To Vaccinate or Not To Vaccinate... WE have the luxury of asking that question.

Rotavirus vaccines are being rolled out across Africa at a remarkable pace thanks to the support of the GAVI Alliance. To date, 21 African countries have introduced rotavirus vaccines in their national immunization programs (NIPs), of which 17 were supported by GAVI. PATH, through the Vaccine Implementation Technical Assistance Consortium, has successfully assisted and supported GAVI and countries in the design, planning, introduction, and/or integration of rotavirus vaccines. 

It baffles my mind that there are people out there that choose deliberately not to give their child the best possible chance to survive and grow into a healthy child.   The article above was posted by Kathy Neuzil MD.  She works for PATH.  They work on educating people around the world on the purpose and need for vaccinations.

I think of all the people that died of small pox, and suffered from Polio or died of Whooping Cough.  It just makes me crazy. 

I know there are lots and lots of scared moms that are sure vaccines cause autism.  There lives were forever changed because of that diagnosis and they want an answer.  I certainly would want an answer but over and over again the link is not valid.   Unfortunately many of the times that Autism Spectrum disorders manifest themselves at some point during a child's development, chances are there is some sort of vaccination that has happened. 

Now I am not a medical professional, I don't have a degree in Public Health, I had the mumps, measles and chicken pox and lived to tell about it.  I was also vaccinated with everything that was available.   I hated each and every time ME had to have her shots.  I started making her Dad take her to those appointments.  But

I also know what it is like to watch a child suffer and struggle fighting a disease.  Why would anyone not prevent a disease if they could.  If there was a vaccine to fight childhood cancer, I would be the first in line to make sure every child received that gift.

I can't talk about this issue anymore.  Neither can I talk about guns.    

I have seen too much death of young innocent children and the destruction is does to their families.  

Just so we are clear, I gained a new appreciation for donuts and Spam after our trip across the country.  I also craved fresh veggies and green green salad.  

Just Give Me the Answer!!!!!

"There are no Answers only Arguments"

Famous words were spoken by Neil Franklin to his Civil Procedure class in about 1983.  One of the OCD CPA's that decided adding a JD to his name would be easy.  He wanted answers, he wanted certainty.  He was in the wrong world.  

Law is about change, pushing the envelope, finding new inroads to old systems.  It is about the creative expanding the boundaries of the old set rules.  Many things we take for granted were taboo and forbidden many many years ago.  Women voting, blacks voting, Asians and Whites marrying in King County, being able to marry anyone you wish, despite apparent gender designations. The law is giant amoeba and we are better for it. 

Medicine is very like law. Always learning, always changing, always developing.  Not that long ago the barber was bleeding patients and they were doing transfusions with goose quills and lamb blood.  Yes, we have come a long way but we still don't have all the answers. 

Childhood Cancer is a huge amorphous amoeba.   Every single person I have ever encountered has a Diagnosis Story.

We noticed _________________
We took the child to the doctor______ times.
We had___________ tests.
WE had ___________ scans.

They did not find it until________ months later. 

Common story.  Horrible stories. Great fear that if they had found it earlier something could have been avoided.  We know that if you catch the cold early the pneumonia won't come.  Wish that was the case with childhood cancers.  

Yes, early detection is good but boy I don't see it makes the treatment shorter or cancer is avoidable if you find it early.  It is sort of like being pregnant.  You are or you are not... 

There are so many times during this process that no answers are readily available.  Very few tests/scans/examinations or other woowoo magic give you the answer.  Most likely it is a process of elimination.  

Meb's sort of went like this.

Swollen Optic Nerves
Not high blood pressure
Not diabetes
Not kidney failure
Not leukemia (first blood draw)
Might not be a brain tumor
Mass sitting on the top sagital sinus
Maybe a brain tumor
Not metastasized bone tumor
Not a brain tumor

Oh, leukemia.  (second blood draw 2 months later in anticipation of biopsy of mass.

For years, yes years, Mary-E has had her blood cultured.  Only once has there been a positive.  They were used to exclude fungus, bacteria, lots of nasty things.  Only after something grows do they investigate further.  It is a long process and there are no answers, no easy answers. It is not TV medicine.  

We all want the easy answer.  Actually we would take any answer.  Even if it is a bad answer because the not knowing the answer is crazy making.  Not knowing makes me go to a dark scary horrible place. I meet many of my other peeps there.  The mom's waiting, wondering and hoping for a good outcome but we know. We know better.  We know it is bad.  
But then we think "It could be worse".  I remember sitting and waiting to see the brain surgeon at Seattle Children's.  We sat near the Hem/Onc desk and I watched the small bald headed children  being checked in. I said a little prayer and thanked God I was not waiting to see "Those" doctors.  Boy was I wrong...  

But we did finally get an answer.  We knew what the problem was and had a plan.  A way forward. It was a good thing.  

Knowing is always better than no knowing.  After you know you feel like you have SOME control over what is going to happen. It is a good thing.  Each and every time there is a levee in the road and you are frustrated and ready to pull out your hair and kill the next person who tells you "no we are out of blue berry muffin, you remind yourself that you know.  

Sometimes knowing has to be enough. 

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

Second Circle (Lust)

Gianciotto Discovers Paolo and Francesca by Jean Auguste Dominique Ingres

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

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. 

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.

 

 

Sometimes things just GO

It's not right or wrong, it just is.  All day, we spent all day at the clinic.  No way around it, and someone asked if spent a lot of time waiting and we really did not.

In at 10:30:  Back into a room.
Heat the child
Look for vein that wants to cooperate
Look some more for a vein that wants to be invaded.
Look again.
Look yet again.
Find the vein, Mom looks away.

I want her to have a port put in because I cann't stand the pokes but then I don't think that is a reasonable request.

IVIG, 138 minutes plus a flush or two.

Then a doctor appointment.  Never were we bored or kept waiting, not really.  It just is how the day goes.

I am practicing the "nature, time and patience" chant a lot.

I spoke to Michael Reinfelt today.  His daughter had a transplant many moons ago.  He and Susan came to visit us during transplant.  He told me it took about 4 years before life really settled down. 

I guess we have a bit of a way to go.  I can do this.  She can do this.  Sometimes I just assume this is going to over and done.  We have had no big set backs, no big serious issues, no ICU, no drilling of bones to stimulate growth. 

WE can do this, we can do this, we can do this.  Said three times while twirling around.

Now if I could just figure out why I have the urge to buy wine and make Muffalletta sandwiches.

Cancer World is hard to understand.

We are here.  We are still your friends. We don't call you back. We can't write a thank-you card.  We certainly can't schedule anything.  We are here.  We know you are there. You have helped us all so so much.  Calls notes, offers to stay with the child. Errands, money, coffee cards, groceries, meals, hugs, open ended offers of help.  Prayers, novenas, more prayers, chains of prayers, the list is endless.  We know you are there while we are in this box, in this tiny space with a very very small part of the population. 

We worry in ways you don't. We fuss about things that you have never heard about. 
We talk a different language.  We have different acronyms and lots of weird stuff in our car and in our purses and in our homes.  Some of us have more than one home and Ronald McDonald means a completely different thing to us than to you.

We are sad about different things.  We look at our children and your children.  They have all had there struggles and challenges.  Ours have a certain flavor. You never had to see our child pull out handfuls and brushfuls of hair.  You never had to tell you lovely daughter she could not go to her first dance with her best friend that came from Chicago to visit because her "counts" were too low.  You never watched your daughter secretly die in bits and pieces as her friends go back to college while she monitors her blood sugar and worries about every surface she touches.  You never had to try and explain to her why her friends don't want to visit or come by or take her somewhere "safe".  You understand how hard it is for them to have a friend that has had cancer not only once but twice.  She does not understand why they are afraid, reluctant.  

But, we are still here.  She is at home. She has only been back in the hospital twice.  She is not like Mario in ICU bleeding from her lungs  while having her life supported by a respirator.  She has never been in the ICU.  I can't imagine what Mario's parents are doing right now. 

Mario, Luis, and Mary-Elizabeth had double cord blood transplants with-in days of each other.  They are 18-20, they all had relapsed ALL, they are Hispanic. They have lovely parents and Luis's grandmother makes killer mole'. We have all spent time together, complaining, crying, laughing and learning how to live in Cancer World for the second time.  It is so worrisome when one of the kids is sick.

 I guess being in Cancer World means there are no boundaries between your personal pain and that of all the parents and kids. 

Can you tell that I spent too much time at the hospital today. I had to vent.  91degrees makes me grumpy. 

This was my fortune cookie yesterday.

So What are you doing now...

When did you get admitted for the transplant?  January 16th

When was the transplant?    January 24^th

When did you leave the hospital March 20^th.

When was day 100?  May 4th

When did you go back to Children’s? May 16th

So now what?

GVH WARSSSSSS

Graft Vs. Host /New Cells are working –yeah.  They don’t recognize their new body-boo

This is a very weird space.  Here we sit.  The line is gone so things like swimming are possible.  (Only in the deep end, only when kids are not in the pool, only, only, only…..)

This is about the time everyone sort of thinks life should return to normal.  It feels like it should.  It feels like there are not big goals and accomplishments and on-line classes, returning to work, big trips, back to the real world.  I think both of us feel like that should be the case but there is this big cloud.  The GvH cloud that seems to be hovering.  It is like we are stuck between floors and there is no one on the other end of the line. They will be there soon, but not now.

Mid-August she completes her Prednisone taper.  We hold our breath, a collective breath holding.  Did it work?  Will the GVH come back?  Will the new cells have learned to love the new body? Will it be time to really see and start to taper off the tacrolimus?  Lots of questions and no way to know the answer. 

So the answer to “So what are you doing?”  is waiting, watching, preparing, staying close to home.  Wondering, hoping, dreaming, investigating, sorting, purging, quilting, jamming, gardening, even reading.  Half-way through.  

If it is not one thing......

So I have been thinking we could explore some time away from the hospital.  Maybe we could figure out some time that was not infringed on by a clinic appointment, a dressing change, drugs that need to be picked up, maybe we could just go, and be done for a week.

Silly Silly Sally.  We went to clinic yesterday and it was looking grand.  The line let loose of the blood required for labs.  The weird bumps were just dry skin.  The cold will just be here for a while, Ellie Mae is making attempts and it has not become pneumonia so every on is thrilled.  The "bleeding" happened in record time.  So we walked out and had until Friday ahead of us. 

I decided that since I had been so so worried about the line and the everything I would just take the day and do only the things I wanted to do.

That last 2.7 hours.  When will I learn not to answer the phone.  When...... her levels are not right.

Back today or tomorrow for a bag of IVIG. Her immunoglogbluin is way low so she needs an infusion.  Her tacrolimus is high and her head re-affirmed that this morning.  

 See even Lucy is miffed.

I guess I have to reach back into my memories of her first few weeks.  Her new immune system is must shy of four months old and it is not ready to sleep all night.  It is impossible to put the baby to bed and watch a whole movie or drink a hot cup of coffee.  I better go take a shower while the baby is sleeping and do a load of laundry. 

The things that just happen.

We sort of missed winter.  As I look out the window I see everything coming to life.  It is very calming to see what happens despite the fact we are not actively involved.

No wonder our ancestors were so in love with Spring.  But when I think about it, they were cognisant and aware of each of the seasons.  They thought they had to do some thing to make the seasons change. 

We thing we are helping Mary-E rebuild her immune system.  In reality we are just waiting for it to happen "naturally" Most of everything we are doing is to keep from happening:  infections from fungus and bacteria and creepy crawly stuff and viruses.  The rest is just happening. 

The body is just doing most of it.  The cells went into the bone by themselves. Once they arrived, they started to become working bone marrow.  They are now branching off and making the different kinds of cells that make up a fully developed grown up real person immune system.  We are just trying to give her body time to grow the new system.

After the world's longest eye exam, I asked the doctor (sort of reminded me of the absent- minded professor) why the skin and eyes were so susceptible to GVHD.  (Graft vs. Host Disease).  He was the first person to explain to me the body is constantly under attach by the environment.  The skin, the eyes, the gut.   So as the new cells wake up they attack these areas first.

So we wait.  We watch the leaves emerge, the tulips grow and gain color, a few weeds come and the birds build their new homes. 

Taking a moment and enjoying the spring, happy to know that we don't have to sacrifice any animals to make it happen.