Stories of ICRF: Sisi Kleiner-Fisman

 

Can you put into words your feelings regarding Sisi’s life now as a typical child enjoying her life?

There isn’t a day that goes by that I take for granted “normal” mundane daily life. Going for a walk around the block with Sisi and our dog; grocery shopping or working on homework together. A life looking forward and not wondering if there will be a future. Practicing piano daily and hearing Sisi progress and working through challenges; providing pep talks and reminding her to persevere, like she has done before on a scale nearly incomprehensible for most. Helping with math homework, watching her play with her friends in the park on a Friday night and then going for ice cream. All the little things that when you are ill, aren’t really possible, as the priority is simply surviving from day to day, and coping with fear, pain, and the ever present elephant in the room, cancer, and the toll it may take. I wake up every morning remembering what is now behind us and savoring instead the possibilities in front of us. Despite the fact that hopefully cancer and its effects are in the past, Sisi carries with her now innately, as part of her being, compassion, gratitude, empathy, and joy which the very difficult journey she faced left as its legacy and which she extends to everyone she meets.

Please share what Sisi’s battle with cancer was like.

There were some very dark moments during the nine months of diagnosis to completion of chemo between July 2015 and April 2016. Probably the greatest shock occurred with the diagnosis. I have two other children with disabilities. When Sisi was born she was my “miracle child” born unexpectedly when I was 42. Aptly, she was named Siena “Shai,” which means gift in Hebrew. I was in a state of shock and literally couldn’t understand how this healthy three-year-old child could actually have cancer. She went directly from the outpatient clinic to being an inpatient at Sick Kids for three weeks. Her tumor was so large it was compressing her airway and when she slept she had apnea and was desaturated to very low oxygen levels. I will never forget the middle of the night transfer to the ICU where she remained until the chemo started shrinking her tumor.

The long days as an inpatient were truly the darkest days that I could ever imagine. Rather than enjoy the beautiful summer sun, going to the splash pad and delighting in the simple joys of life, we were trying to get through hour by hour, managing nausea, fevers, hair loss, sadness, exhaustion, and fear. We shifted focus to survival mode, hour to hour. Getting through each day was a victory. We were told that over time, living with cancer would become our new “normal.” Somehow that was true. Our daily life consisted of chemo, preparing for radiation and prepping for travel, monitoring for side effects, including neutropenia and fevers, and learning strategies to avoid side effects.

It was recommended for Sisi to have a prophylactic feeding tube as she would not be able to maintain her oral intake and indeed lost 20 percent of her body weight. She refused to eat much as she simply had no appetite and all food tasted awful. I knew that Sisi wouldn’t tolerate a feeding tube and so I was on a mission to ensure her daily intake, counting calories for every item that entered her mouth. There were days that my journal contained “three sips apple juice, four potato chips, three licks of cotton candy ice cream.” However, with each cycle, we envisioned Sisi winning against this cancer and preliminary scans indeed showed a remarkable response to chemo. We were counting down the days, crossing every day off on a calendar.

We were so fortunate to have the best possible oncology team supporting us in every possible way. Dr. Malkin [Chair of the ICRF Scientific Review Panel A and an International Board Trustee], Sisi’s oncologist not only is an expert in his field, but additionally, he is simply a gem of a human being, which was the single most important factor that contributed to Sisi’s success. The combination of the world-class treatment we were provided with the compassionate, person-centered care from Dr. Malkin and his team, resulted in Sisi and I trusting Dr. Malkin. We knew that Sisi required the difficult treatment and that Dr. Malkin and his team were on this journey with us and would do everything possible to keep her safe and healthy and allow her to grow up and have a future. Dr. Malkin’s honesty regarding the gravity of the situation, coupled with the unwavering kindness, support, and expertise, got us through the darkest days.

Though Sisi has now graduated to the “long-term survivors” program and is no longer followed by Dr. Malkin, he will always hold a special place in our hearts for having saved her life. While Sisi still has some hurdles to conquer as a result of late effects of radiation, this is a small price to pay for the gift of her life. She plans to be a human rights lawyer and I have no doubt she will achieve her dreams and will impact others knowing what it is like to be vulnerable and in need of representation.

I know that investing in researchers like Dr. Malkin and other world class physicians supported by ICRF, there will come a day when cancer will be treatable and survivable for many.

Galit Kleiner, Sisi’s Mother

As a physician, can you speak about the importance of cancer research in finding cures and treatments for patients suffering from this dreaded disease?

I am a neurologist specializing in Movement Disorders, a field dedicated to caring for patients with neurodegenerative diseases. I now know personally and professionally what it means for patients to need hope in their journey with disease. If not for the advances of science and the breakthroughs in medical research, Sisi would not be alive today. Any cancer is devastating, but pediatric cancer is especially horrible.

In the last several decades thanks to the tireless efforts of cancer researchers and clinicians, children and adults alike are now surviving what once was inevitable death. It is conceivable that with an ongoing commitment to funding innovation, more breakthroughs will occur that will lead to more lives saved with less side effects and better outcomes. Precision medicine is on the brink of delivering customized targeted treatments to future generations afflicted with cancer. I know that by investing in researchers like Dr. Malkin and other world class physicians supported by ICRF, there will come a day when cancer will be treatable and survivable for many.