Eulogy To My Daughter, Zainab
With a heavy heart and tear filled eyes, I summon the courage to write this Eulogy to my brave and courageous daughter, Zainab Aliyu, who lost the battle to Hodgkin Lymphoma (a cancer that affects the blood) on the 7th of May, 2015.
Zainab was diagnosed with Cancer when she was 20 years old.
Her ill health started in 2003, between the ages of nine and 10 years. I remember she first broke out in a Cough accompanied by Catarrh and high fever which ended up to be Tuberculosis infection. She observed the free nine months TB treatment at Dantsoho Memorial Hospital, Kaduna, and at the end of the treatment, she was certified TB free and advised to returned to the Hospital for any complaint.
Few months after, she came up with lymph nodes which her doctor thought to be residue of the TB treatment. But when it didn’t go, he referred her to Hematology Unit of Ahmadu Bello University Teaching Hospital (ABUTH), Shika, where some lymph nodes were extracted and tested, and showed ‘Non Malignant but Positive to Brucellosis (an infection spread from animals to people, mostly by unpasteurized dairy products). The doctors were not convinced with the results though.
About a year after, she started experiencing ear pain and like the lymph nodes, all checks at the National Ear Care Centre, Kaduna, proved nothing bad but she kept having occurrence of wounds and inflammations despite medications.This affected her studies , as on some days, she missed school, while on other days, she missed morning classes for dressing of the ear. That was how she schooled on and off at Essence International School, Kaduna.
In 2008, when more lymph nodes appeared, she was taken to the Nasir Institute in Egypt and after all tests, she was given a clean bill of health. We were so happy that at least she was free of Cancer. But not up to a week after she returned to Nigeria, lymph nodes came out on both sides of her neck and she was sponsored back to the American hospital in Dubai. There, the Doctor vowed to prove Nigerian and Egyptian doctors wrong about her condition but when the results came out negative, he was speechless. He then advised that she should be examined from time to time as not all lymph nodes are a good sign.
By middle of 2012, some of the lymph nodes became so obvious that she used veils to cover them whenever she’s going out. Again, she was taken to Aminu Kano Teaching Hospital for checkup. The doctor, using her test results from ABUTH, advised that the ear problem should be resolved as it could be the cause of the lymph nodes.
In late 2012 when the ear pain persisted, a surgery was performed at Ear Care Centre, Kaduna, where part of her lap was removed to mend an opening in the Ear. All went well and she went back to school only to be brought back home due to excessive leg pain and body numbness. She was then taken back to her Ear Doctor, who advised she takes a Physician’s Assessment.
On his advice, I took her to a renowned Private Hospital in Kaduna, where again, lab tests showed Brucellosis while Chest X-ray showed multiple Lymph nodes. She was placed on three weeks medication for Brucellosis and Cataflam for pain, but the more Cataflam she took, the more pain and sleepless nights she experienced. The condition lingered till early 2013 when she was in her third year at Ahmadu Bello University, Zaria.
A kind-hearted person again sponsored her to Iranian Hospital, Dubai. There again, all tests proved that the Lymph nodes were Non Malignant, although the Doctor suspected Tuberculosis of the Spinal Cord, but lab tests proved negative. As there was no precise diagnosis, she returned to Nigeria with a deteriorated condition. At this point, we knew Zainab’s health was at stake as all symptoms of being seriously ill had started prevailing – her legs got swollen, then lethargy, Night breathlessness, Chest pain, Headache, Back Pain, Fatigue, Vomiting, Lack of appetite and weight loss. She also broke out in small itchy rash all over her body. I remember she had similar rash when she was a baby of about eight months old.
We were at a loss as to what exactly the problem was, to the extent that we believed she was possessed by some kind of Evil Spirit as no Doctor within and outside Nigeria was able to give a precise diagnosis.To help ease her pains, we started her on herbs but that only worsened her condition as she kept vomiting and losing weight while the lymph node on her neck became more swollen and a bit painful.
It reached a stage where she could not stand straight independently, she felt like her Spinal Cord could not hold her. Whenever she wants to walk around the house, I’d use a wrapper to hold her tight and straight while her brothers would support her. They would make jest of her, calling her an invalid. We were oblivious of what was ahead of us.
At this stage, a kind relative who pitied Zainab so much sponsored her to International Medical Center (IMC), Cairo, Egypt, in late 2013.
EGYPT
At IMC, it took three weeks of lab testing, City Scan, MRI and a Pet Scan before the team of Doctor Mahmud Salla determined her illness. Finally, the day he confirmed our worst fear, it felt like the world stood still. We were shocked and appalled.
I will not forget how she leaned on my shoulder while I held and squeezed her hands to comfort her. We both knew it’s the beginning of a difficult time, a very hard trial, knowing quite well that surviving cancer is like taboo. Dr Mahmud pacified her and assured us that with current Cancer Treatment, Zainab had a chance at life, only it would take Time, Patience, Money, Prayers and Endurance.
Accepting the fact that Zainab was a cancer patient wasn’t easy at all. I always wished the doctor would call us back and apologise for wrong misinterpretation of her blood tests. But my wish never came true; nothing changed the fact that Zainab was truly a cancer patient. The only good thing was she accepted it in good faith and looked forward to her treatment with strong conviction that she would win the battle.
Her first chemotherapy was like magic; it made her stronger and cleared all the lymph nodes on her neck, the back curvature, which the doctor described as Collapsed Vertebrae, strengthened. Surprisingly, she could walk independently again and lived almost a normal life except for the side effect of chemotherapy that left her with a burnt hand and bald head – A personality she accepted without remorse.
As a care giver,Ii tried my best not to be demoralized by her condition. Besides, her stoicism raised my hope that no doubt, she would overcome the wicked cancer, so I was strong and full of hope, just as much as she was.
Without fear, most of the time, we discussed how beautiful life would be after her treatment that she even planned to perform Lesser Hajj, go back to School, write a book on her experience as a Lymphoma patient and like all girls her age, marriage was not out of her plans. Jokingly, she said to me, she would like her wedding to be a simple one, unlike the modern, bogus weddings of nowadays- “It’s going to be wedding fatiha in the morning and conveyance of bride in the evening”, and we both laughed over it and prayed Allah to make it possible.
In spite of Zainab’s endurance, there were times the pain that ravaged her body was so unbearable despite pain relief patches and injection of strong pain relievers. I can’t forget nights we don’t sleep because of pain. Nights I rushed her to hospital for one complication or the other. At times, I woke up to the sound of her shower in the middle of the night to ease the aches and pains she endured, instead of her waking me up to give her a massage and when I questioned her for not waking me up, she would say “Mami, you need to rest”.
There were days she woke up drenched in her own sweat in spite of the cold weather, which is typical of a lymphoma. Other days, we bath her with cold water to douse her high body temperature. Some days, she preferred to stay in bed with the curtains closed with dozens of medication and a cup of tea by her bed side. On other days, she woke up with Sore Gums, Microcytosis or vomiting due to side effect of chemotherapy, yet, she never complained.
Her condition usually made everything around the house subdued and dull. Whenever she’s asleep, we turn down the sound of the TV, tip toed around the house and talked in low tone for fear of waking her up.
One surprising thing about Zainab was that you could never catch her feeling bad or crying over her condition. Whenever she’s asked how she was feeling, she would say “Alhamdulillah, jiki da sauki sosai “, meaning Praise be to God, the body is much improved. She always wore a smiley face that leaves you wondering if really, she was a cancer patient.
The best of times for Zainab was when she had her first successful Stem Cell Transplant which, as part of the treatment, made her stay for one good month in isolation.The day she came out was one of our happiest days – the whole family was overwhelmed with Joy, we prayed and even made sacrifice to thank God. We received many congratulatory phone calls and text messages from Nigeria. Life was back to normal; at least, we could sleep without waking up for body massages, we watched films at high volume, didn’t need to tip toe about the house and above all, no chemotherapy and its ugly effects on her system. We went sight seeing, shopping, had dinner at a beautiful restaurant and visited historical places around Egypt.
I still have in my memory, the big smile on her face when the doctor announced the good news that she was cancer free after a salvage intervention protocol. Immediately, muttered “Alhamdulillah!” and when we were out of the doctor’s office, she asked me to snap her Cancer Free face. Without wasting time, we started making arrangements to come back to Nigeria as she was so eager to come back home.
Our joy didn’t last long however, as she didn’t even get to achieve any of her plans when she started complaining of back ache again and rapidly losing a lot of weight. After series of checks, her doctor confirmed a relapse – that is, a re occurrence of the disease, which necessitated her going through another circle of chemotherapy. Every morning, it was another endless cycle of pricking her veins for blood sample to ascertain the level of cancer and other rigours of the treatment.
I was devastated and saddened by the news but Zainab was calm and believed that she will overcome it as she did the first time. She was so determined that she joined an Arabic class, which she attended in between her chemo breaks.
Way into her new circle of Chemotherapy, she developed swollen feet as a result of having High Createnine, an indication that her kidneys were affected and as such, the use of catheter around the kidney area was suggested by her doctor. She abhorred it and really looked forward to the day it would be removed while at the same time, teased about it by describing it as her designer bag.
Sadly, her health kept deteriorating instead of improving and admission into Hospital became more frequent with longer days and huge bills. Eventually, she started getting tired easily that it reached a stage when she could not walk within the hospital premises or any long distance, so the use of a wheel chair became inevitable and this stifled her hope of learning Arabic.
Pushing her around was so disheartening but I never gave up on hope that she would get better. We both believed it was a passing phase. While I push her around, we often cracked jokes, discussed issues of family, friends, School, and as usual, life after her treatment and so on. We got so much closer as mother and daughter. She often teased that she doesn’t like talking without seeing my face as i pushed her and i always replied “except I push you from the front, and that will mean me going backwards instead of forward”, and we Will both laugh over it.
Determined as she was, whenever we came across known faces or patients from Nigeria, she would stand up abruptly from the wheelchair and say “I don’t want them to think i’m seriously ill”.
I remember a day she asked me why she was suffering so much at such a young age. It was a difficult question, but looking at her beautiful face, I mustered the courage to explain to her that God has reasons for everything, good or bad, and that her illness was nothing but Allah’s trial, and for any adversity, Allah erases one’s sins and no human being escapes Allah’s trial, everyone faces it in his/her own way. I gave her example of thousands of people, both young and old, including babies, that have suffered or are suffering from Cancer, people who could not afford three square meals, talk less of a place to call home. To put a smile on her face, I ended by saying “Yazuzu”, as she was fondly called by the nurses, that is the “Fault In Our Stars”, referring to a film she loved so much. She just stared at me and didn’t utter a word, not even offering the smile I expected. I kept wondering what her thoughts were at that point in time.
One funny thing I can’t forget was how one of her Doctors developed interest in her. Almost every morning, he would come to her room and beg her to tell him she loves him. At a point, he got into a dilemma for the fact that he was engaged and at the same time falling for Zainab. On a particular day, he asked her to advice him on what to do about his fiance as he was so in love with her (Zainab). I remember how she laughed and laughed and told him to forget her as first things first, he was engaged, it was better for him to go ahead with his plan and allow her finish her treatment. His visits, Prayers, Jokes and confessions of his love made Zainab happy.
Something else that raised my hope was her doctor’s recommendation for another transplant known as Analogous Transplant, this time, using any of her sibling that their Blood Human Leukocyte Antigen (HLA) matches. Another option was for me to get pregnant so that the baby could be used to save her. Unfortunately, all of her four brothers weren’t a complete match with her. I was mad at my self for my inability to help her either due to some health reasons . So we were left with the option of Donor search from Donor Centers at a very exorbitant price, apart from the huge bill of the transplant at $50,000. The bill for a new Chemotherapy Drug (Brentuximab CD30) that the doctor prescribed was $80,000 for eight circles, while Donor would be sourced at $40,000 apart from other miscellaneous costs which we could not afford. Hence, we embarked on ‘Save Zainab’ campaign that went viral on local and social media with the hashtag #SpareAThotForZainab.
In my own effort as a caregiver, with the permission of the Doctor, I joined the hospital in the online search for a Donor. I contacted so many Donor Registries in New York, Malaysia, Saudi Arabia, India, Australia etc and the Center in Enugu, Nigeria, but no donor was found. But I was impressed with the response of the Nigerian Bone Marrow Registry, they extended their search to South Africa and even suggested that we stage a Donor Drive as opportunity to gather a lot of people to be tested. We were so excited at the prospect, even though it didn’t hold eventually.
The whole treatment reached a static point with only the care of pain management unit. Painfully, the Brentuximab we had so much hope on wasn’t effective as expected. Her first dose made her develop breathlessness and she had to be put on oxygen, her lips and ears got swollen and she had patches of blood all over her body but she perked up almost immediately. As she opened her eyes, she said to me smiling, “you thought I was going to die”, but I later realized that she was only trying to hide her fears to raise my hope as later in the night, she asked me to sleep with her on the hospital bed and like a baby, I cuddled her to sleep.
In spite of what happened, her chemotherapy continued after three weeks of interval. I was still hopeful, especially as she was eating, walking and gisting normally except when she was in pain. But then, I noticed a change in Dr Mahmud’s attitude towards her case as he seemed to pity her so much that he gave flimsy excuses for skipping her room during ward rounds. But the fact that he never faced me to say that she had exhausted her treatment line, I was determined to take her to the end of the world for a second opinion so long as she was breathing. After contact with St. Jude’s Hospital in America for a free treatment failed, we settled to take her to BLK Hospital, India, considering proximity.
INDIA
We arrived at BLK Hospital, India on the 1st of March and she was admitted on the 2nd of March, 2015. Under the care of Dr Gaurav kharya, an expert in Bone Marrow Transplant. I had hope that she would get a different treatment, a Donor Match and would be well again, but in the end, I realised it was more or less a continuation of the same procedure in Egypt; only with different drugs and same huge bills.
After rounds of Beacopp Protocol and all search for a Donor failed, the doctor decided to go for Haplo Transplantation, which is using her immediate brother on half match for the Transplant. Unfortunately, getting her Donor brother to India for the transplant proved difficult. The Indian Embassy officials were so strict despite all proof that the trip was for medical reasons. We almost gave up before he arrived, accompanied by their father and my husband.
Eventually, Zainab had the Transplant on partial remission but looked fragile afterwards but at the same time, was extremely excited and kept smiling for a long time. When she got better, she asked me to buy a phone as a gift for her Donor Brother, who gave her a chance at life. Seeing she was stable, her father left for Nigeria.
We believed it was the end of the wicked Cancer and I was eager for her to be stronger and be discharged but I was wrong. Like the case in IMC, I noticed that the doctor started avoiding Zainab during ward rounds and Consultations, so also his team members, but still, that didn’t give me the inkling that Zainab was helpless and was at the verge of leaving me, until about 10 days after the Transplant when she started having High Temperature, inflamed throat that she couldn’t swallow her own saliva, Vomiting, Body Coldness and Consistent Hiccups. Still, I was hopeful until she developed breathing difficulty and was rushed to ICU.
When I went to see her at the ICU, I was shocked. For the first time in the two years Zainab battled intense Cancer, I realized something that hadn’t registered before – ‘The Severity of Hodgin Lymphoma’. Seeing her on life Support Machine really demoralized and saddened me and broke my heart. She had different types drip conduits attached to her body, while she was suctioned in the mouth intermittently. At this point, verbal communication between us was barred. When in need of help, she wrote. Gradually, she became weaker and stopped writing, then succumbed to demonstrating with her hand to indicate either yes or no. Eventually, she stopped, then we could only stare at each other and in Allah’s Name; her eyes closed too.
Still, I had hope. I still believed that the Dialysis, Insulin Injections, Platelets, Plasma and Blood infused in her will not go for nothing. I prayed fervently to God to spare her for having suffered almost all her life and for being my only Daughter. She stayed in the intensive care unit (ICU) for six days, each day with a new case of either High Creatinine, High Blood Pressure, High level of Sugar, and lastly, she developed Thrombotic Thrombocytopenic Purpa (TTP), which is a rare blood disorder.
Night of the sixth day, when her Donor Brother was leaving us to go back to Nigeria, he was allowed to enter the ICU to bid her good bye and immediately he entered, he hugged me and asked me to tell the Doctors to remove all the tubes. I asked him why, he said “Can’t u see her Mami, she’s suffering, she doesn’t need them anymore”. Then it dawned on me that she could be dying. Immediately, with a feeling I can’t describe, I turned to Zainab and called her name and surprisingly, she nodded in answer. I asked if she could hear me, she nodded in the affirmative again. Then I told her to be supplicating to God, the kalimati shahada and if she can’t, she should call any of the 99 Names of Allah. I asked her again, can you hear me,Zainab, she nodded yes. Then I turned back towards her brother. Without a word, he left the cubicle.
On the sixth day in ICU, 7th of May, 2015, as I entered the ICU in the morning, one of the Doctors immediately, held my hand and and said “Ma’am, we are sorry, your daughter is a little sick this morning, we can do nothing more for her. If you can, go sit beside her and hold her hands”.
Like a zombie, I walked into her cubicle, sat by her side, crying ,praying and reciting the kalimatu Shahada. God was my only hope at that moment. At that point, another Doctor called my attention and said “Sorry Ma’am, from reading of the Machine, your Daughter has few minutes left. Better call your People in Nigeria to decide where you want to bury her”. I was trying to control myself when another Doctor again came in and said “sorry Ma’am, we will help make it peaceful for your daughter”. Before I could say anything, he called one of the nurses and ordered her to sedate her. Innalillahi Wa Inna Ilaihi Raji’uun (from Allah we come and to Him we shall return).
In between tears, I called her father in Nigeria and we decided to bury her in India. No sooner had I dropped the phone than the life support machine gave a straight sound which indicated that my brave and optimistic Zainab was gone. May Allah forgive her of her sins, ameen.
There’s no word strong or adequate enough to describe the pain of losing her.
She was buried according to Islamic injunctions at FIROZ KOTLA MUSLIM CEMETERY, NEW DELHI. .
In all, we her family are forever grateful for the Love, Care, Support , Visits and Prayers she received from the General Public. It really made Zainab a star in sickness. She really appreciated and prayed Allah to reward everyone abundantly, though she felt bad that she couldn’t reply the numerous Tweets, Text and WhatsApp messages.
Not long ago, I overheard her small cousins between the ages four and six playing, when one of them said “Adda Zainab is in Cairo Hospital”, the other one said “No, she’s with Allah” and one of them again replied “You all don’t know, she’s in Aljannah” and I said by the will of ALLAH, Ameeen.
To this end, I pray for Allah’s mercy on Zainab and her Aunt and namesake, Zainab Jamaare, who also lost the battle to Lymphoma at the age of 22 in 1985.
Special prayers to Zainab’s sick mates, who also lost the battle to different types of cancer like, Nana Saad, Bello Sani, Fatima Dangote, Umar Lugga, Hadiza Umar, Amina Nahuce, Kassim Abba Aliyu, Yelwa Bature, Khadija Imam and Aisha Kollere, who just lost the battle two weeks ago.May their souls rest in peace, ameen.
My love goes to Hadiza Kere and little Khadija Lawal for surviving Lymphoma.
To all cancer patients, KEEP FIGHTING HARD.
#spareathoughtforzainab.
Mrs.Hafsat Aliyu .
[email protected]
