Just looking for the journal paper? It’s here: Nemergut_Townsend_JPEM
More explanation below…
A great deal has happened since we last provided any updates on Neva and her craniopharyngioma. We have changed jobs, changed states, and she has changed schools (twice). We have gone through the wrenching stress of a rushed MRI for the fear of new tumor activity, and felt the flood of relief when it came back all clear. We have begun the routine of giving a nightly growth hormone injection to a five year old. And we have watched our incredible daughter handle it all with balance and humor and staggering toughness. She’s doing great. Soon we’ll write more about all of this.
But for now, we want to share one outcome of Diana’s April 2014 trip to attend the Kraniopharyngeom meeting Dr. Hermann Mueller organizes in Germany every few years. The meeting is connected to the largest, longest-running study of craniopharyngiomas, and brings together experts in the disease from all around the world. We cannot begin to express how grateful we are to Dr. Mueller for his kindness and help to us throughout the past fourteen months. Diana’s joke to him was that if we ever had another child, regardless of gender, that child would be named Hermann!
Hermann’s kindness included an invitation to Diana to participate in the conference – a priceless gift as we tried to sift through so many threads of information to make the best decisions possible for Neva. That participation was quite real: she was allowed to give a talk about our experiences as parents of a child with a cranio, allowed to be part of all sessions and discussions, and then invited to write a paper for the conference special issue that was drawn from her presentation. We share that paper via the link at the top of this post, published recently in the Journal for Pediatric Endocrinology and Metabolism. We’re posting it here in case it helps any other parents just starting to confront the long, complicated and at times frustrating journey of helping a child with a cranio, or with any other complex medical condition in which multiple specialities must be involved.