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Just before beginning her 9th grade school year, Lindsey, now 29, attended a back-to-school party to meet her new classmates. But she knew she wouldn’t get to hang out with them, at least not that year.
That’s because Lindsey had just learned her acute lymphoblastic leukemia had come back. She was originally diagnosed when she was 9 years old.
“There are lots of fears associated with relapse since obviously the first treatment didn't cure the cancer,” Lindsey said. “Initially it was hard because I knew going into it some of what I was up against again – social isolation, physical restrictions, needle pokes, higher risk for infections, hair loss, nausea, and vomiting. I no longer had ‘ignorance is bliss’.”
When cancer comes back, this occurrence is called relapse or recurrence.
When cancer recurs, parents, patients (when old enough), and the care team must make decisions about the next course of treatment. Families must also deal with the emotions stirred after learning of the relapse. Common reactions are anxiety, fear, anger, grief, and sadness.
Feelings of guilt are also common but often not warranted, said Erica Kaye, MD, a pediatric oncologist at St. Jude Children’s Research Hospital. Parents may think they are somehow at fault. It is also normal to question the care team. The reality is that certain types of cancer just don’t respond well to treatment.
“Sometimes, even when everyone does everything right, the cancer still grows,” Dr. Kaye said. “It’s nobody’s fault.”
When cancer recurs, the family and care team members work together to decide upon a new treatment plan.
In Lindsey’s case, she missed her 9th grade year to begin another 2 1/2 years of chemotherapy treatments. She kept up with school the best she could. Lindsey returned to school during her 10th grade year. She later graduated from high school and began nursing school at Brigham Young University- Idaho.
During her second year of college, she relapsed again. This time, she underwent a hematopoietic cell transplant (also known as bone marrow or stem cell transplant), which saved her life. Now an oncology nurse, she is married and has twin daughters.
When relapse occurs, families must make several medical decisions.
Parents are the experts on their children and what they need, said Traci Adams, a pediatric oncology social worker at St. Jude.
“This time parents have experience dealing with cancer. It may be helpful to draw on that,” Adams said.
The care team will ask families what their treatment goals are. Of course, every parent wants his or her child to be cured.
“We always affirm their goals and share that we are hoping for cure alongside them,” Dr. Kaye said. “In addition to hoping for a cure. We also ask ‘What else are you hoping for? And what else?’ This allows us to truly understand how best to help the patient and family make each day as good as possible.”
Relapse means different things in the context of different disease processes and different individual and family circumstances, preferences, and goals, Dr. Kaye said. Treatment options may vary based on several factors such as the type of cancer, prior medical treatments, and the level of advanced disease. In some cases, there will be treatment options that can result in cure. In other cases, the chance of cure may be small.
If there are no further treatment options that can cure the cancer, there still are therapies that allow children to live as well as possible for as long as possible. No matter the predicted outcome (prognosis), parents and patients are encouraged to think about what would create the best possible treatment experience.
“Once I started treatment, I felt like I was in control,” Lindsey said. “For me that made it easier. I couldn’t change my diagnosis, but I could control how I was going to handle it.”
Parents are encouraged to include patients in the conversation, whenever possible. Sometimes patients as young as 7 may be able to make certain decisions. Other times, an older child may be less emotionally capable to participate in decision-making discussions. In both cases, a child life specialist can help with explaining matters in child-friendly terms.
It is normal for younger children to think that the cancer came back because they did or said something wrong (“magical thinking”). Whenever possible, it is important to reassure the child that they are not to blame for the disease recurrence.
It is important to consider the side effects of different treatments. Sometimes families may want to try the most aggressive treatments available in hopes of a cure.
However, these options may cause serious side effects that could significantly harm a patient’s quality of life. There may be options available that involve fewer side effects.
If the hospital offers a palliative care team, this group of expert clinicians can be very helpful in the development of a treatment plan that is personalized to the patient’s and family’s needs, goals, and wishes. Palliative care focuses on treating symptoms, providing comfort, helping with difficult decision-making, assisting with care coordination (for example, to receive services and resources at home, instead of traveling to the hospital), and focusing on trying to make every day as good as possible. Palliative care is not exclusive to end-of-life care; rather, it is an important part of a cure-directed treatment.
Everyone has different preferences about the location of treatment. Some patients prefer not to be at the hospital and wish to receive treatment at home. Others prefer to go to a clinic or to be admitted in the hospital.
Questions to ask include:
Families are encouraged to consider the needs of the patient, parents, siblings, and extended family members when making decisions.
Lindsey’s mother was no longer able to be a stay-at-home mom to her 4 children because she went with Lindsey to her treatments. Her father, a physician, had a busy schedule. Her siblings often stayed with family members and friends when necessary.
“It really flips your whole family around,” Lindsey said.
Keeping things as “normal” as possible is often very important. Kids typically need structure and routines.
Parents are encouraged to be practical.
Things to consider include:
Dealing with relapse may add an additional emotional burden that wasn’t there the first time, Adams said. The feelings may be more intense or different than before. The care team, including social workers, chaplains, and psychologists, can help families find ways to deal with emotions and stress.
St. Jude psychologist Kendra Parris, PhD, has these recommendations:
It is very common for patients and family members to question their faith when a relapse occurs.
“Sometimes parents feel disappointed with God and a real sense of abandonment,” St. Jude chaplain Mark Brown said.
Often families express disappointment that they worked so hard to get through the first treatment experience only to be let down when they learn cancer has returned.
“When the news gets bad and keeps getting worse, it tears up our faith infrastructure. It upends it,” said Brent Powell, director of spiritual care services at St. Jude. “When families first get the diagnosis, they build a hopeful foundation upon which they can stand. The news of relapse can break apart that foundation. It’s like ‘Why has God brought us this far only to let us down now’?”
It is helpful to come to terms with the fact that life can be unpredictable and uncontrollable, Brown said.
“There is mystery. ‘I’m not going to know in an ultimate sense what this means. All I know is this is devastating’,” Brown said. “There may not be an answer to why this thing happened.”
Looking back on her experience, Lindsey recommends searching for the good in each situation. While she knew treatment would be tough, she also remembered the positives.
“Everything had a purpose even though it wasn’t fair,” Lindsey said. “Look for the blessings. Our family grew stronger.”
That attitude changed her outlook on life. She is more appreciative of the little things.
“Maybe you have one day when the pain is a little better or you can eat a few little bits of food,” Lindsey said. “You celebrate every little victory. If you have a bad day, that’s OK. It’s normal to have negative emotions for a time and healthy to vent. But try not to make every day miserable. Rather, look for the positive in each day. Seeing the positives and miracles in a day will change how you view your situation at the present time and provide fond lasting memories of the past.”
Dr. Kaye recommends that families find ways to create memories together. Focus on finding something to enjoy together each day, even if just a small thing. Create special items, such as fingerprint art or hand molds. If possible, take a special trip. If this is not possible, then the palliative care team often can help families find creative ways to spend time together in or around the hospital.
Make every day as good as it can be.
“It is important to be mindful of how precious every day is, for all of us,” Dr. Kaye said. “It’s meaningful to capture memories and make each day as good as possible, no matter the outcome of treatment.”