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. 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 felt something was wrong and insisted that the doctor get blood labs done as I looked pale, weak, and tired.) I told my cousins I would be back very soon and we could continue playing football when I returned. Little did I know that would be the last time I would see my family for another three years.
My mother and I had arrived at PEC and expected similar results as previous visits. We waited patiently when the nurse and doctor told us 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, and the doctor didn’t explain why we had to move.
As the nurse came in to (check on my vital signs), my mother asked 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 shocked 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. Despite all this chaos and uncertainty, my mother kept her composure and was my light in the dark. My mother had called her father (my grandfather). She told him of this situation, which caused him to cry since his friend 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 concluded 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 doctor 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, I was told that they usually don’t give this type of information to a lady without her family present, but as I have already known, yes they are suspecting that my son has Leukemia) After enduring a couple more days full of tests in Hamad Hospital, 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 a sign that something serious was wrong with me.). (The next day, the doctors had a meeting with my family and informed them that) I was diagnosed with Acute Myeloid Leukemia (AML) and started on chemotherapy immediately to save my life – this was only two days after I had left my home for what had seemed to be a regular checkup that would change my life forever. At this point, I was getting agitated and just wanted to know when I could leave the hospital and play with my cousins again. At that point, my mother explained to me simply about Leukemia and what we would have to do to get rid of this disease. For example, there was a problem with my blood, and the platelets and blood transfusion they gave me were 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 firmly believed that it was essential that I understand what was 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 by a doctor and nurse on the plane as I was still very sick and hooked up on various medications). Immediately as we walked into the hospital room, we were swarmed by a room full of doctors and social workers (remember 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 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 felt emotionally isolated. I only had my mother and grandmother as my only constants, which was the sole reason I could 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 on strong pain medication). Still, 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; 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 hospital procedures; the procedures no longer scared me, but they were still painful, just not as scary as before.
I lost much of my hair in the hospital due to 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 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 military and they all shave their heads). He said being bald made them strong, and this conversation helped me immensely 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 I had in the hospital with the nurses who cared for me and the hospital clowns and ballet dancers who would often visit. I remember (during my bone marrow transplant, I was not allowed many visitors, and my interactions with the nurses weren’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 team to walk by my room and wave or smile or talk to me, which lifted my spirits (she would print a piece of paper, stick it on my door, and open the curtains so that I could see everyone’s excitement). This community spirit helped me and my family get through this ordeal.
I was able to be friends with some of the children in the hospital, especially this Saudi boy who was admitted at the same time as me. Still, 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 significant 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 wouldn’t say I liked 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 playground – I had video games and a vast 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 two 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 following steps before the transplant were the worst. I had to endure total body radiation twice a day (since kids rarely 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 chronic GVHD in the gut and skin) and 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 steroids to combat the rejections. 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 fresh fruits, vegetables, or anything not cooked at home for a long time. However, due to my GVHD and other complications, I didn’t eat for six months and was living on TPN 24 hours) During this challenging time, my mother ensured I had a psychologist so that my mental health was cared for.
After most of the medical severe 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 age, but at the same time, this was a different environment, and I didn’t exactly look like a normal kid. The steroids I was on had caused a lot of weight gain, so I faced some bullying at the public school. Other students wouldn’t allow me to play football, my favorite sport, with them, and even the teachers didn’t seem to understand my situation. The Physical Education teacher was 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 okay, and I played football in my head – little did I know then 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, BASIS Independent Mclean (a private school), was more understanding and accompanied by 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 many friends there and felt like I was returning to my life.
Besides support from the school, the community spirit in the hospital played a massive role in my recovery. Organizations such as “Make a Wish” allowed me 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 shape of a ball stone’ from them to help with nausea. Now I realize that the stone was probably not magical at all, but it helped me to believe in such a thing at that time. Additionally, there was a couple who volunteered to take pictures of all the kids in the hospital, giving us all a photo shoot – it was this support that broke the stigma and feeling of hopelessness that surrounded the kids and their families. Removing stigma about Cancer is something that I feel could be improved in Qatar, which is what the Qatar Cancer Society is trying to achieve.
When we all returned to Qatar after the transplant, I had to every 6 months Abdulrahman had to return to DC to continue his treatment and checkups. Alhamdallah, on the 12th of June 2020, we celebrated five 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. However, the association had only ex-pats, which shows that this is still a taboo topic in this society. Hence, in an attempt to empower others, my mother arranged for me to make a video about my experience with Cancer to show that if I can get through this, so can they.
This journey has made me realize that I am stronger than I look or think and appreciate the people around me, as life is unpredictable. I thank the doctors, nurses, social workers, and everyone who supported me in Qatar and the USA. I would also like to mention “Be the Match,” a bank to which anyone can donate their blood and help find an HLA match like me. 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 recovery. (since the HLA typing is based on ethnicity)
Last, Abdel Rahman’s mother sent her message to the community: “Cancer is given to us by God: children like my son have done nothing to acquire this. Hence, it shouldn’t be taboo or haram to talk about it; more people should open up to this so that we as a society can get comfortable and support each other.