Fighting Rhabdomyosarcoma

Lilo

Hello all,

My beautiful 1 year and a half old son was recently diagnosed with embryonal rhabdomyosarcoma in his middle ear. We have completed 4 cycles of chemotherapy and just discovered that the cancer has progressed. At first, his tumor showed great response to chemo and reduced significantly in size after just 2 cycles. However, new cancer growth from the original site was discovered in his last scans. The doctor suspect the growth was due to a subset of cancer cells that are resistant to chemotherapy. With the new early progressives diagnosis, we were given a 30% chance of survival. This is beyond devastating for the family. We will be heading down to Florida for his proton therapy in a couple of days. I would love to hear stories from people or caregivers who have fought or are currently fighting rhabdomyosarcoma. Any tips will be greatly appreciated as well.

Thank you all,

JP