Day +67, BMT:: Still Brave, Still Strong

Five weeks inpatient for cord blood transplant. Two days at home. Two weeks inpatient for acute graft versus host disease. Two weeks at home. A trip to the E.R. and one week inpatient for liver damage.  Ten days at home... and counting.

Momma needs to summon some of that trademark Jade energy and sass, because this summer really tried to kick my butt!

I know that it's been nearly one month since I've updated the blog... not for want of things happening, but for want of energy.  We were really hit hard with the last post -- adenovirus, stage 3 graft versus host disease of the gut, and committing to an even longer treatment course that includes extracorporeal photopheresis (light therapy) to get and keep the GVHD under control.

Jade came home for an eventful two weeks. And literally the day after she came home, we lost power for about eight hours during a storm. While I was preoccupied with the battery life for the IV pump that Jade is connected to for 18 hours a day and how long could a closed refrigerator store medications at the appropriate temperature, the storm was flooding our basement.  A friend from church took us in without hesitation while the guys from FloodTech took care of the basement, rid it of the water that was certainly bacteria-filled and a potential hazard for an immunosuppressed child, and made our home safe for Jade to return to.  All the while, we continued to travel to the outpatient clinic three times a week for visits that lasted between four and nine hours.

Just as I was beginning to accept this schedule as our new reality and trying to wrap my head around how much more challenging it would be when Jaytoe headed back to school for the fifth grade, yellow eyes, dark urine, tummy pain, and loss of appetite prompted a frightening (for me), Sunday morning trip to the Emergency Room.  "Can they make my tummy better?," she asked. With an affirmative response, Jade was happy to go along for the ride and even afforded us several loud renditions of her Kidz Bop faves. Still brave.

All of a sudden, some of the numbers that we only followed peripherally were front and center.  Liver function tests showed Jade's AST level at 921; normal range is anywhere between 16 and 57.  Her ALT was 1,077, with normal being between 25 and 50. Jade was admitted to the hospital for liver damage. With round-the-clock full monitoring, regular glucose checks (which surprisingly have not evolved from the finger pricks I used to see my aunt give herself decades ago), increased hydration, removal of medicines from Jade's treatment plan that are known to be harsh on the liver, and God's grace, Jade's liver healed itself and its function was within normal range within a week... another homecoming. Still strong.

We have now been at home for ten days, Jaytoe has been a fifth grader for 14 days, the adenovirus?  gone as of last week's labwork, and we have readied ourselves for today's Day 60ish bone marrow biopsy.

Our prayer today is what it has been for the past couple of months -- that Jade's leukemia continue to be in remission, that her body continue to embrace the donor cells, that this family be imbued with strength, and that the cure for cancer be made plain.   

Thank you for continuing to lift Jade and our family up with your prayers, encouragement, and immeasurable kindness.