Hope

Dear friends, 

This is an update I’d hoped I would never have to send.  Much has happened in the 23 months since Jim’s last post. After many years of his brain tumor being quietly stable, the grade III Anaplastic Astrocytoma originally diagnosed and treated nine years ago started growing again in the fall of 2016.  The past two years have brought multiple cancer recurrences, progression to stage IV Glioblastoma, and metastases in the brain and spine. We've moved through a series of treatments to slow the cancer growth: surgeries (2 more craniotomies and drainage of a subdural hematoma), clinical trial (TG02 + Temodar), high dose reirradiation, chemotherapies (Temodar and CCNU), Avastin infusion, steroids, and more.  I explained the litany of treatments and progressions to our daughters using the analogy of Voldemort in Harry Potter: Each time the Dark Lord surfaced, Harry and the team tried a new way to fight him back, but he kept reappearing stronger and with more followers. Sadly there will be no victorious “Battle of Hogwarts” in Jim’s cancer journey…at least not in the way we had hoped. Unfortunately, his most recent progression leaves us with no remaining good medical options to slow the cancer growth. We have shifted the goal of treatment to palliative care and earlier this week he enrolled in hospice. 

Jim remains as inspirational as ever, even in spite of some challenging symptoms. His aphasia makes it difficult to communicate—he can say a few words at a time but they aren’t always the words he means; he does not read or write. He has occasional confusion and memory difficulties. He has limited use of the right side of his body: he cannot see anything to the right of midline or use his right hand/arm, and his right leg is weak. He walks short distances with a cane, but can be unsteady so we walk with him (which he finds terribly irritating) to make sure he doesn’t fall. His pain is minimal most of the time, but he has begun to have intermittent periods of nausea that are quite unpleasant. He moves slowly and sleeps a large portion of the day.  We expect all of these symptoms to continue to gradually worsen as the disease progresses.

He DOES know who we all are, remember us, love us, smile, laugh, communicate (comically and effectively) with his expressions, and get annoyed when we make a fuss about him. He still enjoys the Notre Dame Irish, funny videos, silly socks, flags, holidays, fresh flowers, warm fires, and desserts made with apples. He still loves watching the snow fall, feeling sunshine on his face, seeing autumn leaves turn, driving around town, sitting next to me, seeing our girls happy, “grossing out” our youngest by kissing me in front of her, and so much more. He’s still Jim.

Hope has been a hallmark of Jim’s cancer journey. We have not given up hope—we’re doubling down. The focus has shifted, though, from hope for the effectiveness of the current treatment to hope for the abatement of symptoms, hope for quality time, hope for peace for Jim and for all of us who love him.  Most importantly, hope for a loving God and the promise of eternal life and a connection that remains always.

We hope to still have many weeks together, but we’ve learned to take each day as it comes.  One of the gifts of this diagnosis has been the reminder that life is unpredictable and precious and we need to live meaningfully and intentionally every single day. I know that Jim has touched so many of you. Please don’t wait until he is unable to understand you, or worse until his funeral, to reach out and express your love and appreciation. Let’s send him on overflowing with confidence that he made a difference in this world and lived well the call to love and serve.

Thank you for the love and support you have shown to Jim and to me and to our family these past nine years. Thank you for being with us now.

Much love,

Marcie