Children Cancer Stories by Rukh Yusuf - Blog # 07

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.

Treatment success of any disease is dependent on many factors includingdiagnostic tools,proper diagnosis, patient’s compliance to treatment, and medicines availability.In case of pediatric patients,a lot of things needs to be focused: children’s psychology, their sensitivity, immunity,and inabilityto explain their pain and discomfort are the major reasons contributing to the treatment success or failure.Due to the above factors, severity increases when we talk about pediatric oncology patients.

Out of all reasons, medicine availability is the most sensitive area when we talk about children with cancer. Medical staff can’t do much when some crucial medicine is not available in market for any reason. It is more soespecially whenno alternative is there or is unavailable too. Cancer treatment involves several medicines that are given as per protocol. Treatment efficacy is affected badly when some of the medicines are not administered due to shortage or for any other reason.

Medicine availability and cost of medicines are two subjects which are critical to the treatment of cancers. Unfortunately, both areas leave much to be desired. I would keep returning to these topics from different dimensions.

Amphotericin B is among the top list ofimportant medicines for pediatric patients, both for treatment and prophylactic use.It is still not registered in Pakistan, and therefore is never freely available. It comes to market through grey channel and sells at uncontrolled price. As per law, public sector hospitals can’t purchase any unregistered medicine. They must go through proper channel in order to provide freely for patient’s use. Scenario becomes more difficult for a family and even for healthcare provider when the medicine is life saving and the patient is a child. No one would want to see a child suffering due to unavailability of medicine.

Great are the philanthropists and donors who manage such medicines for our child patients. By Allah’s grace, our hospital has such people who help these children in the hour of need. There is a dire need of a system to rectify such issues of non-availability through registration of medicines at the level of DRAP.

Our today’s survivor is nine years old Abdul Basit from Rahim Yar Khan. In Dec 2019, Abdul Basit got fever which did not subside with treatment. Due to recurrent fever and swelling in lymph nodes, his parents took him to the tertiary-care hospital in Rahim Yar Khan. Biopsy was done and after diagnosis of Acute Lymphocytic Leukemia, Abdul Basit was referred to Lahore for treatment.

In a tertiary care hospital in Lahore, doctors informed about the type of blood cancer and told them to complete treatment which would be of three years duration. The parents agreed and the treatment was started. Abdul Basit’s father is driver and family has only two children: Abdul Basit and his sister. They had to leave their daughter with relative for the treatment of their only son.

Presently, the family is satisfied with the treatment.They say that almost of all the medicines were available without cost from the hospital, except couple of injections which werenot available in hospital and were short in the market too, and so were too expensive to afford.

Abdul Basit got fungal infection somehow and it was difficult for him to eat because of mouth infection. Amphotericin B injection was needed for his treatment which was not available in the hospital.If it was available in the market,it would be too expensive for the family to afford. They could manage to buy only a couple of injections due to unreasonably high cost.

Our blessed donors came to help and arranged injections for him. His mother is thankful to the donors and helping hospital staff that they feel the pain of suffering child and manage injection and other supplies for him. It’s been two years now that little angel’s treatment is going on, brave soul is still fighting with the disease and his parents are still struggling to stay in hospital and complete their son’s treatment.

May Allah reward the kind donors and bless Abdul Basit best of health. Aameen

 

Note: names have been changed to protect identity.

 

Warriors and Survivors - Children Cancer Stories by Rukh Yusuf - Blog # 06

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.

Last year, just before Lockdown, 11 years old Ansa started having pain in her right leg. She bore it for few days, thinking it to be just a normal pain and that it would go away on its own.  The pain continued, and soon she had difficulty in walking and playing. When it became unbearable, she told her mother. Mother consulted a local physician who gave medicines, but to no effect. After x-ray, the doctor diagnosed muscle sprain and advised physiotherapy. Ansa went for physiotherapy and infrared radiation for two weeks to cure her pain, but it had no effect. Not only the pain increased, but her leg developed swelling near the knee joint. Later, on some relatives’ suggestion, Ansa was referred to an orthopedic surgeon in Sargodha. He advised some tests and informed that physiotherapy may worsen her leg. She was referred to Lahore in cancer hospital. Osteosarcoma (bone cancer) was diagnosed after multiple investigations.

Ansa is resident of Mianwali. She has two sisters and three brothers. Her father was a driver in Karachi, but he died in road accident leaving the poor family alone. The eldest brother is working in army as helper, all younger siblings, including Ansa are studying. Life was not that easy before Ansa’s illness and has become more difficult since then. She has to travel to Lahore with her mother every now and then for treatment. Her mother has to leave younger children alone at home.They come and stay at her uncle’s home in Lahore for treatment.The whole family is affected. The elder brother who is living outstation to earn livelihood is worried for her younger doll, but he can’t be with her due to his job. All younger ones are facing difficulty to manage alone without mother.  Ansa also does not feel comfortable living out of home.

Ansa is a talkative child; she loves to study and wants to be a teacher one day. She is also fond of playing with her friends. When she talks about her favorite things, her face lights up like anything and she forgets her pain and disease. Then suddenly her light dims and her eyes fill with tears as soon as she recalls her pain and trauma. It is so heart wrenching to see her in this state.

When she was first admitted in hospital, she was unable to walk and was on wheelchair. She used to cry mostly because of severe leg pain and the fear of hospital. Now, her two chemotherapy cycles have been completed and her pain and swelling has gotten better. She can now walk on her own.

Ansa is happy that she is getting better with time. But still she does not like coming to hospital, whenever she has to come for chemotherapy. She says, the night before hospital admission is frightening.  Chemotherapy is not liked by most of children as it is associated with nausea and vomiting and many other side effects. Only these brave souls know how they feel when they get chemo and suffer their side effects.

Though Ansa is improving with treatment by grace of Almighty, but she is worried about her education and future. She also has the feeling that she is getting elder and still in grade four. Ansa wants a normal life just like all other children. She is also aware of her family’s financial position and want to support her family. But for all this she needs to recover first.

We pray that Ansa recovers soon and realize her dreams of her bright future. Aameen

 

Note: names have been changed to protect identity.

 

Warriors and Survivors - Children Cancer Stories by Rukh Yusuf Blog Post # 05

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.

Zia is 12 years old boy who used to be a lively child, loved to play around, and making everyone happy. He had lots of dreams for his future. Last year in July, Zia had nose bleeding, which was taken as normal. After some days, he had another episode of nosebleed. As it was still of minor concern, so his parents did not bother much. Soon there was a bad smell in his nose and throat alongwith nasal bleeding. It was unusual, so it became worrisome for both Zia and his family. His parents decided for a checkup. The local physician in Narowal treated him, but could not ease his symptoms.On doctor’s advice, Zia had to go for CT scan, which appeared normal.

Life was simple, happy and full of bright dreams for Zia until one day he had major nose bleed. Seeing his history, the doctor referred Zia to Lahore. After many diagnostic tests in a public hospital in Lahore, it was revealed that lively Zia had tumor in his head (Nasopharyngeal carcinoma NPC). To no surprise, it was tragic news for Zia and his family. He is a brave and smart boy but this terrifying news dimmed his liveliness.

His treatment started, doctors said he had to go for surgery to resect tumor to survive. It was the hardest decision his parents had to make to send their lively child for such a difficult surgery. No one can imagine how much Zia and his little heart were afraid of head surgery. But surgery was mandatory and Zia went through it somehow.  By Almighty’s grace successful surgery was done and treatment continued.

Chemotherapy also has its effects and Zia is a brave child who patiently bore this painful treatment. Four courses of chemo have been done so far. It seems Zia’s brightness has faded; one who knew him before diagnosis could easily identify the difference. He is now fearful and silent child who is not sure about his future. The disease has changed his perspective toward life at such a young age.

Nasopharyngeal cancer is a rare type of head and neck cancer. It starts in upper part of throat, behind nose, the nasopharynx.It is also called nasopharyngeal carcinoma (NPC).

Exact causes of nasopharyngeal cancer are unknown. However, NPC has been strongly linked to Epstein-Barr virus (EBV).Although everyone who had EBV would not have NPC. The risk for NPC increases with diet rich in salt-cured fish and meat. Tobacco and alcohol may also increase risk, although their link to NPC is not clear. Some scientists believe that chemicals in these things further damage the DNA in cells.

The cancer is most common in southern China and south East Asia, Other parts of Asia, North Africa, Alaska and Canada, Chinese and among immigrant groups in the U.S.

Symptoms may vary and differ in different people include Lump in neck (most common), Blurry or double vision, ear infections that recur, Face pain or numbness, headache, hearing loss, ringing in the ears, or a feeling of fullness in the ear, Difficulty in opening the mouth, nosebleeds, stuffy nose, sore throat.  etc. Such symptoms are more likely to occur with many other diseases and health conditions that are far less serious than nasopharyngeal cancer.

Imaging tests can help spot nasopharyngeal cancer or determine if it has spread. Imaging tests may includeChest X-ray ,CT scan, MRI, Ultrasound of the neck, blood tests, EBV testing, nasopharyngoscopy and biopsy.

Nasopharyngeal cancer is staged from Stage 0 (the earliest stage) to Stage IV (the most advanced stage). The lower the number, the less the cancer has spread to other parts of the body.

Treatment will depend on many things, including location and Stage of the tumor and overall health of child. Treatment may include radiation therapy, surgery, chemotherapy and palliation therapy.

About Zia, He is a student of grade five. Zia belongs to a landlord family but still son’s disease has caused financial and other issues as it is not smooth to live and travel outstation for longer periods of time. Zia has three siblings, and he was born after 9 years of prayers of his parents. One can feel his parent’s agony, seeing their beloved child fighting battle against cancer. Zia is not much hopeful with his future, his shining bright eyes do not shine like before, as they carry fear of uncertainty in them. Brave heart’s treatment is continued.  Zia is waiting for radiation after chemo with little hope he is left with.

We all pray for him. May Allah cure Zia and may he return safely to his home town soon. Aameen

 

Note: Name has been changed to protect identity

 

 

Warriors & Survivors

 Children Cancer Stories by Rukh Yusuf Blog post # 04

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.

15 years old Ali is our today’s warrior and survivor. At the age of 13 he had breathing difficulty with pain in chest. He also had complaints of low-grade fever, and his weight was decreasing gradually.

Being resident of Rawalpindi, his family got his checkup done in a large hospital, but nothing cameout. Ali was then referred to Lahore for diagnosis and treatment. After multiple tests in Lahore, lymph node cancer (Hodgkins’s Lymphoma stage ii B)was diagnosed.

With dedication of both his family and health care staff and specially courage of Ali himself, six cycles of chemotherapy were completed successfully. He got better and discharged from hospital. By grace of Almighty he rejoined his studies and resumed normal life.

After couple of years, he again had complaints of chest pain, breathing difficulty and decreased blood counts. On follow up, it was revealed that his disease had comeback. The family was devastated but doctors counseled that even relapse cases can be treated and cured after treatment. Summing up the courage, treatment started again.Warrior’s perseverance played a major role.

Four chemo cycles have been completed by now. Warrior is doing well Alhumdolillah.His father works in some one’s fields. He had his own land but had to sell for living and treatment of his brave child. Ali has four younger brothers. He understands his family setup and his responsibility as an elder brother despite his illness.He is brave one and hopeful for his future, he wants to be engineer one day and aims to support his parents in raising younger brothers.

Hodgkin’s lymphoma is 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, chest or in the groin.

Hodgkin lymphoma is caused by a change (mutation) in the DNA of a type of white blood cell called B lymphocytes, although the exact reason why this happens isn't known.The DNA gives the cells a basic set of instructions, such as when to grow and reproduce. The mutation in the DNA changes these instructions so the cells keep growing, causing them to multiply uncontrollably.

The abnormal lymphocytes usually begin to multiply in one or more lymph nodes in a particular area of the body, such as neck or groin. Cause of mutation that triggers Hodgkin lymphoma is unknown.Anumber of factors may increase risk,includingweak immune system, medication to suppress immune system or after an organ transplant, viral infections,chemotherapy or radiotherapy, obesity etc.

Hodgkin’s lymphoma is notinfectious and therefore doesnot run in families. Although the risk is increased if a first-degree relative (parent, sibling or child) had lymphoma, it's not clear if this is because of an inherited genetic fault or lifestyle factors.Hodgkin’s lymphoma can occur at any age, common in early 20s or 70s in men.

A number of investigationsi.e.biopsy blood tests, bone marrow, chest X-ray, (CT) scan,  (MRI) scan ,  (PET) scan, are needed to diagnose the stage of lymphoma."Staging" means scoring the cancer by how far it's spread.Stages of Hodgkin lymphoma are:  stage 1 – the cancer is limited to 1 group of lymph nodes, neck or groin nodes.  stage 2 – 2 or more lymph node groups are affected, either above or below the diaphragm. stage 3 – the cancer has spread to lymph node groups above and below the diaphragm.  stage 4 – the cancer has spread through the lymphatic system and is now present in organs or bone marrow.

The main treatment for HLischemotherapy alone, or chemotherapy followed by radiotherapy. In a few cases, chemotherapy may be combined with steroid medication.Surgery isn't generally used to treat the condition, except for the biopsy used to diagnose it. Overall, treatment for Hodgkin lymphoma is highly effective and most people with the condition are eventually cured. In some patients, cancer may return after treatment. A course of high dose chemotherapy may be useful for relapse cases.

We pray that Ali and all children with cancer may recover soon and return to their normal life and fulfill their dreams to be contributing member of society. Aameen.

Note: Name has been changed to protect identity