Two Worlds

So there is a big movie coming out this summer. "The Fault is in Our Stars".  Young adults, cancer, love, death. 

Cancer just keeps popping up and I feel like I am playing gofer game.  We see it all around us.

You can't ever win. They are everywhere and there are more and more of them coming.  I am sure the Hem/Onc docs and researchers feel the same. Just as they solve one problem, another pops up.  No matter how prepared you are, they keep coming back.  Never ending. 

As many many know a number of us are working on founding a Non-Profit named the Wishing Rock Project.  It is mixed group.  Friends, relatives, neighbors, Cancer Moms.  All working to make a connection to the new families.  I was meeting with one of the moms tomorrow.  I received a message from her apologizing she could not meet.  Scans were done last week and they found cancer again.  Again. Again. Oh Crap.... Again. 

It took my breath away.  A moment of terror.  Then I realized I need to send one of the Wishing Rock Bags to her.  Sometimes it is all you can do.  Reach out, let them know you are listening and try to give them a place to leave a bit of the pain and fear and endless anxiety. 

Here is a family trying to regain traction in the "real world".  Moving forward, working on catching up and trying not to look back too much.  Starting to think it was over.  And then....  It has been my experience that no matter how much time has passed and no matter how good things appear a bit of you remains in Cancer World.  Just a tiny finger or a wrinkle or a bit of gray hair.  It remains.  It is stretchy and can seem to be a very very very long tether but a tether it is. No matter what, it is there. It may be invisible to the "real world" eye but it is there.  

Given this is our dual reality, we are going to pull at the tether a bit.  I am amazed that ME is willing to go the distance.  She was not even willing to go to Eugene until Dr. Belle promised to be there, just in case.  Some how she is at a place she is willing to test the tether.  We are headed to places with no doctors, no internet and no good coffee.  It will be a challenge. We are taking a book to read on the road.  I hope to be able to needlepoint for a few days. 

We both understand this is only a temporary escape but we are going to find a bit of respite. A bit of joy, a bit of adventure and a bit of fun.  We expect to find these guys. 

Promise, I am leaving the mallet home. 

Sometimes Dreams come true we are waiting for the the next bit of great news.

WE had an appointment today. Things are so good we don't have to go back for 28 days.  A month, 2 fortnights,40,320 minutes. So what great news!  Now we have to call if she something comes up. So we have to watch for spots and bumps and other things that cause worry.  Pimples, weird food craving, sudden growth of purple and pink hair, a desire to clean the basement.. that sort of thing.  Mostly we have finally reached the point most people reach on day 100.  I will take it.  I will make sure we enjoy every one of these 28 days. 

My focus is shifting to help mom work on moving to the Senior Dorm and recovering from impending hip surgery.  She is a tough bird and we all expect her recover to "exceed expectations" I also am aware there are huge risks in any operation.  Mom is very clear on her wishes and she is going to be fine.  That is my story and I am sticking with it.  I also always have an uneasy feeling in my gut about the whole thing.  I know too much.  She will be fine. It will be fine. Fine I say, Find I say.

It is good.  We were able to see Kaylin today. She is in love with Justin Beiber and he met with her when he was here.  It made her really really happy but what made me happy today was to see her walk into the hospital. Since September 2011, I had never seen her out of one of those large jogging strollers. We saw her today and it was wonderful. 

 You would not recognize her.  She is coming off prednisone and her face is going back to normal but best of all her hair is getting really really long.  What a great gift.

 

So now we wait for the results on Alistair.  She is a special little friend of ours we hold in our hearts and squeeze with all our power.  This is a much loved little girl and her relapse was so so awful for everyone.  When I told M-E she went completely silent.  She went to her dark and quiet place.  It took a while for her to return.  When she did we delivered a Bitty Baby.  Nothing more we could do but pray but always good to have a distraction while waiting.   We visited for a few minutes today and are waiting to hear she is in an acceptable kind of remission for a transplant.  Her cancer (AML) is particularly uncooperative sometimes.  It does not like being poked and prodded. But transplant is the only option and there has to be a bit of a miracle for that to happen. 

 

I thing we are due for a few Miracles.  I need one for her.  

 

 

   


  

Long Drives and Short Stops

Went on a quick jaunt over the mountains, through the high desert, through the winter wheat fields to Spokane. 

Watched Samuel Page become an Esquire.  He has only the "bar" to jump over and then he is off to work on his life as a lawyer. 

Gonzaga does it right.  Lots of good speakers, some  nice bag pipes and a president that looked a bit like Dracula but then maybe that was what he was going for with a bunch of new lawyer wannabes as his main audience.

Mary-E was able to catch up with a couple of her friends. One friend graduated, another will be there next year.  Spent some time with Father Housman.  He took us on as a special project during her transplant.  He some memory issues but eventually makes the connection and then becomes totally present for us.  He had a stroke 5 years ago and taught himself to walk and talk and all the rest.  He will be a good guy for her to have around.  He walked us out and then began to walk like a bat out of hell.  I think ME nailed it when she said, he taught himself how to walk and is like a toddler, he has one speed.

It was a good way to begin to grasp the real possibility of returning her to school.  She is willing to leave the Children's Hospital bubble and feel better about it.  Little connections to what she knows and remembers.  Leaving happened so fast.  Hopefully re-entry will happen with a bit more control and organization.

We have been on the world's longest road trip.  Time for it to come to an end.  Tires are good. Oil has been changed. Car will be washed.  Three months.  We will do the trip again and when we do it will be to end Cancer Part II.  Need to figure out something spectacular to celebrate, other then a Blizzard at Dairy Queen in CleElum.

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....

Beware the Ides of March.......

Wish I had taken time to kill that special chicken and read it's entrails!!! I was not prepared for the Ides of March and neither was Mary-E....


Good news no AVN in the joints.  It is in the shin bone.  Rare and unusual place for it to be.... Of course.
Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse.

Long-term use of these inflammation-fighting drugs, either orally or intravenously, is associated with 35% of all cases of nontraumatic AVN. Although the reason for this is not completely understood, doctors suspect these drugs may interfere with the body's ability to break down fatty substances. These substances collect in the blood vessels -- making them narrower -- and reduce the amount of blood to the bone.Great.  Damn it.... Damn it.... Damn it....  I had this.  Next step upper body MRI to see if there are any more surprises.  Meet with the only guy on the West Coast that will touch a Bone Marrow Patient.  They will remove the damaged part and then drill into the bone to make it grow more and then I am jumping off a bridge.

It is so bad I have agreed to travel to Wisconsin and help my sister and sister-in-law relocate to Albuquerque New Mexico in the summer.

Etu Brute......Did you ever notice this was the only phrase in Latin in the Bard's play?  

Level Six... Heretics...

In the sixth circle, Heretics, such as Epicureans (who say "the soul dies with the body" trapped in flaming tombs.


I am so so confused but then I must consider the times.  Being angry, sometimes rightfully so, put you in level 5 .  Heresy was a big deal in the 12th Century.  But boy do I know about Heresy....Or like I prefer to conicider it, contradiction of those who perceive themselves in power.

What a surprise, some docs think they have been imbued with great powers and should be revered.  An even bigger surprise is that I don't see it that way.  Lots of parents now days don't.  My mom still "listens to the doctor"  and to some extent so do I.  I do consider their opinion and often even do what they say but they have to provide a good explanation first.

Cancer Mom's are really the ones that know their kids.  They have been there from the beginning and they are the only real constant. Some times they are lucky enough to have someone else on the "team" that stays with then during the entire process.  We have had Karyn Brundige... Fabulous person.

Because we have this very complicated and long process, the Mom's are the only ones that know. Really know. Each child has a "note" that follows the child and explains everything but trust me it is so long and in such tiny print no one reads it any more.  More then once I have used the blog to help someone find the right page to read for a date. 

Sometimes the docs and the others need to be questioned and corrected.  Sometimes it works and sometimes it does not... I did let Paul Carpenter MD, PHD, MRI, CAT let Mary-Elizabeth have only 20mgs of Prilosec but he had a good reason.

Oh, secret Heresy is the worst....  The one at Children's is that they feed the kids three meals a day plus snacks.... HEE HEE... don't tell or you will end up on Level Six with 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..... 

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.....

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. 


  

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

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........

There has to be a better way....

HIPPA has made everyone very so closed mouthed.  If they even acknowledge there is another patient on the floor, they have to kill you.

It is sort of like being in seventh grade and the mean girls are keeping secrets. 

I am so tired of being blind sighted with finding out someone had died.  Last night it was in a college newspaper. 

I know lots of people, I see lots of people.  We talk and share stories but not always e-mail and Facebook and Caringbridge and blog addresses.  Sometimes we don't know the names or diagnosis.  We don't snoop but we have a story about each of them.  This was Nerf gun guy.  He would be admitted, and often have a very young roommate.  He had an arsenal of weapons.  He would gather the kids and there were endless wars. 

I often was bombarded by soft brightly colored foam.  It added a moment to the floor's frivolity.

Well another bright, caring, loving guy has fallen.   Osteosarcoma is a bad thing.  I have long memories of this disease because as a child I remember my dad's concern for Patrick Kennedy when he had it.  He was only 8 or 9 and so was I.  They took his leg.  There was no other treatment for it.  Dad expressed concern about how it spread.  It loves lungs and other bones.   Nothing much has changed in all those years. 

Nolan is gone.  I think I will give the floor some Nerf guns. 
http://dailyuw.com/archive/2013/01/08/news/former-uw-student-granted-posthumous-engineering-degree

I am in control of the Universe and it does fall apart when I am gone.

I left on the 26th for Eugene.  Mom was gimpy.  She had taken the 25 pound turkey out of the over by herself and twisted and tore a muscle.  The big one.  When questioned about it, she simply pointed out she had never needed help before.  So I mentioned that to Mary-Elizabeth and she said that was just like Me.  I figure I have a few more decades to lift the turkey.

I spent a few days with mom.  We left the house a couple of times.  Housekeeper Thursday and Dentist Friday.  We had lunch at our favorite tomato basil soup and some other yummy things.  I helped with the dogs.  Mia needed no walks with Lily and Tucker around.  There is so much with the toys and the socks and other things. 

Mom was walking with a walker but after  a few days she was able to walk a bit more.  She had chairs strategically located and has most things worked out.  One in the kitchen to keep an eye on the coffee, one by the door outside to keep the dogs happy.  One in the dinning room so she can walk around the table a few times to get stronger. 

I was there to pick up some of the tasks it takes to make life better and running smoothly.  It seemed to work. I has no particular time for my return.  I knew I had to be back on the 6th so I could start school again.

So what happens, Mary-Elizabeth was left with the house and a cold. I had the dogs and there was no real projects to do. So I left.  She coughed and slept and spend some fun times with friends. She even went to a movie.  Life was good and then......

Bad cough became horrible cough.  Sore Throat and more coughing.  A chest Xray and some more coughing.  Nothing really showed up.  Some snotting into cup and then more coughing.I received a call about 3:00 am about a child needing to go to the ER.  Or sorry, ED (emergency is more then a room). 

Anne had a great adventure.  She was very upset as they tortured my daughter while trying to get an IV in for the CT scan.  4 times, no numbing, no nitrous, no......  I don't even want to think how bad it was.  Tears, pain, big pain. 

There will be on more pain if I can help it.  I want a line.

I am so upset by all of this.  It is so hard to see your child tortured.  She is so strong and so worried about all of this.  I am sure this is not as bad as it feels but it is not good to be back at all.  They will fix her and it will be okay and she will get better and we will move on with getting past this year.

It is all my fault.  I went to my class reunion and that caused a blood clot.  I go to New York to hang out with Mick J. and it causes an patient stay......  It is me.  It is not cancer or Pearl Anne it is me.  If I am not around to stomp on the trouble causers, there is a problem. 

I have to remember Pearl Anne is only a year old and she is running around in the body of a young adult.  The two of them can get into a lot of trouble and they have.  Oh have they been out of control.  Well I am back and I am not going any where.   We are getting things under control!

Oh, well live and learn.  I will try and sneak out a bit but leave when Pearl Anne is better behaved.  She can behave if she does not know what I am doing. 

We are having a good time visiting with everyone.  We were most pleased to know that they have fresh Satsumas for my poor baby.   That made me happy. 

No Kidney Transplant tomorrow.

Okay, maybe my imagination was a bit off the wall but then who would ever imagine having a child with leukemia twice? 

Back from the appointment and her creatinine is down, not normal but down.  Lots of tests are being done but results will take while. 

 The ultrasound is still on for this afternoon at 4:30 and then we should no more tonight.  They are looking for the following:

a. Evidence of a dissolved or current blood clot
b. Evidence of something like a kidney stone
c. Anything else that might be hanging around and not allowed.

The blood tests are going to look at her liver function and also see if there is any BK virus.  She had it in her bladder last time and it causes major major, horrible, terrible, bone chilling pain.  We were assured by Dr. Tracolomis that if it is in the kidneys there is no pain associated with it.

So we wait, we wonder and I quit saving for a Kidney Transplant. 

I wonder if this is what they will precribe after Monday's Doctor's Appointments?

Herbs like Siberian ginseng, dandelion and cinnamon are also effective in lowering creatinine levels. Drinking aloe vera juice also has many health benefits like controlling blood pressure and blood sugar levels and improving the function of the kidneys. Holy basil is also effective in strengthening the kidneys. You can take a teaspoon of basil juice and honey each and consume it every morning on an empty stomach for a few months.

Didn't really sleep.  Not really tired.  Just weary.  Made a list of my class work, doing the reading and working on a HR resume.

Organizing my wine, since the butler appears to have fallen down on the job.

Doing Laundry.

Walking the dogs.

Raking some leaves.

Charging my phone.

Harvesting the last of the tomatoes and drying them in the oven.

Father Tran is coming to work with Mary-Elizabeth tonight. 

Trying to stay unfocused on Tomorrow.

Someone else's new diagnosis, our version of 9-11

Yesterday someone shared a notice of a newly diagnosed family.  First grader, at Children's, Family well Supported. What to do....  Child had a long chronic cold, will be a Seattle Children's for a while. The family has a meal service set up, they are adjusting.....

Oh, my it brings it all back all so so fast. 

For a few moments the original diagnosis passes by. Confusion, upset, concern, panic, fear, despair, and then more confusion.  How did I handle it? What was I needing in those early months? How did we survive? What would have made it better? 

 I know it took me a long time to figure out how to receive from other's without guilt. It took a long time to put into words what I needed other's to do.  Everyone wants to  help. Everyone wants to something.  No one wants to do something wrong.  Do we call? Do we visit? If we visit do we stay an hour? Do we take food?  Should we send balloon, cookies, flowers, a new puppy?

The fact is they have just had some of the worst news of their life, are in total shock and are just trying to get from one set of rounds to another.  They are learning about counts, are ecstatic that their child is not throwing up and that the hair is still their.  They are grasping on to any little bit of hope available.  They are telling their friends "it is the good kind of childhood cancer". 

I can remember when we would go for a walk on the floor or go to clinic and Mary-Elizabeth would say, "They are new".  I would agree and we would continue.  We each would enter that corner of our  brains that those first memories reside.

9-11 is seared into the memory of many.  Some of us still remember when John Kennedy died.  Some when John Lennon was shot.  Some when they got a call from a friend staying at their house, asking that a call be returned to Children's. 

We all have these dates and times.  Some universal, some personal. 
Hoping for memories of good things.

 

 

Mario Guzman.......

What do I say? This is the message I received yesterday: Hi this is margarita, im jut calling to notifiy you that unfortuaelty mario passed today at 3am in the morning. (Margarita is the mother of Luis and her lack of English made it difficult for us to speak but she texts like crazy.)

Damn it, Damn it, Damn it.... Mario was one of Mary-E's transplant buddies.  He was a big guy, tall big, always a smile, talked with everyone, kidded with everyone.  He was a great guy.  Lived in Quincy. Has a great mom, Linda.  Margarita, Linda and I lived together for two and half months. We talked, compared notes, spent hours and hours not talking because we were with our kids. 

We learned a few weeks ago that Mario was in ICU bleeding from his lungs and on a respirator.  It has been a few weeks. Last we heard he was off the respirator but we knew he was still in ICU.  I never thought that "off the respirator"  was not a good thing.

This is Mary-Elizabeth doing Circuits and not knowing. She now knows. When I told her I was going to the funeral, she was very firm:  "I am not!!! This is why we don't talk with each other.  We know not to get attached."

They worry about each other from afar. They want to connect but know in Cancer World your friends don't just go away, they die. 

The moms are much more in touch with each other.  We all hate that the hospital won't give us information about other kids because we know the Moms don't have the energy or ability to do so.  We want to help each other and do something and we are often stymied.

We are always looking for information for lots of reasons. 
Did we do something wrong?
Should we be worried about something else? What is working for them?
What is he eating?
What is she drinking?
What is different about his identical double cord blood transplant? 
Is this our future? 
After all of this will we end up in ICU?
Did it matter that.......?

We are always comparing notes and hoping that if it is good, our child is doing better.  If it is bad, we try to figure out how are child is not in the same situation. We are like competitive moms on a play ground with our kids.

But in the end, we all fear this the most:  The death of our child.

Nothing prepares us. We just feel so helpless. We want the happy cancer story. The one the news always is so willing to tell.  We know the truth. 

We come into this knowing that only 40% of these children make it through.  Knowing and then realizing are two very different things.

Deep into the Corners

In Cancer World the docs are always on a hunt into the recesses of the body for lingering cells. 

They look in the bone marrow, the spinal fluid, the testicles (if applicable).  They are always looking.  They say that cells hang out there and must be tracked down. 

Now Leukemia is not like solid tumors, stray cells don't float around, attach and then find a new place to land and grow.  The cells they find are just evidence that somewhere in the bone marrow, a cell is being bad. 

In Mary-Elizabeth's case the sleeper cells did not show themselves for more than 7 years.  They were shot down and suppressed and waited.  Waited and Waited and then one day they came out to play. 

 I have theories.  Stress, potato chips, bad school food. Lack of diligence, too much diligence.  Cosmic rays, too much fresh air, not enough fresh air. Too many pesticides, not enough pesticides.  It is all a mystery. 

I guess cancer is sort of like a hornet's nest.  It secretly grows in the Rhododendrons in your back yard until one sunny day when you are sitting on the back porch of Carolynn Baker's house and a raccoon climbs up and decides hornet larva would be a great afternoon snack. 

Well I have not been very diligent at my house, especially in the kitchen.  Now that "school" has started, I feel the need to return to the kitchen and really cook.  When I turned around today this is what I found. 

Oopsss.....  Kitchen Faeries are on Restriction until we find the corner.

Fires are burning.

If you are from Idaho and have lived in Southern Idaho where fires grow to thousands of acres in a few hours, you appreciate the power of flames.  Feather ville front porch.


Lots of fires happen other places than Seattle.  I drove by Cle Elum an hour before they began understand and fear and flee fire.  

 I have a cousin that is waiting for his house to burn in Idaho.  His house is in Featherville.  It is such a feeling of dread, knowing it is coming, hoping the wind with shift, hoping it will be okay but resigned to the fact it might very well happen no matter how many fire trucks are sitting in the town ready to defend.

 Everyone is very aware of dread and fear.  What it is like to know something is going to happen and we can not stop it.  It creates that pit in the middle of the abdomen and waits and grows and nags.  It does not hurt but it makes you aware of something you are ignoring and can not fix.

Tomorrow is one of those days for Mary-E.  She has to have various blood draws and some IVIG (Immune Globulin).  She is dreading the insertion of the IV and then the infusion.  IVIG can cause some serious allergic side affects.  I hate each time she has to give blood and get poked.  It is ugly.  Her body is so so tired of all the assaults and shows it's anger by creating really really big bruises and lumps.  I am grinding my teeth just thinking about it. 

I called Cousin Judd and he was driving a load of something to Montana.  He had been to Featherville and had taken out a few items and said good bye to his house.  He was keeping himself busy until he heard the news.

I think I will find a project, or maybe make a list of projects.  Something to keep my mind off of tomorrow and of course all the other things I know could come or not.

Freezer needs to be defrosted
Cupboard needs to emptied, sorted and cleaned out.