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For My Daughter, Zainab Aliyu

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Zainab was diagnosed with Cancer when she was 20 years old.

Her ill health started in 2003, beween 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 Turberclusis 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 return to the Hospital for any complaint.

A few months later, 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 Haematology 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 unpasteurised dairy products). The doctors were not convinced with the results though.

About a year after, she started experiencing ear ache and like the lymph nodes, all checks at the National Ear Care Centre, Kaduna, proved nothing bad but she kept having occurence of wounds and inflammations despite medications.This affected her studies as, 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 last, she was free of Cancer. However, not up to a week after she returned to Nigeria, more 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 usesd 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 her condition deteriorated. 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 rashes all over her body. I remember she had a 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.

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, CT Scan, MRI and a Pet Scan before Dr Mahmud Salla’s team diagnosed her illness. Finally, the day he confirmed our worst fear, it felt like the world stood still. We were shocked and appalled.

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.

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.

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.

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.

One surprising thing about Zainab was that you could never catch her feeling bad or crying over her condition. Whenever she was asked how she was feeling, she would say  “Alhamdulillah, jiki da sauki sosai “, meaning Praise be to God, the health is much improved. She always wore a smile on her 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 tiptoe about the house and above all, no chemotherapy and its ugly effects on her system. We went sightseeing, 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 recurrence 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 Creatinine, an indication that her kidneys were affected and as such, the use of catheter around the kidney area was suggested by her doctor.

Sadly, her health kept deteriorating instead of improving and admission into hospital became more frequent with longer days and huge bills.

Her doctor’s recommendation for another transplant known as Anologus Transplant, raised our hopes again, this time, using any of her siblings whose Blood Human Leucocyte Antigen (HLA) matched hers. Another option was for me to get pregnant so that the baby could be used to save her. Unfortunately, none of her four brothers were a complete match with her. I was mad at myself 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 a ‘Save Zainab’ campaign that went viral on local and social media with the hashtag #SpareAThotForZainab.

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.

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.

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. I noticed a change in Dr Mahmud’s attitude towards her case as he seemed to pity her so much that he gave excuses for skipping her room during ward rounds. But 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. 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.

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 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 chills and consistent hiccups. She developed difficulty in breathing and was rushed to ICU.

I realized something that hadn’t registered  before –  the severity of Hodgin Lymphoma. Seeing her on life support machine really  demoralized, saddened me and broke my heart. She had different types of drip conduits attached to her body, while she was suctioned in the mouth intermittently. At this point, verbal communication between us was barred.

Still, I had hope. I still believed that the Dialysis, Insulin Injections, Platelets, Plasma and Blood  infusions 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.

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 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, India.

To all cancer patients, KEEP FIGHTING HARD.

– Aliyu wrote in from Abuja





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