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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Friday, September 26, 2014

Today is Mesothelioma Awareness Day

Earlier this week, Solomon's lead levels were tested again.  Unfortunately, this time, they were back up.  To 5.3 which puts him back in the "we need to find out what is going on" stage.  This level is not dangerous - it would need to be much much higher for him to suffer brain damage.  But it was high enough that we had to go back to LabCorp a few days later for a re-test, at a deeper cellular level.  Assuming those results don't come back under 3.0, that means it's time to try and find the source again.  I am praying that the county worker with the "lead gun" will finally get motivated to come out and do the investigation for us.

But why?  Why does Solomon have an elevated lead level when Hunter was tested and does not?  They're both young and live in this house.  I've been continuing Solomon's detox.  But one thing I completely slacked off on since this summer is that I have not been damp mopping the floors every other day like I was.  Did this contribute?  Lord willing we will find out more soon.

What makes some people more susceptible to some things and not others?  Why did Lilly have that 3rd copy of the 18th chromosome but most other babies in the world don't?  God knows, but we haven't figured it out yet.

Recently I was contacted by a family who's mission is to spread awareness about Mesothelioma cancer. This is an aggressive cancer caused by exposure to asbestos, that affects the membrane lining of the lungs and abdomen. The family asked if I would write a blogpost sharing their story.  I was intrigued.  I have heard of people getting cancer from asbestos, but didn't know it was called Mesothelioma cancer and didn't know anything else about it.

Cameron, Lily, Heather
When Heather Von St. James was 36, she diagnosed with pleural mesothelioma. ) She had been feeling really, really awful and had been losing 5-7 pounds a week.  Then she began to feel like a truck had parked on her chest and she couldn't breathe.  The diagnosis came only 3 months after she gave birth to a little baby girl named Lily Rose.  She was told she had about 15 months to live.  Thankfully she had good doctors and finally was able to have surgery.  One of her lungs was removed.

mother & daughter - still together
This happened 8 years ago.  Heather is incredibly fortunate to be a survivor and her daughter is so blessed to still have her mother.  With her husband Cameron, Heather seeks to share information about asbestos and mesothelioma.  Below are some things that I learned, from information they sent me.

Asbestos is a naturally occurring mineral in the earth.  So it will always be here.  However, it sounds like we need to leave it alone and not use it, as it has been classified as a human carcinogen.  About 30 million pounds of asbestos are used in building materials each year in the United States.  It surrounds us as it is in many homes, schools, and buildings.

In spite of the 30 million pounds of asbestos still being used every year, that number is actually down.  Asbestos use was at its peak from the 1930s through late 1970s.  During that time it was also commonly used in over 3000 consumer products including toasters and hairdryers.

Mesothelioma is most commonly diagnosed in men between the ages of 50-70.  However it is on the rise among women.  Those with the highest probability of having asbestos related health problems are U.S. Navy veterans who served during World War II and the Korean war.

I find it strange that it takes so long for mesothelioma to surface - it is dormant in the body for 20-50 years after exposure to asbestos.

Heather's diagnosis was rather unusual since she was a young female.  But cases like hers are on the increase, due to second hand exposure.  When Heather was a little girl, she often put on her father's work jacket when she went outside.  Her dad worked in construction and would come home from work with drywall dust just coating his jacket.  So Heather's exposure to asbestos was second hand, through her father's jacket.  (Heather's dad died earlier this year, from kidney cancer.  Was it related to his work with asbestos?  Doctors don't know.)

Every year, between 2,500 - 3,000 people are diagnosed with mesothelioma.  On average, they are given 10 months to live.  This number seems" low," compared to the huge amount of people that must be exposed to it every day.  But why?  Why the 2,500-3,000?  Why not more?  Again doctors don't know.  I asked Heather for her opinion.  She replied:  "I imagine genetics play a huge part.  Amount of exposure, type of asbestos exposed to, etc etc ... Too many factors to weigh ..."

There is currently no cure.  In fact, it is tricky to even diagnose because it mimics so many other respiratory conditions.  Symptoms include: chest pain, chronic cough, effusions of the chest and abdomen, and the presence of blood in lung fluid.

However, once the mesothelioma diagnosis is confirmed, chemotherapy, radiation, and surgery can help.  Heather's removal of her lung certainly helped her and she continues to feel great, 8 years after.  I think her obvious optimistic attitude and fighting spirit helped her too.

To learn more, here are a few links:

1) Heather's mesothelioma awareness website:
Be sure to watch Heather's video of her story - this makes it all so real:

2) Mesothelioma informational website, for patients and their families:

3)  Direct link from the above site, about treatment:

Heather says she and Lily are inseparable
I pray none of you reading this ever receive the mesothelioma diagnosis.  I'm sure many - if not most of us have been exposed to asbestos many, many times.  I am not sure but I seem to recall my dad saying he was exposed to it during his years of construction work in his youth.  I wonder about our wonderful old farmhouse we live in - it was rescued from it's dilapidated state and redone in the 1970s.  What about the stores we shop at, the offices we work at, the schools we attend, etc. etc.?

Of course we are not to live in fear.  But it is good to stay armed with information so that we can make wise decisions.  Just like with Lilly's 17 months of life.  I wish I had had more knowledge and wisdom about Trisomy 18 when she was born.  But I did the best I could and now, like Heather and her husband, our family seeks to spread awareness.

Thank you Heather and Cameron, for sharing your story with me and in turn, everyone reading this blog.  May God continue to bless you to touch many lives in your awareness work.

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