Once treatment and follow-up for recurrence of disease are completed, many children and young adults will no longer be cared for by pediatric oncologists who are familiar with their history. A transition back to their local pediatrician usually occurs. However, many primary care doctors—pediatricians, family practice doctors, internists, gynecologists—are not fully aware of all the different treatments used for childhood leukemia, or of the late effects they can cause.

In addition, when treatment ends, patients and parents are not always given adequate information about the risks of developing late effects in the months, years, or decades after treatment. The risks of delayed effects are real, and it is vital that survivors become informed advocates for their own health care. They need to be educated, in a supportive and responsible way, about the risk of late effects; then if a problem arises, it will be recognized early and receive prompt attention. Young adults who have survived childhood cancer need to be fully informed of their unique medical history and be able to share this information with all doctors who care for them in the future.

A few months before the end of treatment, ask the oncologist or NP to fill out a summary of your child’s treatment. Some institutions have developed a unique summary that includes all the essential details of treatment and recommended risk-based follow-up care. Or your team can complete the COG treatment summary form or one available from Childhood Cancer Guides at www.childhoodcancerguides.org/wp-content/uploads/2016/02/treatment_record.pdf. Make several copies of the completed form, because this health history will become an indispensable part of your child’s medical records for the rest of her life. The hard copy version should be kept in a safe place, and a copy should be given to each medical caregiver. You can also scan the health history and store a copy on your computer, which makes it simple to print out new copies in the future and provides a backup in case the hard copy is ever lost. When your child leaves home to begin her adult life, this treatment summary should go with her, and you should keep a copy in a safe place. If you have the history on a computer, you can easily put it onto a portable device (e.g., thumb drive, flash drive, memory stick), or on mobile cloud storage, for your child to take with her or access online.

On November 19, 1998, we arrived by ambulance at the Children’s Hospital where we were given the devastating news. Words that silenced time; that paralyzed my being. “Tommy has leukemia … and it’s not good.” Tommy (17 years old) was diagnosed with T-cell ALL. His white count had risen to over 90,000 and the disease had also spread to his central nervous system. Chemotherapy had to start immediately. He began an intense protocol for the treatment of his cancer that included radiation and chemotherapy.

Through the next 3 ½ years we had many ups and many downs, too many to discuss. But during his illness, when he could, Tommy consumed his days with reading. On one chilly day in Pennsylvania, he asked me to drive him to the public library. He covered his bald head with a wool beanie and his once athletic physique was frail and weakened from the intense early months of chemotherapy and radiation. I pulled up to the front of the library, and I asked if he wanted me to go along to help. He said, “No thanks Mom, I can do it.” After twenty minutes or so, Tommy exited with a HUGE stack of books—all medical books! Tommy had found his passion for life—his true love of medicine.

One of our biggest obstacles was Tommy’s diagnosis of avascular necrosis (AVN) in his hips, shoulders, and knees. The AVN caused him excruciating pain, and he could only walk with the help of crutches. Partial hip replacement surgeries were done to preserve as much of the hips as possible and core decompression surgeries were done on both shoulders and knees. Tommy’s main concern was to get all the surgeries over quickly so he would not get behind in his studies, be able to take finals, and be able to walk without pain. And all the while he was still undergoing chemotherapy treatments for the leukemia. After the surgeries and much rehabilitation, I saw my 19-year-old son take his first steps without crutches for the first time in nine months. It was more emotional and exciting than when he was 10 months old taking his first steps!

Tommy graduated from college in 2004 with a major in biology and a minor in biochemistry and molecular biology. He spent two years at the National Cancer Institute as a research fellow and then went on to medical school. Following his residency, he then completed a fellowship in pediatric hematology oncology. His health is good, although he still suffers from pain due to the AVN and the damage to his joints. He recently had two total hip replacement surgeries.

Tommy has lived his life with enormous strength, determination, and grace. He never ever let his illness dictate his life. With all his fortitude, I can only imagine what his future holds as a phenomenal doctor and human being. His expertise and compassion as a pediatric oncologist has already touched so many families. And those lives he will touch along the way will only be richer for having crossed his path.