Day +13, BMT :: Roid Rage

Day 13 +: Puffy, itchy, and swollen,
but playful (at the moment).

One moment Jade was throwing an uncharacteristic FIT, yelling vehemently at the physical therapist (she wasn't going to wiggle her toes, raise her hands, stand up, or walk... for ANYONE).  But before I knew it, she was doing the cha-cha slide and asking for a slice of pizza.  Apparently, this is what my four-year-old looks like on steroids.

The team decided to put Jade on a steroid regimen after she had seemingly maxed out on antibiotics -- she was taking ceftaz, vancomycin, tobramycin, and azithromycin.  All to no avail; none provided any relief during five days of persistent fever, rapid heart rate, elevated respiratory rate, an itchy rash that covered Jade's entire body, swelling, incontinence, nausea and vomiting, complete loss of appetite, and sleepless nights.  Most, if not all, of Jade's symptoms are also consistent with engraftment syndrome, which is normally treated with steroids. But a cat scan on Monday showed a potential pneumonia in the right upper lobe of her lungs. Needless to say, this caused some hesitation to start the steroids. No one would want to embolden a potential infection like pneumonia with Jade's weakened immune system.  Ultimately the team decided that with the worry of a pneumonia, instead of the typical seven-day regimen, Jade would get a two-day course of steroids. The team will reevaluate before week's end.  

Less than 24 hours into the steroid regimen, Jade is fever free!  Her heart rate and respiratory rate are in the normal range.  The rash that covered her back, necks, cheek, arms, and legs appears to be receding. Her appetite is also recovering and she has been drinking like a sailor, even taking a few oral medications.  And her ANC, absolute neutrophil count, which is a measure of how well her immune system can respond to and fight bacteria, IS RISING!  On Sunday, her ANC was zero; by Wednesday, it was 450.  We know the road to complete recovery will be a long one, but we are grateful for Jade's leaping over this hurdle. 

Thank you for checking in on our girl and for continuing to keep her recovery and her cure in your prayers. Your prayers that her body will fully embrace the new cells she received on July 3rd are appreciated.