Day +24, BMT :: Ready For Whatever Comes Along

Jade rocks her string of strength for
one last ride on the IV pole before going home.

We have seen the parade-like, end of treatment celebrations before. Participated in them even, cheering on other patients as they triumphantly, hesitantly leave the safety of the well-staffed, ultra-filtered, restricted unit...

There's nothing like being in it though and nothing to prepare you for the wave of emotions that drowns out and distorts everything around you.

After donning her Beads of Courage and patiently waiting to go home, Jade handed them off to Dad in exchange for her requisite sunglasses, high filtration mask, and tiara... She went out in style, leading the staff in a call and response of "I'm brave, I'm strong, I'm ready for whatever comes along," accompanied by clappers, bubbles, and drums per her request. Patients and families cheered along and waved from their rooms as Jade walked decisively toward the elevator.

Despite my tear-filled eyes and clumsy fingers, I managed to capture the latter portion of the Jade Parade leaving the BMT unit on Friday so that our family and Super Friends could share the moment with us.

How did we get here?

That moment when they tell
you you can leave IF you
produce $3k worth of medicine.

After beginning to prepare for a Monday, July 28th homecoming, the team asked us on Thursday if we could be ready for a Friday, July 25th discharge if Jade's blood counts and chemistry continued to improve. My instinctive response, "Absolutely!" Even if it meant I wouldn't have the weekend to do everything I imagined should be done before Jade came home.

In a flurry of phone calls and texts, generous gifts from friends and family, charitable discounts from vendors, endless encouragement, and unceasing prayers, carpets were steamed, house professionally cleaned, ducts sanitized, and - not without some necessary shifting - $3,400 of out-of-pocket prescription medications were picked up. All in less than 36 hours...

So, Jade is home!

With a stable echocardiogram, a platelet transfusion, a hemoglobin level of 10.3, an ANC over 2400, and an extra infusion of the neutrophil stimulant GCSF, Jade was discharged on Friday a little after 4:30pm to a much more comfortable isolation at home. (No public outings, no visitors.)

Sure, I find myself referring back to the discharge guidelines before we do anything other than turn on the TV -- One second, I'm not sure if we should play on the floor, open the sliding doors; eat avocados... Alerts and alarms chime frequently when a medicine is due or when the IV fluids need to be taken out of the refrigerator. Just 24 days after her transplant, we have a long way to go and will be followed very closely by the team til Day 100, the end of the period of highest risk for complications and mortality. After a quiet weekend at home, we will be back at the hospital tomorrow morning for the beginning of Jade's very regular follow-up clinic visits.

But, for now we are just enjoying watching Jade rebuild her strength and stamina, witnessing that hot/cold relationship that siblings share -- especially when it comes to matters of the Wii or movie selection -- and just being under the same roof, sharing meals as a family.

We have been blessed with extraordinary family and friends, some of whom we have known since we were children ourselves, some of whom we met along this journey, and some of whom we may never meet. Thank you for helping with everything from meals and rides to vendor scheduling and caregiving for our amazing son. Thank you for continuing to stand with us, encourage us and pray for us every step along the way. 

MUCH LOVE!

#superfriendsforjade