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Wednesday, January 31, 2018

Finding a Way to Breathe Again...

Thank you Peggy for these beautiful words of Hope.

who have simply slide into a chair beside us, gentling the pain,
giving us ways to find our breath once again...

You have been a sweet gift to us.

A Clinical Trial Success Story!

We need more success stories like this!

Come meet Earl...

In September 2015, Earl returned home to North Carolina after driving 5,500 miles cross-country for his first trip to the Burning Man festival in Nevada.  Concerned about a herniated belly button, he went to see his doctor.  Earl assumed the long, hard drive in his camper without power steering had put too much stress on his body.  The doctor came back with a diagnosis that was the furthest thing from his mind - stage IV pancreatic cancer, with metastases in his liver, lungs and fatty tissue.

Earl asked to call in his daughter, a physician,  Reflecting on that conversation, she says, "When you're hoping for the diagnosis to be melanoma, you know it's a very bad day."  Having treated pancreatic cancer patients herself, she understood they would have to act fast to make treatment decisions. 

His daughter immediately called colleagues to ask for referrals and flew to be with her father in North Carolina.  Reunited at the airport, the family cried and hugged before they left to start the process of setting a treatment plan.  They chose an expert medical team at Wake Forest Baptist Medical Center that his daughter describes as "an amazing team of doctors and nurses who were always enthusiastic, upbeat, caring and hopeful."

While discussing treatment options, Earl's doctor suggested a clinical trial.  Earl says, "I saw it as an opportunity to get the best drugs hospitals could offer, plus more." His daughter adds, "We know that clinical trials offer the newest and often best, options for treatment."  Earl enrolled in a phase I clinical trial for CPI-613, a targeted therapy aimed at cancer cell metabolism, receiving the test drug in addition to Folfirinox, a combination of chemotherapeutic agents.

After four rounds of the regimen, Earl's tumors shrank by as much as 30%.  One year after diagnosis, he was feeling great and his CA19-9 levels had come down from around 10,000 to below normal range.

Early in his treatment, he took a trip to Disneyland with his grandchildren.  Since then, he and his wife, Juanita, have visited family in Canada seven times and gone on many family trips across the United States, including a camping trip in Yellowstone National Park.  Earl and his wife have also made the cross-country road trip to the Burning Man festival again - twice.  Earl says, "Even though it can be hard, I remained hopeful, positive and optimistic throughout the treatment."  To help maintain his positive attitude, Earl and his family made a point to spend extra time together, which has brought them even closer. 

Reflecting on his family, Earl says, "They have been so supportive - especially my wife of 49 years, Juanita.  I recently told her she may have to put up with me for another 15 years!  It is an understatement to say I'm a proud husband, father and grandpa."

Earl wants to deliver a message of hope that pancreatic cancer is not a death sentence.  He encourages others facing the disease to find an expert healthcare team, actively seek out clinical trials and try to maintain a positive attitude.  His daughter, speaking as both a family member and a physician, echoes this advice, saying, "When you're choosing a healthcare team, you must consider their experience and treatment philosophy - it will impact your entire experience.  Seek out the type of team you want and always consider clinical trials because they are very important treatment options."  Earl is currently receiving treatments with CT and MRI scans after every four rounds.  His scans have been clear for months, and his CA19-9 levels remain below normal.  He still feels good, though his many adventures cause him to be tired sometimes.  He says, "I'm extremely active for a 70-year-old pancreatic cancer patient, and I don't plan to slow down because I'm on borrowed time."

These are the stories that make my heart happy!

and for promoting Precision Promise and the encouraging work of clinical trials for all cancers, but especially for Pancreatic Cancer...

Winging prayers of love and support to Earl and his family,
Keep up the good fight!

In Grace, Tonight,

Friday, January 26, 2018

This is What it Means to be Held

Such haunting lyrics... such Truth...

Two months is too little
They let him go
They had no sudden healing
To think that providence would
Take a child from his mother while she prays
Is appalling
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair
This is what it means to be held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved
And to know that the promise was
When everything fell we'd be held
This hand is bitterness
We want to taste it, let the hatred numb our sorrow
The wise hands opens slowly to lilies of the valley and tomorrow
This is what it means to be held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved
And to know that the promise was
When everything fell we'd be held.

Dear friend, if this is where you are... asking why this is happening... crying unfair... living a nightmare...

My heart is aching with you.  This song.  It speaks to the very truth that the cancer wounded walk each day...

May you know beyond a doubt what it is to be loved.  Even when the rescue fails and the sacred is battered.   Hold tight to the promise that when everything falls we'll be Held.

Grace for the Hurting, Mercy for the Grieving,

My Love,

Wednesday, January 24, 2018

The Hope we are Hungry for...

The American Cancer Society has just released their 2018 statistics for pancreatic cancer...

It isn't good news.

In the coming year, it is expected that 55,440 people will be diagnosed with pancreatic cancer.

Over 44,000 of these will die of pancreatic cancer... this year...

These are horrific statistics.  They represent men and women, individuals who we know, they are us, families that are facing the terrible nightmare of a disease that is brutal and ruthless...without regard to the children and spouses and loved ones who must attend the suffering that smothers hope.

When mom and I started this website and blog 7 years ago, it was expected that only 37,000 would be diagnosed with pancreatic cancer.

It's physically nauseating to know that today, even more people will be facing this devastating diagnosis.

The only small shred of hope is that the 5 year survival rate has gone up from 5% to 9%... and that is truly a small, very small, bit of hope.

So, where is the progress??  It is incredibly hard to hang on to hope... the current status quo for pancreatic cancer is simply unacceptable.  Our hearts cry out for Mercy

This seems to be the theme of our work here.  Our frustration rolls out regularly... in post after post...

Now It's Getting Personal

The Real Pancreatic Cancer Statistics

The Top 3

Let's Be Honest

The Cyclone of Fear

And so, if you are hungry for Hope {like me!}... this might be the story you need to see today...

It's called Precision Promise and it's being launched at the Pancreatic Cancer Action Network.

From their website:

"Precision Promise is the first adaptive clinical trial platform for pancreatic cancer patients in the world and the Pancreatic Cancer Action Network's groundbreaking initiative to dramatically improve patient outcomes and advance the organization's goal to double survival by 2020.

Designed with a nationwide team of leading clinicians, researchers and diagnostic and drug developers, Precision Promise will continuously and rapidly bring new treatment options to patients and transform the future of clinical research."

The Precision Promise initiative is becoming reality due to the generous funding gift from the Skip Viragh family.  This gift supports an adaptive clinical trial platform that will hopefully change the way we treat pancreatic cancer... and it is my continuing prayer that these new treatment options will ultimately give us the Cure we so desperately need.

In 2018, Precision Promise will open in 12 cities... these Clinical Trial Consortium sites will offer pancreatic cancer patients the opportunity to enroll in multiple trials that will evaluate new treatments alongside standard approaches, rapidly and efficiently assessing effectiveness. 

A unique aspect of Precision Promise is that, in one clinical trial setting, a patient has the opportunity for a second treatment when and if the first treatment is no longer working.  This has never been done before in a clinical trial setting.  This empathetic understanding is crucial for the pancreatic cancer patient.

It is a springboard to Hope.

It is the Never Give Up attitude that makes a huge difference.

If you or a loved one is facing the daunting decisions that a pancreatic cancer diagnosis brings, then perhaps Precision Promise will be a place to begin... a small light in the dark and a Hand that reaches out to offer Hope...

Prayers for Grace this night,
My Love and a Hug
(because you are never alone),


Friday, January 12, 2018

The Journey Home...

Over these past few months, we've had much on our plate...

It has been the most heavy of privileges, walking a dear mother home... our hearts have cried, the peace in our family has trembled... and in the days and weeks since, our spirits have slowly found rest.

In between the many, many trips home to sit at her bedside, we have watched Satterwhite raise our Log Home back here in Texas... it was as if we were living 2 wildly divergent lives.

Standing vigil to the ending of a beautiful life, just as we were beginning to see our life in retirement falling into place...

And that sweet mother-in-law asked us every time we came up how the house was coming along {heart sigh}... Right up to the end, she wanted to know the details, loved looking at the pictures we brought.

She was happy for us.  It was a gift... and this house has given us a bit of that joy back. In the midst of grief there is also hope.  A nod to the good in our lives, the legacy we leave in the dreams we follow...

The Satterwhite Log Home crew arrived in October with huge truckloads of fragrant spruce logs and we watched in awe as our home came to life before our very eyes!

Picture Overload Ahead (!) Just because, well, because, it has been a dream for so long... we don't take this treasure for granted, not for a single minute!

We're halfway home... log cabin is up and weather-tight,
now the interior work begins!
Each project is a step in the journey...
and that journey is a grand adventure!

Finding that grief and joy can somehow walk hand in hand...
Praying your steps lead to a journey of joy,
to legacy living of the sweetest kind. 

My Love,