RELAPSE
Unfortunately, despite the best care and treatments, some children may relapse. Relapse means the leukemia cells have come back. When a relapse occurs, it is often unexpected and is always unwelcome. The entire family may have the same reactions they had at diagnosis, such as shock and disbelief. You may wonder, “How could this have happened? Why, if we did everything as instructed, would the disease return?” Sadness and anger also may be the responses to the idea of having to undergo treatment again. Relapse can be even more complicated than the initial diagnosis, in part because the child and family have a better idea of what to expect. While struggling with intense feelings, you are in the position of having to learn about and decide on a new course of treatment. It is important to recognize that relapse, while frightening, does not mean your child will not be cured of the disease. It means that a new approach to treatment must be taken. For more information about relapse and long-term effects, see the Resources section at the end of this handbook.
HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM?
The care of your child requires a team approach. You are a key player on your child’s healthcare team. You know your child better than anyone else, and your input is important. Other members of your child’s healthcare team include doctors, nurses, nurse practitioners, physician assistants, pharmacists, and social workers. Always communicate openly with the members of your child’s healthcare team. If there is anything you are not sure about, ask the team. Write down your questions as you think of them, so you’ll remember to ask them during
your next meeting with your healthcare team. Important questions you may want to ask:
What is my child’s risk group and what does that mean? What treatment choices are available? What treatment do you recommend and why? What are the risks or side effects during the treatment? What are the risks and side effects after the treatment? What are my child’s chances for survival? What are the chances that the disease or condition will recur?
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Association of Pediatric Hematology/Oncology Nurses (APHON)
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