Warriors and Survivors

Children Cancer Stories by Rukh Yusuf - Blog # 11

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.

‘Life is not bed of roses’ most of us come across this quote in school life, but at that time we hardly understand its true meaning.  Later in our practical life we truly understand it’s meaning.  Still very few fighters get to know what it means in their early age. My today’s Virago is 13 years old Mehwish who understands life since her dream age.

On a regular day at school, Mehwish felt pain in her leg. After few days she had continuous pain in both legs and knees. Local physician said she is stressed due to studies when he could not find a reason for her suffering. Soon, she had so severe pain that she was unable to sleep. The family took her to Lahore. She was diagnosed as a case of Ewing sarcoma of left leg in a tertiary care hospital in Lahore after series of diagnostics tests.

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 as well.  

Soon, her treatment was started. She had to go through six chemotherapy cycles to treat her cancer. She completed chemotherapy bravely, it was not easy to bear chemo and its side effects. Being a big girl, losing hair was not bearable but she had no other choice.

Even after six chemo cycles her left knee was not getting much better. She was advised knee transplant when she was evaluated after chemo. It was a difficult decision for her family. Knee transplant in such a young age is a hard decision to make, specially when there is no surety of hundred percent cure, but they had to do it for their daughter.

Mehwish comes from a middle-class family of Sargodha, She has two brothers and two sisters. Her father was in police but passed away couple of years ago. Her elder sisters and brothers are studying and doing great. Mehwish was also student of ninth grade when she was diagnosed with cancer. Her education is halted since then, but she is not hopeless about her studies and career. She says she will join police and serve her country like her father. She likes to get dressed up and wear make-up.

Her family has hardly managed cost of her implant; they are under debt now. Coming from outstation for treatment of a chronic disease is heavy financial burden as it needs patience and persistence too. Even then the family is happy for Mehwish’s successful surgery.

Her mother says that no matter what, we have to have hope. Hope for the future, hope to keep fighting even when we want to give up or when my daughter has had enough.  When Mehwish was too tired to fight, I fought for her.  When she broke down (which was only once during the whole treatment) I wanted to fight even harder for her.  I watched her go through something that no child should EVER go through.  

Her knee transplant was done successfully, and she was advised rest. She spent rest time reading books and dreaming for a disease-free bright future. These days, she is again on chemotherapy cycles. But Mehwish is determined to continue studies as soon as she starts walking on her own. It’s heartening to see her struggling with so many dreams. She wants to be a brave police officer.

We all pray for her complete recovery, ease for her family and for her dream to join police come true. Aameen

 

 

Note: names have been changed to protect identity.

Warriors and Survivors

Children Cancer Stories by Rukh Yusuf - Blog # 10

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.

Couple of days ago during my routine work at hospital, I met a very cute healthy looking five years old Asad, who seemed to be angry in first impression but later I found a lovely friendly child who loved tattoos and candies.

When he was four, he put a bead in his ear somehow, He had to go to OR to remove the bead. He was kept NPO (food was not allowed) since 12 midnight to remove bead under anesthesia. Asad fainted at once when he was having juices and eatables after bead removal. He was treated in emergency and got better for the time. After few months he fainted again and along with treatment he needed blood transfusion this time.

Asad’s mother took him to civil hospital for checkup, after many diagnostics tests, Asad was diagnosed as a case of EVANS SYNDROME.

Evans syndrome is an autoimmune disorder in which antibodies attack red blood cells, which deliver oxygen to body tissues, platelets, and/or neutrophils. The disorder resembles a combination of autoimmune hemolytic anemia , thrombocytopenia, and neutropenia. These may occur simultaneously or one may follow the other.

The current cause for Evans syndrome is unknown. There is no known genetic cause of Evans syndrome, and occurrences in families are rare. It is considered a chronic disease, with periods of remission and exacerbation. Thrombocytopenia recurs in about 60 percent of patients, while autoimmune hemolytic anemia (AIHA) recurs in about 30 percent.

The symptoms of Evans syndrome may be similar in nature to leukemia and lymphoma; these illnesses must be ruled out before a diagnosis is made. If a child has a low red blood cell (RBC) count, symptoms may include: jaundice, dark brown urine, pale Skin, weakness, fatigue and shortness of breath. If a child has a low platelet count, symptoms may include: increased bruising, petechia – tiny red dots under the skin that are a result of very small bleeds into the skin and increased bleeding symptoms, such as a bloody nose or heavy menses.  If a child has a low neutrophil count, symptoms may include: fevers, mouth sores, increased bacterial infections.

Diagnosis may involve Complete blood count, Coombs test, Reticulocyte count. Other tests may include bone marrow aspiration and biopsy and flow cytometry.

The first-line treatments for Evans syndrome are corticosteroid, such as prednisone, and intravenous immunoglobulin, which help to control acute episodes. Most children respond to this treatment, but relapses frequently occur. Other treatments include: immunosuppressive drugs, such as 6-mercaptopurine and Mycophenolate mofetil, removal of the spleen to improve blood counts, which may be short-lived , Rituximab, a monoclonal antibody or stem cell transplant, for severe, difficult-to-treat cases and the best chance for a long-term cure.  

For children with Evans syndrome, recurrences of thrombocytopenia, anemia, and also neutropenia are common. It can sometimes remain well controlled on long-term immunosuppressant therapy and occasionally patients have spontaneous complete resolution of the condition.

Asad is under treatment and Alhumdolillah is responding well, he had jaundice some time back and had to be admitted for few days for treatment, He comes for follow up but Asad do not like to stay in hospital.

He belongs to lower middle class family from Gujranwala, He has a younger sister, his elder sister had died at age of six due to electric shock.  Asad’s mother is alone breadwinner for  the family, Brave lady is not only managing her son’s treatment all the way coming from outstation but is also a working lady and taking care of her two young lads.

Lack of health care facilities is a grave issue that affects patients and their treatment. Patients and their families have to reach to big cities and hospitals to get treatment of their loved ones that adds to their suffering. It becomes very difficult for a family to travel out stations for the treatment of the chronic diseases of their family members, it is not only a financial burden but also a painstaking period each time when they have to approach health care facility. I shall write on this issue in coming blogs as well.

We pray for the eventless recovery of Asad and ease for her mother. Aameen.

 

Note: names have been changed to protect identity.

 

Warriors and Survivors - Children Cancer Stories by Rukh Yusuf - Blog #09

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.

Strength is not related to age or maturity, it is s Allah’s blessing which He bestows on whosoever He wants.  Today I met seven years old Sadia, a symbol of happiness, confidence, and strength. Sadia is a young cute child, but she knows her disease in detail. When she was five years old, she had abdominal pain with intermittent fever. Mother first took it as mild fever then got her checked up. Nothing ruled out. She had few episodes of fever and pain again. Mother took her to hospital, but her symptoms did not settle as earlier.

Her pain got severe and later she had abdominal swelling. She was taken to hospital where she was admitted in emergency and investigations and treatment started. Tumor ruled out after thorough examination and series of tests. Further investigations revealed Sadia was suffering from WILMS Tumor.  Doctor said it was an emergency and she should be hospitalized. Her biopsy was done, and chemotherapy started later.

Wilms tumor (also called nephroblastoma) is a type of childhood cancer that starts in the kidneys. It is the most common type of kidney cancer in children. About 9 of 10 kidney cancers in children are Wilms tumors. Nearly all cases of Wilms tumor are diagnosed before the age of 10, with two-thirds being found before age 5.

Wilms tumor is often first noticed because of abdominal swelling or a mass in the kidney that can be felt upon physical examination. Some affected children have abdominal pain, fever, a low number of red blood cells, hematuria, or high blood pressure.

About 5 to 10 percent of patients develop multiple tumors in one or both kidneys. Wilms tumor may spread from the kidneys to other body parts, sometimes kidneys are not involved and tumor occur in the genital tract, bladder, abdomen, chest, or lower back. It is unclear how Wilms tumor develops in these tissues.

With proper treatment, children with Wilms tumor have a 90 percent survival rate. However, the risk that the cancer will recur is between 15 and 50 percent, depending on traits of the original tumor. Tumors usually recur in the first 2 years following treatment and develop in the kidneys or other tissues, such as the lungs. Individuals who have had Wilms tumor may experience related health problems or late effects of their treatment in adulthood, such as decreased kidney function, heart disease, and development of additional cancers.

The incidence of Wilms tumor varies among populations, with African Americans having a higher-than-average risk of developing this cancer and Asians having a lower-than-average risk. Wilms tumor rarely develops in adults; only about 300 such cases have been described.

Changes in any of several genes are involved in the formation of Wilms tumor. The tumors are thought to arise from immature kidney tissue that never developed properly. These immature tissues are known as nephrogenic rests. Most cases of Wilms tumor are not caused by inherited genetic factors and do not cluster in families. Approximately 90 percent of these cancers are due to somatic mutations, which means that the mutations are acquired during a person's lifetime and are present only in the tumor cells.

Chemotherapy was started to treat Sadia’s tumor, and she and her mother bear chemotherapy and its side effects patiently hoping for a cure after it. After six chemotherapy cycles, her nephrectomy (kidney removal) was planned. Brave little flower went through this surgery too. It is heartening to see her when she shows her surgery site lifting her shirt and saying that her kidney has been removed in her stammering voice.

Sadia belongs to a middle-class family from Lahore. She has four sisters and one brother, she is youngest flower. Her father sells milk, but the family seems quite contented. Her elder sisters are very good at studies, and they have secured good grades in College. Not only Sadia is contented about her condition but also her mother is grateful to Allah that her child has been managed timely and she is recovering now.  With stammering words, she said that her mother wants her to be doctor but she wants to be a teacher. She wants to rejoin her school as early as possible.

Let’s pray for her health and that her disease never recur and she follow her dream to be a teacher. Aameen.

 

Note: names have been changed to protect identity.

Warriors and Survivors

Children Cancer Stories by Rukh Yusuf - Blog #08

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.

In continuation to previous blog about our kind donors and philanthropists, there are some people who keep supporting oncology patients, but the list of philanthropists will be incomplete without mentioning our “Baji Farida” who has dedicated herself for these withering flowers. She has been serving these pure souls for more than eleven years. Sitting among these patients in oncology ward she is committed to bringing ease for the affected families. She is performing many wonderful jobs simultaneously.  She supplies cooked meals which she cooks herself daily to provide fresh, healthy, and hygienic food to patients. Such a passion is seen rarely. Baji also provides medicines that can’t be purchased regularly and manages to search and distribute as per need. She has also set up a play area for these kids, which has a collection of many interesting toys and games for children’s attraction. Children can play around and enjoy toys and games and can also read story books.

Moreover, in order to entertain and keep the children active, she manages to celebrate special days with kids like Independence day, Cancer day, and Eids, prepares and distributes Eid gifts to patients on every Eid. There are several other things she is managing on her own and with the help of other donors. Children love her and like to play in playing area, they also love to talk with their Baji. I shall continue to take up details of her services and her dedication to the cause in later blog.

Our today’s warrior is 12 years old Maheen. Around a year ago, Maheen got slight fever that soon settled with medicines but she also had pain in arm which was not relieved by any means. On checkup, a boil was revealed on her arm. The boil got better with treatment.

After some time, she had cough with difficulty in breathing. Upon examination, pulmonary edema was ruled out. After further investigations and biopsy, “Metastatic Ewing sarcoma” was diagnosed and she was sent to Lahore for treatment. (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.

Maheen is the only sister of three younger brothers. Her father is a driver by profession and this simple family belongs to Jhang. She loves to chat with Baji and plays with dolls and talks like a grown-up girl. Her six chemotherapy cycles have been completed so far, now she is waiting for her turn for radiation to treat her metastatic disease.

Bearing chemotherapy and its side effects is not easy for Maheen. She does not like chemotherapy but is coping bravely with it. She is not able to eat anything due to nausea and has become quite lean, but still she understands her treatment and is hopeful about cure.

Maheen always talks about her home and family, as she misses her brothers and home. Her only activity is playing with dolls or watching cartoons. Her bright eyes have hope for life, hope to follow her dreams. She wants to be a doctor and help patients.

Let’s pray that she is able to defeat her metastatic disease and follow her dream to be a doctor. Aameen.

 

Note: names have been changed to protect identity.