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. 

Tucker may have to Die today..... and so should some administrators that think they can cut corners on the SCCA floor at Children's Hospital.

I love Tucker.  He is a great dog.  Noble and wise.  He is sort of like some of the nurses we have had over the years, (not many but some) and they all lack common sense.  

Rules are something we must have because not all people have common sense but then even when there are rules, it is a good idea to apply them with some common sense. 

So this morning I let the dogs out (Lily is back).  They ran, Tucker bit and shook the hose (he is a dog, how do I know why) and then they began to bark  in the driveway.  Our driveway magnify sounds so I worked to get  him in the house.  

Since we were under attach, there was a need to work extra hard.  I tossed a couple of treats down the stairs and he came in, finally. Mission accomplished.  I could have some coffee, and spend some time on the computer.   But........

Best laid plans are not always the best.  Two of the treats ended up on the stairs going down to the basement.  Tucker could not figure out how to get them. He just whined. He is an awkward sort of dog so if he just bent his head and tried he would fall down the stairs.  He just whined. He sat and looked at them and then guess what?   He just whined some more.  I tried to explain to him that if he went into the basement he would be able to eat them as he walked up the stairs.  He never stops on the steps, he goes all the way down.  Something about physics and gravity and other nerdy stuff.  Again, he just whined.

So after he resisted my efforts to send him down stairs I unleased the hounds again and more barking was happening.  I took pitty on my neighbors, picked up the treats, brought the dogs in and realized sometimes, you just have to whine.

Sometimes there is nothing that can fix the situation.  Things require whining to accomplish the better out come.  Seattle Children's is going through a major change in how they provide care.  At least on the SCCA floor there has been one to two care.  On transplant day we had two nurses all day.   They have gone to a CNA system where the lesser paid and trained people do the really basic, cann't screw it up no matter how hard you try sorts of things.  

Oh, yeah, lets go from the most highly trained nurses to people that are just starting out and don't really understand.  Here is the link to my friend in the trenches Gail and her experience.  She is not just whining.  She is trying to save her child from Leukemia. 

Mr. Tucker will not give up.  He will not stop whining until he gets what he needs and what he wants.

Handling things like bad food issues, problems with Security and their stupid badges, filthy and incompetent emergency department is hard.  Having a CNA try to wake your child to weigh a diaper is just too much. 

Rules are good.  Common Sense is better.

http://www.robinaviva.com/2013/01/the-new-we-dont-care-model.html?spref=fb
 

Voices from other Places...

So my chatterings on the Internet bring strange results. People Google things and they find my stuff and they contact me.  This is both good and bad.  

Always good to know others are out there and there are about 6000 new sets of parents a year. In the US.  I have no idea how many are out there in the rest of the world  It is sad to know what happens in many situations.  They don't always have happy endings.  Sometimes you don't know the ending. Sometimes people just reach out and then disappear.

The newest to reach out is a young woman from Turkey.  

> Hi there,
> my name is gulenay  i'm from Turkish Republic, and i'm a 24 years old girl who has a lukemia (aml m5)
> i found you from your blog.. and i'm gonna have double umbilical cord blood transplantation.. and i'm scaring.. what shoul i do? what u recommend us? help us pls

I wrote back and was very worried that I had not heard.  This morning, I received this: 

 hi there!

today is the first day of chemo. i mean -7. 19th of this minth is the certain transplant date.. i was a little bit busy so i forgat to write you.. they send me other parts of hospital (nose ear trouht, eye, teeth, lung etc..) for control to before transplant..

tey gave me a paper today and and somr boring things writing on it.

example: during the 1 year after transplant dont go crowded places such as shopping centers, never eat outside don't eat the goods whic are close to soil such as mushrooms and greenness etc.. etc..

is that rules really very important?

there is no problem about nutrition now. i drink nearly 3 litters of water every day and eat everything (i mean allowed by the doc.)

how is your doughter? and. and i really wonder that how old is she?

I am amazed to hear from someone but what a gift.  Well I have to feed the hummingbirds and pick up my house a bit.  Lily is coming home and we are staying close to home.  The outside world is dangerous on the week-ends for us.  

   

Year of the Water Snake and Drinking Death Wish Coffee

WE have been on a very long journey.  One that has ups and downs.  Set backs and gains.  Lots of stuff. I figure we can not be surprised and it is all under control.  I have more hope than before.  Why you ask?

I have had a whole pot of DeathWish Coffee.  It is supposed to be the most highly caffeinated coffee in the world.   http://www.deathwishcoffee.com/

I am not sure whether or not it is but Just saying sometimes makes it better.

It is also the year of the Snake.  More importantly a Water Snake.  This happens only once every 60 years.  Yes draw your own conclusions as to how old I will be this year.  

Just also remember the water snakes are the worst of the lot.  They are the most deadly, hard to see and sometimes cause funny things to happen in movies like Father Goose. 

See what happens when I drink highly caffeinated coffee. 

Too many sad things are swirling around me today.  I am going to go have some more coffee.

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

How To Properly Return Home.

Blow by all the Security Folks and ignore their plea that you stop and get a badge.

Load one wheel chair full of stuff, slip down Rocket/Bear Elevators, grab the prescriptions, get a New Cap Badge ( six month badge for kids like MEB and  load the car.

Return, find your child load her in, Stop by Starbucks. 

Unload car.  Go to Palisades lunch for celebration with Kira your lovely niece. Try and figure out why their bisque is better then yours.

Come home and put child to bed.

Nap.

Vow to never do this (hospitalization not Palisades) again.

Notes from the Ice Flow

Hoping she is coming home today.  I am hoping she gets some sleep here. Hoping she regains her positive footing. Hoping this is just an unfortunate bump in the road. Hoping Hoping Hoping.

"It is just a cold or the flu".

Boy I wish that was not the case.  In my world "JUST"  is not an option.  We don't get justs.  It is just a bump, it is just another week, it  is just one year without a real Christmas tree.

It is all about perspective.  Millions of people have colds and flu.  They feel bad.  They don't get hospitalized in strict issolation on oxygen for 9 or 10 days. 

Our ability to rationalize and make our brains accept what is happening is directly related to rest, right food and the time of day. Mornings are better than evenings and Mondays are generally better than Fridays.  Tests on Monday to Thursday are better then Friday to Monday AM. (Waiting for results is horrid over the week-end and we don't trust the baby docs.)  No visit it the ED (Emergency Department, because we have been insulting them by calling it the ER) is ever acceptable.  

So while we drift on this Ice Flow remember if we are bit curt, or less than encouraged by your words, that we are really cold out here.  It is very alone and we are the folks that have made ALL the good kind of cancer.  Really can any kind of Cancer be good.  

Meb is home.  We are about to go celebrate Kira's and Prince Catherine's (Kate Middleton)  birthday at Palisade's!!!!

 

Deep Dark Woods and Desolate Ice Flows

Quote of the Day

"Polar exploration is at once the cleanest and most isolated way of having a bad time which has been devised."
--Sir Ernest Shackleton


Betsy Hawkins and graduated from high school together.  She has moved over here and we reconnected in a nice way.  She has a great husband that loves to clean up my back yard.  But more then that she has been an emotional resource. 

One way she helped was to connect me to another friend of hers going through a Bone Marrow Transplant.  Roger is an adult, had a different kind of cancer but there is a certain sort of camaraderie among those of us in cancer world. 

Well things went well for Roger and then the Leukemia returned, with a vengeance.  He is coming to the end of his treatment and is struggling to travel from Salt Lake to Missoula where he lives.  There are lots of issues with transportation, insurance companies, sufficient oxygen for the journey, I can't even imagine.  None of it is good.  None of it is happy.  None of it is easy. 

I just happened to check in on their blog: http://bonemarrowboogie.blogspot.com and found the quote that starts this entry. 

I love it.  I reflects the isolation and desolation of this journey.  I had always pictured us in deeps dark woods with a myriad of paths and lack of good signage!

Maybe we are on an ice flow.

Say an extra prayer for Roger and Candie and they slide across this most of desolate places.  May they find a warm and welcoming shelter.

 

Basic Expectations

I am very  much a half-full person.  I was raised by Mary Foster Lanham.  She was sure that if a child had enough raisins in their oatmeal things would be good.   She felt Hitler did not have enough Oatmeal.

I do have some basic expectation.  I like the sun to rise.  The toast to be hot and full of buttery goodness.  I expect the coffee to be strong and it does not have to be hot.  I expect food to be cleared of anything made in a factory.  I expect people to be polite and trustworthy.  I expect good signage.   EXIT  is not a sign.

The University of Washington if failing to meet my signage expectations.  First all the buildings basically look alike when it is dark.  The campus map is wonderful and interactive  on a phone but if there is no map on the campus that says:  You are HERE  then interactivity is for the birds.  If there is not a single path or street sign and you can't tell Spokane from Sandpoint, then a map is pretty useless.  I had a horrible time last night "wayfinding". 

With the help of Kerry, I arrived in class, all most late and with a nasty attitude. Some kind happy delightful man tried to give me a pen and be nice but I was having none of it.  It was the first class and everyone was excited.  It is Training and Development and the women named Linda was there all excited to be our teacher.  I was grumpy and not very nice.

I realized how often our expectations can really screw up out attitude about the world around us if the expectations are not met.  It would seem simple to have fewer expectations and lower standards.  But if we expect less of the world then how do we maintain a half full, trusting world view? 

I will think about that today.  I am feeling 100% so I am letting myself out of prison and going to go explain my expectations to some people in the food department.  Then I am going have a chat with an arrogant resident.

Hope I meet someones expectations.

Both ends of the Spectrum

Mom has been sick.  Mary-Elizabeth is sick.  I have been caring for both of them.  Seems perfectly  normal but I wish they would quit tag teaming me.  I really need them to need me one at a time. 

I had promised Belle that I would be there for Karianna's trip to the "New Parts" guy but I knew when I said it, it would not be reality.  After a bit of time, Belle knew it would not work and we sent "her brother" Alex to be the voice of reason.  There are times there is need for someone else to be there and tell you it is okay and we will get through this. 

Alex has that calm Foster demeanor and the Lanham sense of humor.  That is ever so helpful.

Mom is feeling better and going to leave the house because it is Housekeeper Monday.  She is going put the dog in the car, drive to a breakfast place and have breakfast.  Big steps for her.  I don't think she has driven for several weeks, maybe months.  She should do fine. 

Mary-E is fighting off the needle pokes.  She is feeling well enough to simply tell them "NO" to more than one poke a day until she gets her port.  She has taken on her own care with a new sort of verve... I can tell she is feeling better.  

They both are feeling better.   I can turn my total focus to School, Parking Permits, and maybe even a UCard.  How cool is that.... 

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!!

 

She was mad at me today...

She was sure I would fail to bring back McDonald's apple pie.  She was upset and hungry and wanted bad food and she wanted it NOW......  She wanted sleep and she wanted it NOW.... She wanted a bath but was too tired to have that but she wanted it NOW.

She is about 3 right now.  It is a good sign.  That is the age they really start to fight for themselves.  It was just one of those days.  Full of little setbacks and no real end in sight. 

Step forward: There is a plan in place for putting in a new port. 
 

Step back: I left to pick up lunch and during my absence they needed to take out the much fought for IV. She is afraid she will have to have another one.  I have assured her they are not  going to do that without me there and after a lot of discussion about alternatives.

Step forward:  Her cough is becoming productive.  

Step back:  She coughs so much she can not sleep.

Step forward:  We finally had a discussion about making sure she gets some sleep.  
Step Back:  Shift Change and we have to do it all again. 

It is the little things.  I left to take care of the dogs and because I don't think I am helping.  I am going to go back after some dinner and drop off some sugar free cough drops and some food.  She is not really hungry but will be later and we know there is no food for her at the hospital beyond the satsumas and jello.  

Sleep will help her more than anything.  Today was the first day she mentioned wanting to go home.  I am hoping we can make that happen in a day or two.  

I am being reminded....

Of the first time MEB was in the hospital. 

It was a family gathering in Portland.  She was 5 years old.  She was allergic to grass and other such things and she had a huge reaction.  I just thought she needs some rest and some antihistamines.  She ended up in the hospital for three nights and had her first round of Prednisone. 

A foreshadowing of what was to happen?  I don't think so.  I think it was just an event. 

We are now here again.  In the hospital with lungs not functioning.  Oxygen a lot of the time.  Just waiting.  Waiting for them to rest and heal.  In a room, isolated. 

Its okay, she has been pretty content.  A bit of life back in her yesterday.  Lots of Pho broth.  Lots of chicken sorts of things.  Terriyakie, nuggets.  She is slowly coming back to life.  Oxygen is good for that sort of thing.

We are fighting about who moves out of the house the next time I get sick.  I think she needs to go.  I am going to stick to my guns.

It is housekeeper Friday so I have to get moving here.  Some stuff to put away.  A shower to take. Dogs need to be walked.  The usual.  I might go have breakfast somewhere or a better cup of coffee. 

Oh I just realized I have some beans in the car and the Lori Mann grinder.    Life is good.

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. 

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. 

I saved Christmas Morning Breakfast

Mary-Elizabeth is down for the count. As she said to me with a smile.  "sharing is caring" .  I am hoping she will have a few quiet days and just sleep because with this cold, sleep is the only time you don't feel like crap. I find that I wake after those few days of "three wise trucks ran over me twice" days with no real memory of the event.

I woke yesterday  morning, loaded the dishwasher again, made coffee and then coffee cake. (That was not much of a save) and started breakfast.  The Sierra's were coming and Mary-E loves these mornings.  The kids are ready of great presents.  It is a good time.  Squeals of 6 year olds when the open monster remote control trucks is the best next to 10 year olds finding joy in a million little things and already planning the trip to the American Girl Doll store.

We napped, I did laundry, yes the true Christmas Miracle.  I did more dishes because the Sierra side of the family love the glitz and glitter more then anyone and the good dishes love them.

All and all it was good.  Now off to Eugene.  MaryE will get to her appointments via the many angels in our lives.  I will see what Mom is up to.  I am expecting something is on her mind.  Or we will be Mart Shopping.  K-Mart, WalMart, some of her favorite places. 

As I leave I always feel conflicted.  So many families are deep in the battle but sometimes I need a rest. I think and pray for the kids in ICU (keep fighting Rebbecca).  1 year olds on Steroids (Gayle you can survive this, but it is the worst of them all).  Kids trying to get a hold of maintenance and still fighting the battle in places away from Children's (Alison you are our hero.)  Parents wondering if the cancer is coming back anytime soon since there is no doubt it will (Darlis enjoy your view of Russia from your Alaska Porch).

We can't fix most of it.  We can't even begin to start.  We can save a meal, burn the coffee cake and forget to light the candle but sometimes it is enough to just use the good china and the real silverware. 

Just know every "little save" counts in end.

Christmas 2012

We have always tried to make Christmas special in simple ways with some spectacular twists.  There is not a lot of money for big presents so the little special gifts are sought out to the ends of the world.  Little things that might be a memory jogger.  "Oh I remember when...."  sort of thing.  Not just the perfunctory sort present for present sake. 

This year I am sick.  Deep down, stay in bed for 22 hours sick.  I feel better today and suspect that will be the trend but yesterday Mary-E and I had a long talk about all the things that needed to be done in order to have the special soup and the stuff for Christmas Breakfast,  She has been a busy busy bee.  She took on my stuff as well as hers.  The only think I have been allowed to do is clean the crabs.

She has done three kinds of cookies, candied pecans and the stock for Crab Bisque.  She has done all the shopping and even came home with stuff for dinner.  Love Love Love Black cod. 

We are well under control.  I did show her what parts of the crab goes away.  I was the prefect person to clean crabs this year because I can't smell anything.  I am hoping I can taste by tomorrow.

Here are some of our relatives.  I found the files on my computer.  Love old pictures.  Wonder what those a 100 years from now will think about our pictures? 

Crab soup needs some attention.

A Muddy Christmas

So Dad always said that kids don't eat enough dirt.  He was deeply disturbed by the efforts to totally remove germs and dirt from children's world.  He was a true believer in building the immune system by one muddy rock in the mouth at a time. 

Small exposures, little bits.  Sort of like a vaccine.  Give the body something to work against and strut it's stuff by working on building immunity.  He was horrified by purell and anti-bacterial products except when necessary.  Like hospitals and in cases like Mary-Elizabeth's.  He would have had the subtle smirk on his face yesterday during the conference.

So here we are, 11 months post transplant.  Lots of tests, not all of the results but enough that there is some certainty.  Mary-Elizabeth's immune system is not longer her own.  She has 100% Pearl Ann's cells.  She has some loss of lung function, bone density, liver is okay, not great, too much iron still but not enough to bleed, kidneys are on the fence but seem to be holding her own. Over all she is in good shape.

GVH is still a problem.  She should have started to taper from the immunosupresents about 5 months ago and there is no taper in sight.  So they are changing the medication. 

She is going to be taking a medicine made from dirt.  Special dirt.  Dirt from Easter Island.  Did I mention it was dirt? It really is dirt. It does come in a capsule. 

I had been told a long time ago the people that work at places like the Hutch bring back dirt and water from far off lands.  People look at the stuff and then see how it can solve problems. 

So the plan is for her to transition from Tacro to Dirt and see if it will help Pearl Anne be happier and then try to come off the prednisone.  What does that mean, well we aren't done with this yet. There are going to be more time at the clinics but hopefully it will work, if not there are other drugs made from other weird stuff out there.  

The really big news is that barring some sort of other disaster she is out of the deepest part of the woods.  She can fly to clean places (not China).  She can take a train and move away from sick people. She can even take a bus, if she does it during the quiet time of the day. Better to wait until summer on that.  There is a certain amount of care that must be taken while on the immune suppressants but all in all it is great news. 

What a Happy Muddy Christmas for us!!!!

Waiting for Tomorrow and some Answers, maybe.

21st of  December 2011.
We were waiting to see if Mary-E was going to be able to have a transplant.  Was she healthy enough? Did she have any hidden infections? Would it work, would she be one of the 40% that make it through the first year?  All of that.

Well it is Friday the 21st of December 2012.

We are in such a different place.  Same sort of evaluation but not quite as through.  She has had most of the scans under the direction of the SCCA so they will accept the results.  We don't know much yet. 

 Today we meet with the doctors and have the "Conference".  It will tell us what toll this transplant has taken on her.  We know she has lots lung function and liver and kidneys are unhappy.  There is this push pull between given her some sort of estrogen so she does not go through menopause and her clotting issues.  She is still on lovanox and the other night her skin started seeping.  It was freaky.

They called her last night and told her there would be no vaccinations given.   It sent her to bed in a funk. The vaccinations give her more freedom and ability to be around more people.   Her bubble is getting a bit confining. 

In a few hours we will know the plan.  There is always a plan.  The plan never works out but there is then a plan.  Sort of like Congress. 

Wish they had a plan. 

You Know You Are In NYC

when there is a stop light at every corner and people Jaywalk any way;
when your cab driver dozes off at every red light;
you ask for a good coffee shop they don't send you to Starbucks (Thanks Esther);
when everyone walks like they are 20 minutes late to a very important appointment;

when a harried dad will let a perfect stranger walk the baby around the shoe store and everyone thinks that it normal;
when every continental breakfast spread has lox and bagels;
when you are sitting in a coffee shop and you move and someone brings you the purse you left behind;
when you are sitting in the NYC reading room and some guy approaches you for directions to hardware store and you can help him out and you realize you must look like a local;

when you drift by a museum and realize there are the letters of Beatrice Potter on display;
when you can stand and gaze upon a vellum copy of the Gutenberg bible and truly be amazed at how far we have come in technology;
when the Rocketts are 20 feet away and you are filled with the wonder at the precision and amazed at how many crystals can be on one outfit;
when you travel around a park in a horse drawn carriage and begin to appreciate how important open space is for every one's soul;

when even the hot dog guy is trying to be helpful to everyone and makes sure your dog is served up just right;
when the kid jumps the turn style and you exchange a smile of understanding;
when a young girl gives you a seat and keeps you on the train when you want to get off;
when you see "Clair" from Ugly Betty and pretend it is a normal thing;
when your town car looks like everyone elses town car;
when you walk down Park Avenue and see the guy with wads of cash and the sunglasses and he pretends it is a normal thing;
when you see every restaurant crowded and full and no one is worried about the wait;
when the cab guy will pull over and wait while you find your gang;
when only the tourists don't have umbrellas;
ever block is a surprise because it is not one giant skyscraper, the small beautiful buildings are still there only adding to the diversity of NYC;
when everyone, says "excuse me"  & "thank-you"
when the best grocery store is in Grand Central Station;
when you realize the "Hudson Bookstores" from the airports all started there on Hudson Street in New York;
when 8 miles is a very very long way away;
when you can totally escape your life for a few days and become part of another living organism and be refreshed.

Adventures...In New York City

I was taken on the adventure of a life time.  Remember Queen for a day where you received a new refrigerator.  I was a part of a very new version. 

First Class to and Fro from New York.  They served a very nice Malbec. 

Beautiful room in the Grand Hyatt.  Drinks in the bar.  Good breakfast with a machine that dispensed Torrifazionne Italia coffee, two shots at a time. A wonderful day of strolling up 5th Avenue, with lunch at Sosia, a small restaurant with the best fresh mozzarella I have ever had. Carriage Ride through Central Park.

Quick trip downtown to catch a town car to go to New Jersey for a Rolling Stones, Lady Gaga and Bruce Springsteen concert.   Home for a street dog with the guy from Central Casting. 

Then we did it again but this time we ended up at Radio City Music hall for the Christmas Show.  In the front row!!!!!  Amazing.  A quick walk in the rain down town to a place called O'Casey's.  Reuben Sandwich, Irish Coffees, it was a bit of heaven. 

Then home after a walking adventure down Park Avenue.  A moment with the correspondence of Beatrice Potter in the Morgan Library.  Meeting a friend for coffee at a place that served great Stumptown Espresso.... from Portland no less. 

Loved the picture from the Stone's Concert. Mary-E was excited that I was at a Hockey Stadium.  The Devils have done very well in the Stanley Cup.  It all depends on your point of view. 

Oh for you that are not very smart about cool things like big rock concerts.  This is a picture of the Tongue Pit....  Who knew?

I went to a Fairy Wonderland and returned.

Meb started her year one evaluation without me.

I was in New York City walking down Park Avenue on the way to the Empire State Building.  Just walking.  Looking, seeing and just absorbing the wonder of it all.  Quiet walk.  There was a guy there that had wads and wads of cash and a weird hat and sunglasses on..... 

It was a wonderful adventure.  Tonight I sleep.  Tomorrow we continue the journey of the evaluation.  Life is good and we are expecting it to get better.

Pictures and comments and observations must wait until tomorrow.  I should just say I was tickled to find Torresfasioni coffee in the hotel and Stumptown across the street. 

Big Adventures...

New York City.
Here I come.

Yeah.  Off to see what I can cram into a few days.  Stones and Springstien, Lady Gaga and I are spending some quality time together.  Some time wandering the city and visiting some weird places.

Candles at St.Pats. Top of the Empire State building. Morgan Stanley Children's Hospital to visit a mom with a child in transplant.  Purgatory Press to pick up my 2013 datebook and some frozen hot chocolate.  Some time just wondering and some time on the Subway to just say I did it. 

An art museum if possible, a gander at the Guggenheim, Frank L's last work. And then....  Maybe a book store, the Strand, A street corner for a meal.

There is a bit of melancholy with the leaving of my child here but I figure we will do this trip again.  Maybe next year. 

I really need this and I didn't even know it.  It all fell into place with a minimum of jostling around.  It falls into place.

Straw are not just for Mangers

It is hard to explain to anyone why we would whine about not having a real Christmas Tree or GVH or house arrest or loosing hair or having to have an NG tube or having to be 30 minutes from the hospital. 

When people try to make it better with comments like: 

Lots of people love their fake trees.  I have had one for years.

She could have GVH of the liver.

or my favorite

She could be dead.

Really folks.  If the only thing a Cancer World parent is complaining about a stupid rule about Christmas Trees be happy for them. 
These are signs of other much more worrisome things.  GVH and long term prednison = need for all the major joints to be replaced. 

30 minute tethers mean that things can go bad so so fast that everyone wants the child close.  In other words, they are not out of the woods, they are not even in the woods.

How We are Over Compensating....

It started out when we stole the wreath from our neighbor's sister.  It was not on her door and I was there and then I thought it was a good idea to have it.   



Then Lisa stole her sisters. 
We felt guilty and sent the wreath fairies to find a suitable replacement.
Then Keith and Carol swapped out the Swag for their wreath.  Then I found a little sparkly wreath and took the Swag and gave it to Sharynn.  Then Angie gave me a new one.  Lisa then came a stole the extra one. 

Now things are starting to appear on the wreaths, lights, bows and fancy things.  Things seem to have settled into adding fancy things.  Love the surprises....

Ps. I cann't seem to be able to upload the pictures so that will be later.

Today the Dentist and the Post Office

Before transplant Mary-E went through this long and complicated process.  There were tests done and re-done.  They want these kids to be healthy enough to stand the process.  During that evaluation we found that her body had fully recovered from her first encounter with leukemia. 

We start the process today.  Most of it will be next week but today she visits with a dentist.  He will be assessing the damage done by all of the treatment over the last year.  WE are hoping it is not too bad. 

The body is an amazing thing.  It fights back and repairs itself in many ways.  I am always amazed at how it all works.  We know she does not have GVH in her mouth.  That is more of a blessing then one can imagine.  While my daughter does not talk about what is happening to her she does look online for the sorts of things.  She knows what is out there. 

So today we are off to do something really really difficult.  We are mailing a package at the post office.  Now that is a challenge.

Sometimes it is the Little things...... Nasogastric intubation

Doesn' t that just sound nasty.  It is.  No matter what they say or call it.  It is a nasty nasty thing. It is not a little thing, it is just another thing in a long list of awful, terrible, horrible, things.

Essentially they stick a tube through your child's nose into your stomach and feed you that way.  (It is one way that relieves Chef Walter from having to feed the kids.) 

Kids have a very hard time keeping up their eating.  It is not enough to eat Chicken Nuggets and re baked deep fired reconstituted mystery food and re-microwaved, previously in a sealed packaged fake mac & cheese.  The fact is they can't eat a whole lot of the time.  There are so many things that make their stomachs upset.  Chemo, radiation, pre-meds for blood products, mouth sores.  When they are ready to eat while they are on steroids the food they want is white and salty.  Even then they don't like Chef Walter's food.  (Not that he would ask or care or even acknowledge he should be cooking for them.) 

It is a big battle.  The older kids understand.  seldom do you see a teenager with a NG Tube.  They will have none of it.  Mary-E was very very savvy about them.  She would ask what the limit was and would not go below it.  She knew when she had to start eating and she did. 

The little ones are less able to be bribed.  They hurt, or they don't want to eat and no amount of bribery will help.   Remember our favorite little Robin.  Mouth sores=closed mouths.  As Mary-Elizabeth said: "mom she isn't stupid, she knows it hurts."

So the tubes have to happen.  Like everything in Cancer World it is just one more thing.  It is one more reminder that we are set apart from the rest.  We don't cure our children with good food and good sleep and good stories.  We cure our children with pain and suffering and colored poison and tree-less houses and weeks in confined places with filtered air and endless interruptions and pain.  We allow people to experiment and poke and prod and cut and paste and do endless things to them.  Why?  because we have no other choice. 

For reasons we don't understand we find ourselves having to let it happen.  It is what stands between ourselves and total utter despair. 

One thing that helps is other parents in Cancer World.  I have been corresponding with a mom in New York.  Daughter 17, transplant on the 5th. Child in ICU with total Kidney failure.  A couple of fellows have crossed her path and not in a good way. 

I know the docs and other medical staff understand our rage and tantrums and our failure to always be the kindest.  They have been in this trench before with other parents and if they did not understand they would find another area of work. 

I do worry about the poor soul that fails to provide the frosted cranberry scone when it has been one on of those years.  I worry about them. 

Hoping for less damage in my wake as we travel through Cancer World.