Wednesday, March 26, 2014

Fanconi Who?

Sammy and Stacy returned from their 4 day hospital stay this evening (wednesday).  Sammy was admitted on Monday morning as we (read: doctors lack of foresight) stretched Sammy's platelet transfusion a day too long.  Sunday afternoon she had a bloody nose, and a threw up blood, which was a bit scary i must admit.  We had a clinic appt on Monday morning so we decided to not put ourselves through a weekend in the hospital ER (not recommended), and try to leg it out until Monday.  Monday morning came and poor lil Sammy was bleeding in her ear, nose, mouth and arse.  Halloween the Movie has nothing on that display.  Watching your infant neutropenic daughter puke blood will break anyone.  So we rushed her into ER on Monday cursing the on call doctors for their ineptitude.  Sammy and Stacy spent 3 days in the hospital with shifts from Baba and Daddy filling the gaps.  She stabilized with a platelet transfusion on Monday.  

On Wednesday we received the WONDERFUL news that Sammy AND Kaeden were both tested negative for Fanconi Anemia.  FA was the one genetic test that causes the standard (and most effective) chemo drug cocktail to be fatal if given to an FA patient.  FA patients still receive a transplant but on a slightly altered drug regimen.  In extreme cases, you can just give the "FA cocktail" to a patient if you can't afford to wait for the FA results to come back, but graft versus host disease, and probability of full recovery without relapse drops on the FA regimen.  

Given we have our magic bullet in Super Kaeden's perfect 10/10 HLA match, we want to give that bullet every chance we can to succeed.

This was the test we have been sweating out and waiting forever to find out.  Now we are full steam ahead for transplant.  

At the moment, T-7 (which is the first day of chemo) is scheduled for Apr. 2/3 and transplant should happen Apr 10.  Never have we been so excited to poison our daughter.  

We need chemo to kill off all of her marrow, so we have a blank canvas of sorts to inject kaeden's good marrow.  

Chemo and post transplant is no sunday drive.  post transplant stacy and Sammy will be in isolation and forbidden to leave the hospital room for 30-45 days.  That's not easy.