This photo is Liz in the Infusion Center, or "Day Care", as frequent flyers call it. Patients who are receiving chemo, transfusions or getting lines started before certain procedures go to the Infusion Center. I have to say, I am always struck by how especially wonderful the nurses are in this part of the hospital.
Liz was angry at being there (which is a horrible sign of how she'll act having to be there for 5-8 hours a day every three weeks, for IVIG, starting next week), but she was happy to have her daddy's Ipad to play with.


Yesterday's bone marrow aspiration went well. It was a pretty uneventful trip, which is exactly how we like it! Liz's pain has been less than after the last BMA and she tolerated the sedation fine. Last night she developed a fever, but I felt it was from a virus rather than post-aspiration infection, so I stayed put at home rather than heading to the ER as we were instructed to do if a fever came on.
Sure enough, she is sick today with chills, a cough, congestion, headache, and runny nose. We are praying it stays simple and doesn't turn into pneumonia again or yet another sinus infection. She cannot be on an antibiotic again as it starts the CDifficile cycle all over again each and every time.
We have an appointment next Wednesday with the Hem/Onc doctor to get results from the BMA. Tuesday she will begin IVIG therapy at the hospital and hopefully by then we will also get results confirming -or, please God, disproving- the diagnosis of CGD, which she tested positive for last month and had blood drawn for again yesterday to make absolute sure of the diagnosis. I have been keeping pretty quiet about her testing positive for CGD until we have these second confirmation labs back, as CGD is so awful and complex it is best to just be calm and push it to the back of my mind unless I know with 100% certainty it is what she has. Now, do not go and Google CGD; it will freak you out and cause worry. Liz's doctor has told us that if she is indeed a carrier, she is on a spectrum and won't have "full blown" CGD.

So, that's the update. More waiting, more wondering, and more praying that yet another virus she now has doesn't become an infection.
Please pray with us.