This [relapse] is a time of crisis and ambivalence. The decision to be made is whether to continue to try to achieve a remission or to replace this hope with the hope for comfort for the child and a special time together. Each parent, and the child who is old enough to understand, requires differing amounts of time to reach a decision about how to proceed. Careful and frequent discussions with the medical team, as well as with trusted friends and relatives, may help clarify issues and bring some peace of mind.

Before determining which treatment is to be chosen, a decision must be made to determine the goal of treatment—in other words, what is it that we are trying to achieve. This crucial first step is the basis upon which any decision concerning treatment must be made. But it is too often omitted from consideration and/or discussion, even by the most experienced. The frustrations accompanying the previous failure of treatment, the fear of the loss of the hope for cure, the pressure of urgency to find solutions, the new awareness of the possibility or probability of death, lead us all to want to consider treatments first rather than these more difficult considerations involved in establishing goals. These also force us to deal with reality earlier, which could mean the almost intolerable confrontation with the death of a very-much-loved child, a tragedy to be avoided at all costs.

Twenty-five days after surgery for medulloblastoma, Ayla (32 months) started chemo. Six chemo treatments were planned, but we only got through the first three, consisting of vincristine, etoposide (VP-16), cisplatin, and cyclophosphamide. They also collected stem cells for a stem cell transplant, which was never done. During this time, the MRIs showed that there was additional spread in 10 spots in the mid-brain. Chemo was stopped and the last three treatments (thiotepa and carboplatin) weren’t used. Exactly 1 day after Ayla’s third birthday, she started radiation, and got the maximum doses for cranial and spinal radiation. Ayla sailed through radiation. She didn’t get that sleepy period, although she did add an extra couple hours of nap every day. She had her radiation treatments early in the morning for 6 weeks. The whole thing took half an hour, and just a few minutes for the actual procedure. The radiation tech would give her the sedative, her special “milkshake” medicine, through her Hickman®. Afterwards, we’d go out for the day and play. Most, if not all, of the spots that they were watching are gone now and her original tumor site is showing scar tissue.

Our 18-year-old daughter was diagnosed with medulloblastoma in the cerebellum when she was 2 years old. She was treated with high-dose chemotherapy followed by stem cell transplant. At her 2 year off treatment MRI, the tumor was back—tiny and at the same site. It was again totally resected and this time we knew she needed radiation. The question was: what kind?