Unfortunately, as previously explained, these risks are increased for patients who undergo unrelated transplants, although each year more patients survive as medical resources for treating complications improve. Some families will be faced with the need to make very hard decisions about how much treatment their child will undergo to try to overcome BMT-related problems. Children themselves often have opinions about how much more treatment they wish to undergo. It has well been documented that chidlren even as young as 4 or 5 years old are aware of their own condition, although they often try to protect their parents by voicing their feelings.
Compassionate support is available to help parents learn about options for planning their child’s end-of-life care should it become necessary. Along with its specially trained BMT social workers, CHRMC has a Palliative Care Consulting Service available to work with the family of any child who has a potentially life-threatening illness. For families who actively particpate in a particular faith tradition, additional support can be available from hospital chaplains and the family’s clergy, even long distance.
Children may have definite opinions on how they want to say good-bye to their loved ones, friends, and classmates. As hard as it is, many families have reported that planning together with their sick child for their final remembrance has helped in their grieving process.