Hello, I am a CML patient advocate (President of The CML Society of Canada) as well as a Masters level Trainer on coaching patients with chronic illnesses in the area of self management. The Self-Management course is 6 week course for patients that was developed at the Stanford University School of Medicine and offered at the McGill University Health Centre, here in Montreal.
As such, I wish to comment on the patient adherence issues of this case. It might be a good idea to have either the patient or the patient's mother, ideally both, reach out to Mr. Greg Stephens of The National CML Society in the US - 1-877-431-2573 (I believe you are located there?). He may be able to help pair the patient and their family with a fellow CML patient mentor who can help this patient see the incredibly hopeful future for CML patients. Particularly young patients.
Recently, CML Patient Advocates worldwide met at our annual New Horizons meeting where we learned about the great success of the stopping drug trials. This young patient may very well be a candidate for such a trial in the future. Thereby allowing her to lead a very normal life, choose an educational path, career and even have a family. She needs to realize that the path to this 'normal' life starts with strict adherence to therapy and accepting guidance on self-management techniques and how to manage side effects of treatment.
She sounds like she and the family are in great despair and could be helped with counselling, mentoring and support. Otherwise in spite of all your best efforts and the best drugs available, she may never be able to comply with the necessary treatment.
Thank you for all the great work you do.