Warriors and Survivors - 29

Children Cancer Stories by Rukh Yusuf - Blog # 29

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.

Yesterday I met a seven-year-old young girl sitting in complete silence, with her head down. Her head was covered with scarf, and she was looking too sad. Unconsciously I kept an eye on her, she hardly responded to anyone, even to her mother.  I tried to break the silence and initiate talk with her, but she did not reply and kept her head down. Her mother said that she was an active and lively child otherwise.

Zainab is seven years old child, a student of class two. She is resident of interior Lahore city and has three siblings. Her father works on daily wages, and he is making enough to educate his children.

Few months ago, Zainab developed a pea sized macule near right ear that was painful. A local doctor drained it and gave antibiotics. But it did not heal, got enlarged and ulcerated later. Parents took her to Mayo hospital, Doctors there did initial investigation and sent her to Pediatric oncology unit for lymphoma workup.

In oncology unit of pediatric hospital, she was diagnosed as a case of ‘high risk Anaplastic large cell lymphoma’. Zainab’s difficult journey started when her treatment and chemotherapy began few months ago. Her mother said, Zainab didn’t cry when she was told the news as at that time, she didn’t know what was wrong and what could be the future with this disease.

She bravely went through chemotherapy and never cried out of pain or fear so far. But she is silent, does not complain either.

Her mother says, Zainab used to be a brilliant and talkative child who loved to play with her friends and dolls. She was a very good and favorite student of her teachers. But due to ongoing treatment her studies are on hold, and she had lost interest in playing too.

“Zainab has got too many dolls, but she does not play with her toys now. She remains quiet and does not show interest in anything, a complete change in behavior for her due to her ailment. Her mother said. “When people talked about sick children, I always expected a child would be bedridden every day, but it’s not like that. The symptoms are so bad some days that Zainab is bedridden, whereas on other days, she is like any other normal 07 year old child.  Disease has changed her altogether and it is more painful that she is suffering in both ways”, She told.

Zainab has completed her first chemotherapy cycle and is receiving the second one. She is lucky enough so far to get all the necessary medicines easily from hospital and the hospital is in their easy access that make it convenient for her family to reach for multiple visits.  

Being high risk cancer patient, Zainab is on high dose chemotherapy and this treatment usually has its adverse effects too. Poor child is bearing it silently so far.  No one can imagine the depth of her pain and sorrow of her parents.

It is just the start of her painful journey. We pray for Zainab’s strength to bear the treatment and prayers for her parents energy and morale. May Zainab complete her treatment and recover soon. May she be lively again and enjoy her childhood once again. Aameen

 

 

Note: Names have been changed to protect identity

 

Warriors and Survivors -28

Children Cancer Stories by Rukh Yusuf - Blog # 28

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.

 

It’s heart wrenching when some one’s only son is diagnosed with a horrible disease like cancer, and at such a tender age. Wahaj is only four and half years old and the poor soul is having cancer. He is the only son of his parents and has two sisters. He belongs to middle class family of Sialkot. Today’s story is mostly described by his mother as Wahaj is too young to express his feelings.

 

Wahaj started having constipation with abdominal distention and fever few months back. Upon check up and subsequent investigations, Wahaj was diagnosed with Burkitts Lymphoma, a very aggressive cancer, at the age of four in April 2021.

 

Her mother says, at that point in time, within seconds, our life shattered and fell apart.  No one can ever prepare you for the pain and total devastation when you are told: “I’m really sorry but your son has cancer”.

She said, ‘I fell to the floor screaming whilst my husband stood listening to our consultant in total shock with tears’. Since then our cancer journey started as we were admitted to oncology Ward at Children’s hospital, for the proper diagnosis and start of his very intensive chemotherapy. ‘The emotions we pass through are so very hard to describe and we shed constant tears’.

In the ward,  we found our strength with support from the other inspirational families and their brave children, and also the incredible staff helping us.  She said, ‘we could never have prepared ourselves for how ill our precious little boy was to become before getting better’. The temperatures, the hair loss, loss of control of his bladder and bowels, his facial palsy, the sickness, infections and so much more. The mucositis he suffered with was horrific, he had ulcers all over his mouth and down throughout his body. He couldn’t talk, couldn’t eat, couldn’t drink, couldn’t open his mouth, couldn’t move and he must have been in terrible pain and felt so ill. It was heart-breaking, and we were helpless. He was hooked up to so many things to help him through alongside his chemotherapy, anti-sickness, high dose IV morphine, high dose IV paracetamol, IV antibiotics.

 

Wahaj’s two chemotherapy cycles completed, he was sent home and asked to appear before start of next cycle. He went through further chemotherapy cycles with similar experience, and no doubt it was not easy not only for Wahaj but for all of them.

His mother said, ‘I don’t think Wahaj fully understands what he has been through as he is still so young and was diagnosed at the age of three years. We have a box of things dedicated to his journey and one day when he is old enough, we will show Wahaj and tell him his story. Every day we tell him how brave he is, he is our superhero and that he is capable of achieving anything in life.

Wahaj is so loving, never stops smiling and is so full of fun and energy. At such an early age, he has learned so many important lessons about life.

His new chemo cycle has started and now he enjoys going to hospital to see everyone who made him better and his ward friends. The hospital is a second home and his safe place but still sometimes when he is in pain, he asks to go home to meet his father.

While the world continues to battle the pandemic, Wahaj and family are feeling very fortunate that they are all going to home and staying safe after completing another cycle of chemotherapy. His treatment continues and his mother is hopeful and says, “We are looking forward to the brighter times ahead of us and creating lot more memories with our son, our very own real life superhero”.

 

We pray for the ease and complete recovery of Wahaj. Aameen

Warriors and Survivors - 27

 Children Cancer Stories by Rukh Yusuf - Blog # 27

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.

 

Lately, I have realized that among our warriors and survivors, many children who used to cry out of fear or pain, had mostly become silent. Their suffering made them silent, they are mostly silently sad. I believe they have become so used to bearing pain that they hardly cry anymore.  So I was surprised and worried today to see a 14 year old girl crying so loudly. She was crying out of pain. I asked why she was weeping like younger child? She told while crying that she wanted to go home and meet her dad.

 

I asked her that her chemo is done and she may be discharged within a day or two, but she did not stop crying and on further asking she told that she is having body pain. She was constantly weeping. I felt helpless as I could not cheer her up.

 

Mishaal is grade nine student and she was healthy until this Ramadan when she started feeling pain in foot and legs, soon it was difficult for her to walk.

She was put on multivitamins and supplements and physician recommended to improve diet and prescribe calcium supplements but nothing worked and her pain did not get better.

 

Mishaal was taken to tertiary care adult hospital in Lahore where after number of diagnostic tests she was diagnosed as case of Osteosarcoma. Later she was referred to pediatric hospital for treatment.  There, it was diagnosed that her disease was spreading i.e. she had malignant Osteosarcoma.  

 

She belongs to an educated family of Lahore, her father has a good business and other siblings are students. She is the eldest among all. Other siblings are worried and afraid of  her disease.

 

Her treatment started in September and she had completed her one cycle and second chemotherapy cycle is going on.

 

Her mother told that Mishaal is very sensitive child, she is even worried for other children in unit. She feels their pain and concerned about other children. As per her mother it was a terrible news of cancer diagnosis of their beloved daughter.

 

Her mother said, “ I was numb, scared and wanted to wake up from this nightmare but it was only beginning”.  Her mother  had to stay strong for Mishaal as she didn’t fully understand what was happening to her. She said, ‘I want to cry loudly but I have to stay strong for my daughter’.

Treatment is very difficult for Mishaal’s weak body. During the first protocol she was constantly spiking temperatures and pain, so she had to be admitted to hospital for a minimum of 48 hours. These 48 hours often quickly turned into a week-long stay and  Mishaal was not ready to stay in hospital as along with her condition she took stress of other children’s diseases.

Mishaal’s treatment consists of 6 months of intense chemotherapy and then 12 months of ‘maintenance' treatment. She is too weak to bear this intense therapy and too sensitive for such immense suffering of her and other children’s around.

That is why her parents have not informed her about the details of her disease, but it will be impossible to hide her disease with her as she is grown up and educated child.

The situation for her, for doctors and for her family is too difficult to handle. Mishaal needs lots and lots of prayers for her ease and recovery, it’s painful for her even to lie down.

I still have her crying picture in my mind. May Allah ease her and grant permanent cure to her. Aameen

 

Warriors and Survivors - 26

Children Cancer Stories by Rukh Yusuf - Blog # 26

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.

 

Every child is unique in their own way, not only in appearance but also physically, emotionally, socially, and intellectually. Every child’s needs are different but all children need to be cared for, and it is the same globally. They are young innocent buds, and they should be looked after delicately.

 

Children are liked and loved by all generally due to their innocence and purity and its common that we just stop by them to talk or to play with them inescapably. I meet many children in routine, sometimes I want to talk to them and sometimes it’s hard to even look at them because of their suffering and illness.

 

Yesterday, I stopped by Yusra and started talking to her just by reflex. She is seven years old healthy-looking child with angelic smiling face. She looks cute even without hairs which she lost due to her treatment.  I started talking to her and her mother. She has shining intelligent eyes and very friendly nature. She is only daughter of her parents and has two male siblings; she is youngest one, several reasons to be an apple of her parent’s and every one’s eyes.

But apart from so many reasons to be unique, no one knows what the future holds for them, patience, gratitude or both.

 

She is known case of Pre B-ALL and resident of Sargodha. Her father was working in beverage Industry until start of her treatment. He lost his job because he had to take leaves frequently to travel to Lahore for the chemotherapy of his only blessing.

Yusra is under treatment for her cancer for three months. But to her bad luck, her treatment had to be stopped due to her fever. It ruled out after diagnostic tests that it was her fungal pneumonia that was the cause of her chronic fever.

She has been on Injection ‘amphotericin’ for fungal treatment for almost two months and the drug is not available freely being not registered since long.

“A very grave situation when your child’s cure is not available or hardly available in market.”

In Pakistan, among antifungals, only few options are registered and available as compared to other countries.

Among oral antifungals, only Fluconazole and Voriconazole are available and second one is hard to find these days in market.

Among parenteral or Intravenous antifungals, only injection Fluconazole is available, but it treats only limited fungal infections, including candidiasis and cryptococcal infections.

Injection ‘Amphotericin’ is broad spectrum antifungal, and it was registered and was freely available in Pakistan till 2015. Later it was discontinued due to some reason, since then patients are suffering.

Last year, some company realized the issue and managed to register the product and somehow manufactured one batch to facilitate the patients, patients were facilitated through donation by our philanthropist for few months but eventually the stock was consumed. Now next batch is awaited, and manufacturer has some serious reasons for the delay. 

Antifungals from “Echinocandin family” i.e Caspofungin, Micafungin and Anidulafungin have never been introduced and not registered here in Pakistan yet. 

About Yusra, she is still on antifungal treatment, her parents are trying to find her medicine from market on daily basis, but injection is hard to find and if available it costs too much to buy. When medicine is not there in market, hospital administration and philanthropists too cannot do anything. 

Children are our future, there must be efforts to save our precious future by all means. Medication and treatment facilities are among the basic necessities. This necessity must be available to all equally.

All necessary life saving medicines should be registered and made available freely for smooth treatment of every patient and children’s medicines must never be short or unavailable.

 

 

We all pray for recovery of Yusra and ease for her family.

 

 

 

 

 

 

 

 

 

 

 

 

 

Warriors and Survivors - 25

 

Children Cancer Stories by Rukh Yusuf - Blog # 25

 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 was passing through corridor during my routine working in ward today, when I found a 6- or 7-years old boy sitting on floor in a corner of the corridor. I was surprised to see him sitting alone on the floor with his head down. Being in hurry I could not ask him about who he was and why was he sitting like this?

On my way back, he was still sitting in the same position. I went to him and asked him, why he was sitting like this and where his mother was, but instead of replying he turned his face on the other side and kept sitting like that.

I again tried, offered him chocolate and juice, this time he said that he was not hungry without looking at me. He was really angry. Meanwhile his mother approached him and told me that he was admitted here. She told me that he was angry because he did not want to stay here and wished to meet his father.

As per his mother, Shahzaib is seven years old cute but stubborn child. He is student of grade two. One morning, his mother saw a lump near his neck, and she found it moving on touch.

She got worried and decided to go for a checkup when Shahzaib would be back from school, Shahzaib had no fever and no other complaints. On checkup Ultrasound was done, and biopsy was planned. Few more diagnostics tests revealed that Shahzaib was suffering from Hodgkins Lymphoma.

It was a tragic news for the family. His mother says, “I’ll never forget the day we took him to that hospital appointment. We arrived at the hospital at 8 am and Shahzaib was taken to operation room. When cancer was diagnosed, and doctor declared that my son had cancer, it was the scariest I had ever been in my life. I came so close to losing my son, I was terrified”.

Shahzaib’s family was counseled, and treatment started. His first chemo cycle would be completed tomorrow.

 

His mother is worried, and tears fall from her eyes when she speaks but she has some relief seeing her son fighting. She says, “my boy is superman, himself he is just the strongest, bravest little boy who always has a smile for everyone, and he is a true warrior”.

Shahzaib has four siblings, two sisters and two brothers. Youngest one is three years old and eldest one is fifteen years old. His father is laborer. All siblings are school students. It is not easy for any family to handle a child with disease and that also such a horrible one.

Though his mother and father are trying to manage their child’s disease, but they are afraid and they still harbor so many fears that how this horrid disease would be cured, as with each passing day, Shahzaib does not want to stay in hospital and misses home. Sometimes it becomes impossible to relax him and make him agree for treatment. He is headstrong and hard to handle many times.

Today His mother had to call his father to handle him and prepare him for chemo. She has other children at home to take care including a three-year-old one. She has too many questions and fears in mind.

Shahzaib is doing fine till now. We all pray for his speedy recovery and ease of his parents and whole family.

 

Note:

Name has been changed to protect identity.