Just remembering how we did an exercise holding our breathe like 30 seconds in class and I absolutely could not and I was just looking around like “damn do I have weak lungs” and then a month later had to have my whole lung removed because of a giant tumor?? Lol
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 or other (non-LCH) histiocytic sarcomas cases.
I'm trying to understand non-surgical chemo and targeted therapy options, new pathology markers to better diagnose subtypes/treatments, and any data on progression in pediatric patients. Please feel free to share – I’m trying to cast a wide net due to the rarity of this condition and how little is known.
People can contact me directly at my first name (as written in my profile) at https://t.co/ubo0zQRMn0.