Children with leukemia and their parents often say that the treatment was as hard as the symptoms of the illness — and parents do well to monitor their children for signs that they might stop cooperating with the nurses. The last thing you want is for your child to have to be tied down to get a chemo injection.
As a parent you’ll need to explain procedures to your child, keep her involved in distracting activities while waiting, and hide your own fear or anger. Keeping your child calm during the procedure is most important. Much research suggests that children will cooperate if parents project confidence to the child that they can handle all the challenges.
That’s a tough load, but you’re not alone and much help is available. Cancer rates among children are slightly up — in 2016, an estimated 10,380 children in the United States under the age of 15 will get a cancer diagnosis. But many more survive because of advances in care. You may remember stories of kids with cancer who died when you were a child. Forty years ago, 40 percent of children diagnosed with cancer died within five years.
Now, fewer than 20 percent of children with cancer in that time. The numbers depend on the kind of cancer, of course. The most deadly is cancer of the blood and bone marrow, known as “acute myeloid leukemia,” which has a 65 percent 5-year survival rate. The child’s age at onset, the location and extent of the tumor, and the treatment all make a big difference, too
The main treatment for childhood leukemia is chemotherapy. Your child will receive the drugs in cycles, with rest periods in between, over a year to three years. Chemo can cause hair loss, nausea and fatigue, and a tendency to bruise or bleed easily.
Children with more dangerous cases may also get a stem cell transplant and, in some cases, receive drugs, surgery, and radiation. Look for specialists in pediatric cancer usually within their own hospital group. Make sure you understand the treatment and its side effects. Also be sure to tell all of your child’s doctors about any herbal remedies or other alternative treatments you’re considering or giving your child.
Look into palliative care, which manages symptoms. It is not the same as hospice care, which focuses on easing death. Palliative care is offered alongside care intended to cure and can make it possible for daily life to continue more smoothly. The organization Get Palliative Care provides a directory of hospitals with palliative care teams.
If you tend to become anxious or despairing, it is also essential for your child’s welfare that you reach out for support early on. Most parents seem to feel less anxious after certain milestones are passed and surprisingly few develop depression. However, studies indicate that it’s sadly common to develop symptoms of what psychologists call “post traumatic stress,” a term we most often hear describing veterans home from a war zone. As a caregiver to a child with cancer, you may find yourself distracted during the day or at night by memories of the moment you heard the diagnosis, the moment your child entered the intensive care unit, trips to the emergency room, or the death of a hospital roommate. You may feel agitated whenever you hear the word “cancer” and be obsessed with avoiding other cases of cancer in the family.
To ward off that ongoing reaction, consider seeing a counsellor and connecting with support groups, which you can find through a variety of organizations or referrals from your medical team.