Still going one day at a time…. 

The bone marrow results showed donor engraftment. The cellularity( function ) was 10%, which was lower than they had hoped but she has another biopsy in May and they will watch it and she is engraftment so that is the good news. 

The hard/annoying is she is still on steroids for the GVHD rash and hospitalization in January. Long term steroid use can and has caused a whole ripple effect of side effects. So … she remains on blood pressure meds, she has upped OT|PT to 3 times a week( to get the fluid she had been retaining in her legs and butt moving and try to help alleviate the back pain). she has to mask outside while on steroids and she is still very compromised due to steroids effect on the immune system, and her latest PFT ( pulmonary function test) results from Friday I learned were stable ( the same as last month) with the same level of deconditioning. 

And the newest diagnosis is adrenal insufficiency. Her body had undetected levels of cortisol. So she has a new med to help with the latest. Steriods are just yuck. Everyone is working together and endocrin has jumped right in to help with adrenal insufficiency. They are hoping it is temporary due to steroids. Endocrin and Gyn also have a plan for how to make sure they can make sure she hits all the milestones of puberty and growing … again all of that will wait till after steroids. 

Today she had her pentamadine infusion for the month and we are going to try taking a step back down on steroids. We have tried this a few times before. Fingers crossed no rash flair up this time. The goal is to get off the steroids. 

Thanks for all the prayers and checking in. Sorry it’s been a busy month of appointments and figuring out all the moving parts.