Treatment for children who relapse is evolving. The information gleaned from second opinions or your own research may reinforce what your doctor recommended, or it might provide you with other treatment options. Either way, the information may increase your comfort level during the treatment planning process. You might want to ask your child’s treatment team the following questions about the suggested treatment plan:

• Is there a standard treatment for this type of relapse?
• Are these cancer cells showing the same cytogenetics as those from the initial diagnosis? If different, what does that mean for treatment?
• What is the goal of this treatment? Remission? Comfort?
• Why do you think this treatment is the best option? What are the other choices, and why are you recommending this one?
• Have you consulted with other doctors or researchers? If so, with whom? Did you all agree on this treatment or were other options suggested?
• Are any clinical trials available here or at other institutions?
• What are the potential benefits and possible side effects of the proposed treatment?
• How long is the proposed treatment?
• If radiation is to be included, what type and dose are you recommending?
• What are the known or potential risks of the treatment?
• How often will my child need to be hospitalized?
• If the treatment is investigational, is there scientific evidence that it works for my child’s type of relapse?
• If we need to transfer to another treatment center for some or all of the proposed treatment, who will help us manage that process?
• Does insurance cover this type of treatment?

Making the decision as to what treatment to choose was much more difficult when my son relapsed. The stakes were higher. While I had faith in the skills and judgment of my son’s oncologists, I could not rest easy unless I had educated myself on the options available for relapse treatment. His relapse had been suspected for weeks, so I had time to investigate possible treatment choices. His relapse site was rare, which made the usual channels less effective in our case. I started with the online NCI-PDQ and a PubMed search. I asked friends to search for me. From there I contacted a physician from a children’s oncology research group and asked what type of treatment protocol they had to offer for my son’s type of relapse. I learned that the options were few in terms of protocols addressing my son’s type of relapse.

When we sat down with the ped oncologists, I already had some background and knew what was available in terms of treatment. When they presented their choice of protocol, I asked for and was given a copy of the protocol. Reading the rationale and background of the study they were proposing helped me to understand why this protocol was suggested. As a result, I was able to make a difficult decision and enroll my son in a protocol with confidence that he was getting the best treatment available. Since it was a very difficult and intense treatment protocol, it also helped my teenage son to understand why this was the path we were following. Once begun, neither of us had any serious doubts that we’d made the best choice. Now, almost three years later, I am still very pleased that we were able to make a fully informed decision. My son is now a healthy young man away at college. He completed relapse treatment over a year ago and is doing great. His concerns these days are about the dorm food, his next midterm, and when he can see his girlfriend.

• • • • •

My son was diagnosed with standard risk B-cell ALL when he was 8 years old. His MRD was negative at Day 29, and he completed the entire three years and two months of treatment. Six months later, at his monthly appointment, one of his testicles was slightly larger and the oncologist said, “It’s probably puberty” and she added that she would schedule an ultrasound a couple of weeks later, after Christmas. He told his dad the next day that the testicle was getting larger, so we went back to the clinic. The ultrasound was positive, the additional tests the next day showed that he had relapsed in his testes, CNS, and bone marrow. He was treated for 30 days with high dose methotrexate hoping to avoid testicular radiation, but during that time it spread to his left testicle. So, he had testicular radiation, cranial radiation, and two more years of treatment, starting when he was 12. Three months after he finished the relapse therapy, he developed bad headaches while on his eighth grade class trip, and he passed out. The spinal tap showed the ALL was raging again. So, we went to transplant because his triplet sister was a perfect match and the CART-19 immunotherapy trial had never included a child with active CNS disease, so there were just too many unknowns for us.

If your child is old enough, it is a good idea to thoroughly discuss the options with her so you understand her wishes. If older children and parents disagree about how to proceed, a hospital social worker or psychologist can help you to negotiate a joint decision. These discussions will help clarify each family member’s thoughts and feelings, and they will allow the child’s emotional and physical well-being to be part of the equation.

After my son relapsed, we set immediately back to work trying to determine what the best treatment option for him should be. His oncologist was very committed to making him well again. As it turned out, the best option was a phase II study drug that wasn’t yet available in our area. The hospital social worker helped us with travel arrangements and accommodations, and within a day we were on a plane headed for another hospital. Meanwhile, the oncologist completed all the necessary paperwork so that by the time the next course of chemotherapy was due, it could be administered at our own hospital. It was obvious to us from the very beginning of relapse that we had a wonderful medical team that was dedicated to helping our son get well again.

Unfortunately, after two courses of chemotherapy, it was clear that the drug wasn’t getting rid of the cancer. Once again, we all rolled up our sleeves and tried to find another treatment that might help him. I would gather the information and then his oncologist and I would sit and review all the data. As long as the therapy was reasonable and had the potential to help without further diminishing his quality of life, it was worth considering. One of the most comforting things that my son’s oncologist ever said to me was, “I will always be in your corner.”

If your family decides on comfort care, not active treatment, the next chapter contains suggestions and stories from parents who have walked that path before you. If you decide on additional treatment, do not rush into it if you or your child feel uncomfortable about the plan. There is usually time to get answers to all of your questions and to get additional opinions. Doctors make recommendations based on knowledge, experience, and consultations with other experts in the field, so don’t hesitate to ask your child’s oncologist why she has suggested a certain approach.

Jesse relapsed four times, and in some ways it got harder and in other ways it got easier. We knew each time that her chances for survival were fading, and that was hard. But each time we grieved and worked through the feelings, and our skills at handling relapse improved. I turned to God for comfort, and I think that helped me feel that I was standing on a rock out in the ocean, rather than thrashing around in the water. My faith gave me solace. Jesse handled the relapses better than anyone else in the family. She would calmly listen to the doctors’ explanations, then she would say, “Okay, what do we have to do?” She was never angry. She was sometimes sad, but mostly accepting.