Jeffrey’s Story

Site created on July 16, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place, especially those who don't use other forms of social media.  All of us (Jeff, Laura, and our daughter Katherine) have been thankful for all the support and encouragement that we have received so far. Thank you for visiting.

Jeff became sick in March of 2020, and in April he was diagnosed with hepatosplenic T cell lymphoma, a very rare and aggressive disease. We immediately reached out to Seattle Cancer Care Alliance, where we found one of a handful of specialists for HSTCL. We used to work at Fred Hutchinson Cancer Research Center, which is affiliated with SCCA, and knew that it was the best place for Jeff. The journey so far has been characterized by a lot of ups and downs. Jeff had a splenectomy to remove a large part of the tumor burden and was put on a course of chemo, four rounds of ESHAP, to prepare for a stem cell transplant at SCCA. The chemo was pretty brutal, and each round required a week-long stay at the hospital, with two weeks of recovery in between.  Due to the covid-19 pandemic, visitors weren't allowed for most of this time, which was especially hard on Jeff. Midway through the chemo, a liver biopsy seemed promising enough to proceed with the transplant, so everything was scheduled and we had an arrival date in Seattle and a timeline.

But the disease progressed more, and the symptoms of the lymphoma (particularly extended high fevers and serious chills) started to come back. Another biopsy confirmed that the extent of the disease was too great to continue with transplant. The news came on the last day of Jeff's last round of ESHAP, right after we received all of the intake paperwork to fill out in preparation for the transplant. We were heartbroken, but determined to keep trying. We went to Seattle to meet with the HSTCL specialist, Dr. Andrei Shustov, and discuss our options. There was a little floundering at home while we tried to figure out the best course of action, but ultimately we have decided to temporarily move to Seattle rather than staying here in Eugene, because we need a team who can closely monitor Jeff's progress and quickly pivot to a new treatment as needed.  This is nerve-wracking, as we have no idea how long we'll be in Seattle, or what to expect, but we've determined to do whatever it takes to give Jeff the best quality of life possible, and as many good days with his family as he can get. We're grateful for the many ways our support network has made this difficult time more bearable.

Newest Update

Journal entry by Laura McKnight

Tonight I had to get so many feelings out, and writing in my journal just wasn't enough, so I hope that sharing them here will help release them, so my brain and my heart can settle down.

_______

Somehow I managed to forget that today is our dating anniversary, until I was lying down with Katherine, waiting for her to fall asleep. It's not a huge anniversary to celebrate once you're married, but we always acknowledged it, and usually went out for dinner and complained about being stuck with the Valentine's Day crowd. I managed to let only a couple of tears slip through as I laid there, holding our daughter's hand, before I was finally able to sneak out of her room.

I checked my Facebook memories, maybe to torture myself, but now Facebook doesn't include posts where Jeff is tagged. I can understand why, it hurts when the memories pop up unexpectedly, but it also hurts that he's been erased in a way. I'm glad that I have so many photos of him and Katherine where he isn't tagged - they're precious to me, the ones we didn't print out and put in albums, the everyday silly moments that seemed so mundane, back when we didn't know time was running out.

As we get closer to the one-year mark of when he got sick, the daily memories take on a different tone, because I can't help but think how the happy people in those photos have no idea what's coming, no idea that this is the last time they'll eat in that restaurant or visit that park or take a trip together.

I know that there's still a future ahead, and there will be new happy memories. I know that Katherine and I will be okay, but it will never be the same.

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