IAN DANIEL RAHIMI
Beloved Son, Brother, Grandson, Cousin, and Nephew
Ian Daniel Rahimi, the middle child of Jaine and Franko Rahimi was born on February 13, 1996 into a middle class Jewish family with older brother Andrew and younger sister Rebecca. From an early age, Ian was extremely curious and showed an aptitude for learning. He excelled academically and by the time he was in 5th grade, his teachers had him two years ahead in Math and Science classes. Ian loved LEGOs, by the time he was 10 or 11 he had accumulated something like 50 pounds of LEGOs. He would literally spend entire days building with his LEGOs, until one day when he was about 12, he came out of his room and told his mother “Mom I don’t want to play with LEGOs anymore, can you buy me my own computer?”
His mother was in tears because she knew how much he loved his LEGOs but she put the LEGOs away in the basement and bought him a MAC Laptop. Ian had of course been exposed to computers from an early age, especially since his brother, Andrew was known as the “computer boy” around the neighborhood and the school system, but he wanted his own computer and no longer wanted to use the many computers around the house. Two or three days after he had his own computer, again, he came out of his room, and to his father’s (an engineer and technologist) and his brother’s amazement, started showing them how he had learned entire computer languages (Python and assembly) on his own. Ian was smart. Really, really smart. On his report cards,
not only he had all A’s, the teacher’s comments were “He has an exceptional understanding of the subject”. Ian enjoyed other activities as well. He was simply curious to see how everything worked. He took sewing and cooking classes, and although he was not the best athlete, he was on his High School Soccer team. Ian had a dry sense of humor and his practical jokes were real clever. He was a gentle soul and was very innocent. Girls in school always liked him; however, it seemed that he was simply clueless that girls were actually interested in him. This would all end by the time he was in 10th
grade when Katie Clarke came around. Like his brother before him, Ian was in the FIRST Robotics club and competed with other schools along with his team mates. It was in the Robotics club that his Science, Technology, Engineering and Math skills started to shine. He was the chief engineer and programmer of the Robotics team. That’s where he met Katie. When Katie asked him to be her date for the prom he said "No" because he thought she was kidding. When he told the story to his mother, she said “as smart as you are you can be blind, can’t you tell the girl likes you?” Katie must have known how innocent he was, she asked again and they went out with each other and were boyfriend and girlfriend until the day Ian died.
As Ian’s father puts it, of all the engineers, scientists, and technologists he has known and met in his 35-year career, none of them can hold a candle to what Ian knew and could quickly comprehend. When he was in 10th grade, he taught his father about quantum physics and when his father couldn’t quite grasp quantum physics, he would call him an idiot. He was always helping friends with their assignments. In an academic awards ceremony, his High School principal said “Ian, I have no doubt that you will become a famous scientist”.
Ian had a photographic memory, once on a trip to visit his brother at college, the Rahimi family split up in two teams to race each other through a very large corn maze in the middle of Pennsylvania. Ian, his mother and his sister Rebecca were one team while his father and brother Andrew were the second team. All Ian had to do was to look at the maze map once and said, "follow me". Ian’s team not only beat his father and brother by less than half the time, when Ian’s team exited the Maze, they had set the record for the fastest time through the Maze.
The Rahimi family often jokes that if not for Ian, they would still be in the maze. On a trip to Disney World, again, the family had no need for maps. All they had to do was to be able to keep up with Ian by running after him. He simply knew were every ride and attraction was and had even memorized an algorithm to minimize wait times at various lines.
About a year before Ian got sick, the Rahimi family had been made aware of the SDHB gene mutation that was passed down from Ian’s grandfather to Ian’s father and uncle. Ian’s uncle had been diagnosed with an inoperable fist size Paraganglioma tumor wrapped around his carotid artery. Genetic testing was recommended and it was discovered that Ian’s father had passed down the SDHB mutation to Ian and his sister Rebecca. Oncologists at Sloan Kettering had recommended that family members with the gene mutation undergo annual MRI screenings. In fact, Ian had a screening MRI only 6 months prior to the discovery of his SDHB deficient GIST and had been told that there is no sign of any abnormalities.
Everything changed on October 18, 2013
In October of 2013 at age 17, Ian came home after a soccer game with severe abdominal pain. After going to the emergency room with what his parents and doctors thought was routine appendicitis, his surgeon called from the operating room to report that a grapefruit size tumor on Ian’s stomach had ruptured and bled throughout his abdominal cavity. The tumor, along with 30-40% of his stomach, was removed.
After the surgery in October 2013, Ian’s parents sought out GIST and SDH deficient GIST experts at Memorial Sloan Kettering, Dana Farber, and The National Institutes of Health (NIH). The experts unanimously confirmed that Ian’s tumor was taken out with clean margins; he was young and healthy and would recover well from the surgery. On the visit to NIH on December 2, 2013, they didn’t even do a follow up MRI. They felt that he had just had the surgery in October. No treatment or medication was necessary besides screening MRI or CT scans every 6 months or annually.
They were all wrong!
In late December of 2013, approximately two months after his first surgery, Ian was back at the hospital (Valley Hospital, Ridgewood, NJ) with severe abdominal pain. After five or six days of hearing “we don’t know what’s wrong,” Ian was scheduled for another surgery on December 31, 2013. This time, a tumor measuring 10x15x25cm, another piece of the stomach, the tail of the pancreas, and the entire Omentum, which was full of tumor nodules, were taken out. His spleen was also damaged (partially infarcted) as a result of the surgery. On New Year’s Eve, December 31, 2013, a family friend drove from NJ to Washington DC in a snow storm and delivered Ian’s fresh tumor tissue to Dr. Sosipatros Boikos of NIH at his house. Sosipatros was waiting for the tissue and took it to the NIH labs at midnight. It was a week or so later when Dr. Boikos had completed a genetic sequencing of Ian’s tumor tissue and had discovered that in addition to the SDHB mutation, Ian’s tumor had the KRAS mutation, perhaps the deadliest cancer mutation known to science.
After the surgery on December 31, 2013, Ian tried various medications including Sutent, Mekenist, and Stivarga. While on Stivarga his tumors metastases throughout his abdominal cavity including some on his liver, continued to grow despite the medication. However, it seemed that Stivarga at least slowed down the progression of the disease. In an attempt to very closely monitor the progression of his disease, Ian was getting MRI scans every two to three weeks at the insistence of his family.
Despite his disease and missing most of the senior year of High School, Ian graduated High School with All A’s and all 5’s in 5 AP classes in June of 2014. He received perfect scores in science and mathematics on his ACTS. He was accepted to every major university he had applied to and chose to attend Stevens Institute of Technology, majoring in Electrical Engineering, so that he could be close to home and his parents could care for him. He never missed a class during the first semester of college while on Chemotherapy (Stivarga). Even though he was a freshman he started with junior year classes in math and science. His computer science professor commented that his knowledge of programming was simply more advanced that even graduate students. While Ian was aware of the seriousness of his condition he never once complained.
His parents simply put up a good front, as did Ian, even though watching his frail body trying to carry a back pack full of books up and down the pathways at Stevens, Hoboken, NJ campus was torture to watch.
By this time, “For Ian GIST Project”, under Johns Hopkins’ umbrella was in full swing, $2,000,000 in research funding was awarded to major institutions to study SDH deficient cancers. Ian’s care was mostly under the direction of sarcoma oncologists and surgeons at Sloan Kettering. It was thought, and Rahimi family was told, that Ian like many other children and young adults with SDH deficient cancers, would survive for years. As small tumors would pop up they could be surgically removed or debulked. After all, there were young patients who had as many as 20 surgeries in something like 10 years.
By the time of spring break of his second semester as a freshman (February 2015 when Ian had just turned 19), Ian felt ill again and was forced to stop going to college. He never went back to school no matter how much he wanted to. Ian’s primary doctors at Sloan Kettering made attempts to increase the dosage of Stivarga and even tried, unsuccessfully, a couple of experimental off label drugs and clinical trials. Everyone still felt that worst case Ian could have another surgery to debulk his tumor burden again.
By March of 2015 Ian’s abdominal tumors were visible to the naked eye and could be felt by examining his abdomen. Surgeons and doctors at Sloan Kettering continued to contemplate as to when they should do surgery while the tumors grew. Ian and his family had sought second, third, and forth opinions from Hopkins, Dana Farber, and NYP Columbia. Surgeon Tomoaki Kato of Columbia had recommended surgery as quickly as possible as early as January of 2015. Ian was finally scheduled for surgery at Sloan Kettering for late April of 2015 after 3 or 4 months of precious time had gone by. The doctors and surgeons at Sloan changed their mind regarding surgery on the evening that Ian was checking into Sloan for next day surgery on April 28, 2015 at 4:15pm. "Take him home and let nature take its course" were probably the hardest words that Ian and his parents heard that day on April 28.
Ian was transferred to NYP Columbia under the care of senior Chief oncologist Dr. Gary Schwartz and surgeon Tomoaki Kato. Ian was operated on once again on 5/4/2015 by Dr. Kato. The surgeries goal was to do as much tumor debulking as possible while preserving his Pancreas, Stomach, and left kidney that throughout this waiting had all been engulfed in tumor. While it was possible to totally remove Ian’s left Kidney, Pancreas and Stomach all together, it was felt that such dramatic surgery would not leave him with much of a quality of life afterwards. Ian himself did not want his organs removed. His parents simply did not have the heart to discard vital organs of their beloved Ian. As a result, as much debulking as possible was done, including removal of portions of his liver and the gallbladder, while still preserving the stomach, pancreas and kidney. During surgery at NY Presbyterian, Dr. Hanina Hibshoosh, Columbia pathologist was in the operating room and packed a dozen samples of Ian’s tumor tissue on ice. Dr. Hibshoosh personally rolled out the cart with the tumor tissues to the hospital parking lot where friends of the Rahimi family had volunteered to drive the tumor samples to medical centers up and down the east coast. The hope was that one of these institutions would manage to grow a cell line or successfully produce a mouse xenograft of Ian’s cancer.
After the surgery of 5/4/2015, Ian spent most of his time in bed and was in and out of the hospital. A promising systems biology (bioinformatics) approach, under the direction of Dr. Andrea Califano, to find effective drugs to fight off Ian’s cancer was tried. A drug by the name of Topotecan was identified and it seemed that it actually was very effective against one of the many tumors. However, Ian’s body was full of tumors and it seemed that they had each developed their own characteristics and biology. We will never know what would have happened if the bioinformatics approach had been tried on Ian’s cancer tissue two years earlier. Perhaps, at that early stage a drug like Topotecan or something else would have saved his life.
In August of 2015, Ian left home in an ambulance and would spend the rest of his days at Columbia Presbyterian. During the following months Ian came close to death many many times. He suffered from severe blood loss and required dozens of blood transfusions to keep him alive. There were so many heroic efforts to save him, like the time where the entire staff of a radiology department volunteered to come to the hospital on an early Sunday morning, open up a building, and do some radiology magic to stop him from bleeding to death. Ian was asked many times during the last months of his life if he wanted to continue to fight. His answer was yes. He was 19, he wanted to live and he did not want to give up. As sick as he was, even when he was intubated for weeks, it was still possible to see the innocent child in him, the child who still had hope and would still occasionally smile. From August of 2015 till November 15, 2015, the day that Ian died, Ian’s mother was with him. She never left his side. She never left the hospital grounds not even to step outside of the hospital doors on the sidewalk.
Ian was put to rest at the Menorah Section of East Ridgelawn Cemetery in Clifton, NJ. On the back of his head stone there is an inscription that reads.
Ian loved mathematics and physics. He shared this love with his father. The formula is known as the Laplace Transform and is one of the last mathematical concepts that Ian learned. During one of the weekends that Ian was home from college, while doing his homework, he popped out of his room and told his father “Dad, Laplace Transforms are MAGIC”. This is exactly what his father had told himself 35 years before that. “Laplace Transforms are MAGIC”.
Perhaps, “For Ian Foundation” is for Ian’s love of science. Perhaps, science will help save other innocent souls like Ian.