Abdulrahman : this journey made me stronger than I thinkQCS Team
Abdulrahman is a typical 13-year-old Qatari boy whose life changed dramatically when he was eight years old, Which tells us his story, saying:
It was a month after my birthday, and I was playing with my cousins and my brother (at my grandfather Yousuf’s house) when my mom brought me to the Pediatric Emergency Centre at Al-Saad for what we both thought was a regular physical checkup and blood work since I was falling sick continually (with a high fever) and more than any other children in my family. (The doctor wanted to send me home with antibiotics but my mother had a feeling that something was wrong and insisted with the doctor to get blood labs done as I looked pale, week, and fatigue) I told my cousins that I would be back very soon, and we could continue to play football when I returned. Little did I know that would be the last time that I would see my family for another 3 years.
My mother and I had arrived to PEC and expecting similar results as previous visits, we were waiting patiently when the nurse and doctor told that we had to be moved to an Isolation room. Being an 8 year old, I didn’t quite understand what was happening around me but this was also the case for my mother as well as the doctor didn’t explain why we had to move.
As the nurse came in to (check on my vital signs), my mother asked her if we were placed in the isolation room to keep others safe, since she thought I had an infectious disease. When the nurse replied, “it’s to keep your son safe from others”, this reply came as a shock to both my mother and me.
Within an hour, I was in an ambulance on my way to Hamad General Hospital, still not knowing why all this was happening to me. Once I arrived at the hospital, another group of nurses tended to me and started (a) another blood transfusion containing platelets. Even with all this chaos and uncertainty happening around us, my mother kept her composure and was my light in the dark. My mother had called her father (my grandfather), and told him of this situation, which caused him to cry, since his friend who was diagnosed with cancer and had undergone a similar procedure (the symptoms she was explaining to him that I was having confirmed to him that I had cancer.
My mother, extremely frustrated, as nobody was giving us any answers, had googled all the symptoms and came to a conclusion that I had Leukemia (pale, fatigue, high fever, bruises, low platelets, low ANC, etc.). This conclusion was met with hesitancy from the doctors, and both my mother and I spent the entire (night) in Hamad Hospital without knowing why we were there. The next day, when the doctors came in for their morning rounds, my mother confronted them and asked if I had leukemia–but she was met with more uncertainty from the doctors. (the doctors had excused himself and left the room. After a few hours, my mom was asked by the doctor to step out of my room and in the hallway was told that they usually don’t give this type of information to a lady without her family present but as I have already know, yes they are suspecting that my son has leukemia). After enduring a couple more days full of tests in Hamad Hospital, (That day they had to confirm that I had leukemia, so I had to undergo an LP to take a sample of my bone marrow to check for cancer cells. My mother and family were very nervous and praying but my mom never should be sign that something serious was wrong with me.). (the next day, the doctors had a meeting with my family and informed that that) I was diagnosed with Acute Myeloid Leukemia (AML) and started on chemotherapy immediately to save my life – this was only 2 days after I had left my home for what had seemed to be a regular checkup would change my life forever. At this point, I was getting agitated and just wanted to know when I could leave the hospital and go play with my cousins again but. At that point my mother explained to me in simple terms about leukemia and what we were going to have to do to get rid of this disease for example that there was a problem with my blood and they platelets and blood transfusion they were given me is like soldiers going into my body to fight the bad guys). My mother didn’t want to leave me in the dark regarding my condition (and strongly believed that it is very important that I understand what is happening) but at the same time she didn’t want to scare me with big words–I was a child after all.
Within a week after this chaos, my father, brother, grandma Ameena, mother and I were flown to the Children’s hospital in Washington, DC, (accompanied with a doctor and nurse on the plane as I was still very sick and hooked up on various medication) and immediately as we walked into the hospital room, we were swarmed by a room full of doctors and social workers (keep in mind this was the evening and my mother was exhausted from the long flight). This was the start of my 3-year medical journey (in the USA). I was (sad, confused, and wanted to see my family) miserable during most of this time, despite my family’s strong support and my mother staying by my side the entire time. I hadn’t seen my school friends, siblings and cousins, for a long time and I felt emotionally and literally isolated. I only had my mother and grandmother as my only constants and that was the sole reason that I was able to get through this illness and stay strong.
I don’t remember much of what happened in the hospital (since most of the time I was strong pain medication) but some of the most painful moments were when they had to place a Broviac Catheter in my body–I remember being in excruciating pain and not talking to my mother. I felt like I was no longer a boy and they had changed me into a robot. That period was the longest time that I had ignored my mom. Then (my uncle Ahmed) one of my uncles called me from Qatar and pointed out that Ironman’s arc reactor on his chest looked just like my catheter, and he told me that Ironman’s reactor was the basis of his strength in the same way that my (Broviac)catheter was my strength. My Uncle’s words helped me to change how I looked at the hospital procedures; the procedures no longer scared me, but they were still painful, just not as scary as before.
When I was in the hospital, I lost a lot of my hair due to the chemotherapy. Chunks of my hair would be falling into my cereal, ( and I would wake up with hair all over my pillow even in my mouth sometimes and that really frustrated me) and then (my uncle Abdulla) another of my Uncles Facetimed me and told me about John Cena and The Rock, two of my favorite wrestlers who were bald (and that the strongest people in the world are the people in the miliatary and they all shave their heads). He said that being bald made them strong, and this conversation helped me a lot during that time. I even let the Chief of Hematology Oncology in the hospital to shave my head. (and I was happy with that)
Besides the hard times, I also remember the fun that I had in the hospital with the nurses who took care of me and the hospital clowns and ballet dancers who would often visit. I remember (during my bone morrow transplant I was not allowed many visitors and my interactions with the nurses wasn’t allowed anymore except with my assigned nurse) one time when interaction with the hospital staff was decreasing, so my mother created a game called “Guess Haman’s ANC”, where the hospital staff would guess my Absolute Neutrophil Count every day. The closest guesses would get prizes. This encouraged the staff to walk by my room and wave or smile or talk to me, which lifted my spirits (she would print a paper and stick on my door and open the curtains so that I could see everyone’s excitement). It was this community spirit which really helped me, and my family get through this ordeal.
I was able to be friends with some of the children in the hospital, specially this Saudi boy who was admitted at the same time as me, but there was an incident when one of my friends had to get her legs amputated which was a major shock to me, and that event stopped me from talking to any of the children in the hospital. I still don’t understand why I did that, but I felt more comfortable talking to the adults in the hospital after that incident.)
I could not go to school during chemotherapy as it was taking a major toll on my body but I did have tutors who would come to the tutor would come to my home whenever I was there and no matter how sick I felt my mother made sure I kept my brain working) hospital to teach me. Even at moments when I wouldn’t be able to speak, I was still learning, thanks to my mom. I hated every second of it then, and I would try to hide under my blankets and ask my mother to make the tutor leave, but now I understand the importance of continuing my education. My mom said that continuing my education was designed to make me feel that this part of my life was temporary and that this too shall pass. I didn’t believe in that idea then but I do now.
After most of my chemotherapy cycles were over, we rented a huge house and moved into it instead of the hospital as it wasn’t necessary to stay there. My mother had rented a house with a basement and turned it into my personal playground – I had video games and a huge space to play football – it was great! But this didn’t last long: more labs were done for me which revealed that there were still cancer cells in the blood – the chemotherapy wasn’t working as well as we thought it would and the doctors found out that I had a 5q deletion in my genetic profile, which means that I had to have a bone marrow transplant. Thus I had to have 2 more cycles of chemo before the transplant could be done, so we had to move back to the hospital.
The search for an HLA (human leukocyte antigen) match was probably the worst period for my mother as our relatives and friends back in Qatar weren’t aware of this and even when they were tested, no one turned out to be my match (even the international bank didn’t have a good match for me). One day, the doctors informed us that a mother in Texas had donated her newborn’s cord blood which surprisingly matched my HLA: I had an unrelated stem cell donor in Texas!
The next steps before the transplant were the worse. I had to endure full body radiation twice a day (since it is rare that kids undergo this type of radiation I had to go to an adult hospital via ambulance – I didn’t mind the ambulance ride it had a TV!) and then (one more cycle of chemo but it was strong on my body and the doctor’s told my mom that they need to bring my body to near death as possible so that my body doesn’t reject the donor’s cells) more cycles of chemo before I was ready for the transplant. Then came the complications – (Acute and Cronic GVHD in the gut and skin) multiple rejections of the transplanted bone marrow. Your body recognizes that the new bone marrow is foreign and tries to fight it. Hence I was placed on heavy amounts of steroids to combat the rejections and I was given strict guidelines : everything I ate had to be cooked thoroughly, and I had an hour to eat it and to drink a bottle of water within an hour as well –if it had been left alone more than that, it was no longer safe for me to drink. (I was not allowed to eat any fresh fruits, vegetables or anything that was not cooked at home for a long time. But due to my GVHD and other complications I didn’t eat for 6 months and was living on TPN 24 hours) During this hard time, my mother made sure I had a psychologist so that my mental health was taken care of as well.
After most of the serious medical therapy was over and the doctors allowed me to go to school, I was enrolled in a public school in the USA. I had mixed feelings about going back to school. I had missed playing and having friends my own age but at the same time, this was a different environment and I didn’t exactly look like a normal kid. The steroids that I was on had caused a lot of weight gain, so I did face some bullying at the public school. Other students wouldn’t allow me to play football, my most favorite sport in the world, with them and even the teachers didn’t seem to understand my situation. The Physical Education teacher was getting frustrated that I couldn’t run during the PE sessions due to my weight. This didn’t bother me as much as it did my mother. I just told her that it was ok and I played football in my head – little did I know at that time, that this was a coping mechanism I had developed during my bedridden time in the hospital. I was taken out of the school soon after since the students or the teachers weren’t accommodating, and the next school called BASIS Independent Mclean (a private school) was more understanding and accompanying with my condition and requirements. Instead of making me feel left out, they made me stand out amongst the others, and I had the opportunity to share my story which was welcomed by all, students and teachers alike. I made a lot of friends there and felt like I was returning back to my life.
Besides support from the school, the community spirit in the hospital played a huge role in my recovery. Organizations such as “Make a Wish” gave me the chance to meet John Cena and support groups for mothers such as PANDA would come up with non-medical solutions for issues such as nausea or sleeping difficulties. I remember receiving a ‘magic ceramic in the shaped of a ball stone’ from them which was to help with nausea. Now I realize that the stone was probably not magical at all, but it helped me at that time to believe in such a thing. Additionally, there was a couple who volunteered to take pictures of all the kids in the hospital, giving us all a photoshoot – it was this support which broke the stigma and feeling of hopelessness which surrounds the kids and their families. Removing stigma about cancer is something that I feel could be improved in Qatar, which is what Qatar Cancer Society is trying to achieve.
When we all came back to Qatar after the transplant, I have to every 6 months Abdulrahman had to return to DC to continue his treatment and for check-ups. Alhamdallah on the 12th of June 2020 we celebrated 5 years since his bone marrow transplant – 5 years cancer-free! my mother made sure I joined QCS so that I could share my story with others who might be in the same position as me. We expected to see Qatari children and their families to be in the support groups, but the association had only expats which shows that this is still a taboo topic in this society. Hence in an attempt to empower others, my mother arranged me to make a video taking about my experience with cancer, to show that if I can get through this, so can they.
This whole journey has made me realize that I am stronger than I look or think and to appreciate the people around me as life is very unpredictable. I am very thankful for the doctors, nurses, social workers and everyone who supported me in Qatar and in the USA. I would also like to mention, “Be the Match” which is a bank to which anyone can donate their blood and help find someone like me an HLA match. If the mother in Texas hadn’t donated her newborn’s (cord) blood to the bank I wouldn’t have had a good transplant, and if more people in Qatar were aware of this bank, then I could have gotten a faster match and therefore a faster recovery. (since the HLA typing is based on ethnicity)
Last but not least, Abdel Rahman’s mother sent her message to the community saying “Cancer is given to us by God: children like my son have done nothing to acquire this, hence it shouldn’t be a taboo or haram to talk about it; more people should open up to this, so that we as a society can get comfortable and offer support to each other .