Jack the Brave
On May 19, after previous visits to our pediatrician for a “rash” (petechiae), we were told to bring Jack to Boston Children’s Hospital for blood work. From there he has been diagnosed with Acute Myeloid Leukemia (AML) with a KAT6A-CREBBP fusion. So much happened in the first weeks of being here as far as testing, procedures, chemo & other medication. Our healthy baby turned out to be very sick and this space will be where you can find updates and check in on Jack’s journey.
So much has already happened, so I’m going to just pick up where we’re at. Right now we are kind of in a “resting” period as Jack’s numbers come back up. He is neutropenic and we are waiting for his ANC (type of white blood cells that control his immune system) to climb before his next round of chemo. This morning it was at 50 and it needs to get to 500
The past two weeks he has been battling high blood pressure, a reaction to a platelet transfusion, high fevers, and some nausea. He’s gotten two spinal taps that indicated there are still cancer cells in his spinal fluid. He got a skin biopsy for a suspected “sweets syndrome” rash, but because he has no immune system we have to be certain it isn’t a bacterial or fungal infection- so far nothing has grown in the lab so we’re pretty confident it isn’t anything serious. He also got a feeding tube placed so that in addition to nursing we can sneak extra calories in. (He is refusing bottles).
Up next:
-bone marrow biopsy (around day 28 of cycle)
-waiting for his ANC to climb
-reviewing the next round of treatment
-hopefully going home for a bit before his next round of chemo