I am glad to hear your son is doing so well.  He should have regular follow-up with a comprehensive survivorship clinic to avoid some of the issues you have faced.  WE have a Survivorship Clinic in Pediatrics that sees patients of all ages.  MD Anderson is in the process of developing a Survivorship Program for all of our patients because we have recognized many others face the same hurdles you have.  Most pediatric oncology programs have comprehensive survivor clinics so you should be able to find one closer to you if you do not want to travel back to MD Anderson

The Children's Oncology Group has published guidelines (http://www.survivorshipguidelines.org) on the care of cancer survivors based on the type of therapy they received.  A survivorship clinic will go through these guidelines and establish a plan of care for your son, which will include the tests and monitoring he will need, as well as how frequently they should be performed.  Sometimes patients will go to a survivorship clinic a few times to get the care plan establish and then transfer their care back to the primary care physician.  It is particularly important for transplant patients to have a care plan developed as they are at risk of developing several complications later in life.  Your transplant doctor or nurse should be able to give you a list of the immunizations your son needs.

Another resource for your son is www.livestrong.org where he can find survivorship worksheets and a guidebook under the cancer support tab.  They are publishing a new improved version of the guidebooks which will be available later this summer.

I can't say much about your son's prognosis based on the information you gave me, but in general the longer he remains in remission the more likely he is to be cured.  I am so glad to hear he is doing so well in so many aspects of his life.

Dr. Anna Franklin