We All Want More Time With Josh

Nothing prepares you for this, our family’s world changed forever on July 3rd 2025. Josh wasn’t himself so I dragged him to the Emergency Department, it was there he was diagnosed with a brain mass. July 6th Josh underwent hours of surgery and had a successful resection (removal) of a large tumor that spanned both hemispheres of his frontal lobe. We would later learn Josh’s tumor was an unmethylated glioblastoma with the mutation EGFRvIII, meaning it is very aggressive and will quickly try to repair itself. The day after surgery Josh was up and walking. July 11th Josh had a blood clot in each lung and several in his legs. A filter was placed to catch clots and Josh returned to the ICU. Josh had to fight off sepsis and the accidental introduction of a staph infection. Over the course of five weeks Josh learned to walk again and was released from the hospital on August 2nd, our wedding anniversary. Six weeks of chemo and radiation started August 19th. September 15th Josh lost the use of his left leg due to pressure on the right side of his brain from radiation caused swelling. Steroids helped reduce the swelling and in a couple weeks Josh was walking again. October 14th, Josh again lost the use of his left leg. He spent three days back in the hospital to rule out a brain bleed or stroke. He had another MRI, a nurse practitioner that was part of Josh’s surgical team came to us the night of admission to tell us Josh had inoperable regrowth. This was the hardest night for us yet. We had been so hopeful Josh could participate in a trial. This gutted our hopes. The next morning Josh’s surgeon and oncology doctors came to let us know Josh didn’t have inoperable regrowth! Instead, radiation had again caused swelling and thus more pressure on his brain. Steroids were increased and Josh learned to walk for the third time.

Since Josh’s diagnosis every part of our lives has revolved around appointments, treatments, research and making difficult decisions quickly. Our hope now lives in pursuing specialized medical care that requires us to travel frequently to San Francisco.

In November we visited University of California San Francisco to see if Josh was eligible to participate in their Phase 1 CAR T trial for glioblastoma patients with the EGFRvIII mutation. Josh passed the trial parameters and on December 3rd we returned to UCSF for Josh’s T cells to be collected. This was especially hard on Josh because he had to taper completely off steroids to have the collection. We returned home December 9th and Josh was able to resume steroids. The swelling reduced and just in time for Christmas and he was able to walk again.

For the next stage of our journey, We will return to UCSF and live in San Francisco for six weeks for Josh to be infused with his newly modified T cells. His T cells have been modified to recognize the EGFRvIII tumor mutation, and the hope is that it will kill any tumor regrowth. Josh will need MRIs every three months. We will return to UCSF every month for six months, then every other month for six months, then every three months until the two year mark. UCSF hopes to follow Josh’s recovery for 15 years.

Thank you for the meals that nourished us when we didn’t have the energy to cook, for taking the time to accompany us to doctor’s appointments, and for watching over our home and dogs with such care and reliability. Each of these acts—big and small—lifted an enormous weight from our shoulders and reminded us that we are not facing this alone.

It has been exceptionally hard for me to think about starting a GoFundMe. Maybe it’s my pride? Maybe it’s hard to admit we need help? I’m not sure, but in the last week several of you have contacted me from out of state to ask if I have a way you can contribute. I also had the founder of Glio Leo reach out. Her daughter bravely battled Glioblastoma for five years. She gave me more of an understanding of what we face long term and after speaking with her I realized… we will need help to get through costs I didn't expect. We are grateful for any amount you can contribute to help Josh receive treatment. Funds will be used for travel, lodging, transportation, meals, and medical costs not fully covered by the trial and to pay insurance premiums.

Thank you for being part of our support system for something we never imagined we’d face and thank you for being there for us in ways we will never forget.

Your kindness gives us strength.

Josh has always been extremely active, from his professional cycling days to the years of chasing bird dogs. During this experience he has never been angry or mad that he has an incurable cancer. He’s never asked “why me?” He is sad, but he has an unbelievable sense of determination and humor through it all. His short- and long-term memory are intact. He knows his diagnosis. He said he wants to return to his job and the colleagues he loves, to see his grandson grow up, visit our oldest daughter living in Peru, see our youngest daughter graduate vet school, and to me he said “I haven't had enough time with you.”

May this give us all more time with Josh!