Looking for a road map

James is quite the popular little guy in the pediatric oncology community these days. There has been a good bit of discussion about his situation and his recommended treatment between the folks here, in Minnesota and at the Children's Oncology Group (COG). The doctors who managed his care in Minnesota have weighed in with a "Minnesota Position". Essentially, what they would recommend for James' care if he were still in Minnesota. Then there was a big discussion about what the COG recommended. Dr. Keller said, "The e-mails were flying." Pretty much all weekend.

It seems there is a good bit of consensus now. My understanding is that Dr. Keller hopes to use an older protocol from the late 1990s-early 2000s. It uses drugs that aren't quite so potent as the vincristine against the intestinal tract. Initially, there was some discussion about James potentially needing radiation to the brain in addition to his chemotherapy. Considering James' age and Down syndrome, all involved agree that the risks of this are far greater than the potential benefits. Instead, James will get extra treatments of methotrexate, which is known for its ability to attack leukemia cells in the central nervous system.

As of yesterday, Dr. Keller was waiting to hear from the doctor who directed the studies on the protocols in question to see if there was anything she knew of that might contraindicate using this protocol for James. At this point, all are primarily concerned with giving James' body a chance to heal.

The surgeon who placed James tube came by today to talk about establishing a protocol to help protect James from future outbreaks of enterocolitis during the rest of his chemotherapy. It seems reasonable enough and includes a couple of things to do before each round of chemo, both of which can likely be done at home.

Please continue to pray for wisdom for James' doctors and their 'counselors' as they come up with a plan for James.

Love, Stephanie