Warriors and Survivors - 66

 

Children Cancer Stories by Rukh Yusuf - Blog # 66

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.

Mostly during my work routine, I find patients for my blog but sometimes I have to look for them to decide for the upcoming week and this decision has never been easy. There are too many patients and stories all around us and every patient is worth writing about and every child and family needs support and prayers.

This suffering community segment is an opportunity for us to serve and do our best efforts, not only in medical help but also financial support and provisions.

It was my Eid duty and I saw Imranullah and his grandmother, who was feeding him milk with Naso-gastric – N/G tube. It is a normal sight in an oncology unit or any critical care unit. But I was saddened to see them both suffering no matter Eid or what, child is fighting with death.

Eid in Oncology unit is different from other normal units of hospitals. Relatively stable Children/Patients are discharged mostly in other medical or surgical units. But in Oncology department these are chronic patients who come from far off places and they have their schedule with them so they cannot be discharged to celebrate Eid. So, Eid is almost like a regular day in Oncology unit.

So apparently a regular scene on Eid duty made me sad, thinking most of the country is celebrating and Imranullah is lying in unconscious state having his feed with NG. His grandmother who hardly understands language and other things was taking care of him. His mother was away for some time for urgent necessity.

Imranullah is five years old child who was diagnosed with (leukemia) ALL two years back and was treated in this hospital for more than one and half year but during treatment his disease came back. The family left against advice and reappeared again in 2022. This time Imran was not in good condition. He presented as sick child with fits and fever. He was received in emergency in May 2022 and after emergency treatment he was shifted in oncology critical care and his work started again for current cancer stage and condition.

He is admitted since May 2022 and is diagnosed with CNS relapse, he is in such a vegetative condition to be treated further. I cannot even say that Imran is fighting with his disease as he does not seem to be fighting. He is lying motionless in his bed. The poor child is on palliation now.

The poor family is living in hospital attached inn for two months as they belong to Sargodha. They have other children too to look after at home, but they have to fight the disease of their beloved son till his last breath.

Health care staff is doing their work but only Allah can grant health and ease to this family.

Prayers for some miracle for the health and recovery of Imranullah and ease of his family.

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

Note: Names have been changed to protect identity

Warriors and Survivors - 65

 

Children Cancer Stories by Rukh Yusuf - Blog # 65

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 I met Ayan who is only five years old cute boy. He was lying in his bed with extremely flat expression. I could not understand the reason for his behavior, it was due to his pain, his sufferings since more than a year. Or his no concern attitude may be reason of his loss of interest in anything due to his long ailment.

Almost one and a half year back, Ayan started feeling pain in his right leg and this pain did not settle with any remedy or treatment. The parents who are themselves young were worried enough for their child. They took him to local District Headquarters Hospital, and from there Ayan was referred to tertiary care pediatric cancer unit for diagnosis.

Here Ayan was diagnosed as a case of Ewing’s Sarcoma and his treatment started a year ago. Innocent Ayan bore this long duration of chemotherapy and frequent hospital visits from his hometown which itself is energy draining.

Somehow, the parents and Ayan have completed seven cycles of chemotherapy which was too difficult to bear for a young age child. Then there was another trial for already devastated family; Ayan had to undergo his leg surgery. His femur had been affected and the surgeon had to operate Ayan to fix his femur. It was a major surgery and he had to bear it.

After Surgery there were more chemotherapy to be given to him. Ayan has completed three more cycles since surgery and now one can imagine why the five-year-old child looks emotionless.

Ayan is lying in bed still and emotionless. He is waiting to celebrate his childhood and happiness of this age. His leg has been affected, I hope he will still be able to live a healthy and happy life.

Ayan has one younger sister who is two years old, and his father works in factory. The family is educated but they are not so stable financially. The family belongs to surroundings of Faisalabad.

I am heartbroken to see emotionless ayan and his worried mother. I pray for the recovery of Ayan. May Allah grant him health and happiness soon. May he be able to live a healthy life.

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

Note: Names have been changed to protect identity

Warriors and Survivors -64

 

 Children Cancer Stories by Rukh Yusuf - Blog # 64

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.

 

Anaya is only three years old, too young to understand what is going on with her and how she should express her pain. She only knows her suffering and uneasiness via crying. It is painful to see her suffering with aplastic anemia. Yes, she is too small and fighting with a very big disease.

Anaya’s mother is a semiliterate housewife who does not know exactly what kind of cancer her daughter is fighting. She only understands that her youngest daughter is suffering with blood cancer.

Anaya has three elder siblings, two brothers and one sister. Her sister is student of grade six and two elder brothers are also students of grade five and four. Anaya’s father is working in some factory. The family basically belongs to Pakpattan but lives in Okara to earn livelihood.

Though there is not much distance between the two cities but coming from Okara for the treatment of their daughter is still not easy.

Let’s have a look at what exactly aplastic anemia is. Aplastic anemia is a syndrome of bone marrow failure characterized by peripheral pancytopenia and marrow hypoplasia. Although the anemia is often normocytic, mild macrocytosis can also be observed in association with stress erythropoiesis and elevated fetal hemoglobin levels.

Symptoms of aplastic anemia include Fatigue, Infections that last a long time and easy bruising or bleeding. Aplastic anemia is caused by damage to stem cells inside bone marrow, which is the sponge-like tissue within bones. Many diseases and conditions can damage the stem cells in bone marrow. As a result, the bone marrow makes fewer red blood cells, white blood cells, and platelets.

The most common cause of bone marrow damage is from immune system attacking and destroying the stem cells in bone marrow. This is a type of autoimmune illness, a disease that makes body attack itself. Other causes of aplastic anemia include some medicines, such as those used in chemotherapy, and exposure to toxins or chemicals in the environment. One can also inherit the condition, in rare cases. Treatments for aplastic anemia may include Blood and bone marrow transplants, which may cure aplastic anemia in some people. Blood transfusions. Medicines to stop immune system from destroying the stem cells in bone marrow. Medicines to help body make new blood cells and removing or staying away from toxins in environment.

Aplastic anemia can raise risk of complications such as bleeding, leukemia, or other serious blood conditions. Without treatment, aplastic anemia can lead to serious medical conditions such as an irregular heartbeat and heart failure.

Anaya got the disease three months back when she fell from bed and after this incident, she had frequent pain and problem in standing and sitting. On medical examinations and x-rays, it was revealed that her leg bones had some infections. Doctors decided for some surgery after medications. When her Complete blood count was done, her counts were too abnormal to go for the surgery. She was then referred to children’s hospital Lahore.

Here, little Anaya has been diagnosed as aplastic anemia, she is still on symptomatic treatment and observation. Her further confirmatory reports are still awaited. But it is heartbreaking to see such a young soul suffering with such a dreaded disease.

I pray for the recovery of Anaya. May Allah grant her health and happiness soon. May he be able to live a healthy life. Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

Note: Names have been changed to protect identity

Children Cancer Stories by Rukh Yusuf - Blog # 63

Children Cancer Stories by Rukh Yusuf - Blog # 63

 

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.

 

Being oncology pharmacist, I review chemotherapy of inpatients who are admitted for different reasons and are on chemotherapy protocols. Yesterday, I needed to verify some chemotherapy and I went into a room and searched the child “Moazam”.

Hearing me calling his name, He started crying in semi conscious condition. He was afraid of intrathecal injection and was thinking that I had come for his injection. Ah poor child, he had his injection same day and was frightened due to IT injection.

Moazam is only four years old cute child, he has too fair complexion to be a male child. On first glance, he looks normal, and it is sad to see him admitted in a cancer unit.

Moazam’s father was a teacher in some private school and the family belongs to Gojra. Life was fine and family was managing well in their limited resources, and they were happy until last year. Suddenly the middle son (Moazam) started having on and off fever with leg pain, gum bleeding and weakness. The condition started worsening gradually. Parents being educated enough, got their child checked up locally. It took them and the local doctors months to understand that the child might have some unusual disease, rather than simple fever and weakness.

Finally, they reached Lahore after several referrals. Here his diagnosis was initiated and after a series of tests here he was diagnosed as Philadelphia positive Acute Lymphoblastic leukemia (Ph + ALL). This type is rare and occurs in only about 3% of children with ALL.

Acute lymphoblastic leukemia (ALL), also called acute lymphocytic leukemia, is a cancer of the immature forms of white blood cells called lymphocytes. Sometimes the disease comes with genetic mutation on Philadelphia chromosome and the disease is called as Philadelphia positive ALL.

Moazam’s chemotherapy started in Feb 2022 and up till now he has been admitted several times in hospital for different complications and reasons. Since some days, he is admitted again, and he is on his chemotherapy. He has completed his Induction and is now on consolidation therapy.

Treatment is severe for a small child like Moazam, chemotherapy has its own effects on human body, which we call side effects. Sometimes, these are quite severe in some patients. So far, Moazam is doing fine with Chemo, but it is a long way to go in terms of treatment which is normally 2.5 to three years. Moazam’s journey has just started. May Allah give him and his parents courage to complete the journey smoothly and with ease. Aameen

The family have two more children, one elder daughter of 9 years age and a younger child of one year. Moazam’s father was a teacher in private school and due to so many leaves for the treatment of his beloved son, he had to quit his job. He must travel back and forth for the treatment of his son. Now he is jobless and still a long duration of treatment is ahead.

I pray for the recovery of Moazam. May Allah grant him health and happiness soon. May he be able to live a healthy life and dream for his future too.

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

Note: Names have been changed to protect identity

Warriors and Survivors -62

 

 Children Cancer Stories by Rukh Yusuf - Blog # 62

 

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.

 

Seeing a young child suffering from cancer is very difficult, in terms of his/her pain bearing capacity and inability to communicate his/her feelings. But seeing a grown-up child fighting cancer battle and losing this hard battle is even worse.

I am very sad since I met Habib ur Rehman and his family. Habib ur Rehman is 14 years old male child suffering with Ewing Sarcoma. One should feel happy and energetic after meeting new generation of this age, but I am down since I have seen dim light in his eyes.

Habib ur Rehman is from Gujranwala and he has two younger brothers and one sister. His father does his own small business of oils. The business is too small to meet their expense somehow.

In April 2021 Habib ur Rehman was presented in oncology OPD with history of fever, body aches and generalized weakness. He was having these symptoms since many months. Parents finally brought their child for check up in tertiary care after initial treatment from local physicians. Here Habib was diagnosed with Ewing sarcoma after a series of investigations and tests. His treatment was started, and the poor child had to hold his studies and come for follow up and treatment every week.

Since April 2021, he has been on treatment and the parents and Habib had hopes that he would recover soon. They continued coming to hospital regularly for treatment. Habib had completed his six chemotherapy cycles and he was improving gradually.

Suddenly he developed high grade fever and had to be admitted in the hospital. During the investigations, it occurred that he has developed left sided empyema. Habib remained admitted for some time and his treatment continued. His fever came down and apparently he was improving.

But to the surprise of his family and doctors his cancer was coming back. Rather his disease is now metastatic Ewings sarcoma, and he has developed Mets in the lung.

A very painful situation for Habib and his family. I am sad since I met him, in his age children plan for their future and do amazing things for themselves and want to conquer the world. But Habib was lying sadly, thinking about his future. I could not meet his mother, but if I had to meet her, I believe I would not be able to face the lady whose grown-up child is on palliation and has no hope for his future life.

It is true that when Allah gives a trial, He also grants the courage to bear the pain. May Allah give Habib and his family fortitude to bear this suffering and May Allah ease their pain.

I pray for some miracle for the recovery of Habib ur Rehman. May Allah grant him health and happiness soon. May he be able to live a healthy life and dream for his future too.

 

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

Note: Names have been changed to protect identity

 

 

Warriors and Survivors -61

 

 Children Cancer Stories by Rukh Yusuf - Blog # 61

 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.

I have written about Osteosarcoma and up till now, all children discussed were females. I wondered if it was more prevalent in females here in Pakistan. Today’s blog is also about a case of Osteosarcoma in young female.

Aliza is 10 years old girl from Kasur. She is student of grade four, having osteosarcoma treatment from Children’s hospital and her five chemotherapy cycles have been completed. She is so innocent and silent that it is difficult to hear her speaking. Her father is a laborer, and she has two siblings. It is heartbreaking to see her suffering and I also remembered two other girls with Osteosarcoma, Mishal and Meerab.  They used to be in a very painful condition, but Aliza is Alhumdolillah fine till now, but for a lean girl it is difficult to bear such a bad disease.

Let’s a look again what Osteosarcoma is for better understanding about what Aliza has been going through.

Osteosarcoma, the most common malignant bone tumor, is a deadly form of musculoskeletal cancer that most commonly causes patients to die of pulmonary metastatic disease.  It is an ancient disease that is still incompletely understood.

Osteosarcoma occurs most often in children, adolescents, and young adults. Approximately 800 new cases of osteosarcoma are reported each year in the U.S. Of these cases, about 400 are in children and teens. It happens slightly more often in males than in females.

Osteosarcoma most commonly happens in the long bones around the knee. Other sites for osteosarcoma include the upper leg, or thighbone, the lower leg, upper arm bone, or any bone in the body, including those in the pelvis, shoulder, and skull.

Osteosarcoma may grow into nearby tissues, such as tendons or muscles. It may also spread, or metastasize, through the bloodstream to other organs or bones in the body.

The exact cause of osteosarcoma is not known, but it is believed to be due to DNA mutations inside bone cells—either inherited or acquired after birth.

Suggested risk factors for osteosarcoma include teenage growth spurts, being tall for a specific age. Previous treatment with radiation for another cancer, especially at a young age or with high doses of radiation. Presence of certain benign (noncancerous) bone diseases.

The most common symptoms of osteosarcoma may include pain in the affected bone, swelling around the affected site, increased pain with activity or lifting, limping, decreased movement of the affected limb, etc.

Treatment for osteosarcoma can be determined by healthcare provider based on patient’s age, overall health, and medical history. Type, stage (extent), and location of the osteosarcoma. Patients’ tolerance for specific medicines, procedures, or therapies. Expectations for the course of the disease

Treatment may include Surgery (for example, biopsy, resections, bone/skin grafts, limb salvage procedures, reconstructions, or amputation). Chemotherapy. Radiation therapy. Rehabilitation, including physical and occupational therapy, and psychosocial adaption. Prosthesis fitting and training. Supportive care for the side effects of treatment. Antibiotics to prevent and treat infections. Most important ism Continued follow-up care to determine response to treatment, find recurrent disease, and manage the side effects of treatment 

The prognosis for osteosarcoma greatly depends on many factors including the extent of the disease. The size and location of the tumor. The pathologic grade of the cancer. The tumor's response to therapy. Age and overall health. Tolerance of specific medicines, procedures, or therapies.

A person who was treated for bone cancer as a child or adolescent may develop effects months or years after treatment ends. These effects are called late effects. The kind of late effects one develops depends on the location of the tumor and the way it was treated.

As with any cancer, prognosis and long-term survival can vary greatly from person to person. Every individual is unique, and treatment and prognosis are structured around your needs. Prompt medical attention and aggressive therapy are important for the best prognosis. Continuous follow-up care is essential for a person diagnosed with osteosarcoma. Side effects of radiation and chemotherapy, including second cancers, can happen in survivors. New methods are continually being discovered to improve treatment and decrease side effects.

We pray for innocent Aliza and her family. May she recover soon smoothly. May her disease never come back. Aameen.

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

Note: Names have been changed to protect identity

 

 

Warriors and Survivors - 60

 

Children Cancer Stories by Rukh Yusuf - Blog # 60

"Palliative care"

 

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.

Pediatric palliative care is a special type of supportive care for children facing a serious illness like end stage or non-treatable cancer. Palliative care focuses on comfort and quality of life. The palliative care team works with the primary medical team to personalize care for the child and his/her family.

As per WHO definition, Palliative care is the active total care of the Child’s body, mind, and spirit, and also involves giving support to family. It ideally begins when illness is diagnosed and continues regardless of whether or not a child receives a treatment for the disease.

Palliative care is crucial part of integrated, people-centered health services. Relieving serious health related sufferings-be it physical, psychological, social, or spiritual.

The main goals of palliative care for children with cancer and their families are to:

1)      Manage pain and other physical symptoms such as nausea, loss of appetite, fatigue, and troubled sleeping.

2)      Help with psychological symptoms such as anxiety & depression and other emotional and social support to patients and family.

3)      Match treatment and care choices with patients and family goals.

4)      Provide coordination of care and communication among different healthcare professionals.

5)      Connect families to community-based resources and services.

There are international standards and protocols for breaking bad news to families about the condition of the disease of their children. Breaking a bad news needs courage and empathy. Palliative care team comprised of multi professional team that provide holistic care to the children.

 

It is estimated that globally only 14% of patients who need palliative care receive it and 98% of children who need palliative care live in low- and middle-income countries, where very few palliative care services available.

“Pediatric palliative care is a right, not privilege”.

I met Omer a week ago, he is a 7 year old boy with metastatic Neuroblastoma from Faisalabad.

I was too sad to know that he is on palliative care at such a young age. He was diagnosed with Neuroblastoma two years back. His treatment was started in children’s hospital, and he was getting better initially. Later his disease started spreading in lungs and liver. He was admitted again, and the panel decided that Omer should be on palliative care, as his disease is not treatable any more.

Omer does not speak or respond now; he does not even move. It is his mother’s courage who is managing him alone in such a critical situation. The lady is maid somewhere and Omer’s father is laborer in Faisalabad. They have two other children. Father is taking care of other two in Faisalabad and mother is trying her best to keep Omer alive.

All pediatric cancer patients need extra care and best treatment but those on palliative care are in dire need of excellent treatment and empathy. They are the ones who know that they will die sooner or later. Their families know that their children will be no more in some time, and I believe this is horrific thought for any parent.

In developing or lower income country like Pakistan where treatable disease hardly get excellent care and treatment, palliative care is still in initial stages and there is lot of work to be done on improving palliative care services across the country.

I shall discuss about palliative care and its team members in details in my later blogs.

We pray for Omer and his family. May the family bear the loss with courage and fortitude. Aameen

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

 

Note: Names have been changed to protect identity