I never expect to get another name of Joey's cancer after I sent his slides to Dana-farber, NIH, Children's oncology group, etc. tRCC is rare enough for me to find patients and treatment plan. As I continued to look for answers, I finally decided to send his slides to the most renowned pathologist in John Hopkins. Result came out it either PEComa or tRCC. I was shocked. The pathologist confirmed: your son's tumor is challenging and I can't give you a sure answer.
I searched PEComa and found a long post from adult PEComa patients all over the world. It is an even more rare tumor than tRCC and there is no case of pediatric PEComa reported in this country. They mentioned two names. I contacted one of them and unfortunately he doesn't see children and he assured me that he never heard of a child who has PEComa. Then he referred me to a pathologist in Harvard who sees PEComa.
I called to have Joey's slide sent to Harvard. The lady in pathology office recognized my voice, "It's you again!" I feel very appreciated they are patient with me and always sent his slides without delay. They almost ran out of tumors after I sent them to 7 different institutes. 3 days later, Harvard sent me the report, it is PEComa. Reading the report, I couldn't believe my eyes. Another name? How about prognosis? treatment plan? is it genetic? All the terrible ideas came to me.
In the next 3 days, I have another file of pediatric PEComa I could find in literature, none in this countries, but some in Asian countries. No treatment plan is clear and surgery is the only curative method if the disease is local. By this point, Joey has went through 5 months of oral chemo and 2 cycles of IV chemo. They both failed him. I'm mentally exhausted. We know so little about his disease since either is so rare, but in the other way as parents, we know too much, immunohistochemistry, target therapy, immunotherapy, etc, which scares us.
I decided I'm done sending his slides for more opinions. Human being doesn't have an answer. Joey's tumors overlap both cancers and the treatment plan needs to cover both. The only choice is to keep trying. Keep trying, keep trying until we find a cure someday. We will never give up.