Goal setting is straightforward for most families after a first relapse—they look at options, choose one, and start treatment again. However, for families of children who have experienced a series of relapses and years of struggle, deciding what to do next can be very difficult. In these cases, a necessary step in making plans is discussing and deciding on your and your child’s goals. In a newsletter for parents of children with cancer, Arthur Ablin, MD, Professor Emeritus of Pediatric Clinical Oncology at the University of California, San Francisco, wrote of the importance of goal setting in the decision-making process after relapse:

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.

After a discussion of goals, your family may choose treatment, treatment with palliative care (services to improve quality of life and manage pain) added, or comfort care only.

If your family decides to pursue additional treatment, there may be more than one option available. Treatment plans for a first relapse may be specified in the standard treatment or clinical trial protocol document, or your child’s oncologist may suggest a different approach. Suggestions for treatment may include more intensive chemotherapy, radiation, stem cell transplantation, immunotherapy, a clinical trial, or a combination of several treatments. You may need to consider traveling to a different treatment center to access therapies that are not available at your child’s home hospital.

When our son relapsed on treatment for Ph+ ALL, then a year after his transplant, we didn’t know what to do. Our docs brought our son’s case to the tumor board, and I joined an online support group hoping to get some information about new drugs. I connected with six people who had the same mutation that our son did, and all of them had tried nilotinib, which worked for all of them. Meanwhile, our local oncologist told our 17-year-old son he was going to die and there were no more treatments for him. She even signed him up for hospice without discussing it with us.

I realized that no one was going to be as invested or have the same sense of urgency as his Dad and I. I learned how to navigate the www.clinicaltrials.gov website to find new open trials. Every open trial listed has the contact information for the principal investigator, who is trying to enroll patients in the trial. I made numerous phone calls to treatment centers across the country looking for immunotherapy trials our son would be eligible for. If you articulate your case in a concise way that addresses the eligibility requirements of the trial, the investigators will call you back. You have access to these scientists and doctors. You have to know your stuff but you don’t have to be an MD to be your child’s best advocate and leader in his or her care.

There were a lot of barriers to getting accepted into the immunotherapy trials—the wait lists were long, and we didn’t think he had the time to wait. I encourage parents who finds themselves in this daunting situation to be relentless in your pursuit of the very best treatment options. At one point we contacted our Congresswoman, attorneys, the manufacturer of his CAR-T cells, and the U.S. Food and Drug Administration in an effort to get him to treatment in time. I’m certain that had we not gone to these lengths, my son would not have been enrolled in the trial and alive today.