Caring for a Child with Leukemia

Explain procedures to your child, keep her involved in distracting activies, and hide your own fear or anger. 

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. 

Resources

• Childhood Leukemia Foundation offers lists of resources; ipods and laptops; wigs made of 100 percent human hair sewn into a cap; baskets of gifts; and a binder to keep track of information and store booklets and a pre-paid telephone card. 
• The National CML Society (NCMLS) serves families and patients with a rare form of leukemia, CML, through peer-to-peer matching programs, referrals for services, a portal to reach experts online, and educational events and retreats.

General pediatric cancer resources

• The Jessie Rees Foundation delivers inspirational presents, including a sketch of your child. 
• Alex’s Lemonade Stand Foundation (ALSF) raises money to support research; offers a travel fund to cover transportation, lodging, and meals to visit specific hospitals; connects parents; and provides education for siblings. 
• American Childhood Cancer Organization (ACCO) supports research and provides online support for parents.
• CancerCare offers telephone counselling by oncology social workers; online support groups; one-hour online or telephone workshops by experts; and financial assistance for transportation, medications, home care, child care, or durable medical equipment.
• CureSearch for Children's Cancer provides information about tests and procedures, treatment options, medications, side effects and other issues.
• Grahamtastic Connection provides free laptops, tablets, robotics and internet access to children who are hospitalized or bedridden. 
• Hopecam connects homebound children to their classmates via web cameras and laptops.
• Make-A-Wish America aims to give eligible children a wish come true.  
• Melonhead Foundation provides financial assistance to children with cancer and their families who are seeking non-traditional medical care, such as acupuncture and massage. 
• Pablove Foundation funds pediatric cancer research and offers photography classes to kids with cancer.
• Pediatric Oncology Resource Center, maintained by parents, offers online information for parents of children with cancer and for survivors of childhood cancer. 
• Rally Foundation offers research grants, a 1-year $500 grant to cover treatment or other related costs, and personalized fundraising pages for athletic patients. 
• Shining Stars Foundation offers kids with cancer fun activities in all-day or overnight events and week-long camps. 
• Starlight Children’s Foundation provides an online social network for teens with life-threatening illnesses and their siblings, as well as in-hospital parties. 
• The National Children’s Cancer Society offers online communities and grants for lodging, meals, transportation, health insurance, and medical expenses not covered by insurance.