10/29/2026
A little update on Levi. 🤍
This week has been tough, but so is Levi !
yesterday Levi successfully completed a 4 hour biopsy of lungs and flank results are pending.
We did reach out to St. Jude when Levi was born , they told us they didn’t have anything additional to offer.
Right now, we are desperately trying to find a hospital or doctor who has experience with giant congenital melanocytic nevi, proliferative nodules and Melanoma especially cases as rare and complicated as Levi’s.
When Levi was born, the initial pathologists diagnosed him with melanoma. A second opinion from UCSF could not exclude Melanoma but confirmed proliferative nodules. The difficult part is that proliferative nodules can sometimes closely resemble melanoma, and melanoma can also develop within a congenital nevus.
Since abnormalities have now been found in his lungs, his oncology team is very concerned that this represents metastatic melanoma. We did move forward with the lung biopsy, and now we are waiting for the pathology results, hoping they can give us more answers about exactly what we are dealing with.
We wanted to take the time to explain why Levi’s tumor so unusual:
Levi has a rare fusion involving ALK::ZEB2.
Pieces of these genes have joined together, creating an abnormal growth signal—like a switch stuck “on,” telling cells to keep multiplying. Targeted medicines aim to interrupt that signal. The response in some of Levi’s lesions has given us hope, but we still need to understand why different areas are behaving differently.
Testing also identified CTNNB1, a gene that makes a protein that helps regulate cell growth.
In some melanomas, abnormal activity in this pathway can also keep cancer-fighting immune cells from entering the tumor. Researchers need to determine whether Levi’s particular change is doing that.
Another question is whether his immune system recognizes the tumor as a threat.
Because it developed before he was born, we are asking whether his body may tolerate it as part of himself. That is a possibility being explored, not something we can say has been proven. His immune cells may struggle to recognize the tumor, reach it, or overcome other barriers.
This is why we are pursuing research into whether Levi’s immune cells can recognize the tumor’s unique features—and whether a personalized treatment could help them attack it. These possibilities still need testing, but we want to give the right researchers the opportunity to investigate them.
We are continuing to search, ask questions, send records, and reach out to anyone who may have experience with something like this.
If anyone knows a physician, hospital, researcher, Surgeon or specialist anywhere in the world who has treated giant congenital nevi, proliferative nodules, and melanoma in an infant, please send their information our way.
Please keep sharing Levi’s story. We truly believe the right person may see it. 🤍
