Warriors and Survivors -Children Cancer Stories by Rukh Yusuf

Blog Post # 02 

I am Rukh Yusuf, Clinical Pharmacist, also specialized in Total Parenteral Nutrition and Bone Marrow Transplant. I have been working in Pediatric Oncology unit of a public hospital for several years. The mission of this blog is to bring to you the real-life stories of child patients suffering from cancer. Cancer is still a difficult disease to handle and treat. However, when it strikes the children, some so young that they cannot even speak, their agony is beyond expression and words. Let us pray especially for children suffering from cancer for early and complete remission. May Allah shower His Merciful Blessings upon them. Aameen.

Today’s warrior is 10 years old Afghani fairy, who was living happily in Afghanistan in a painter’s home. Life was good until one day she found a boil on her neck, which gradually spread and was diagnosed as Hodgkin’s lymphoma.  (A cancer which originates from white blood cells called lymphocytes. Symptoms may include fever, night sweats, and weight loss with non-painful enlarged lymph nodes in the neck, under the arm, or in the groin). Her condition was determined to be stage three after series of investigation. On doctor’s advice, the family shifted to Lahore and landed at the public hospital for treatment.

A number of battles were waiting for the brave little heart and her family. Among these, language barrier was the top most. It was not easy to explain symptoms and understand instructions. Hardly anyone knew Persian here in Pakistan.

Fairy had to go through a lot of investigation tests before initiation of chemotherapy which is given in monthly cycles.  A lot of their money had been spent already even before the treatment started at the hospital. Although food and treatment was free but one should have enough money to live and manage in a foreign country.  Her father tried to earn money but being a foreigner, jobs were not available for him easily..

Cancer treatment is long and series of tests are needed to reach diagnosis. In Pakistan there are few pediatric oncology units, public or private. Only public hospitals offer free treatment, while the investigation and treatment in private sector is costly and not easily available. Public hospitals being few are overcrowded and have limited facilities. It is difficult for even a financially stable family to go for treatment in private hospital.  Public sector hospitals are doing a great job but the patient load is huge and their handling remains an issue.

A serious issue particularly facing children cancer is the non-availability of cancer medicines. Some of them are not registered in Pakistan and are available only through grey channel. The prices and availability remain highly variable and unpredictable.

Almost similar treatment guidelines of cancer treatment are followed around the world. After completion of treatment plan, which can be from several months to a year or more. The patient has to go for follow up and go for further investigations to evaluate treatment outcome. This whole procedure makes cancer treatment difficult, lengthy, stressful and painful. What is often not talked is the stress on the family of the patient. In case of child patients, it is invariably one or both parents, who have to carry the burden of handling their child. It is not easy at all because it disrupts the entire family, family income, and care of other siblings. It may hamper the education of other children due to time and cost incurred on the patient. If the father devotes time, he cannot work for earning money. If the mother devotes her time, the whole family set up is threatened to crumble down. It is such a dilemma for parents  which has no solution. Even then, the parents of these children somehow manage.

As per treatment plan of Hodgkin’s Lymphoma, Fairy had to go through eight monthly cycles of chemotherapy. After few months of treatment fairy got better and was discharged. She had to come back after one month for follow up and to continue further chemotherapy cycles. It so happened that pandemic took over many lands and the Lockdown was imposed. They did not get visa to come back. Pandemic continued and their financial issues got worse.

Instead of one month, it took them three months to come back, laden with loan burden. Fairy had gotten worse due to long pause in treatment, and it occurred after tests that her disease had meanwhile relapsed. Chemotherapy was started again, while her father tried finding even some minor job to run life but couldn’t.

Fighting bravely once again, Fairy is under treatment and getting gradually better. Her mother is worried about her other children back home. She is passing time in a charitable Inn and looking after her child. She has learned Urdu language here but is still unable to express and share her agony as it is not easy to live in foreign country.

Our Prayers are for fairy’s recovery and her happy and safe departure back to her land.

Note: Name has been changed to protect identity