Toby has now completed five cycles of chemotherapy. These first five cycles are known as the induction phase with the goal being to "induce a remission," that is, to clear the body of any detectable neuroblastoma. Before starting treatment, the neuroblastoma was in Toby's adrenal gland, as well as in his abdomen, bone marrow, and in many of the bones throughout his body including several of the cervical vertebrae. After the third cycle of chemo, Toby had re-evaluation scans and bone marrows to determine how well the treatment was doing its job. At that time, the primary tumor in the adrenal gland and the abdominal tumors had shrunk significantly, but there was still some residual disease in the bone marrow and the lesions in the cervical vertebrae were relatively unchanged. The hope was that the remaining two induction cycles would successfully take care of the marrow and cervical involvement. Last week, before starting his fifth cycle of chemo, Toby had (yet) another bone marrow aspiration and biopsy done to see if the neuroblastoma that had metastasized there was now gone (the vertebrae will be looked at later to see how they've responded). Mooki and Stephen just met with Toby's doctor and unfortunately, there is still evidence of neuroblastoma in Toby's marrow.
What this means is that instead of being in a complete remission, Toby's disease is classified as being in partial remission. This has many implications, most immediate is that rather than proceeding with the next phase of radiation and antibody treatment, Toby now has to undergo an "extended induction" with another round of chemo. This sixth cycle will combine cyclophosphamide, which Toby got in previous cycles, with a new drug called topotecan. The idea is that because the neuroblastoma isn't responding as readily as hoped to first-line chemo, additional novel chemo is introduced in an effort to induce a remission.
Obviously, this is bad news. While many kids with advanced neuroblastoma need extra cycles of induction-chemo to clear the neuroblastoma, this is not what we were hoping for.
Toby is still recovering from this most recent round of chemo with all the usual potential bumps in the round (risk of infection, frequent transfusions, etc), but this is an especially big and devastating bump. In the next couple of weeks Toby will have the sixth cycle after which his doctors will take another look at his marrow and he will have a complete set of restaging scans.
Mooki and Stephen are distraught, depressed, and frustrated. It seems as if each small treatment-related gain is followed by an equally, if not harsher setback, forcing them to come to grips with a new reality. Throughout these horribly difficult days, weeks, and months Mooki and Stephen have continually reinvented themselves and have found new ways to remain strong for Toby. This is no easy task. Now more than ever, Mooki and Stephen need your continued love, support, and encouragement. Please write, post a response to the blog or send Toby a picture or card. I will be in NYC tomorrow for a few days and will send another update once there.
Ed Clark, Christmas Guest
4 months ago