June 9th to June 12th
Hey there, it’s Alexx. Reporting live from Harkness 11 where I am watching the Tony Awards with my mom. I’m working the night shift, but thankfully it’s quiet thus far so I’m able to hang with her. She’s so thrilled the Tonys are on, we’ve been singing along.
There’s been quiet a bit of forward progress the past few days. And now that she is starting to feel better she grows more optimistic and motivated each day.
In terms of her EBV, the level of the virus is now undectable!!!!
In terms of the CMV the virus has gone from 2.3 million to 1.1 million, and another level will be checked tomorrow so hopefully that’s even lower! She continues on the Foscarnet and the infectious disease doctors are pleased with her progress. She developed a UTI on Friday, as evidenced by lower blood pressure than normal. They empirically started Daptomycin, which was the right choice because the urine culture grew out VRE (vancomycin-resistant Enterococcus). Her vitals have been stable since then.
In terms of her HLH, they are monitoring her markers twice a week. The IL-25 is the most sensitive marker and that has come down from 8000 to 3000 to 1200 which is fantastic! The other markers, Ferritin and Triglycerides, did go up a bit when checked on Thursday. But they can fluctuate with inflammation and infection and will be rechecked tomorrow. For now they want to hold off on further chemotherapy.
Her white blood cell count is starting to uptrend which means her bone marrow is starting to recover again. The WBC went from 0.4 to 0.8 to 1.1 to 1.5! Her neutrophils are almost above 1000 which means she can better fight off bacterial infections. THe low counts were probably caused by the CMV virus, which can be toxic to the bone marrow; so as the CMV is treated, the bone marrow and counts get better. She still requires daily platelet transfusions and red blood cells every other day. But that should start to improve soon.
She is getting stronger every day. She is able to reposition herself in bed and even pull herself from lying to sitting. She has been using the foot bicycle and when she can’t sleep at night she does upper body exercises. The staff keeps commenting to me on how good she looks.
“I truly appreciate all of your love, support, and prayers. It makes all the difference in the world” Direct quote from our Aviva
Missing Reggie and my backyard. When my counts are better and my immune system is stronger Ric is going to bring Reggie for a visit. He can’t come inside but they can wheel me outside for a quick hello. I can not wait!!!!!