Words we shouldn't know how to spell

Mom
Dad
Run
Jump
See Jane Run.
Run Jane, Run.

Those are some of the first words we learn to write.  Eventually we branch out into more difficult words - School.  Mother. Father.  Homework.  You get the drift.  And by the time we're in our 20s we know how to spell more words than we can every use in a single day.  And it's all inside our brain, nesting away until we need them.

I learned a word last year that I wish I'd never heard of.  It started off hiding from us by masking itself inside other big words  Kidney failure.  Liver failure.  Englarged heart.  Cirrhosis.  Congestive heart failure.  Cancer.  But all those were small words when compared to the real one.

Amyloidosis.

Amyloidosis is a disease of the bone marrow/blood cells.  Amyloids are produced in the bone marrow, and is something that everyone has, but most people have the ability to get rid of them normally.  A few people - not the lucky ones - develop a condition in which the amyloids build up in the blood stream and deposit themselves on various organs.  As they build up on the organs, they cause them to fail.  Only a few people are diagnosed with Amyloidosis - maybe 1,200 -1,500 each year.  I suppose those few could consider themselves "lucky" - in that they received a diagnosis.  Most doctors hav never heard the word.  Isn't that special - we know words that highly educated doctors don't know?  Many times, the disease mimics other conditions and the doctors don't diagnose in time.  The big words we learned first we heard for six months before chance dealt us a card and a doctor who randomly ordered a particular test because he happened to attend a conference the week before.

There is no cure for Amyloidosis.  Prognosis is terminal.  The trick is diagnosing it in time so that certain procedures can be taken to reduce the effects and before the affected organs fail completely.  And it turns out that the most effective treatment is also the most dangerous - autologous stem cell transplant.  Another big word or four.

Stem cells are the roots of our bodies.  They contain the blueprints for how how our bodies work.  By harvesting stem cells from a patient, then killing off all the bone marrow where whole blood is produced, and then giving back the stem cells, the hopes are that the stem cells will return to their places and start doing the work they were intended to do, without the bad bone marrow getting in the way.  The bone marrow is removed by a single shot of Melaphan, a posion used for chemotherapy.  It affects the digestive tract as well as the bone marrow.  It causes hair to fall out.  It makes taste buds disappear.

My sister-in-law was diagnosed with Amyloidosis in 2010.  Since then she's undergone "normal" chemotherapy, and most recently a stem cell transplant, in the hopes that the Amyloid production will be halted and her affected organs can start to heal.  It's been a rough ride - she's now experiencing complications and the doctors aren't sure what is going on.  Since the stem cell transplant, her body isn't producing white blood cells, platelets, and other things essential to her well-being like it should.  Those really smart stem cells seem to have encountered a road block of some kind and are having a tough time getting back to where they belong.  I worry about her every day.  I worry just as much for her family, who is pretty much left to sit back and watch and hope that the doctors can "fix it."  All we can do is sit by and watch, and try to encourage her.  It's hard - her spirit is starting to wear down.  Whose wouldn't, after being in the hospital for 20+days, with no end in sight?  We're hoping her numbers go up soon, so that she can at least spend one or two nights in her own bed.  And at the same time, we want her to stay in the hospital so that the doctors are near.  And yet life goes on - we have to continue going to work, and taking care of our own kids, while she's fighting for her life just a few miles away.

All these big words.  Once upon a time, I liked learning new words.  Knowing big words made me feel smarter than the average bear.  Now - they makes me feel helpless.

We love you Dea - keep fighting the good fight!