Preparing for the Transplant

On September 30, 2008, Dalal was screaming and complaining of severe abdominal pain. She was rushed to the ER (Emergency Room) and we were all worried that the disease might have metastasized (spread to other parts of the body). She underwent a PET scan on her neck and chest, a CT scan on her head, and an X-ray scan on her abdomen. Surprisingly, the results were positive and reassuring. In fact, the tumor had actually shrunk. It turned out that the pain was caused by the potency of the chemo. The doctors lowered the doses of the drugs and Dalal began to recover. Shortly after, we were greeted with very good news. The oncologist assured us that Dalal was now in good health condition to be taken for the bone marrow transplant. On October 13, 2008, my parents met with the head of the hospital's bone marrow transplant center to discuss the entire procedure and prepare for it. A timeline of specific tests was scheduled for both Dalal and Yazeed to ensure that both of them were in the required condition to undergo the operation. Dalal had to go through a physical exam and several blood tests to make sure her kidneys and liver were properly functioning. They tested her urine and checked her throat and lungs for any infections. They also scanned her chest for pneumonia (lung infection), tested her heartbeat to make sure it was stable, and wrapped it up by checking her eyes, ears, and teeth. All of the tests were positive and she was now fully prepared.

It was explained that before the operation, she would be given a high dose of chemo and radiation for the purpose of weakening her immune system to prepare her body for receiving the new cells and prevent it from rejecting them. The chemo and radiation combination work together to secure the place where the new cells will be transplanted and destroy any cancerous blood cells in that area. Throughout the duration of this combination, the patient is very susceptible to infections because their immune systems are weakened. Therefore, they are strictly isolated and no individual is allowed in the same room unless their nose and mouth were fully covered and they wore gloves. The doctors explained that at the start of the operation, Yazeed would be placed under general anesthesia where he would be fully unconscious. Then, they would inject a needle in his inner pelvic bone to extract the bone marrow. Afterwards, they would implant a subcutaneous catheter in one of Dalal's major veins and use it to transport the bone marrow cells. This complicated operation is heavily dependant on the health of both the donor and the recipient; the slightest injury or infection can delay or even cancel the entire procedure. It also has severe side effects, considering that the patient's immunity will be very weak.

After going over the entire procedure and how it would be performed, it was scheduled on November 3, 2008. My parents did their best to offer Dalal their utmost support. Part of their efforts was inviting our grandparents to be by her side, who did not hesitate at all and came all the way to Philadelphia in a very short time. We were all convinced that this operation was the only way for a cure and counted every single day in anticipation for the scheduled date. Dalal was very thrilled to have the surgery and did everything she could to ensure the safety of Yazeed. She gave him gifts as a token of appreciation, encouraged him to eat healthy, and she even cried begging him to stay when the school year began and he had to return to Saudi Arabia for his medical college. She feared that he may contract a virus or an infection that made him unqualified to be a donor. Eventually, Dalal was convinced that Yazeed would return on time in perfect condition for the surgery. Around that time, I was enrolled at McCall once more, this time with my older brother Sultan.

During the final preparatory stages for the operation on October 14, 2008, Yazeed was required to be in the hospital for final tests. His flight left Saudi Arabia and was on its way to the United States. Meanwhile, we were all shocked with the unexpected. One of Dalal's routine tests showed a virus called Cytomegalovirus (CMV) in her urine. This virus is fairly common and usually does not impose a significant risk for healthy individuals, but it was a different case for my sister. Her immune system was weakened and her cancer specifically targeted immunity cells, so she was very vulnerable. Thus, the operation could not be performed unless the virus was treated. Because of this, the transplant was postponed to an undetermined date (until the virus was cured). This was very depressing and Dalal started crying so much; she was just days away from the surgery that would become her cure. In addition, Yazeed had arrived without undergoing any tests. He only stayed for two days to check on Dalal, who was now getting antivirals to treat the virus, and returned to Saudi Arabia for his college.

Two days later, it was decided that Dalal would continue the therapy at home. My mother was given all the necessary medications and was carefully instructed on how to give them to her through the catheter. They still had to go to the hospital every five days to replace the injection needles. One week later, Dalal's blood was tested. The results were reassuring and the CMV was less severe, but not yet to the minimum required level that allowed her to undergo the transplant. During that period, tension and anxiety were building up. We were scared of any sudden complications, especially concerning the tumor growing back. On another side, my parents were considering whether CHOP was the best place to have the bone marrow transplant surgery. It was their priority to search for the top medical institution in the United States. To their relief, it turned out that CHOP was one of the top transplant centers and was advanced in treating cancers of children. But right around that time, my father received a phone call from his highness Prince Sultan Bin Salman who followed up dozens of times before on Dalal's condition and latest developments. During that call, he highly recommended going to St. Jude Children's Research Center in Memphis, Tennessee. It had a very good reputation in treating cancers of children and performing transplants in particular. My father decided to follow the recommendation and began making preparations for Dalal's transfer to St. Jude hospital. His highness directly contacted the hospital and significantly facilitated the transfer process. Even though they rarely accepted such cases, especially with international patients, Dalal became an exception thanks to his highness.

My parents and Dalal arrived in Memphis, Tennessee on October 25, 2008. Sometime during October (before heading to Memphis), I remember my father having to return to Saudi Arabia for important work meetings. I was begging him to take me back with him because I missed our house and relatives, and he agreed. His stay there was very short and when he was going back to the United States, I decided to not go with him and stay in Saudi Arabia. Although I do not recall where Yazeed was at that exact time, I clearly remember staying in our house all by myself for about a week. I became lonely and very depressed to the point where I had to move to my grandparents' house. Even there, I felt empty and barely talked to anyone. A few days later, Yazeed came back and stayed with me. When I felt how it was like being a nine year old completely isolated from his family, I looked for the soonest opportunity to be reunited with them. I was lonely, scared, and depressed for a whole week. Yazeed filled the void in my heart when he was by my side and took care of me like I was his own son. Eventually, the both of us returned to Philadelphia after my parents left Memphis. At the time, I had no idea what was happening at St. Jude hospital, nor did I know that their return from Memphis was due to a disaster that shocked all of us.

On the first appointment at St. Jude, Dalal was warmly welcomed by the staff. They performed several routine tests and discussed how and when the operation would be performed. They also gave my parents the choice of transferring all of Dalal's medical files and have her fully admitted at St. Jude instead of CHOP. Both institutions were very similar to each other and had a remarkable reputation, so my parents let Dalal choose. With no hesitation, she decided to continue with CHOP as she was very comfortable with the medical staff there and loved the city of Philadelphia. On their second visit the next day, my parents noticed a sudden change in the behavior of the medical staff. Even before my parents told them their decision about Dalal staying at CHOP, they became reluctant to have her case and ultimately decided that she had to go back to CHOP.