Unpublished thoughts from the Beginning of Trip, thought appropriate as we are almost done with the journeyu

We woke to Sunshine this morning.  Billings. We have traveled less than a 1000 miles but then that is okay. We are on a road trip. A Sally and Mary-Elizabeth Road Trip.  So we don't get very far very fast sometimes.  Sometimes it is necessary to leave the room in Drummond Montana at 11:45 am. 

We then need to abandon the plan and head off to places unknown.  Only rule.  Must be headed South or East.  No back tracking.

How can you not go to Highway 1 and stop at Hall and Philipsberg and see the worlds best stocked candy store.  Cool, cool old town.  I want to move there.  Of course every town we go to “I want to move here” comes out of my mouth. Small is better.  While not practical it feels,  better.  It is so much better. 

Back on the road but not until we have taken a couple of good pictures and stopped at the Sapphire gallery.  Who knew they grew in Montana.  Then a moment on the really high scary pass with the cool canyons and cool rocks and then a drive through Anaconda…

Then time for some serious driving.  No She wouldn't let me stop at the Ghost Town or the head waters of the Missouri River.  No we could not visit Three Forks State park or go find out why they named Greycliffs , Grey Cliffs.  No we could not go ask to drive through the private property on Crazy Mountain and see how close we could come to the base. (Crazy Mountains, just sitting there on the plain.  Looks like they were plucked up from the Sawtooth range and plopped down.

We drove, we saw the runners for the Special Olympics,  (Event starting in Billings next week-end.)  We were almost smashed by very big, did I mention big pick-up trucks… Frozen lakes, hail, visible snowing in not so high mountains.  Hugh valley vistas, lots of bovines and sheeps…  lots of critters.  There is a great lack of Mooses… I want to see some Mooses.  Not lots of birds, deer crossing and one sheep warning signs.   No sign for the Clinton Montana Testicle Festival. 

Lots of really big trains going and coming and going.  Rail crossings are to be respected.  No messing with them.  There are trains here that could crush your car like an aluminum can.  

So today, we are headed to real sights.  A search for answers.  We will peer into the past and wonder.  Why did Clark carve his name?  Big Horn. Why was Custer so arrogant?  Why do the Praire dogs looks cute and can we have one?  Where did that hunk of rock come from (Devils Tower) and of course it is sacred! 

Odd and only funny at 1:30 am.

            Perkins, that is the Dennys for here.

            Oh, I think that is a USO.

            Clarkfork river…. We have crossed it only 16 times.

            How do those black bovines birth those white babies.

?

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. 


  

I Sat By a Guy named Brad

On the way back from New York.  He was coming here for Christmas.  He was from Southern California.

He had lived in Seattle for a number of years.  He owns a company, lives in Berlin and while at the University of Washington came down with Lymphoma.  While he could have been treated at Children's  he was at the  University and when the big merger happened under the SCCA.  

When he asked why Mary-E did not have a Port, I knew he was one of us or had someone in his life that was from Cancer World.  We had a very long talk.  I was most interested in how his life was now.  What he had experiences over the past few years.  You know I asked him a million questions. 

Brad told me it took him almost 5 years to really feel good again. He counted each and every day a good one when he woke up and had energy.  He has crafted a life for himself that works.  He travels  a lot.  He spent time with friends and family and lived in a place he fell in love with, Berlin.  

I don't know if I let him know how much our visit lifted my spirits.  We spend so much time in Cancer World managing a the crisis d'jour that it is hard to see 5 years down the road, let alone 10.  

I know Mary-E was almost 5 years out when she relapsed so we should have been pretty darn happy.  But you, know, she never felt like survivor.  She always hated that word and relapse was the word that cast the biggest shadow.

Thanks Mr. Brad. 

InFLUenza....

Boy.... is this a serious illness.  I now understand why people died. I should know better.  Most people think the flu is that nasty vomiting thing.  Wrong, Wrong, Wrong..  It is more likely to be a bad burger or some off may.  It is Norwalk virus sort of thing.  

This is not the same thing.  It is 

INFLUENZA

Questions & Answers What causes influenza? Viruses cause influenza. There are two basic types, A and B, which can cause clinical illness in humans. Their genetic material differentiates them. Influenza A can cause moderate to severe illness in all age groups and infects humans and other animals. Influenza B causes milder disease and affects only humans, primarily children. (MEB has A.  We know this because the hospital LOVES to culture stuff.  The rest of us are out of luck we have to guess.  Alergies, cold?  Sort of a Crap Shoot.) How does influenza spread? Influenza is transmitted through the air from the respiratory tract of an infected person. It can also be transmitted bydirect contact with respiratory droplets. (People, keep your secretions under control!) How long does it take to develop symptoms of influenza after being exposed? The incubation period of influenza is usually two days but can range from one to four days. (If I had it, I must of caught it on the plane.  I wonder if Laura Breshock was sick, because we were on the same plane) What are the symptoms of influenza? Typical influenza disease is characterized by abrupt onset of fever, aching muscles, sore throat, and non-productive cough. Additional symptoms may include runny nose, headache, a burning sensation in the chest, and eye pain and sensitivity to light. Typical influenza disease does not occur in every infected person. Someone who has been previously exposed to similar virus strains (through natural infection or vaccination) is less likely to develop serious clinical illness. (We were both vaccinated... What is up with that!!) How serious is influenza? Although many people think of influenza as the "flu" or just a common cold, it is really a specific and serious respiratory disease that can result in hospitalization and death. In the United States, the number of influenza-associated deaths has increased since 1990. Influenza disease can occur among people of all ages; however, the risks for complications, hospitalizations, and deaths are higher among people age 65 years or older, young children, and people of any age who have certain medical conditions. (BMT patients!!! on two kinds of immunosuppresents?) I have been watching this bug work on my poor daughters body. She is so fragile physically and emotionally. She is being really mean to her mom and that is good sign but then it tells me she is really scared.  She has been dealing with a dry hacking cough for two weeks. She is exhausted, having a hard time sleeping and her lungs are not working very well.  Now she has some sort of red bump on her arm... Because life threatening virus's are not enough.  Now I have the sore throat.  Very dull present and uncomfortable.  Yuck.   I don't want to get sick again.  It is just time to stop all this nonsense.  I have school starting tomorrow. Mary-E has school to do.  A Circuit's final and some deep philosophy reading and writing to do.  We need this to be done.   Now.... Please.  2013 is beginning to make me mad!!

 

Yellow River

 

so Seattle Children's Hospital has spent millions of dollars on a new building.  Someone decided that since the ER (Now Known as the ED) was going to have negative numbers, they would completly re-name, re-number, re-color and re-do the entire hospital.  They chose well for the most part.  Green Forest, Purple Mountains and Blue Ocean.  Then it all went to hell with the YELLOW RIVER

 

I have of course commented on this little faux pax to many a person's amusement.  No one has thought about it quite that way.  How could anyone not see it?

 

HEE HEE.  Oh well forever this place will have a yellow river.  Yellow Snow needs to be next.

 

Child is still having major trouble breathing.  Using a fair amount of Oxygen still.  Hoping her $10,000.00 IVIG will make a difference.  She is pretty miserable and still in Strict Isolation.  

 

I will just hang out and enjoy the Yellow River.  It has a Yellow Frog.  Probably a product of the Yellow Discharge from the Nuclear Plant.