Tuesday’s Pre-Op Test Results

Brain Scan:  Beautiful!  Nothing in there that shouldn’t be there.  Emily’s dad, Kevin, is convinced this is because her head was solid bone already though 😉

Pulmonary Lung Function:  Now this is a good story…

The technician (who had no idea why Emily was having the test) told her at the conclusion:  “You have great lungs!”  When he asked Emily why she was having the test, she said it was ordered prior to surgery.  The tech responded, “Well, it’s really important to have good lung function for surgery.  And that is not something you need to worry about.  Your lungs will get you through it!”  Emily, God bless her, did not have the heart to tell him that she was having surgery to remove one of them.

Surgery is now scheduled for February 4th or 5th, with a pre-op meeting with Dr. Flores on January 31st…meaning Emily and Miles will be in New York NEXT WEEK!

Many thanks to all who have reached out and given their support in finding a place to stay. Emily and Miles are currently chasing down all leads and will let those who have responded know if further help is needed.  They are so grateful to everyone for stepping up and charging into the search – they couldn’t do this without all of you!

Next Steps

The EmBen rollercoaster has not shut down.  When we last left off, we had just received the mind-blowing news that Emily’s PET scan revealed no cancerous activity in the lymph nodes or pleural lining, and little if any in the tumor site, and her doctor was pushing for an “outside the box” consultation for surgery.

The course of treatment most patients and doctors opt for is maintenance chemo every three weeks to delay reoccurrence, and many have been successful in living cancer-free for up to several years. Eventually, however, cancer can become resistant to maintenance chemo, and while this is currently Emily’s treatment method, she wants to be more aggressive.  Her goal is to be NED (No Evidence of Disease) for life.

Emily’s case is unique in that she is young and healthy (less than 1% of lung cancer patients are under 30), and she has shown remarkable progress with little complication.  Her cancer was staged level IV because it was in the lung’s pleural lining.  It now appears to be gone from there though, and has not shown up anywhere outside of the right lung.  For this reason, Emily’s oncologist, thinking outside the box, believes Emily can be treated as a stage III patient.

While surgeons in Japan are operating on advanced lung cancer, it is anything but routine in the U.S.  Emily and Miles have found their guy though – the Chief of Thoracic Surgery at Mt. Sinai Hospital in New York City.  Dr. Raja Flores has been a consultant to Emily for the past six months.  He has fully supported her treatment to date, and believes this is her window of opportunity for surgery.  The extent of the surgery will not be known until she is on the operating table.  Dr. Flores intends to remove anything that looks suspicious, and while he cannot guarantee the cancer will not return, he wants to give this 28-year old the best shot at a full life.  This means he may remove her entire lung – we won’t know until after the surgery.

Emily’s reaction?  She went straight to the mall and bought a new winter coat for New York.

Next up is a Brain MRI and Pulmonary Function Test today (January 22nd).

Preliminary planning is for a February surgery, followed by four weeks of rest, then six weeks of daily radiation in NYC.  Emily and Miles will then return to LA and resume maintenance chemo to be absolutely certain they eliminate every last cancer cell.

LOOKING FOR: A two bedroom living space in NYC or vicinity from early February through early/mid March, within 30 minutes of the Upper East Side with no stairs.  Does anyone have a lead?

EmTay, Miles, and EmBen on their daily four mile power walk around the Brentwood Country Club (unofficially known as the Lung Loop) in preparation for surgery.

EmTay, Miles, and EmBen on their daily four mile power walk around the Brentwood Country Club (unofficially known as the Lung Loop) in preparation for surgery.

Pounding Pavement, Pounding Cancer

Kelcey Harrison is dedicating Wednesday, September 5th as EmBen Kicks Cancer Day in the Great Lung Run!!  Now who is Kelcey Harrison you might ask, and what is the Great Lung Run?  To do the explanation justice we have to go back to June of 2009 where the story starts with an incredible young woman named Jill.

Jill Costello was a vibrant 21 year old college student, non-smoker, and coxswain for UC Berkeley’s NCAA Championship rowing team.  In June of 2009, she was diagnosed with Stage IV lung cancer.  Jill quickly rose to the challenge and set out to raise both money and awareness for this #1 most deadly form of cancer.  While Jill fought a tenacious battle against lung cancer, she passed away in June 2010.  Even though Jill was not able to beat lung cancer for herself, her spirit and commitment to the cause lives on in an organization aptly named Jill’s Legacy.

Jill’s Legacy was started by a group of young professionals including many of Jill’s close friends and family.  This is an entirely volunteer run organization dedicated to mobilizing young people to erase the stigma of lung cancer and raise funds for research.

Kelcey Harrison is one of these highly mobilized young people, and also a dear childhood friend of Jill’s.  On June 30th, 2012 she set out on a run from Time Square in New York City; Kelcey’s final destination – San Francisco!  This is the Great Lung Run.  Kelcey is running 30+ miles a day across the entire United States to raise money and awareness and to ultimately to “beat lung cancer, big time”, as Jill always said.

Bonnie Addario and Jill Costello

Jill’s Legacy is also a sub-entity of the Bonnie J. Addario Lung Cancer Foundation (BJALCF).  The BJALCF has been involved and incredibly helpful in Emily’s cause and word of her fight made its way to Kelcey.  As a result, Kelcey is dedicating Wednesday, September 5th of the Great Lung Run to Emily kicking cancer.  This is also the day that Emily has her third chemotherapy treatment.  While Emily is pounding cancer at City of Hope, Kelcey will be pounding the pavement to help her kick cancer.

For more information on the Great Lung Run, check out Kelcey’s website.  Or even better, get involved and help support Kelcey on the Great Lung Run!  You can either host her as she runs through your town, or “sponsor” her for a night by booking a hotel room along route so she has a warm place to stay and rest up.  Click here to check out the list of cities and towns that Kelcey is running through.  Do it for Kelcey.  Do it for Jill.  Do it for Emily.

For more information on the organization Jill’s Legacy, check out the Jill’s Legacy website.

To read more about Jill Costello’s incredible life and her courageous fight against lung cancer, check out this Sports Illustrated article.

Big Things in the Big Apple

Most visitors to NYC would try to squeeze in a visit to the Empire State Building or a Broadway play – not these two!  On a short trip to NYC for a family wedding, Michele (mother-in-law) and EmTay (sister-in-law) traveled uptown to Mount Sinai in an attempt to meet with one of the most progressive Thoracic Surgeons in the world.  Dr. Raja Flores took the time to review Emily’s case.  He was brilliant and charming and may be the answer to our prayers.

EmTay and Dr. Raja Flores

EmTay and Michele – All smiles in Central Park after a great visit with Dr Flores