Day -9, BMT :: New Rules

New unit. New routines. New rules.

No play room. No art room.
No trips to the meal cart.
No long walks in the hall.
Only one special stuffed animal allowed.
A few personal items and toys allowed (must be specially disinfected; new and unopened recommended).
Books should be new or only used by your child.
No visitors under age 12 (except for her brother).
No balloons.
No playing on the floor.
No sharing food from the same plate.
No fruits that cannot be peeled after washing.
No dried fruits unless they are cooked.
No unpasteurized fruit juices.
No salads.
No raw vegetables or herbs.
No restaurant foods.
No cold cuts.

Even a new way of noting the days. Yesterday was Day -9. Nine days and counting until Jade's transplant.   Despite the few dozen times Jade unsuccessfully negotiated to go for a walk - I'll wear a mask, -  she is all smiles and in surprisingly good spirits. She did have one definitive message for me though: "Mommy, no more new rules." Unfortunately, I couldn't make that promise.

In between her intense medication schedule, Jade spent most of the day getting oriented to the Bone Marrow Transplant unit. Tearing into her "welcome" basket from the Hope For Henry Foundation, breaking in a new toy from Grandma, enjoying a virtual play date with her big brother thru Google Hangouts, line dancing with dad and mom, watching The Pirate Fairy and The Little Mermaid, requesting that Frozen's Elsa visit her and build a snowman, and meeting with the nutritionist, physical therapist, child life specialist, Pediatric Advanced Needs Assessment team, primary doctor. Fortunately, we were able to squeeze in a good night's rest before Jade started on round-the-clock fluids and her daily schedule that consists of nine medications, one to destroy her immune system; eight to prevent or lessen the side effects of the one:

4am: Vital signs
8am: Daily weight and vital signs, Periactin (appetite stimulant)
9am: Busulfan (2 hour high-dose chemotherapy infusion)
10am:  Zofran (anti-nausea), Ursidol (liver protectant), Zantac (decrease stomach acid), Bactrim (antibacterial), Glutamine (mucositis prevention), Keppra (seizure prevention)
11am: Caspofungin IV (antifungal)
12 pm: Vital signs
3pm: Busulfan (2 hour high-dose chemotherapy infusion)
4pm: Periactin, vital signs
8pm: Vital signs
9pm: Busulfan (2 hour high-dose chemotherapy infusion)
10pm: Zofran, Ursidol, Zantac, Bactrim, Glutamine, Keppra
12am: Vital signs
3am: Busulfan (2 hour high-dose chemotherapy infusion)

Some of the meds will stop as her treatment progresses; there are at least six other medications, however, that will be added to this over the course of Jade's transplant stay.  Each with its own share of potential side effects. The busulfan, which is needed to destroy the immune system and ready Jade's body to receive donor cells, has an ever so slight risk of causing seizures in patients. Jade will receive two hour infusions of the busulfan four times a day for four days; she will be on seizure prevention medication for six days. We were told not to worry too much about this because it happens in a very small percentage of cases... Errr... You try sleeping.

Thank you for your continued prayers for Jade -- for her spirit, for her complete healing, for an uneventful but successful transplant.