Dear friends and family,

Today is probably the heaviest time we have known. At today’s oncology appointment we learned Caleb has a very rare liver cancer.  Our dear sweet Caleb has fibrolamellar hepatocellular carcinoma.  His specific case has metastasized and is stage 4. It is inoperable and the other treatment options are worse than the cancer and probably won’t even extend his life. We asked what kind of time it would give someone and the response was “Around 3-6 months, but that estimate is going to be wrong”. It seems Caleb’s decline and advanced state makes for a pessimistic time frame. We asked many other questions. Thankfully, pain management shouldn’t be complicated. In the end as his liver shuts down Caleb will continue to be increasingly tired, increasingly less interested in food, spend more and more time sleeping until he will inevitably spend his last days unconscious.

As I write this my eyes brim with tears. I already miss Caleb doing projects as he spent the last few days in bed and hasn’t done any projects in that span. He probably won’t go on another a walk, do another puzzle, sticker book, lego kit, or sewing project. In the recent hours we have reminisced about how much we love Caleb. It’s counterintuitive that even though Caleb hasn’t measurably expressed interest in having a relationship with us we just can’t help but love him so very much. If this is how we feel about our nonverbal, autistic son with cerebral palsy, how much more does Jesus and our heavenly father love Caleb and us. I’m overwhelmed trying to comprehend God’s love. 

We will continue to make updates. If you have any specific questions feel free to call me (Joe) and ask.

Peace, comfort and grace for Caleb in his decline. Also the same for our family and friends as we all process this news and the inevitable.

Thank you for your thoughts, prayers and support. Our community of family and friends have been there time after time during this. It is immeasurable how much it means to us. We have experienced and felt God’s love and provision through you all.

With a heavy heart,

Joe