Patient Voices: Childhood Cancer
Still a Mom
Jaiden Ramirez, 7, Voice of mother, Toshia Ramirez, Houston
Toshia Ramirez, a master-at-arms in the Navy, has two sons. One of them, Jaiden, has an inoperable tumor surrounding his brainstem. Physicians believe he has only a few months left to live.
In December, when his mother was stationed in Guam, Jaiden developed poor balance and difficulty speaking and writing. A few weeks later, doctors realized he had a brain tumor, and Jaiden and his family were transferred to Houston for medical care. Jaiden was thin and active before beginning chemotherapy. But the medication has made him bloated, and Jaiden is often tired and nauseated.
The Ramirezes are staying in a Ronald McDonald House in Houston while Jaiden gets medical treatment in a nearby hospital. All of the family’s belongings are still in Guam.
Ms. Ramirez has spoken with Jaiden about his cancer and the possibility that he will die. She prays for a miracle and hopes that a clinical trial that Jaiden has entered will extend his life long enough for a new treatment to emerge. In the meantime, Ms. Ramirez does her best to stay positive and enjoy every moment she has with her son.
A Boy’s Life, Restored
John Carey, 16, Colorado Springs
John Carey found out that he had an advanced form of Hodgkin’s lymphoma at age 13, during a routine physical to join his school’s wrestling team.
John’s doctor first believed he had a heart murmur, but further tests showed a tumor in his chest that had begun to affect his heart. John immediately began chemotherapy.
Highly treatable, Hodgkin’s lymphoma generally responds to a few rounds of chemotherapy. But John had to have 11 rounds, a stem cell transplant and radiation treatment over the course of two years before his cancer was in remission. John now sees his doctor every three months to monitor his health and ensure that the cancer does not relapse.
John said that today he is happy to be able to hang out with his friends again and resume normal life.
Finding a New Voice Amid Loss
Max Mikulak, 7, Voice of Melissa Mikulak, San Diego
Melissa Mikulak, lost her son Max to neuroblastoma when he was 7.
At age 3, Max began frontline treatment for his cancer. He responded well to chemotherapy, although he suffered hearing loss. A year later, doctors said he had no evidence of disease.
Children with neuroblastoma have an 80 percent chance of relapse, and Max’s cancer came back when he was 5 years old. After a few clinical trials, all treatments stopped working.
After Max’s death, the Mikulaks created a table in their home in his memory. It holds some of his favorite toys and photos, as well as the urn that contains his ashes. Ms. Mikulak said that family members visit the table when they want to feel closer to Max. Bruce the Whale was Max’s favorite toy. The Mikulak family includes the toy in photos and brings it on trips as a way of keeping Max in their lives.
Ms. Mikulak said that helping her other children cope with the death of their brother has been challenging at times. Her daughter, Hannah, 11, sees a therapist, but Ms. Mikulak is still trying to figure out how to help Nick, 5, understand everything that’s happened.
After Max’s death, Ms. Mikulak and her husband, Andy, created a nonprofit organization, Max’s Ring of Fire, to help raise money for pediatric cancer.
Living With Cancer’s Long-Term Impact
Kayla Cooper, 25, Houston
Kayla Cooper, a student at the University of Houston, was 15 months old when she was found to have neuroblastoma, a malignant cancer, on her right kidney and spinal cord.
Because of how the cancer grew, Ms. Cooper is paralyzed from the waist down and she relies on a wheelchair and other assistive devices to get around.
Three years ago, Ms. Cooper became pregnant with her daughter, Kimora. Because of the chemotherapy and radiation treatments Ms. Cooper went through as a baby, doctors were concerned about how her heart would respond to the rigors of pregnancy. They closely monitored Ms. Cooper, and her pregnancy was uneventful.
Ms. Cooper is in school, working toward a master’s degree in social work. She believes that her experiences as a cancer survivor have shaped her desire to help others.
Childhood cancer survivors are at a higher risk for developing a new cancer later in life. Ms. Cooper monitors her health with annual checkups and keeps in close contact with her doctors.
A Mother’s Never-Ending Worry
Sarah Goldberg, 13, Voice of Robin Goldberg, Westlake Village, Calif.
When Robin Goldberg’s daughter, Sarah, was born, she had a difficult time eating and did not gain weight as she should have. Her pediatrician called it “failure to thrive” but could not determine the cause.
After an X-ray to determine if a feeding tube was inserted properly, a radiologist found that Sarah, then 6 months old, had a large tumor in her abdomen. It was a mature teratoma, a benign tumor containing a variety of tissues, and it was surgically removed two days later.
Even after the tumor was removed, Sarah did not gain weight well. Her parents fed her constantly, but Sarah would frequently vomit. She was hospitalized for dehydration and confined to her home for five months to prevent infection. When Sarah turned 5, Ms. Goldberg finally felt like the worst was over.
As Sarah grew, however, she developed scoliosis, a curvature in her spine, which may have been caused by the tumor.
Sarah now wears a brace to keep her spine growing correctly. Ms. Goldberg, who did graduate work on cancer, said that her daughter’s cancer experience had changed her. “To me it was nothing but a science,” she said. “Then Sarah came along and put a lot of emotion to it.”