Warriors and Survivors - Children Cancer Stories by Rukh Yusuf

Blog Post # 03.

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.

My Today’s brave heart is 11 years old “Doll”, an active shining star who loves playing and hovering around. In the winter of 2019, a boil appeared on her foot. The local doctor did multiple dressings and treated her, but it did not reduce. Later, it revealed as tumor on x ray.  They were referred to local civil hospital and after MRI they were finally sent to Lahore for treatment.

After multiple tests, her tumor was diagnosed as EWING Sarcoma of Left foot. Her treatment started in Oncology department, tumor size reduced after chemotherapy and her pain settled down. As soon as she felt better, she started hovering again in ward with her beautiful smile. After completion of chemotherapy cycles, investigations were done for evaluation. It was revealed that her disease is metastatic, so she was sent to surgery department for further treatment.  To stop further spread her foot was amputated in surgery department. She was unable to walk, and it was the biggest tragedy of a hyperactive child and her family.

After surgery as per protocol, chemotherapy cycles started again, Doll was given wheelchair to facilitate her movement and she was happy at that too. She used to move around in ward on wheelchair and it looked like she had forgotten her pain, pain of foot amputation.

To avoid further spread, radiation was part of treatment as well. Her mother regularly took her to other hospital for radiation. Wound was healing gradually but she used to cover her foot at all times.

Doll has two brothers and four sisters; all are school students. Her father sells “Naan pakoras”. Family is running life hardly.  All the educational expenses, doll’s treatment cost and other expenses were met with great difficulty. Her parents are thankful to Allah that Doll is doing well even with wheelchair. Doll is still happy moving around on wheelchair.

Ewing sarcoma is a cancer that may be a bone sarcoma (tumor) or a soft-tissue sarcoma with swelling and pain at the site of the tumor, fever, and can be a bone fracture. The most common areas where it begins are the legs, foot, pelvis, and chest wall. It can be localized and metastatic (spreading) as well. Regardless of where it starts, it can spread to other bones, bone marrow, and even vital organs such as the lungs, heart, and kidneys.

Ewing’s sarcoma is a very rare type of cancerous tumor. It affects people from the ages of 10 to 20 and has a high cure rate. It is uncommon in adults. In Pakistan, a relatively high frequency of bone tumors has been observed in the Northern region as compared to the Southern part of the country. Childhood and adolescence are sensitive stages of life due to greater proliferative activity of cells, and environmental toxicants may have more deleterious effects in this age group as compared to adults. Most cancers result from the interaction of genetics and environment.

Diagnosis may involve a number of tests to see Ewing’s sarcoma and its spread and to what extent. This is known as cancer staging. Tests may involve from physical exam, X-rays, Bone scan, Magnetic resonance imaging (MRI), Computed tomography scan (CAT/CT scan), Positron emission tomography scan ( PET scan) and blood tests and biopsy.

Treatment depends on several things, from size of tumor to its spread. Treatment options include Chemotherapy which is usually the first step in which, medicines are used to kill cancer cells and stop them from growing. More than one type of chemotherapy may be used at a time. In some cases, surgery may also be needed, amputation of arm or leg may be needed to stop spread. Radiation may also be needed to kill any residual cancer cells after surgery.

Even after surgery and radiation Ewing’s sarcoma can return even a decade after the diagnosis and treatment. Children with Ewing’s sarcoma that hasn’t spread have cure rates as high as 80%. It’s much lower in cases where the tumor has spread.

Medical science has not definite answers for many questions about cancer, even in this century we still are not sure which patient will cure and which disease will relapse. Its only we can do our part in proper treatment, and care and pray that Allah brings out best for the suffering soul.

Moving around on wheelchair, she is under treatment fighting bravely once again with her shining smile. We all pray may Allah cure “Doll’ completely and every cancer patient and ease their families. Aameen

 

Note: Name has been changed to protect identity

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

 

 

Warriors and Survivors - Children Cancer Stories by Rukh Yusuf

Blog Post # 01 

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.

On a cold afternoon in January 2018, on her way back from Quran lesson, 9 years old Farha fell and got a hit on her leg.  There was no visible injury, but she started limping in a few days.  No local physician or “Jarrah” could help the swollen leg and put the poor soul at ease. After MRI, tragic news of cancer (Ewing Sarcoma of Left femur) diagnosis was heard in a nearby hospital. (Ewing sarcoma is a type of cancer that may be a bone sarcoma (tumor) or a soft-tissue sarcoma with swelling and pain at the site of the tumor, fever, and a bone fracture. The most common areas where it begins are the legs, foot, pelvis, and chest wall. It can be localized and metastatic (spreading) as well).  According to the American Cancer Society, the overall five-year survival rate for localized Ewing sarcoma is 70 percent. Patients with metastatic disease have a five-year survival rate of 15 percent to 30 percent). In our part of the world survival is less. Farha was referred for cancer treatment to a public Hospital in  Lahore.

It is never breezy to be with pediatric oncology patients. One must be brave enough to see withering flowers, pale faces and trembling hearts, surrounded by as many crying eyes and praying lips. It has been around seven years now that I am seeing these angels whose dim lights keep me at my toes to do something, anything to brighten up their life.

Farha and her family were unaware of the many ordeals ahead. She got admitted in hospital Lahore for chemotherapy treatment. Her mother stayed with her while the siblings had to be looked after by the father at home. Without knowing there was a lot to face ahead, she patiently completed series of investigations and five tough chemotherapy cycles. In Oct 2018, in spite of chemo, her cancer spread and she had to bear amputation of leg to avoid further spread. The brave child and her family went through this trauma too.

Though treatment is free in public hospital, but running family life was still difficult. Looking after rest of family behind and taking care of sick child was hard to balance.  Elder daughter was married at an early age and elder son had to discontinue education for earning livelihood.

Farha’s battle continued and so was her seven cycles of chemotherapy. While leg wound was healing, her left eye swelled and she started losing her vision from left eye. Her treatment in oncology unit is continuing but her mother has lost her stamina. Farha is stunned too. She is going away from life slowly and gradually. Who knows how much her little heart is aware and afraid of death?

In Pakistan, there are almost 10,000 new Pediatric cancer cases every year. Cancer is one of the leading causes of morbidity and mortality among children and adolescents. Almost half the children with cancer have no access to treatment whereas large numbers are unable to complete their treatment due to many different factors. Patient family has to face a lot of issues from hospital access, family management, financial burden and much more than that. Unlike the developed world where 80 % of cancer patients survive, Pakistan has low cancer survival rate i.e. 20 to 25 % due to number of factors we shall discuss in details in next episodes.

During my stay with these brave hearts, I have met several little warriors fighting with this deadly disease. I see them silently suffering, most of them even do no not know how to express their agony; but one can see their empty eyes. I wish we all could do our part to lessen their agony and pain. We can see how we can help them in their suffering and can be able to ease them in their trials. I shall be sharing the battles of many of them to show the world their courage, resilience, and most importantly their continuing challenges.

Note: Names have been changed to protect identity.