Our #LukaTheLion has been incredibly fortunate (as have we) to have a doctor that has walked with him all along the way — holding his hand when needed. Since 19 days old to 18 months and counting, Dr. Philip has been there by his side or in spirit for all that entails mysterious primary immunodeficiency, bone marrow transplant, and road to (hopeful) recovery: the labs, tests, waiting, medications, developmental milestones, infections, viruses, surgeries, chemo, biopsy, x-Rays, scans, transfusions, infusions, interpretations, disability appeals, charity care applications, billing errors, insurance requests, refills, chicken head balloons, and more than we can keep track of.
They both like to wear blue and have what seems to be an uncanny ability to comfort each other when needed. And just as this photo captured this precious moment of patient and doctor, they joined hands as they walked the journey together. As Maia Bee says, giving each other a “hand hug.”
Our lion is doing pretty well, platelets holding steady although technically on the low side. He’ll get another 5+ hour infusion tomorrow in clinic to continue to fight the EBV that activated from his donor. He’s also fighting a little bit of “chimerism” which is his original cells came back a bit, so the hope is that by weaning from the steroids and other immunosuppressive medication that this will help. The balancing act – and why he holds his doctors hands so closely – is that by lifting these meds too much, you don’t want to develop a life long graft vs host. In the meantime, we’ll all keep holding hands one step at a time.