The opposite of “remission” is “recurrence.” For a family fighting cancer, it’s an awful word to hear.

We know this from experience: “recurrent medulloblastoma” was Michael Gustafson’s final diagnosis. After a craniotomy and a year of radiation and chemo, Michael’s medulloblastoma went into remission. He was cancer-free 18 months. But then doctors found a spot during a routine MRI.

In a moment, we – his family – went from hoping cancer was behind us, to the realization that our son and brother was unlikely to survive. This is what recurrent medulloblastoma means.

At first diagnosis, medulloblastoma has an 80 percent survival rate, but when it returns, the odds of survival are 5 percent. Why? Recurrent medulloblastoma.

We’re targeting one of cancer’s toughest … because of Michael.

When medulloblastoma returns for children, there is no treatment plan.

Doctors do their best. But we don’t know enough.

In Michael’s case, the plan looked something like this: He endured a series of stereotactic radiosurgeries to mitigate the tumor growth in his brain. There was chemotherapy. There were additional radiation treatments to his spine in hopes of keeping his nervous system from being impaired. All that, and Michael participated in a drug trial.

These treatments had their costs. They came with hospital time and with serious side effects. And the kicker is, we’ll never know for sure if they had any effect. No one can say whether or not they extended Michael’s life or preserved its quality.

We just don’t know enough.

Like many cancers, medulloblastoma changes over time. The type of cancer Michael had at his recurrence wasn’t the type of cancer he had at first diagnosis. Recurrent medulloblastoma is different from medulloblastoma.

We don’t know enough yet. But we could. And with your help, we will.

Post-Mortem Tissue Collection     Improving Collaboration     Medullablastoma Research