The Wait is Over

Jade snapped selfies as we reviewed roughly 100 pages of documentation and participated in a three hour meeting with the Bone Marrow Transplant team on Thursday. All of her pre-transplant work-up tests and scans are back and thankfully they look good overall.  Dental exam showed no infections or disease. All of the blood tests were unremarkable. The GFR showed great kidney function. The bone marrow biopsy and lumbar puncture showed no evidence of disease in her bone marrow or her spinal fluid!! Two potential issues did arise from the cardio scans and the CT.  The cardio scans showed an ever so slight increase in left ventricle size and heart rate, a potential sign of stress or injury to the heart from previous rounds of chemotherapy. The CT showed compression fractures in Jade's spine, a sign of toxicity in the bones - another effect from the chemotherapy treatment.

While we were assured that these are not currently major concerns, it was significant enough for the team to decide to select an eight-day transplant conditioning regimen that consists of bisulfan and cyclophosphamide  and is "gentler" on the heart and bones (i.e. no total body irradiation). It also reaffirmed the position of not doing additional rounds of chemotherapy so that we could wait for an adult donor match to be identified.  Jade is strong and looks great, but chemotherapy is heavy stuff and will take its toll on her body. The transplant conditioning regimen will begin on Monday, June 23rd and be followed by a stem cell transplant using umbilical cord blood -- the best identified match Jade has to date -- on July 3rd. 

So, we brought Jade to the BMT clinic on Friday for her first infusion of palifermin, one of many medications Jade will be taking to prevent or curb some of the anticipated side effects of this treatment course. (Palifermin builds up the lining in the mouth and along the gastro-instestinal tract to prevent sores from developing.) We have truly cherished these past two weeks at home together as a family - not taking for granted the luxury of sleeping in the same bed together, sleeping in period, conspiring to ambush Daddy, waking up in a house that looks "lived in" by children, stepping outside and breathing in fresh air, running on bare feet, worshiping with friends... For now, we're making it our business to have one heck of a weekend before heading back to the hospital for what I pray will be an uneventful, yet unimaginable, experience.

Thank you for your continued prayers for Jade's complete healing and happiness, for our family, and for a cure.