CureSearch for Children's Cancer funds and supportstargeted and innovative children's cancer research with measurableresults, and is the authoritative source of information and resourcesfor all those affected by children's cancer.
Full discussion with a health care provider is critical so everyone understands the circumstances under which a DNR, DNI, or AND order would go into effect and the specific actions that will or will not be taken.
Without question, there are children and families who do not want to leave any stone unturned and decide to use any drugs or other treatments that might offer, at the very least, more time. You and your child are communicating with each other every step of the way as you make decisions about treatment. Phrases like “don’t give up on me” or “I want to keep trying” are always times to talk about all the alternatives, opportunities, and possibilities that medicine has to offer. Some families ask for a second opinion about additional treatment. For some diseases, there are cancer centers that can offer Phase I trials, research studies designed to test therapies that have shown promise in laboratory or animal research, but are just beginning to be studied in humans. If a child and family ask, referral for treatment at such a center can be explored. As with any decision, all the risks and benefits need to be weighed and the best option for your child pursued. But, even if the decision is made to seek the most aggressive treatment available, all of the principles of communication, keeping the best interests of the child paramount, and providing as much comfort as possible while undergoing treatment must still be foremost in everyone’s mind.
Quality vs. quantity of life will always be one of the hardest judgments you and your child will make. Only you and your child know what value each of you place on time together and at what cost. And, only by talking about it and listening to each other through words or actions can you, together, make the decision that is best for your child.
Second guessing is second nature to almost everyone. Sometimes parents worry that they have made a “wrong” decision. But, no matter what you decide, you will not make the wrong decision if you keep your child’s desires as well as best interests uppermost in your decision making. Whatever decision you make, for whatever time your child is with you and forever after, you will know that you made choices that, given what you knew at the time and taking into account all the recommendations of trusted providers, best reflected your love of your child.