Happiness is hearing your doc say, “I am thrilled...!”

 

😄

 

Sam’s chest CT from Monday is much improved over the one from 5 months ago.  The lung nodules are shrinking, dissipating for the most part.  Still a few that are unchanged, and it’s still not completely normal, but, overall it’s much better than before.  

 

The best possible news.   

 

Fasenra injections are doing their job.   

 

Working diagnosis - suspected EGPA.   Suspected because we can’t get a definite diagnosis without a biopsy (lung, kidney or skin), and since recommended treatment wouldn’t change regardless of biopsy results, we’re just going to keep on doing what we’ve been doing.  

 

Because what we’re doing is working. 

 

I cried happy tears when I heard that.  

 

Rheumatologist said he’s going to be reaching out to immunology regarding the question we have about Sam’s tryptase, and possible mast cell involvement.  And then he’s leaving to take a job at the Mayo, in Rochester.....

 

😩

 

Cried some more after he told us that.   Not quite so happy this time because he’s been great to work with.  A good fit for Sam.  But he’s transferring Sam’s care to another doc that will be just as good.   She’s the one heading the research study they signed him up for today, on childhood vasculitis.  EGPA.  

 

https://www.seattlechildrens.org/directory/susan-shenoi/

 

Sam is currently the most stable he’s been in years.  We’ll be okay.  

 

😊

 

Best part?   After collecting blood, urine and saliva samples from him, they said us we didn’t have to stay any longer.   That we’d be finished in time to catch our original flight.  

 

Waiting for the shuttle to take us to the airport now. 

 

Happy.  

 

Relieved. 

 

“Thrilled” to be headed back home.   

 

☺️