I was pleased to see that the mist settled down, and I began to watch the water, the never ending water fall, plunge, leap, did I mention fall, down the horse shoe cliff.  The river is Mississippi wide and smooth and the rapids are short and tentative.  I can imagine it must have been a surprise to see it from river level the first time.  As I look at the people walking by this morning, the size is confirmed.  I will be wearing my new Cowboy rain coat.  I will be seeing it up close.  I will be a grand adventure to our trip.  Our swing around will be eventful as we head back to our home, crossing the country licity split.

This time it is about seeing people we love and care about.  Part of our people that have been with us for so long. Deeply held and valued friends.

Thoughts on Change

"Everything in the universe is constantly change and nothing stays the same and we must understand how quickly time flows by if was to wake up and truly live our live"

Jiko, from A Tale for the Time Being.

But how do we know if we are awake?  I guess that is only one of the questions.   Do our dreams prod us? Do our fears let us know we are slacking or we are awake?  I wish I knew the answer to all of that but I suspect the definition is different for everyone. 

I know we all expect to live each day to the fullest if we are that sort of person.  I think some are more bold than others.  Some are risk takers, some are risk avoiders.  I know for sure my daughter is a watcher and thinker and she does not make a move without much cogitation.  The whole menu is read before a decision is made.  I am more of an impulsive person.   Both methods are good things.

I suffer from a fair amount of PTSD from the whole cancer twice in a decade thing.  It changes you but I think it does so for the better in lots of ways.  It certainly opens you eyes to another realm.  I am entering the alumni role now.  We have graduated, so to speak.  It gives me time to reach back and try to help those in the midst of the process. 

I remember when MEB was first diagnosed and St. Joseph came to the rescue.  The school, the church, the families.  The first on our door step was Rick Boyle.  He has been at our side during all of it, the first diagnosis, the relapse everything. It was an amazing gift and will never be forgotten.  Not to say everyone did not do something of great value at the time.  He was part of my new tribe.  He knew in that way only one in the same situation can know. 

After induction to the tribe a creation of new part of your being happens.  Sort of like a growth.  Maybe it would be better to think of it as some sort multiple new neurons in your brain.  It can't be removed and it sort of becomes your friend.  That bit of growth gives you more compassion, more insight, more creative powers, the ability to help those in your tribe survive.  It makes you know things no one wants to know.

So our time in Cancer World keeps changing who we are and what we see and do.   I am trying to make it less of who I am.  I don't know if I will ever be free of the worry and anxiety it produces.  I find that if I can help someone else and focus on their journey, it helps. A lot.

Change is always changing.  Time is always moving forward. I have no control over much.  Mostly I think I have control but then I am very very wrong.   Everyday I try to do positive things for others.  Good things for myself and keep moving through life   Awake.

How the Blog heals me and a moment for Mario

It is my sounding board.  I have these thoughts and feelings and I figure everyone is tried of hearing about the feelings deep in my soul.  Let's be real, I am tired of them.  The fear, the anxiety, the nagging questions, the unanswered questions. 

Being a good Catholic, I lay it all on the alter for God and my favorite Saints and the Universe to handle.  I have to put them somewhere and this is where they find themselves.  Most of the time it works.  Most of the time, after I write it and hit publish and send it out of my life, I can move on.

I often return to find something and I am surprised by what I have said.  It pulls me back to the moment, I rest with it awhile and then release it again.  Sort of like Paul Sommerfeld's catch and release fishing. (Mary-Elizabeth loves fishing and never understands why he sends them back.  If they wanted to stay in the water they would not be on the hook.  If they were tricked to being there then they should not be returned to the gene pool.  They are stupid fish.)

There are things said here that can not be given power of the spoken word.  It is too painful.  It is a sort of long long prayer, one I am grateful to share with those I love or even just intrigue.  There is huge power in prayer, when the whisper goes out into the vast empty sanctuary and the masses repeat:  Lord hear our prayer.  

Mario has been gone for a year, today. He was one of our people. A big lovely young man that fought through so much and his body said, enough.  He received his double cord transplant on January 23, 2011.  The day before Mary-Elizabeth.  We all lived on the floor, watched the progress of each other, complained about the horrible food. Helped each other, asked those weird questions only Cancer mom's ask:  Counts? BK virus? GVHD?

We all survive, we all go on, we all weep, we all worry, we all pray.  We all know tomorrow is another day. 

And I still have to organize my shoes, now there is a big problem the Universe has not sorted out for me.

The Road To Transplant

I never wanted Mary-E to have a transplant.  We had watched our friend Elise go through the process and it was horrific.  GVH, Mouth Sours, the pain, the side effects (or is it affects), the meds, the pain, did I mention the pain.

I so did not want her to go through transplant that I argued with the poor new fellow John Carter when he told me that was what was happening.  I knew a Double Hickman meant transplant.

But, once you realize it is the only chance, the only way your child will survive, the only option in this day and age, you want it so so badly. It is the only thing you can think about.  Is it possible, can you make it, will it work.

But.  You have to get there.  They make you jump through hoops and crawl through tunnels and into deep basements with spiders and giant scary things.  There are endless tests and lots of hard hills and mountains to climb. 

The irony is your child has to be in perfect health.  There has to be nothing wrong. There has to be no problems with organs or cavities or.....This with children who have been radiated, injected with massive amounts of chemical that make them sick.  No colds, no apparent infections, no cells wandering around trying to cause problems.

You are so so careful because you want it so much.  They make the bar really high so you want it.  They make you beg for it, pay for it, pray for it. 

GIVE ME MY TRANSPLANT NOW

Transplant is a saving grace.  It is the one method of treatment that can save your child.  These docs don't like to loose. They want to save every single little person.  Transplant has given them a tool.  It is the last life boat leaving the Titanic.

15 months after transplant, I am finally being able to look back and see progress.   Real progress.  I know there are challenges and there are lots of scary things in the future.  But transplant and only transplant give us that future.

Alistaire, our sweet lovely child and her family are trying to merge on to this road.  They have been shown the on ramp and are being told they Might have a chance to join, maybe, if they are good and universe agrees.



They have only one road to take.  We are all prayer the ramp clears of all traffic and construction and other

obstacles and http://conglomerationofjoy.com/author/conglomerationofjoy/they are able to move forward.
 

Sometimes little bits of good news is great news but sometimes it makes you very sad.

A trip to SCCA happened today. Lots of news.  Most good.  No complaints should be had. 
Kidney's Happy
Weight down
Liver better
Triglycerides almost normal  (658 at one point)
Cholesterol almost normal
More vaccines can be done
Magnesium NORMAL!!!!

Good Good Good.

But new cells are still too feisty.  No more prednison taper for two months. 

Long term, its okay.  Lots to celebrate. Lots to look forward too. We know the plan, we know how this works.

But.......
She is so compliant, she does everything they tell her to do. She knows she should be happy. She is making progress but it just does not seem like it.

In her mind, she needs to be off prednisone and into the cute Lucky Jeans she tried on a couple of weeks ago.  She has had several people not recognize her because of her cheeks.  She also had the experience of the tall skinny salesgirl be rude to her at Nordstroms.  When Mary-E asked if they carried any 18s in the dress department she was snide and told her no and sent her upstairs to the old fat lady department.


Lots of tears of disappointment flowed last night.  She was so so sad. In her mind she was going back to college this fall with no visable signs of what has transpired.  

Sometimes the tears need to flow. She keeps those tears so so close to her heart so much of the time.  Sometimes she can't be a trooper, a sport, an inspiration.  She just has to be a sad child who had cancer twice in before she turned 20. 


Tears are healing and help release toxins.  They need to flow and help the heart have a some room to beat freely.

Time to pack the car for a short road trip to Spokane....

You Know Mom...

I am done with being treated for cancer.  If it comes back again, I am not doing it again.

Yes I do.

Okay.  So what are we doing to do for Alistair?

I don't know yet. Lets think about it.

Okay. 

Where are we going to have pancakes?


We were just standing out side by our new little free library and those words came out of her mouth.  No big talk, not deep discussion.  I told her today about Alistair's failure to go into remission and the  new plan.  We know what that means on many levels.  While we pray and plead and light candles and pray some more and boost our Hope Levels, we know that this is zero hour, dark thirty, back to the wall time. 

I asked her if I did the right thing by telling her and she said yes.  Cancer takes so much away but adds a new dimension to your life.  It makes you cautious to get close to people in your own life boat but the people in the boat are really your best friends.  When one is having trouble and in danger everyone is in danger. 

There are no words right now.  We are going to go have pancakes and drop by the church and light a whole bunch of candles. 

Level 7.... Middle Ring. Suicides and Profligates.

Middle ring: In this ring are suicides and profligates (1). The suicides – the violent against self – are transformed into gnarled thorny bushes and trees and then fed upon by Harppy (2).
 The trees are a metaphor for the state of mind in which suicide is committed.    Dante learns that these suicides, unique among the dead, will not be corporally resurrected after the final judgement since they gave away their bodies through suicide; instead they will maintain their bushy form, with their own corpses hanging from the thorny limbs.

 The other residents of this ring are the profligates, who destroyed their lives by destroying the means by which life is sustained – i.e., money and property. They are perpetually chased and mauled by ferocious dogs. The destruction wrought upon the wood by the profligates' flight and punishment as they crash through the undergrowth causes further suffering to the suicides, who cannot move out of the way.

Oh, won't this be a pleasant place to spend some time.  Thorny bleeding trees being eaten by shrieking woman/bird creatures  and ferocious dogs.  I am sure if this was well known to the general population they would avoid both.  I bet those guys on Wall Street are a bit worried. 

Those of us in Cancer world feel like we have done our time in this ring of hell.  While we did not commit suicide, we feel we have given the lives of our children over to be saved and it sure feels like suicide.  We have lost control of their lives and have little or now way to know if we have done a bad thing or a good thing.  We let them be filled with poison and radiation that does very bad things for a very long time.

We feel battered by ferocious dogs that rip and tear at our very souls.  Every day you learn something new.  Something that rips your soul out and stomps on it a bit more. 

Let's see what was today's lesson.  Jaxon, a cute little 18 month old with downs will not have to worry about cancer anymore.  They tried just one last thing and it failed.  Twice this family has been told "No More".  But this time it is over. I was lucky enough to see his mom and give her a long hard, I am so so sorry Hug...  Nothing more to do.  Wishing Jaxon only rainbows..

Sometimes it is too hard to think about.  Level Seven, Middle Ring might be an okay place.



1. Profligates.... I know I am supposed to know these things... Wasteful, extravagent, spend thrift.....

2.Harpies:a foul malign creature in Greek mythology that is part woman and part bird. 2. a : a predatory person : leech. b : a shrewish woman.

Missed Transitions

So when did it become March?  I really need to pay more attention.  This is a confusing month to say the least but I should have known.

The grass is starting to grow,
The nut hatches are back (only 2),
The birds are starting to make all that mating racket,
The daffodils are blooming everywhere,
The urge to go to the nursery is starting to rear it's ugly head,
Spring cloths are for sale at Macy's One Day Sale because they have to make room for Summer cloths,
The last of the Christmas Lights are coming down, even in my yard,
Tomorrow it will be 9:00 am instead of 8:00,
The earth is cold but the air is warming,
I have seen a garage sale sign,
Football is almost over and Baseball has started,
People are discussing Spring Break,
I want to clean out my cupboards.

Just another lesson that no matter what, the world keeps turning.  Only this year, we are lucky enough to sort of be out in the world.  Big event this week:  ARGO

Three of us watched it mid-day. 

Today, the Seattle Dog Show.  WE need to go see what our dogs are supposed to look like.  I am also shopping for a mastiff.  I would love to see Lily be the boss of a horse.....

Turkish News...

i'm not neutropenic anymore :) and the Mc test results: engraftment is %80-%90 okey..

 but i dont know that is that have to be %100 ? is %80 - %90 a good rate? i'm excited.. 

still have Bk virus :( and vomiting.. maybe when this problems end they let me go to home :)  it has been 2 months that i'm here..

So Guliany is the 4th person person in her country to have a double cord blood transplant.  She asks me these sort of questions and then I ask our docs and then they tell me and I tell her and then she tells her doctor. 

Sort of funny how that works.  Sort of amazing how the Internet works and what a great gift it has become. 

Good news from any part of the country is more then welcome.

Go Gonzaga and why are they not number 1?  Could someone please explain that to me.

  

Guliany Our New Turkish friend

unfortunatly i'm the 4th person in this clinic -i mean double cord blood tranfer- but in our country there is no experience about that.. the doctor who is living in israil was recommended my transfer protocol.. my own doc. consulted him.. and i don't think that they made this special tests..

and also there is no flavoured water in markets :)) there is lots of brands of water but just still water.. i started to eat a little.. 

do you have any idea about if the engrafment not happen?he is my husband.. we got married just before 2 days ago of the relaps :( this photo taken this agust in my first remission.. now he is in İstanbul (has to work) and me at Kayseri.. 

i miss him so much..

I have been corresponding Guliany.  She had a double cord blood transplant about 16 days ago.  She reached out to me because she found the blog.  When I read this e-mail, I began to count my blessings.  

She is number 4 in her country to have a Double Cord Blood Transplant.  We are so so lucky to be in Seattle. 

Looking for anyone going to Turkey any time soon.  I want to send her some MetroMint Water..... 

Sometimes you Need the Black to appreciate the rest of the view.

I realize now that when Cancer Part I was happening we were in our own little world.  I realize now that we spent very little time at the hospital.  We made a few friends but it was very much a solitary journey. 

Cancer Part II is not solitary.  Because it is so so intense, we have met lots of families, the internet has connected us with lots of families and it has put us in a very different place.  

I have been pondering my newly gained knowledge about Post BMT relapse.  I was not quite myself in class the other night and someone asked why.  I tried to explain without being DebbieDowner and they asked whether or not I "KNEW" Owen and his family. 

I made me think about the question.  How do we know people? What does it take to know someone? Is it enough to talk on the phone? Have coffee with them?  Is it enough to spend a vacation with them, a night in the hospital?  How does the internet connect us?

I think some shared experiences make the connection.  We "chat" with people all over the county and in my case world.  We "spend time" with people online.  I am always drinking coffee so maybe there is a connection.  

We learn and grow and expand our knowledge and human connections with the stroke of a keyboard.  Our world is so much more complex given the expansion of the internet.

It fills in the blanks of the canvas.  Sometimes the spaces filled in are black....  But the blackness is what makes the rest of the world come to life. 

I sometimes hate learning things.

This week-end I learned a fellow BMT kid had relapsed.  I let myself believe relapse could not be possible.  I understood new cancers are a huge probability but after total body radiation and high dose chemotherapy resulting in the total death and destruction of the bone marrow it was over. 

Heeeeeheeee.  I am wrong.  Sometimes it comes back and Doctors write about it and study it.

British Society for Paediatric Palliative Medicine

Approaching decision-making after bone marrow transplant relapse in acute leukamia

Palliative care is not often found at a place like Seattle Children's hospital.  It is sort of like the food.  Lots of lip service an no real commitment.  Palliative care is best understood in Hospice realm.

I have seen and I understand wanting to do one more thing, the magic thing that will make it go away. The magic deeply colored chemo just sitting on a shelf that will most certainly turn it around. I think as parents we just don't want to give up.  We brought these children into the world, we are not going to let anyone or anything take them out without a fight.

This is a hard one.... A hard lesson to learn. 

You Do Too Much....

How often do you hear this or say this to someone? 

I have a lot to do and always find more to do.
I say it when I feel I have not done enough and see there is more to do. 

Trust me there is so much to get done and I often fail miserably in some things and excell in others.  Laundry no.  Keeping in touch with a scared confused young adult in Turkey at day 9 of her double cord blood transplant, I am jonny on the spot....

You can never tell what is really going on inside the mind of a cancer mom.  We are special kind of creature that is busy trying to remember what life was before cancer came and trying to get through each blip and disaster that comes our way.  We feel bad that our child has cancer and when you ask about it we try to make it okay for you.  We try to hit the good points and not dwell on the dreary reality.  Some would call it denial.  But know we know the reality and will deal with it later.

Part of how we deal is doing something we can do.  Read, needlepoint, quilt, write endless e-feedbacks and try to make things better. Write long endless blogs.  Garden.  Fail to garden.  Cook, shop, walk the dogs, go to events, organize events, spend time on Facebook, Internet research on better cancer treatments, clean house, organize pictures, scrap book, fill boxes with stuff that should be put in scrap books, finish projects, start projects, walk the dog, go out to eat, order in, shop, text, answer the phone, refuse to answer the phone, write letters, forget to mail the letters, take long showers, forget to take a shower, start a bunch of books and never finish them, fold a thousand and one cranes, forget how to fold cranes, worry that you did something to cause cancer, wonder how everyone else's children are doing, worried that they won't make it, wonder if life ever will return to normal, try and figure out if there will ever be a job that will take you given you don't know from day to day whether or not you are available.  

So  

It is a weird life.  We do what we do to keep from going crazy.  Thank-you for your love and concern and support. 

We all do too much, lets hope it is too  much of all the right things.....

Rebecca started on a New Journey this evening.

What started out as an email from someone looking for guidance and understanding about how transplant affected young adults turned into a friendship.  

Elizabeth, Rebecca's mom let the world know that Rebecca's battle with cancer is over.  Her mom's battle to help eradicate this disease is not.

Only thinking good thoughts about Rebecca and her family and they settle into this most horrific of journeys.  

One of the basic rules is that Children are not supposed to die.  It is just not supposed to happen.  

Central Line University

Docs have secret ways to inject poison into children.  In the outside world we are all familiar with the IV.  Well IV's fail, need to be changed a lot, create problems when the veins figure out something is going on and they rebel. 

So.... there are 4 things kids in Cancer World people receive.

1. PIIC Line.  It is put in a child's arm like an IV but there is a catheter that goes into the child's heart.  The docs love to put lots of chemo into children and if the end of the line is in the heart it is dispersed very quickly throughout the body.  Mary-Elizabeth had one of these from August 2004 until December.   They didn't want to give Mary-E a port so we had to make the PIIC Line last and last and last.  It was it's  own kind of nightmare.  It had a dressing that had to be changed and her skin did not like it and on and on. It had to be flushed twice a day.

2. Port-A-Cath.  So this is what she has now.  It is commonly called a Port.  It goes under her skin and is attached to her chest wall.  The tube/line goes into the heart. Notice there is a theme here....  It is great because nothing is left hanging out.  When there is a need for access.  The fluids go in and out of this.  They have a special needle that goes in and makes all of this happen.  

Ports are wonderful because once the scar heals you can go swimming.  Showers even happen earlier.  

Hickman's.  Named after Dr. Hickman. I think he might be alive and lives in Edmonds.  He is retired.  The Hickman can come with one spout or two.  I am not sure why some people get different ones.  I knew from Cancer Part 1 that a Double Hickman meant a transplant.  We all know how much I didn't want her to have to have a transplant but that is old news. When our new nervous and flustered  doctor told us she was going to have a double Hickman installed, I knew what it meant and was not happy.  It did turn out to be a good thing.  

In Central Line world she has been very lucky.  No line infections, some stubborn times but all in all they have been just fine.  They all fail eventually.  The PIICs require twice daily attention with saline and heparin   Ports must be accessed once a month at least.  Hickmans are on a once a day schedule. 

So short hand;  PIIC lines, Ports, Hickmans.

Our friend Bob suggest that they should install a USB port and then do all the blood work via computer.  I am sure he will be the next to retire. 


  

She is Awake, She hurts, but only when she Move.

She is good. The Port is inserted, in the same place as the scar from Port 1.  She should have much less trouble with blood draws right now.  It might seem extreme but her veins are shot and I suggested they take her to the OR each time she needs a blood draw.  The Surgeons were concerned about putting a child size port in an adult child on steroids.  We were having none of that nonsense.  Seems to me that they should order a few adult size ports.  They also did not think it was a good use of hospital resources to take her to the OR and some nitros each time she had a blood draw. 

Port has been installed.

I am going back to bed.  I forget how much I don't sleep before surgery and other important stuff. 

I think I handle it but the late nights and weird dreams and frequent wakings tell another story. Another Good Rem period is all I need to be good.