I was a six year old Ibrahim with four siblings; a sixteen year old Yazeed, a thirteen year old Dalal, an eleven year old Sultan, and a one year old Abdulrahman. Given the wide range of our ages, it wasn’t always easy getting along or spending a lot of time with each other, but we always looked after one another despite the petty quarrels that commonly occur between siblings. Even though my older brothers were usually busy with their studies, every now and then we fooled around with each other and often times they’d tease me; typical for a brothers’ relationship. However, the time I spent with my sister was different. It wasn’t centered around teasing. She was unlike either of my older brothers; being with her felt special as she wasn’t the type of sister who would mess with her younger brother or anything of that sort. Her heart was pure and genuine. Since before I even started going to school, she would teach me in her room the Arabic and English alphabets. She had her own whiteboard and loved studying, but loved teaching even more. I learned from her how to read and enunciate the words of the Holy Quran. Learning with her was fun because she always rewarded me by letting me play with her games/toys and she was never boring to listen to. I spent more time with her than I did with my older brothers and in all that time, I do not recall a single moment where she got mad and/or used foul language at me. Such benevolence is hard to find in a person, but Dalal wasn’t an average person; her qualities and character made her a unique rarity even among amiable people.
With everything that she did, I looked up to her as my idol and followed her example. I was extremely lucky to have a sister who dedicated a portion of her daily time to make me a better and smarter person in a way that brought joy to the heart. When I started going to school, most of the preliminary topics that my classmates didn’t know were things I already learned from Dalal. She continued teaching me when I was in first grade and thanks to her, I was way ahead of the game. One day, however, I couldn’t spend time with her because she had a slight pain in her left shoulder and wanted to rest. Since it was the winter season at the time, we thought it may have been the cold virus, but the pain progressively got worse the next day and was followed by a loss of appetite. Dalal’s school nurse gave her an ointment and an analgesic to mitigate the pain. Not too long after, it struck more furiously, so my mother took her to a nearby clinic where an orthopedist took an X-Ray of her shoulder. The results showed nothing harmful, so he prescribed an ointment to alleviate the pain. A few days later, it extended to her entire left side, so my parents took her to a hospital. The doctor assured them that it wasn’t anything to worry about and prescribed an antibiotic for a small infection the scans showed. But that same night, I noticed something odd about Dalal; she was suffering from excruciating pain and couldn’t sleep all night. She was forced to skip school, which was dreadful for her. I got worried because I’d never seen her in that condition before.
The next morning, my parents immediately took her to the same doctor, who was very surprised that she returned so fast. He decided to take scans of her chest and the results showed that she had a left-sided pleural effusion (fluid buildup in the area between the lungs and chest cavity). She was immediately prepped for a pleural tap (insertion of a tube or needle into the space between the lung and chest wall to remove fluid buildup) to extract the fluid. After an agonizing procedure, a very large portion of the fluid was successfully extracted, and a small amount was taken for a biopsy (examining the sample to detect any diseases). On March 3, 2006, my father was told that the results of the biopsy showed cancerous cells in the fluid. He was tremendously shocked to learn that his only daughter had one of the most lethal diseases. He couldn't believe how it was possible, especially because our family had no history of cancer, or as Dr. Siddhartha Mukherjee (Cancer Leadership Award winner) calls it, the emperor of all maladies.
Dalal was referred to King Faisal Specialist Hospital and Research Center, a renowned hospital in Saudi Arabia, where it was further determined that her cancer was T-cell Non-Hodgkin Lymphoma; a type of cancer that affects the immune system. She was temporarily taken to a room in the bone marrow transplant center. The next morning, a group of doctors came for a regular check up. My mother and grandmother preferred to wait outside, and meanwhile, two nurses were chatting by the door. One of them said to the other:
“Have you told the child that she has cancer yet?”
“What did you just say?”, my mother asked in complete shock and disbelief.
The nurse proceeded to repeat her words, and was immediately told by mother to stay utterly silent and not tell Dalal. Still in disbelief, she instantly asked the doctor about whether or not she really had cancer, and that’s when my mother inevitably and undeniably knew that her only daughter indeed had cancer.
She said, “I saw the tears in her father’s eyes for the first time in my life. I saw deep sorrow in his facial expressions, then I knew that something was going on. I started feeling very anxious as I had no idea what my little daughter contracted; her father hid the truth from us for the first few days.”
My father was still hoping that the doctors somehow made a mistake, that the results didn’t necessarily mean Dalal had cancer. He made multiple phone calls to medical specialists for a second opinion and made arrangements for the fluid sample to be tested at another hospital to validate the accuracy of the results and get a definitive diagnosis before proceeding to agree on any treatment plans proposed by King Faisal’s hospital. Unfortunately, all efforts led to the same result; there was no way of getting around the fact that Dalal had cancer. On her third day in the hospital, the doctors decided to take a sample of her bone marrow to check whether it had any cancerous cells. A few hours after a short and agonizing procedure, she was prepped in a small OR (Operating Room) for yet another procedure to extract the remaining fluid buildup in the mediastinal area (chest cavity area surrounding the left lung). My father was beside her as they gave her a local anesthetic and inserted a tube in her left side. The pain she suffered was unbearable to the point where she was screaming with her loudest voice in a way my father had never seen or heard before. Alongside my sister suffering in the procedure, he was slowly tearing apart watching his daughter go through this agony; he felt unsteady and had slight faintings in the room, something unheard of when it comes to my father. What amazed me even more was how my sister reacted; despite going through the most painful procedure in her life (at the time), when she noticed my father not feeling well, her tears and screams mingled with words of reassurance, telling him she was okay and begging him to wake up.
After the procedure was finally over, she was taken back to her room. They gave her Demerol intravenously for about two weeks to alleviate the pain. Shortly after, the bone marrow sample results came in negative; there were no cancer cells in it. As for the fluids, however, they contained cancerous cells due to a tumor in Dalal’s lower throat. To everyone’s surprise, it was shown that the tumor was approximately 12cm wide (4.7 inches); it caused the heart to slightly shift from its normal position. At that point, the agonizing journey of treating the disease was about to commence. Dalal’s team of doctors met with my parents to give them details about her cancer and lay down a two-year chemotherapy treatment plan. My parents were not pleased with the doctors’ lack of diplomacy; they were too blunt and straightforward, inconsiderate of how shocked my parents were to suddenly learn that their only daughter had cancer. In fact, my mother couldn’t bear that bluntness and left the meeting.
After it was over, Dalal asked my parents what was wrong with her as she was still unaware of her disease. My father explained to her that she had a severe lung infection which resulted in a tumor that needed concentrated doses of medications to completely go away. He also told her there may be some side effects and the process may take some time. At her young age, she was still unaware that she had cancer as she did not know that a "tumor" was an indication of that disease. On March 19, 2006, Dalal began her first chemotherapy (chemo for short) treatment. Because of the potency of some chemo drugs, it was unsafe for her to directly ingest them. Instead, a VAD (venous access device) had to be surgically implanted. This device, measured 2x2cm, provides long-term access to a major vein and is used for delivering chemo and taking blood samples. The device was a subcutaneous (under the skin) implanted port, also known as a port-a-cath. The previous tube on her left side was removed and the port-a-cath was placed under her skin into a major vein under the collarbone.
One of the hardest things we faced as a family and was prominent to me even as a kid was accepting the fact that Dalal will no longer be the same. She had entered a serious battle of endurance that requires strong physical and mental preparation. Her fight began once the chemo started; the amount of powerful drugs she had to take regularly was phenomenal, bearing in mind that she was only 13 years old. The doctors used the following methods to administer the chemo drugs:
p.o. (oral): taken by mouth
IV (Intravenous): an IV catheter where the drug(s) flows through is inserted into a vein (In Dalal's case, they were delivered through the VAD)
IM (Intramuscular): deep injection directly to a muscle
IT (Intrathecal): injection into the spinal canal to reach the Cerebrospinal Fluid (CSF)
p.i. (peripheral IV): the IV catheter is placed in a peripheral vein (veins of the forearm)
Shortly after the therapy began, the side effects began to kick in. She suffered severe abdominal pain, continuous nausea, mouth sores, and her skin slightly changed in color. She was also required to have Heparin (anticoagulant) injections every 12 hours for seven months to prevent blood clots because patients who undergo chemotherapy are at risk of developing them. But what came as a shock to her as a girl was her beautiful long hair slowly falling down. During the first few weeks of the therapy, she was crying so much not only because of the pain caused by cancer, but also because of what body changes she was going through. As time went by, she began accepting her condition after she was convinced that the side effects, including her hair loss, were only temporary.
After several weeks, the first stage of the chemo protocol was over and there was some notable progress. Her test results were stable; the tumor was located only in the lymph node (above the left lung) and had started to shrink. The doctors assured us that she had a very high likelihood of recovering from the disease. In late April 2006, the second stage of the chemo began. The drugs were given through the VAD and she continued to receive injections in her thighs and back along with Cortisone pills, which helped with nausea and vomiting but were very strenuous on her body. Every month or so, a sample of her cerebrospinal fluid (CSF) was taken for a test to make sure it didn’t have any cancerous cells. The side effects began to worsen and her hair had completely fallen off, including her eyebrows and eyelashes. However, she grew more resilient than ever and continued to fight back harder. Shortly after, her condition became stable to the point of her dismissal from the hospital; she continued the therapy at home through pills and injections.
Six weeks later, her condition became even better. In addition, his highness Prince Sultan bin Salman (my father’s boss and a royal prince) was continuously monitoring Dalal’s condition and offered tremendous support for the family. When my father decided after multiple consultations to continue the therapy in the United States, his highness viewed Dalal’s case to the Custodian of the Two Holy Mosques, King Abdullah Bin Abdulaziz, who ordered that she would be treated in the United States at the government’s expense. After meticulous research to determine the best hospitals in the United States associated with Oncology, the family’s choice was the Children’s Hospital of Philadelphia. Dalal, however, didn’t want to travel immediately. She wanted to finish the school year beforehand, which only had one month left. Since waiting for her to finish did not impose any health risks, there wasn’t a reason to decline her request. The day of her last exam, Wednesday June 7, 2006, was a turning point for both Dalal and myself as it was our first time traveling to the United States. We headed to Philadelphia, Pennsylvania to continue her therapy at the Children’s Hospital of Philadelphia (CHOP). I was euphoric towards having the opportunity to travel to the United States, but was oblivious to the fact that it was because my sister had cancer. Neither myself nor Dalal knew that she had it at the time.