Osteonecrosis, also called avascular necrosis (AVN), is a condition caused by the death of small blood vessels that nourish the bones and joints. In children and teens treated for leukemia, AVN is caused by the use of steroids. It is more commonly caused by dexamethasone than prednisone (except when prednisone is given in high doses for long periods of times, such as for children who relapse or who are treated with stem cell transplants). AVN is much more common in children older than age 10; however, on protocols that use dexamethasone exclusively, it is being seen in younger children more often. The course of AVN is variable. Some children and teens have the condition for years with only minor problems with pain and movement, but others require one or more surgeries soon after the condition is diagnosed.

At the beginning of long-term maintenance (COG trial AALL0331 augmented therapy), my 6-year-old daughter, Emilie, said that her arms hurt at night, so we did some research and learned quite a bit about AVN from the ALL-KIDS list on www.acor.org. Our nurse practitioner is very good, but we had to push to get an x-ray done. When substantial AVN was confirmed in Emilie’s left shoulder, she had an MRI of both shoulders and finally a nuclear bone scan of her entire body to see if it was in any of the other joints. The bone scan did not show any damage to other joints, but Emilie’s knees hurt after an active day, so it may be starting there as well. Our oncologist took her off the steroids, and I had to get my head wrapped around that, which was hard for me. But, he believed her body had probably had enough and he was not concerned regarding her prognosis. We met with an orthopedic surgeon and he recommended a procedure called small-diameter percutaneous decompression be done on both shoulders. She had the surgery two months ago. Within two weeks her symptoms disappeared in both shoulders and the x-rays six weeks later showed stabilization, so it was very effective. I am so glad that we did it.