Rachel had her first visit with her oncologist this afternoon. She will need an aggressive chemo plan to treat this aggressive cancer. This will consist of inpatient chemo treatments every other week for 7 to 9 months, starting as soon as possible – likely next week. She will need to have surgery to insert a central line port first, so we need to wait for a pediatric surgeon to be available for that and then they will start the first chemo treatment that same day.

Rachel will also need radiation treatments, which will run Monday through Friday, every day of the week for about 7 weeks. She will continue having chemo during the radiation. These are expected to start a few months into the chemo treatments. Her oncologist will be consulting with the radiation oncologists to see whether she needs the more precise proton beam radiation at Massachusetts General Hospital in Boston or if she will be able to have traditional radiation, which is available here at Maine Medical Center in Portland.

There is a possibility that Rachel will need another surgery down the line if they determine there are still cancer cells on her spine and that they would be able to remove them surgically. The doctor is not sure whether this will be the case yet or not.

The doctor is scheduling another MRI to get a new baseline after surgery and a bone scan to make sure that the cancer hasn’t spread to any other bones. The CT scan of her lungs was clear right before surgery so he didn’t think it was necessary for another one of those just yet. She will also need to have a baseline EKG and echocardiogram of her heart because the chemo can cause heart damage.

According to the doctor, Rachel’s prognosis is about 70%, which is a whole lot better than the 20% that I was finding online. The cancer does have a tendency to recur years down the road, however, just as I read online.

We learned that some of the possible long-term side effects of chemo include other cancer (leukemia, specifically) and a weakened heart.

It was an emotional appointment for everyone. I came away from it feeling both better and worse. Better because we finally knew what the plan was and that it was getting started right away, that they were scheduling more scans, and that the prognosis was much better than I had initially thought. Worse because of how intense and grueling and LONG the treatment plan will be. Rachel will need to miss essentially her entire senior year of high school, just as she was planning for college and getting excited for the future. College will have to be postponed for at least a semester, maybe a year.