Quick update: Thanks so much for the outpouring of support and help. We learned a lot in the last week and the tumor is actually a myeloid sarcoma likely derived from early AML, with the hope of possible targeted therapies as well (KMT2Ar). We have a long road ahead of us, but the last week has made it much more clear on the diagnosis and what to do next. Thanks again for all the help. I feel like we have turned over every rock, we are getting great care and in touch with all the relevant folks. 🙏
It’s been a tough few weeks. My 10yo daughter was diagnosed with a very rare, aggressive cancer called interdigitating dendritic cell sarcoma (IDCS). I’m reaching out to identify clinicians/patients who have encountered pediatric IDCS, indeterminate dendritic cell histiocytosis
