Level Three..... gluttons: First Treatment Way too much Chemo

The "great worm" Cerberus guards the gluttons, forced to lie in a vile slush produced by ceaseless

 foul, icy rain.   Just as lust has revealed its true nature in the winds of the previous circle, here the 

slush reveals the true nature of overindulgence in food and drink, but also other kinds of addiction.


Yes, been here.  Felt the foul, icy rain, the mud.

It all becomes way too much and one feels trapped under the paper, the internet research, the meetings and conferences the Waiting.  works, the endless blood tests, the endless..... shot, pill, procedures..

There are time we get to escape but sometimes it seem and is endless.  

There is so much about having a kid with cancer that we don't really understand and maybe go over board on things.  

We all have our "cause".  I am about the bad food service to the children at Seattle Children's Hospital.  Some are about the fact their child only has home tutoring for 18 weeks but cannot be in school and so she looses a year of school.  Some are bound and determined to remind those that park in the parking lot, they are a huge gigantic mega truck and not a  compact.

I have to admit to drinking way too much coffee.  It might have been a way for me to give myself some time away from the room where unspeakable, horrible things were being done to my child. 

We all have addictions.  Overzealous obsessions besides Purell and over cooked food.  

I have cut back on coffee.  I think it is a start on the way to escaping the icy rain and slimy.

Wonder what the Pope did?   

Lust....? Really. End of first Month when you lust after normal!! Dante must have been a Repulbican.

Second Circle (Lust)

Gianciotto Discovers Paolo and Francesca by Jean Auguste Dominique Ingres

In the second circle of Hell are those overcome by lust. Dante condemns these "carnal malefactors"^[9] for letting their appetites sway their reason. They are the first ones to be truly punished in Hell. These souls are blown back and forth by the terrible winds of a violent storm, without rest. This symbolizes the power of lust to blow one about needlessly and aimlessly.


Lust.  I really think we have to re-thinking this.  Of all the things in the world, this is the second level. 

"Carnal Malefactors"  have to love those words.  How can you not.  But I am afraid part of this does apply.  Every parent in the world has felt the punishment, even if they didn't deserve it.

These souls are blown back and forth by the terrible winds of a violent storm, without rest.

Boy if that does not feel like our lives.  Some days there is just no relief.  And when you feel like you have escaped another gust comes again and batters you even worse. 

We have had one of those weeks.  It all resolved around food in one way or another.  

So ME is on several drugs that make her kidneys stupid.  She "wastes" magnesium.  So to fix that hole in the dike, she takes 1200 milligrams of the stuff and eats lots of popcorn and dark chocolate.  It also makes her very cautious about the amount of fiber she eats because it causes some very undesirable side-effects.  I am buying white bread for the first time since 1883.

She is going to be put on Rat Poison.  Warforin.  Lovely drug but it will let her body heal from all the shots and gigantic, continent size bruises.  No shots, that is good.  BUT the levels have to be steady.  Rat Poison inhibits Vitamin K which is made in your stomach.  So there are things you cann't eat like spinach and all other green leafy veggies.  Cranberry juice, avocado and soy lots of other things.  She can eat all those things but has to do so in the same amounts each day.  If she gets sick or more active that changes things.  She has to have a finger poke every three day until the levels are figured. 

Then one of her drugs has made her triglycerides go way way, sludge for blood, high.  So what should she eat to help with that:  Fruits Veggies, lots of greens, low carb, non-fat dairy.... Well lets see all the stuff you can eat here are eliminated by Rat Poison and Magnesium....

It is pretty much Brown Rice and Salmon, three leaves of spinach and some green tea, in regular measured amounts.

"What about pizza?"  Can you make it yourself with low fat ham and some non-fat cheese?
Oh, did I mention, low carb....

It was too much tormenting windy gales for one day.  She just went to bed and cried. 

"Mom, I do everything right.  I take my meds, I follow all, well most of the rules and now this.  I am afraid to eat anything!"

Pancakes, no butter, no bacon for breakfast.  I won't talk about dinner.

She feels under attack.  We will spend a bit of time working on finding out what works...  French bread has no fiber.  Salmon is wonderful.  A bit of white rice won't kill her. 

On a better note, no asteroid hit the earth.  That would have ruined our day.

Nine Levels of Cancer Hell.... Pre-Diagnosis : one Level at at time.

I always looked at Dante's circles of hell with a certain sort of skepticism  Mom told us that there was no Hell.  I love my mom and I am sure she is right.  But I am not very worried about what happens after this lifetime right now because I have been way too busy fighting the hell I find myself.  

Cancer World has lots of levels, all of them are hell. The first level is Limbo.  Most people in Cancer World spend some time in Limbo.

Dante described it as:


In Limbo reside the unbaptized and the virtuous pagans, who, though not sinful, did not accept Christ. Limbo includes green fields and a castle with seven gates to represent the seven virtues.


We spent 2 months in Limbo before there was a diagnosis   It was defiantly hell.  Tests and more tests and more waiting.  Some don't enter Cancer World this way.  They are plunged to much lower levels very quickly and with no warning. 

We all return here for some respite. Waiting for numbers to recover, waiting for a scan to be read, waiting for the results of a bone marrow aspirate.  Wondering if the new bump behind the ear is a return of cancer.  We all spend lots of time here.


None of us think this is a good place, even it there are castles and unicorns.  It is still Hell and there is no good reason for us to be here or to have our children here. 

No amount of convincing would ever make me believe there is a God that would let a child, an innocent, spend time in a place with no hope of escape.  Maybe it is this sort of anger propelling all of us forward trying to escape Cancer World in one piece.   We don't believe we should be here and we want out. We don't care if there are servants and lackeys and unicorns and pastry chef's.  We don't care if people will take us on wonderful fabulous trips and let us sit in special papers to see Madonna!  

We want out.  

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..... 

A certain Kind of maddness Creeps in after a few Days at the Hospital

Being inpatient at the hospital when your kid is being treated for cancer is so difficult. It is impossible to maintain your sanity and sense of humor for more than 6 days.  Max.

First you have the worry of being there if it is not a regularly scheduled admission.  You are there because you child has some unusual unknown bug.  While you might be there for a fever, in Cancer World they are dedicated to finding out exactly what it is.  They draw blood cultures and bunches of Petri dishes full of lemon jello sit around and stew until something grows. 

Lots of times nothing grows and you are still stuck.  If the fever is high enough they put the kids on a broad spectrum antibiotic, sort of like a Z-Pack.  The shot gun approach.  These kids are then stuck until they finish 14 days of the stuff because usually it is IV.  You are already going to be there 8 days beyond sanity and it is just a bone they throw you and they don't mean to ever let you out. 

Then a few days in (3ish) they figure out what you really have and a new type of antibiotic is chosen from the shelf.  It has been pre-tested to see what works the best.  Then you wait again, sometimes the days start over.  

At that point you know for sure that you are there at least two weeks.  But.... it might be longer depending on how low the ANC is at the time.  If the counts are lower then 200 your are stuck like a bug on a windshield waiting some more. 

So you wait.  You wait for every blood draw. You wait for every temperature reading.  You wait to see what comes from the kitchen. You wait to see if she chooses "the dress".  You wait for rounds before a shower because they might have some news. you wait for the platlett YOu  wait for the other closet of shoes to drop. YoU wait for the next does of meds.  You wait for a pint of blood because the bone marrow is not working. You watch more  Dark Shadows and fold more crane. 

During the waiting you worry.  Why is the bone marrow not working? What do we have to do to get out? What did we do wrong? How could this happen to our child?  Did we make the wrong/right decision? Or my favorite:  Remember that day you helped someone put Round-up on their yard and two weeks later you found out you were pregnant and now your child has leukemia?  

When you know how long the admission is going to be 80 days for transplant or 4 for chemo, it is very doable.  You go in, you know the drill, you know the goal.  Because you are headed into a certain specific direction it is survivable   This is what we have to do to go home. 

It is when you have no idea, no control, no sense of when it is going to end.  If there is a bug then you have to be in isolation   (Not even able to use the on-floor bathrooms. I decided not to say "pee on the floor") Everything anyone brings you has to stay in the room.  Everyone has to gown up. Your secret supply of real food has to be heated by a nurse.  You cannot even go to the family room and fill your water pitcher.  It is a fresh kind of hell.  250 square feet with a bed, a chair beeping things and lots of other crazy stuff. 

The minute you hit the room after an eternity in the filthy and more then disgusting ER, you are fighting to get out.  

The other part of this whole thing is they keep talking to us about Shangri La, Or the New hospital wing.  Even though the Cancer kids raise millions in funding and their care pretty much carries the hospital budget, they are in horrible outdated rooms.  They are awful. I don't think they have touched them since the 80's  Mauve has gone there to die.

 The bathrooms are closets, the fixtures are falling apart. Because they get to move into the new part of the hospital, they quit fixing things on the floor about a year ago.  There is a room where 4 people stay that has not had hot water for more then a year.  "too  much to fix it" I was told by the plumber to just use Purell.  Hello!!! anyone read all the information about how HAND WASHING is the only really way to go?

Oh, dear, see I still suffer from Long Stay in the Hospital PTSD.  When I read about someone being there and slowly  unraveling as they wait and pace and try to maintain their sanity, I start to go to that dark place. 

Okay, enough.  Just know until you have done one of those hard long stays, you will never ever understand.  But thanks for trying...... 

Bits of Glowy clouds

They are floating by the window.  Not able to capture but enjoying them as they slink by.

We are heading to the museum today.  A place to walk, enjoy, appreciate at it's best.  She secured her housing and is working on contacting her teachers.  She is feeling secure enough to plan for school in August.  

It is going to take a lot of effort to send this child out the door this time.  She will fight me like all "going back to college" kids and I will push but this time there will be more hesitancy on my part.

As she buys rain boots and other assorted "needs", I am planning in my mind what we do for her to make sure she is safe.  This time I will be having meeting with the medical personnel as well as Father Bill.  I will be meeting with her BMT doctor so we don't have any issues with her ongoing care.  I will be also lighting candles and gathering a bit of Holy Water. 

I have lots of months to prepare her for this event.  I am not sure who is more excited.  I think I am just thankful she is able to go back to school. It makes these past two years just unfortunate "Gap Years".  

I think returning to school is the best way for her to heal.  Every time her peeps come to see her or we see someone it makes her so happy. Skype, Facetime, Facebook, all are not enough human contact for anyone....

Go ZAGS

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. 

She is doing great

Skin a bit hinky but it comes and goes.  More energy and she is baking.  What more do I need to say?  She feels better.  She feels like she did before Christmas Eve when the flu hit her.  I could not ask for more.

If you think I am enjoying a bunch of warm Mary-Elizabeth Sierra Lanham cookies, you are so so wrong.  She is mailing them to all her friends.  I seldom get cookies.  Something is wrong with this picture. 

Quiet Moments.

are sometimes scary.  It is during those time the darkest thoughts can creep in and take over.  They are also the most creative and most productive. 

This is when I have these thoughts that in the outside world make no sense at all. For example, today I was drinking my coffee and was checking in on my Facebook page.  Small but present post. 

There's a new post about Owen on Caring Bridge http://m.caringbridge.org/visit/owenohara

Owen is the child of Jackie. They live back east but the internet has connected us.  Owen had a transplant, he has been sailing through.  Life has been good, they are getting ready for a Make-A-Wish trip. 

Then BAM..... Leuikemia is back. 

It just made me furious.  Maybe because of where I sit, I see this sort of thing but "Why in the Hell". 

I know there is no one to blame.  I am certain there is no God or Supreme being involved.  I know "things happen"  but for most of our kids, our cancer kids, they have had ENOUGH. 

I wish cancer was sort of like the mumps.  You get it once and then you are done.  You spend a few days on the couch listening to radio dramas (I had it when I was in 3rd grade and there were still radio soaps) and then you are done.  I think Cancer is more like Chicken Pox.  You have it, it is over but the threat of Shingles lingers on and on until your die.

I have had enough.  I have had enough of relapse and new spots on scans and children dying.  It is time for all of this to go away.  I want to return to a world of Unicorns and rainbows and sparkles and shiney things. 

Process....vs. Event.

I have been strangly upset and stuggled the last couple of weeks.  Sort of freaked out and tense and worried. A general milaise. 
 
We went to watch Lincoln the other day.  I had not had the ability to consentrate or focus on anything.  When we came out of the movie I read the E-mail about Rebecca. 

I know this will sound awful but I felt calmer. I knew we were headed to the next level of this journey.  Her parents knew it was over, she was no longer struggling.  It is a calmer place. 

 I knew she was not going to survive the transplant.  Too many organ systems damaged and too much going on with her.  Her ball of yarn was so tightly tangled the yarn had to be cut and she had to go.  It took almost two plus weeks. 

That is such a disconcerting time.  Everyone comes to say goodby not knowing if they should or it is goodby. Everyone is there and supportive but as the parents you still want to push them away because their love and support is pre-mature.  Hard hard stuff.

Death is not easy, nor should it be. There is this long struggle between coming and going, staying and leaving and lots of waiting in-between. You want it over but then you don't want them to leave. 

Birth takes 40 weeks and a day.  Leaving is a lifetime, only you never know how long it is going to be.

She is planning to go Back to Gonzaga......

Sometimes I worry that if I make any sort of plan, it will be hijacked by a complication.  Christmas, a hockey game, a dinner party.  

It is sort of discouraging not being able to plan.  

Since she was diagnosed and taken out of school, I have been pushing for her to get back. 

She left in September of 2011.  I was hoping she could get back in remission, have a transplant an be back in school by September 2012.  They nixed that and said a year from the transplant date. I tried to move up the transplant date but that did not work.  So then I tried to get them to agree to let her a couple of weeks earlier.

Well she has been sick or stoved up because of the port for most of the month of January. That would have been a huge mess.  

So, in her own plodding way, she has always said she is going back in August.  Never wavered from that plan.  August.....  She has made the first big steps by arranging her housing.... 


I realize now, it is not enough to go back, she has to go back and stay.....  

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.  

Generalized Anxiety and her name is Juliette...

I don't generally "feel" my anxiety but I am aware that she is sitting on my shoulder.  Her name is Juliette Pinette.  She was identified as my invisible friend when I declared her presence at age two and a half.  She was around for a while and everyone thought she disappeared when I was older.

I think she has always been here.  She is the bad scary feeling when things are going wrong or we think they are going to go wrong.  Sometimes a bad feeling, sometimes a twitch or a jerk just as we drift off to sleep.  She is the one that really really likes ice cream and cake.  She will eat other things if they are not around but cake.  Good Chocolate Cake.  Her very very favorite. 

She snaps at people, she makes it so I don't sleep or she makes me just crawl in bed and go to sleep to shut off my brain.  She has moments when she makes it so I can't breath or I must shop for things I don't need.  She can be fun which explains why there are 8 quail eggs in my fridge ready to be made into tiny deviled eggs.  (Don't Ask) 

The last week Juliette has been particularly active and present.  Mary-Elizabeth's port placement, some after port placement stuff that was weird and concerning.  Rebecca is deteriorating, as dieing is a process and not an event.  Her mom is having such a hard time.  Other folks struggling.  Just stuff. Or maybe I am just now able to "feel" the anxiety.

What I have observed is I can measure my anxiety by how long I can watch a show with situational tension.  The "the music tells me something is going to jump up" or the ever present " main character is going to be caught and then the show will have to end" moments.  There are situations in South Park that are too stressful. 

I need to send Juliette off to play somewhere.  Mary-Elizabeth is regaining her strength after a month of sick.  I am back in school and figuring out this job thing.   Rebecca is going to finish her journey and I can be helpful to Elizabeth for as long as it takes. 

It is under control, it is going to be alright, in fact things should be more then grand.  Lots to do tomorrow...

Hockey Night in Mountlake Terrace

Hockey is not something many of us in the West understand.  Hey, I was one of them. I did not understand how it could be fun to watch guys in bad cloths chase a little black thing on the ice.  I have said it many times before, You have to be there. It is not something to read about or watch on TV. You have to be there. 

It is a true sensory experience.  The noise, the intensity, the collisions, the slamming against the wall.  The Zamboni ... but after you get adjusted and start to settle into the game, you realize it is an art.

These big guys are traveling at breath neck speed, in both directions.  Their entire focus is on the a 4 inch piece of frozen rubber.  Their ability to move it around the ice and slam it with precision is always breath taking.  They are such good skaters.

Several years ago, maybe when M-E was a Junior, we went to see the University of Washington play in a tournament in Eugene. 
It took about 10 minutes to be hooked.  I am still amazed every time I go.  

I am not a fan of fighting and it does happen and everyone gets to go the bad boy box or they are escorted off the floor.  They are guys on a mission and every time someone gets in their way or uses a stick in a manner "not prescribed as appropriate".  There is a bit of unnecessary roughness but they are traveling so fast and so focused, they have a mission. Love this kind of focus. 

Our team has really improved over the years. They work together and they shoot for the goal much more then in the past.  The fans have increased tenfold.  Had we stopped for dinner, we would not have had a place to sit.  

Mary-E loves hockey and we tired to go before Christmas.  She had warn herself out that day and just went to bed.....   She managed her energy better and we made it through two periods.  So happy we could see our team do well....

Hoping.... Something we have to do as Cancer Moms

Definition of hope

noun

[mass noun]

• 1a feeling of expectation and desire for a particular thing to happen: he looked through her belongings in the hope of coming across some information [count noun]: I had high hopes of making the Olympic team
• [count noun] a person or thing that may help or save someone: their only hope is surgery
• grounds for believing that something good may happen: he does see some hope for the future

• 2 archaic a feeling of trust: our private friendship, upon hope and affiance whereof, I presume to be your petitioner
  
  
  
  
  We do it all the time. We do it every day. We pray, we plead, we often live and breath hope. WE have to keep hope close to our hearts because the other side is so so terrifying. 
  
  
  Often as Cancer Mom's we have to ignore the obvious because we can not fall apart all the time.  I have been having conversation with Rebecca's Mom.  Rebecca is so so sick and her mom has been told the battle is over.  Just as she is ready to realize it, some small, tiny improvement will crop up and then she is back to hoping again.  It is such a push pull situation.  
  
  
  The conversation goes like this:
  
  
  How are you?

  Oh, I am fine,

  
  How is Rebecca? We have been sitting here waiting for her to die.
  
  

  

  What are they telling you?  Well her liver has GVHD, she has cirrhosis, the Hepatic Vascular Disease is very bad but her bilirubin is dropping so I think she is going to be okay. She is on a ventilator  she has aspergillus in her lungs.  Her body is covered with petechiae ( little bruises) and she is bleeding internally.  Her kidneys are not working and.......................
  
  Oh, dear.  It all seems so hopeless.  It breaks by heart but in such circumstances hope is the only thing that attaches us to this mortal coil.  Hope is the only thing that keeps Mom's from falling apart at the wrong times.  Hope is all we have at times like these.
  
  I can't really imagine being the mom in the situation.  I have played the scenario through my head a few times.  But like many things in life, it is not something I can understand if it has not happened.  Sort of like all those people who think their life will be a baby will be the same as it was before the arrival.  Until it happens you don't understand... you only have observation and what ever you have gained through books and movies etc, not the same thing the experience.  
  
  Hoping (desire) for a good outcome......
  
    
  
  
  
  
  

  
  

  
  

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. 


  

Happy Birthday Mary-Elizabeth PearlAnneEllieMae Sierra Lanham

You are almost a year old.  The transplant was at 3:00 pm so let's not jump the gun.  

I don't quite know what to say.  I am sure you don't either.  I wasn't too interested in transplant day.  I was much more interested in Day 18 when cells showed up.  Trust me the days between 1 and 18 were pretty horrific.  

You were one miserable child and for good reason.  
Everything was an effort.  
Everything was difficult.  
Everyone hovered, a lot.
Everyone wanted to poke and prod.
Everyone wanted to weigh in on how you were doing.

You did it.  You invited PearlAnnEllieMae in and made them feel at home.  They are still being bothersome but that is how toddlers react to the world. 

A year. 365 days.  It took only 40 weeks to bring you into this world.  I can say this process was much more difficult and trying. I am expecting much better behavior this next year. 

Love you. Cherish you. 

I am so glad you are still here, even though you are going to become a toddler and get into everything. 




   

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. 

Don't Get Me Wrong, there are good Stories.

I am not a gloomy person.  I am a happy, well adjusted human being.  Generally life is good or we can make it good with a little effort.  There are some weeks that are better then others.  

People don't want to know the dark side.  I totally understand.  Hope and statistics is what gets us through the days and nights and each scan and each impending blood draw. Those of us in Cancer World have no choice.  No choice leads to acceptance, mass rationalization and coping mechanisms abound for humans.   It is what it is so DEAL.

Lots and lots of kids do their time and move forward, just like in the movies and on TV.  I remember the lovely one episode of Grays Anatomy when they did a bone marrow transplant in one episode.  Child was in the hospital for about 56 minutes.  

This process, like so many others, is long and complicated.  It more like remodeling your bathroom.  You start with a water spot.....  4 months, thousands of dollars later it is fixed.  But sometimes the fix reveals the uranium mine under the foundation and the whole thing has to go. 

Mary-Elizabeth is in that awful part of construction where they are doing the trim, the fixtures have not arrived and there is that pesky problem with the toilet still rocking.   All will be done in good time but somethings can't be rushed...

My Rebbecca is on the East Coast

So Pam S. a parent from Seattle Children's thought I was talking about another Rebbecca being treated at Seattle Children's.  Seattle's Rebbecca is 18, had a transplant and then disappeared from the floor to the ICU. Kids disappear.   

It is another example of a subtle problem we have while in Cancer World.  The hospital won't admit there are ANY children at the hospital because that would violate HIPPA.  We live on the floor and many at Ronald McDonald House, chat in the clinic, Facebook each other and have a myriad of ways we ferret out information about what is going on with "our kids".  


I can remember coming out of Mary-E's room one night and there were a million people in the room next door. Doctors and Nurses and portable machines.  There was huge amounts of frantic activity.  The next time I was out of the room no one was around.  The room was empty and it looked like a war zone.  No nurses were around and it was just creepy. 

Kids just disappear and no one wants to talk about it. How sad is that.  Some one's child is critically ill or has died and we pretend nothing has happened.  Trying to "protect" cancer parents from what they know is a possibility from the moment we ask about outcomes may need to be reconsidered. 

The silence scares us more and it removes a very important support system from the family. 

Rebecca is going to have to do as Dr. Tracy used to say "A do over"

There is just too much going on right now.  She retained almost 26 lbs of fluid over 24 hours.  Kidneys are tired, blood pressure is up and down and not in a good way,  spleen is not doing what ever it does, liver is not functioning and on and on and on.

I spoke with Elizabeth last night and she was exhausted and emotional and scared. I so wished I could have taken her a couple of tea cups and some tea. 

These kids are strong and determined. 

It makes me so so sad.  It is so weird how connections are made.  Even though we don't spend a lot of time in traditional neighborhoods, we still look out for each other's kids.  Our neighborhoods are a bit different then before.  Little bits of data, 1s and 0s across wire and cable and real things happen between people. Someone asked why I reached out to other moms in other states and countries.  How can we not do that?  Cancer parents have a special insight into what is really happening and it needs to be recognized and we need to fix it.  Just fix it.....   

Prayers go out for this family as cancer wins again. 

Five Years is not Enough

We all make deals with God all the time. If you help me pass this test, I will say 10 Hail Mary's a week.  If I pass this test, I will never swear again.  I promise to do anything to make this nightmare go away, I will even fold the laundry.  (you have not idea how bad it has gotten)

My daughter should not have cancer, I want her to graduate from St. Joe's and go to Holy Names and graduate from there... that is all I want.  I want those 5 years they talk about.

They always talk about 5 year survival rates.  When the words are tumbling towards you and your brain is in a rapid river and all you want to do is hear good news, 5 years sounds like a gift.   It is something to hang on to as your whole life is being dismantled and you are rushing down the river.  5 years. 

Well let me tell you from deeply felt experience, I want 50 years.  5 is not cutting it.  5 years off treatment flew off the shelf so fast I didn't even notice it was gone.  Whossh, and it was gone.  From what we have been told, it takes 5 years to recover from the treatment.  That should not be counted as the 5 years.  

So the docs need to buck up and they need to look out into the future.  They need to be more optomistic.  They need to re-write the script. 

50 more years...... 50 more years.... or 60.  I am not too picky or demanding. 

Rebecca

Day 48ish.
Sister gave her bone marrow.  Mostly matched but not all the way. 7 months off treatment before relapse.  Trying to get her life back. Trying to be a normal kid.

She has been in ICU for more then a month.  Kidneys, Dialysis,seizures, weird blood pressures, spleen unhappy, sepsis.  Lots of scary things.

I spent some time with her mom when I was in New York. We chat on occasion and I try to answer the questions.  There are a million questions.  When did this happen to Mary-Elizabeth? How did you get over this problem? When did this start to happen for her?  How did you handle this....?  Will she ever get her life back?  Boy if that is not THE question.

It is so hard.  It hard on the kids, hard on the families.  It is just hard.  We all are looking for a way to handle the hardness.  One we we do it is to help other's but it adds a layer of difficulty with every connection.  You don't always want to share what you know and how you know it.  

We were down having Hector the Magnificent draw MEB's blood.  There was a mom and a little girl, 7ish, sitting with her American Girl Doll named Lily. Lily was all garbed up and pasted up ready for her EKG and a blood draw.  The little girl was explaining to Mary-Elizabeth how she was brave and didn't have things done to her that hurt very much any more.  The mom was so happy that they were celebrating 4 years off treatment.  I looked at Mary-E and she looked at me and then returned to testing.

Later I complimented her on how she had not said anything.  We both knew there was no reason in the world to share our story. 

When you are sharing, you always hold back the scary observation.  The bit of wisdom you have garnered along the way.  The words you never want to hear spoken outloud.

Sometimes it is important to just listen, and pray. Today after I heard Rebbecca was having some Liver issues, I talked to the third grade I was teaching.  I explained a bit about Leukemia and touched on Bone Marrow transplants.  I told them about Rebbecca and told them I had promised her mom they would say an extra prayer for her.  I had told Rebecca's mom 3rd graders prayers have great power. 

I think they do.  I think the little ones have such strength and purity of belief.  

We said a prayer for Rebbecca at the end class and Grace said she would mention her tomorrow.  Grace is in charge of prayer this week and she wrote it down.   

Special Powers........

Frost filled Mornings

Coldness is creeping into all the crevises of the house.  Frost is deep, the kind of frost that could be mistaken as a light dusting of snow.  I think my yard waste container is frozen shut.  (I will be testing it soon when I add more after I bundle up and venture outside.)

Outside looks like a lot of parent's in Cancer World feel.  Dark, cold, isolated from those that are in warm cozy houses.  It is hard to describe.  Despite what is happening, we have oodles of optomism.  Against the most horrid odds and twists and turns of the process.

The good thing about it, warms up.  The birds brave the cold and then we all feel better.  We all have bad days and very frosty days.  It does not take much to help spread the warmth.....

A call for Kindergarten came and I went....

What an amazing thing to do. They are so fun.  Squeggly, all the time.  Noise just emanates from them.  This bunch had a problem with lines.  Really, I have standards and a line is not a hard thing to make.  They do have 26 in this class so it is pretty crazy. 

Lots of stories, lots of work sheets.   They have white board projectors and I need a manicure.  The day passed with relative ease.  No one scarred, no one in too many tears about hurt feelings.  The door holder was not happy that everyone did not say thank-you.  During free choice time, Em decided she wanted to explain to Anna about her horrible day.  Rudy's nose bled. Blevon's finger bled. Samantha fell and her hands were scratched. 

I just covered them in lots and lots of purelle and stripped down when I came home. 

It is interesting to be in different schools with different kids.  Now this is not a rich school by any means.  Solid school in every way.  All the kids are in uniforms.  There is an energy and a neediness that comes from some class rooms.  It is very apparent that some kids have their very basic needs met but other are seeking some of that from school. 

There is a lot to be said about have a good breakfast, a hug from a mom in the morning and a good friend in school.

Oh, Hot Lunch at St. John's has Chef Walter beat...