May 8, 2026

We have walked so closely with grief over this past year. The ups and downs have been like a rollercoaster, catapulting us from extreme joy to overwhelming sadness and fear. First came the diagnosis of our precious one-year-old with cancer, and then his relapse a year after the diagnosis.

We had so much hope in this clinical trial. At least there was something to do, something with promising results. Even if when we got home it would mean a transplant—something I deeply dreaded. We got the call from our Seattle oncologist on Tuesday night that the T-cell therapy did not work. His biopsy showed 0.3% cancer— the same amount with which he started the trial. Things happen so quickly I hardly have time to process. One minute we are crying, and the next we are feeding our three kids dinner— the duties of a parent never end, even for the most devastating of news.

At 7:00 the next morning we were offered the opportunity to come home early, so less than 12 hours after we found out the trial had not worked, we packed up an entire house and were on a plane coming home. The numbness has turned to shock, anger, sadness, and hopelessness at times. As you know, this cancer is extremely hard to fight and not very responsive to chemo so we just felt like the T-cell therapy was going to work.. and it has on other patients before Oliver. We aren’t sure why it didn’t work but we do know that his cells expanded less than any other patient’s cells did.

Because there is still residual disease, Ollie is not currently able to go to transplant. This felt like a relief in some ways— I naively thought that we could be home longer or do outpatient chemo and be home throughout this next regimen. We got off the phone with our oncologist at UNC a couple of hours ago and learned that Oliver needs to be admitted to the hospital for a 4-5 week chemo course starting on Thursday, May 14 (one day before the anniversary of his first bone marrow transplant). He will likely feel the “typical” effects of chemo and will be very susceptible to infection so our doctor thinks it is safest to stay inpatient. Our oncologist is hopeful that since his disease is so low, this chemo could put him in remission so he can go to transplant. I now understand that being able to even go to transplant is not a given— it’s an awful thing to go through and yet we would be lucky for him to be able to do another one at this point.

I have cried so many tears in sadness and anger that Oliver’s childhood has been stolen by cancer, that he doesn’t get to go to school or go inside stores or be a normal kid, tears for my other kids who often have to  sacrifice their own wants and needs for their brother’s health and safety. Tears for myself and my inability to have a “normal” life and for Will, who has to stop and start his medical practice every time we get bad news.

I have felt so much hope, so much encouragement and positivity throughout this process... and now I feel tired. I am looking down the road and I know what’s coming and I don’t get the choice of walking through it or not. We will have to watch our child go through pain and suffering and in the best of scenarios get to go to a transplant again and experience more pain and suffering. I am discouraged and so sad that this is our reality.

I have always been very honest when I use this platform as a sort of journal to process my thoughts (not that I write all of my thoughts and feelings down, but when I choose to write on this blog, I give my most honest feelings and thoughts). I think there is always hope to be found, joy, peace, God’s presence through the darkest of times. I have never experienced the profoundness of Emmanuel (God with us) until Oliver’s diagnosis. But right now I am hit with an overwhelming amount of discouragement and pain and sadness. It won’t last forever, and it will not have the last word, but sitting in the pain is part of my process to healing and strength as we walk  this long and painful road again.

Thank you for your support for our family, your prayers, your faith on our behalf. It’s been a beautiful thing to get to experience. When we first heard about Oliver’s diagnosis, our pastor said that he was praying every day for God to give us our “daily bread”— that God would give us what we needed to get to the end of that day. And each day he would pray it again. Would you join us and him in praying that for each of us? That God would give us everything we need to get through each day and that we would take one day at a time.