Clear cell sarcoma of the kidney (Our son.)

My son was diagnosed at 3 with Clear cell sarcoma of the kidney stage IV, and now relapsed. 

I'm here I guess because there is no were else. My son was diagnosed with CCSK 2020. He was reported relapsed before his birthday this year and in "retrospect" last year. 

We are in the midst of troubles with the hospital my son attends. We are offered no hope with an unwillingness to try and help our son. Missing imaging on scans late scans, no wonder the retrospect. 

Today he had a scan that will basically determine his fate. And a wait for a phone call as we can't get our hopes up. The first 2 doses of chemotherapy did nothing according to our consultants, our second opinion slightly disputed it as some areas had improved. We have or more appropriately our son has now been treated with a different chemotherapy and waiting to see if has done anything. A progress of 25% or anything deemed new they will stop the treatment. 

I'm terrified. We tried so hard to have children and after years of struggling we had our babies, our boy and a girl our happy surprise girl. 

But my son....he might be just left with nothing and be taken from us by this disease. 

They basically told us from his reported relapse that "nothing will work" by the consultant. There is no hope and we should just give up without a fight. (Giving us months) We obviously thought we have to at least try.

Our son is a happy and very healthy looking boy. You wouldn't even  think he was undergoing chemotherapy if it wasn't for his Hickman line and lack of hair.

You wouldn't think he has clear cell sarcoma of the kidney stage IV and relapsed metastasis to his liver, pancreas and speckled all over his bones. He's running around playing ALL day almost every day. We are more exhausted than he is. 

We decided to seek treatment in Germany and are due next month. We have offered other countries samples of his removed kidney tumor that was the size of a rugby ball after shrinking. 

We are now on a mission to find a specialist in Clear cell sarcoma of the kidney as we have been told if we find one our consultants will be willing to talk to them.... Don't even know where to start. 

We have been collecting as much information on CCSK as we can. As there are not a lot of them. A rare cancer apparently. With no target in geans for therapy options. No new biopsy options, no radiotherapy options, no surgical options. Just chemotherapy... And they tell us that it won't work. 

All I can do at the moment is sit and wait for a call or an emergency appointment and fear the worst. 

I can't hope, I can't think, I can't sleep I can't talk. All I can do is type. 

I'm lost and feel cursed.

Was never a superstitious person before this.

i believed, still do(there's a but, now)  in science and the wonders of the universe.... But through our journey.  What I do know is that anyone's birthday is a bad omen for my son and our family. I dread them, I fear them. Because nothing good ever happens on them. In my son's 5 years on this planet, birthdays are a day of doom, mine , my husband's my mother's my son's, my daughter's my brothers and his children. There is one very very soon. 

I know it all sounds daft but that's how it has been with us. 

I should stop now it's long enough. 

Sorry for the long and depressing post. 

Updated... Our sons scans came back with some improvement so his VIT chemotherapy will continue for 2 more cycles.