Paul’s Story

Site created on January 31, 2015

Dear Friends and Family,


Welcome to this CaringBridge site. We hope that you will come here for updates on Paul’s health and to share your love and support for Amy and Paul.

In the fall of 2014, Paul was diagnosed with Stage IV esophageal cancer that had metastasized to his liver.  Paul’s doctors gave him 6 months to live.  Paul has far outlived that initial prediction – a testament to his doctors’ care, to the love and support of his wife Amy, to their kids Lucas, Megan, Brice ,and Iris, their grandchildren Quentin and Celia, and perhaps most of all, to Paul’s incomparable zeal and will to live. 

Over the past few months, Paul has started to decline as the cancer has spread to other areas of his body. Paul is experiencing increasing weakness, fatigue, neuropathy, bloating, and a loss of balance that have made it very difficult for him to walk, type, or perform any task requiring balance or fine motor skills.  

At the recommendation of his doctors, earlier this month (April 2020) Paul and Amy decided to cease further chemo and other treatments intended to eradicate the cancer, as their toll is not worth the minimal gain they might offer.

Paul’s medical care is now purely palliative – designed to make Paul as comfortable as possible for the rest of his life.  As of this writing, Paul is enjoying spending his days at home.  He’s low on energy and walks little if at all, but is comfortable, eating well, and is the same brilliant, curious, conversational, loving, and lively person you all know and love, if a tad more soft-spoken.

We will provide periodic updates on Paul’s condition here and ideas for how you can best support Paul, Amy, and their kids.  For starters, please share your stories, love, appreciation, photos on this site. 

Thank you.  Your love and support mean more to Paul, Amy, and their family than you could imagine.   

Newest Update

Journal entry by amy crum


Dear Friends,

I’m writing with an update on Paul’s health.

For the last 4 months in hospice. Paul has enjoyed his life, coaching artists, daily calls from Brice, Lucas and the grandkids, and frequent visits from Megan. It's been a beautiful summer in our Chicago river oasis.   

Back in April, Paul had 4 or 5 small tumors in his brain that seemed not to be causing significant problems for his thinking or comfort.  But, over the last 4 months, Paul began to experience more and more fatigue and pain – especially headaches.

Last week, Paul went off hospice and back on Medicare so that he could receive medical treatment beyond standard hospice care.  On Tuesday of this week, Paul had a brain scan during which the doctor discovered 11 tumors in his brain including some that had previously been treated with radiosurgery, but have  increased in size. 

Paul then had to decide amongst three treatment options that the doctor presented to him:  do nothing; do a targeted treatment focused on one worrisome tumor or get radiation of the his entire brain.
Paul opted for radiation of his entire brain.  He had his first radiation appointment today and will have 4 more treatments over the next 4 workdays.

We expect that Paul will lose his hair and be more tired for a while, but ultimately be in less pain. 

Going back to the hospital has it's perks;  a trip down Lake Shore Drive, Shake Shack burgers and fries.  Paul  hadn't been in a car since April, so seeing the lakefront again was pretty special.

Paul and I are so thankful for your love and care.  Thank you to our amazing kids. Thank you to all our wonderful neighbors and cherished friends who have checked on us, delivered delicious food, and kept us laughing.

Thank you to all of you who shower love on Paul via Facebook and your texts and emails.

Love,

Amy + Paul  

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