Support groups help children with cancer

Cancer knows no age or gender. It chooses no one whether you’re rich or poor. And with any cancer, grief begins at the time of diagnosis.

For parents, especially mothers, it’s hard to stay positive when her child is sick — even with simple coughs and cold. What more if it’s a life-threatening disease like cancer?

Jan was five years old when he was diagnosed with Ewing’s sarcoma. It started with a small lump on his right hand that grew up to 5 centimeters.

Ewing sarcoma or Ewing’s sarcoma is a malignant small, round, blue cell tumor that occurs most frequently in teenagers and young adults. It is a rare disease in which cancer cells are found in soft tissue or in the bone.

Jan is second child to a family of four children. His mother, Analinda, is a former barangay social worker in Albay, Bicol, while his father is a Philippine Marine staff sergeant.

Jan endured eight chemotherapy sessions, bu this body did not respond and only made him weaker. Thus, his parents decided to stop chemo for a while.

“We thought we’re going to lose him,” Analinda said.

After a year, Jan resumed his chemo sessions, but his cancer continued to spread. In October 2017, the doctors decided to cut off his right arm to prevent cancer from spreading.

Jan’s condition improved. He is now eight years old, studying in Pasay City. He loves Mathematics and computer games. He wants to be a doctor someday.

Still battling it out

Jervy, on the other hand, was diagnosed with recurrent germ cell tumor at four years old. It started with a swollen testis, with on-and-off fever.

Germ cells normally occur inside the gonads (ovary and testis). Studies show that germ cell tumors that originate outside the gonads may be birth defects resulting from errors during development of the embryo.

Jervy’s testicles had to be removed. But after a testicular biopsy, doctors found it was already Stage 3 cancer. He endured chemotherapy sessions as well, but it relapsed twice.

“It hurts! Why? It was four years and nothing happened?” said Sayda, Jervy’s mother.
But it didn’t just end there. After his chemo sessions, doctors found yet another illness in the form of ruptured stones, stage 5.

Jervy endured a quick peritoneal dialysis and then back to chemo sessions, but his body can’t take it anymore. At present, Jervy is unable to walk, but is being home schooled for kindergarten curriculum. He loves to draw.

Despite everything her son had been through, Sayda remains positive.

“We will fight until my son can fight. Because he said, mom I don’t want to die yet,” said teary-eyed Sayda.

Childhood cancer and death

According to Cancer Coalition, cancer incidence is increasing, and is ranked as one of the leading causes of death among adults and children. As of 2012, 189 out of 100,000 Filipinos are afflicted with cancer every year. At least 3,900 children are diagnosed with cancer every year.

Childhood cancers now has an average survival rate of 84 percent in high income countries and a growing number in middle-income countries. However, average survival rate in the Philippines is at a low 30 percent.

According to an informal survey conducted by Cancer Warriors Foundation Inc. (CWFI), parents of these children with cancer reveal they usually don’t have histories of cancers.

“We found out it’s not hereditary. I think it’s from the food they [parents] eat, surroundings, and environment. Most parents work in manufacturing companies, chips factory, and are exposed to pesticides. Some of them are farmers in Batangas,” revealed Rose Ann Alvaro, coordinator and admin officer of CWFI for its Manila and Pampanga offices.

CWFI was founded by JamesAuste, a brain cancer survivor, in 2000. It has offices in Cebu and Batangas, serving 400 cancer patients nationwide from one to 18-year olds. The Top 3 cancers reported by people seeking assistance from CWFI are acute lymphocytic leukemia (cancer of the blood), retinoblastoma (cancer of the eye), and lymphoma (cancer affecting the immune system).

Apart from providing free medicines and advocating cheaper medicines, CWFI provides temporary housing to patients who will undergo chemotherapy in Cebu City. It also gives chemotherapy grants sponsored by private individuals, companies, and corporations in Manila and Batangas. The foundation also offers counseling, Bible studies, and facilitates group discussions among parents.

Most CWFI patients come from referrals, but interested patients can apply. They only have to submit the following requirements: Case study from the Department of Social Welfare and Development, barangay clearance for indigency, medical abstract, and patient’s photos for profiling, and interview.

“I believe cancer is beatable if the child is diagnosed early. We were all given the opportunity to help each other. I believe faith and prayers play a huge part in child’s recovery,” Alvaro said.

Treatment beyond medicines

Maria Fatima Garcia Lorenzo, director of Kythe Foundation, on the other hand, believes that while medicines and treatments are important, they should go hand-in-hand with psychosocial support.

“It takes more than medicines to get well. Children and parents need emotional support,” said Lorenzo.

Kythe Foundation is a non-profit, non-stock organization aimed toward improving the quality of life among hospitalized children with cancer and other chronic illness.

It caters to 11,000 patients nationwide from infant to 18 years old, and that includes Jan and Jervy, who are both seeking treatment at the Armed Forces of Philippines (AFP) Medical Center.

Under Kythe’s flagship program, Child Life Program, the kids with cancer are given free medical and social support (eg play opportunities and activities) to give them a semblance of a normal childhood, and to give them added information on how to care for themselves and their parents.

For patients to avail of Kythe Foundation’s free social and medical support, they have to be seeking treatment in eight partner hospitals: AFP Medical Center, National Children’s Hospital, Perpetual Succour Hospital–Cebu Cancer Institute, Philippine Children’s Medical Center, Philippine Orthopedic Center, Quirino Memorial Medical Center, Southern Philippines Medical Center, and Tarlac Provincial Hospital.

And true enough with strong psychosocial support, Lorenzo reported that their patients’ mortality rates decreased. They have about 15 cancer survivors, who are declared cancer-free for 2017, and 80 survivors since Kythe Foundation started.

“I hope these psychosocial supports are integrated in the treatment of these patients in our health system. I wish it’s automatic when your kid has cancer, it doesn’t only mean medical. The hospital, every pedia ward must have a psychosocial support program because the child and their parents cannot cope,” added Lorenzo.