Keeping the doctor informed

Once treatment is completed, many children and young adults are no longer cared for by pediatric oncologists who are familiar with their history. A transition back to their community physician occurs. Moreover, many primary care physicians—pediatricians, family practice doctors, internists, gynecologists—are not fully aware of all the different treatments used for the multitude of childhood cancers and of their late effects.

Additionally, when treatment ends, many patients and parents are not adequately informed of the risks of developing physical difficulties months, years, or decades after treatment ends. The risks of such delayed effects are real. It is imperative that survivors be informed advocates for their own healthcare. They need to be educated, in a supportive and responsible way, of the risk for future physical adversities, so that if a problem does arise, it will be recognized early and receive prompt attention. Young adults who have survived childhood leukemia need to be fully cognizant of their unique medical history and able to share this information with all future doctors who will care for them.

A few months before the end of treatment, ask the oncologist to fill out the booklet in the back of this book. This health history will become an indispensable part of your childs medical records for the rest of her life. It should be kept in a safe place, and a copy should be given to each medical caregiver. When your child leaves home to begin her adult life, this booklet should go with her.

If you do not have a copy of the health history booklet, write down the following important information that should be in your childs health history:

• Date of diagnosis and relapse, if any

• Place of treatment

• Dates of treatment

• Names of attending oncologist and primary nurse

• Names and total dosages of chemotherapeutic agents used

• Type and amount of radiation used and areas treated

• Name of radiation center

• Date(s) radiation received

• Dates and types of any surgeries

• Date and type of bone marrow or stem cell transplant, if any

• Any major treatment complications

• Any persistent side effects of treatment

• Recommended medical follow-up

• Contact numbers for treating institutions

If your child will not be examined periodically at a long-term follow-up clinic, write down this information, and make sure that your child has a copy to give to any future doctor who will be treating her.

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