When I post about my Daughter, it's not to get sympathy. It’s to keep her memory alive. ❤️
Your Follow & Repost would mean so much to get our Voices heard in our #ChildhoodCancer community. 🙏🏻
I miss you, Ashley. 🩷
#Forever13
The cross does not promise that every road will be easy
It promises that no faithful soul ever has to walk it alone
Trust in the Lord with all thine heart
- Proverbs 3:5
In March 2024, at the age of 35, I was diagnosed with stage IV rectal cancer with a metastasis in my liver. This was a shock: I had no family history, and none of the doctors suspected it. After two years of chemotherapy, radiation, and multiple surgeries, I'm still not cured. Now I'm asking for help to get a personalized cancer vaccine.
This is my story so far.
Following diagnosis, I was treated with total neoadjuvant therapy at UCLA. I had 6 weeks of radiation and chemotherapy (Xeloda). This was followed by 6 rounds of oxaliplatin infusions and Xeloda. I tolerated this unusually well. During this period, I managed to hike up to over 11,000ft multiple times in the Sierras, and I wrote the main text of a 72 author meta-analysis paper and submitted it to Nature where it is still in review.
I showed a good clinical response, and at the end of October I had surgery: I was under for 9 hours, and they cut out a bit of my rectum, 1/3rd of my liver, and gave me a temporary ileostomy. Waking up from this was probably the strangest experience of my life: I felt more machine than man, and I had wild hallucinations form such a large dose of anesthesia.
It took a while to feel OK after that surgery. However, I still had the ostomy. I had that reversed at the end of January in another surgery, which took a greater toll on me than I expected.
I only just started to feel OK again and I got bad news: I got a positive circulating tumor DNA test (ctDNA), the signatera test from natera. Unfortunately, the ctDNA carried on rising, and in July 2025 a new lesion appeared in a lymph node near my liver (periportal).
I was treated with irinotecan and panitumumab infusions, which showed a good response, followed by live MRI guided SBRT radiation treatment to the lesion. However, after finishing this treatment, the ctDNA remained positive and began rising again. I restarted irinotecan and panitumumab infusions, which brought ctDNA back to negative (signatera), although it remained positive on the more sensitive Personalis assay.
During this period I had begun to develop stomach pain and digestive symptoms. Then I collapsed vomiting blood while out in Santa Monica and was rushed to the ER. They found out I had a duodenal ulcer that had bled. I had some blood transfused, and I was sent home to complete an intensive course of antibiotics for H. Pylori infection.
However, after about a week, I started to get very weak. I collapsed again and went back to the ER in an ambulance. They found my hemoglobin was 5g/dL, a dangerously low level (normal is over 13.5). Multiple blood transfusions didn't bring it up and I collapsed again in the night after passing a large amount of blood. They took me to intensive care and performed an emergency endoscopy where they clipped and sprayed the ulcer. Thankfully this worked and I was discharged after another 3 nights in hospital.
Unsurprisingly, nearly bleeding to death wasn't good for me, and my ctDNA began to spike rapidly. I had a PET-CT and it revealed 3 new disease sites in abdominal lymph nodes. I restarted irinotecan and panitumumab infusions after barely recovering from the ulcer incident. This showed an excellent response, with the sites resolving on imaging, although ctDNA remained positive.
I've now started bot/bal immunotherapy, a not yet approved immunotherapy treatment that is the first of its kind to show strong results in my kind of cancer, micro-satellite stable colorectal cancer. This was possible thanks to a donation from an anonymous benefactor and supporter of free and open inquiry in science.
Hopefully this treatment will be effective, but it is unlikely to be enough on its own to prevent future disease recurrence.
I am asking for help to get a personalized neoantigen cancer vaccine, which could substantially increase my chances of surviving this deadly disease that is likely incurable under standard care.
While cancer vaccines have shown promising results, they are not yet approved, meaning one has to pay for the design, manufacture, and administration of the vaccine. The total cost of which is $104,133, beyond my means or those of my family.
Any help would be greatly appreciated! I've started a GoFundMe here: https://t.co/Lttcfn4kY6. Please donate and share with anyone who might be interested in helping.
I've carried on working throughout this period and I'm still running a research group in statistical genetics at UCLA. I'm hoping to continue making contributions to science for as long as I can, hopefully longer with your help.
The loss of a Child is a wound the human heart was never designed to endure. 💔
It fractures every piece of you. The future you once held so vividly dissolves. Even breathing changes. Waking up becomes an act of courage. The world feels forever altered, unsafe, uncertain, hollowed out. Time marches forward relentlessly, while your life remains frozen at the moment theirs ended. You don’t simply miss them. You carry an ache that lives deep in your bones, in the hollow of your chest, in every silent second & every deafening one.
Milestones arrive, beautiful & brutal, with an empty space where they should have stood. It is waking each morning to a reality you would give anything to escape. It is learning, slowly, painfully on how to walk forward while holding a grief too heavy for any one person to bear. It is loving someone with such ferocity that their absence redefines your entire existence. There is no correct path through this sorrow. No timeline. No rules. Only the daily, quiet practice of learning to breathe around the vast, permanent hole they left behind.
This is a pain no parent should ever have to know. 💔
A simple follow would mean the world to us to give our #ChildhoodCancer Warriors a mighty voice & will help us fight so that one day, no parent has to bury their Child.
Thank you from the bottom of our hearts. 🙏
❤️ Ashley ❤️
#Forever13