Childhood Cancer

After you have set goals, done your research, discussed options with your treatment team, received answers to all of your questions, obtained a second opinion if desired, it is time to proceed. If you choose the comfort care option, the next chapter discusses ways that many families transitioned from active care. If you chose a new course of treatment (with or without palliative care added), your knowledge and experience may prove to be a double-edged sword. You have no illusions about the difficulties ahead because you’ve done it before, but you also will be strengthened by your ties with the cancer community, your familiarity with your physicians and hospital routines, and your ability to work the system to get what your child needs. Many parents shared how their child took the lead with relapse treatment. While the parents agonized, their child said simply, “Let’s just do it.” And they did.


Long story short—my 8-year-old son was diagnosed with standard risk ALL and completed treatment on one of the experimental arms of a Children’s Oncology Group trial (an arm more intense than standard treatment). He relapsed in the testes, marrow, and CNS six months after treatment ended. He relapsed in the CNS three months after the end of relapse treatment. He had a transplant at age 14, and nine months later he relapsed in the CNS again. At that time, three children with CNS disease had been treated on the CART-19 immunotherapy trial and were doing well. However, we also know kids who died on that trial. My son said no, he was ready to go home on hospice. I understood. He’d been through years of chemo, testicular radiation, cranial radiation, total body radiation, and a transplant. I told him that he was 15 and ultimately, it was his decision, but was he sure he wanted to stop when there was another treatment on the table, scary as it was. After talking it over, he changed his mind and agreed to the trail. It worked! He’s now 18 and just graduated from high school.