On November 10, 2000, three weeks before Thanksgiving, our son Sandy, at three years old, was diagnosed with Stage 4 neuroblastoma, a very aggressive childhood cancer (adrenal, right above the kidney, not brain despite the name). In the ER of Johns Hopkins Medical Center that Friday night, a medical resident informed us of his cancer and shared that the survival rate was about 10% (maximum) in three years.
Immediately after his admission, his bowel was “cleaned out”, as the large cancerous mass had been obstructing the bowel, causing him to have his unexplained back pain for several weeks. A few days later, the intensive treatment regimen commenced, with multiple courses of chemotherapy prior to a six-hour surgery to remove as much of the mass as possible. We were told it was like a spider web with multiple tentacles attaching to the surrounding areas. Then came more chemotherapy and an autologous stem cell transplant. A catheter was placed into a vein in his neck to collect his stem cells. He couldn’t move his neck for three days. There were not enough stem cells, so the doctors had to “tap” his hip for more. Several weeks after the transplant, he underwent 14 rounds of radiation therapy.
After the protocols at Johns Hopkins were completed, we took Sandy to Memorial Sloan Kettering Cancer Center (MSKCC) in NYC, where he underwent almost two years of what then was experimental treatment with murine (mouse) “monoclonal antibodies”. Every three weeks, we would stay in NYC for two weeks, where Sandy received his treatment during the day. We three stayed at the Ronald McDonald House in the Upper East Side of Manhattan, among the most expensive areas in NYC. It was 2001, during September 11, that he was in the middle of his treatment at MSKCC. During this treatment and while home, we received permission to give Sandy oral doses of Retinoic acid (at that time, another “experimental” treatment thought by some to calcify remaining active tumor cells “hiding out” and/or circulating in the body).
Thirteen years later, Sandy is the only Stage 4 neuroblastoma survivor of Johns Hopkins from that year. The few children we got to know at the time all died, some even younger than Sandy.
Why do I share Sandy’s story? Because it will help you understand why we have learned a great lesson of gratitude. This horrendous experience has “reinvented” our lives and helped me see the truth about the world around me. It has helped me navigate through the maze of life with more ease. It was like singing the song “Amazing Grace”, when you realize even with your clear eyes, you can go through this world like a blind person, and as you come out of your hardship or tragedy with, hopefully, more wisdom, you wonder how you could have been so blind?
“I was so lost, and now I’m found,
So blind, and now, I see”
I remember how I was so “burned out” with my job before Sandy’s illness. I was wishing I could take a very long break from work and “chill out”. I got out of the office every day feeling as if I had been in a battlefield, seeing so many patients, doing so many deliveries, listening to so many complaints from patients about their lives and medical conditions, and the job never seemed to end. As I was looking out of Sandy’s hospital room window one day, during the three weeks after his stem cell transplant, I remember telling myself:
“Never again will I complain about my job or my life. This is the worst of the worst! I hope someday I will never have to see the same view, the roof of another hospital wing, from the window of a cancer ward”.
I even took a photo of the roof of one of the adjacent medical buildings so that someday, if I happen to forget the experience, the photo will remind me of how dark our life was at the time.
Several months into Sandy’s treatment at MSKCC, September 11 happened. It was the week he was supposed to come for his treatment. His admission was delayed for several days, and as all the airports in New York and our area stayed shut down, we had to take him to NYC by train when MSKCC was ready to restart his treatment.
As the train was approaching NYC a few days after September 11, I could see the aftermath of this tragic event that transformed lives nationwide. From the windows of the train on the Saturday after September 11, the passengers and we were gasping as we looked at the smoke still rising into the air from the collapsed towers. As we got off the train, I cradled Sandy in my arms and walked around the train station with our luggage. I couldn’t leave the station right away, because I was transfixing my gaze at hundreds of leaflets from people looking for their missing loved ones. The faces of the missing people were so real and lively, so young and happy. They all were there on September 10, and all vanished the day after. On Sunday, David and I took Sandy for our usual walk in NYC, whenever we both could be there, to prepare ourselves for the Monday treatment. We wandered to an area where yellow tape was blocking the sidewalk around a big building, and a curious crowd was huddling across the street. Everybody was quiet and solemn, as the police were guarding the entrance to the building.
“Excuse me, what is going on?” I asked a young man standing next to Sandy’s stroller.
“You are looking at the morgue”, he said perplexed, probably wondering if we were from Mars. “They are bringing the bodies in.”
Suddenly, we noticed the stretchers carrying bodies draped in white sheets. We didn’t even know we were wandering past the morgue. I was shocked to see this scene live! Who would have thought those healthy people would be gone before Sandy?
It has been thirteen Thanksgivings since Sandy was diagnosed with cancer. He has, fortunately, little memory of that time, except for the “fun” memories of the parties in the evenings or on the weekends at the Ronald McDonald House, the game room in the basement of the house where he played “ Pacman” and “Tetris”. He remembers his favorite restaurant “Teriyaki Boy” around the corner from the Ronald McDonald House where often we ordered shrimp tempura and sushi after midnight. The memories and side-effects of his cancer treatment have been reduced to his numerous facial moles, his petite stature and his high pitch hearing loss, for which he wears hearing aids to school. He has some vague memory of the giant radiation machine rotating around him, but has no memory of how much pain he endured during the hour-long IV injection each day of the monoclonal antibodies.
As for me and David, we remember the first “free” weekend after the whole treatment ordeal was done. I wandered around our yard and marveled at the sense of freedom I felt. What should I do now that there were no more hospital days, no more admissions after midnight from JHH ER for some vague fever or symptoms of abdominal pain, no more visits to the Interfaith chapel on the first floor of JHH pediatric building where I would sit alone staring at the words painted around the wall of Psam 23.
Since that time of recovery, I have learned to be grateful for all the “little” things in life which are no longer “little”: a run in the neighborhood on a spring day, the sliver of the moon above the trees as I look up through the skylight in my bathroom, the sunrise on the Chesapeake Bay and sunset from the breakfast room window of our Potomac home. The magic of life is no longer ignored. Gone is the “need” for another dress or an expensive purse. Gone is the gossip over trivial things and the judgements I used to make about others. Let people be free to stretch their wings for the limited time they are allowed to fly, I now believe, as long as they are not hurting our flight.
I no longer rush by the posters of children with cancer. I let them stop me on my path and I look closely at their eyes, those without brows or lashes. They remind me of Sandy’s haunting look in the middle of his transplant. Pediatric cancer is such a dark world that only a few of us have experienced, but it changes you for the better whatever the outcome. You get to see how amazing the endurance is of these unfortunate kids, as they take every day of their life with full intention. They screamed in pain with the monoclonal treatment during the day, but danced away in the evening with music as their parents stood nearby to make sure they didn’t fall from the dizziness of the residual morphine. We should live the way these children live, taking life as it comes and making the most out of it, since tomorrow is not guaranteed.
We now participate in various charity activities, not just to give them money, but to actively participate. Now and then, we provide meals to the Children’s Inn at NIH, a house similar to the Ronald McDonald House where sick children and families stay during their treatment. We participate in charity projects not so we will feel “good” about ourselves, but because we are grateful for what we have and because the charities and the recipients remind us of our good fortune. Being grateful, as many social scientists would tell you, is essential to one’s happiness. As I serve meals to the families at the Children’s Inn, I remind the parents to cling to their hopes. Look at our son, I tell them, he beat the 10% chance given to him in the ER that terrible Friday night. When it comes to your child’s survival, as one of my patients wisely told me at the time, it is either all or none; the overall percentages are meaningless.
Every Thanksgiving since then, I take a moment and think of all the sick children we knew at the time who died along the way, of “Little John John” who loved hot dogs, or Matt who loved to run with his dad. I remember Jasmine’s mother who, on the last day Sandy was at MSKCC, stopped me in the waiting room of the clinic, sobbing in my arms:
“Jasmine’s cancer has come back. They just found it again on the PET scan. Why did it happen to her? She’s younger than your son! She was supposed to do even better.”
Neuroblastoma is an interesting childhood cancer, with the younger children (under age two) having a better prognosis. Some patients are newborns and their survival rate can be greater than 90%. The children diagnosed at age 3 or even later have a different type of neuroblastoma with a much worse prognosis.
I didn’t know what to tell one mother whose father was the President of the Pediatrics Academy that year, and whose daughter was two years younger than Sandy. The child’s mom was an OBGYN resident at the time. Her daughter died too, despite all the best of care. Was it luck, or was a stronger immune system that saved Sandy, or was it true that it was a “woman angel” he claimed visited him twice in our Potomac bedroom who gave him life?
“She said she took my cancer away” he told me twice during his treatment at MLKCC.
Somehow, deep down, I still don’t want to think it was an angel who saved him. I believe in equality and fairness when it comes to angels and God. They should not be allowed to select which children are saved or which parents and patients need to suffer more. I have always had a hard time believing in a “master” plan that we cannot escape. Rather, I have the notion of free will and of randomness meaning things just happen because they happen, not because a higher being likes to give us what he thinks we can bear. It defeats the purpose of teaching us a lesson if he truly thinks we can bear this burden. Why would God “design” for a certain child to have such a horrendous fate? It’s like a parent who would stick his child’s hand into the fire to teach him a lesson of heat? I leave this debate to the heads of the religious sectors since it is too complicated for me to comprehend.
We now have healed from the Thanksgivings of 2000 and 2001. Sandy has become a typical teenager who’s rebellious and testing his freedom. He’s a tenth grader going to a Quaker school where he gets to participate in numerous community service activities. Twelve September 11 anniversaries have come and gone since 2001. In an album at home, we still have a photo of the three of us standing on our friends Phuong and John’s balcony, with the twin towers in our background, three weeks before September 11 happened. Several pages later in the album are photos of the ground zero aftermath just a few weeks later, with the bright lights at night and nothing left but a mess of metal and many spirits. Who would have thought back then that our lives would still be whole more than a decade later?
Yesterday, after office hours, I rushed to Sandy’s school to watch his junior varsity basketball team play against Gonzaga. Sandy begged me earlier that morning not to come since he knew his team was going to be “crushed” by the Gonzaga athletic students. At first, I was hiding behind a big white column on the top floor of Sidwell Friends’ athletic building looking down to the basketball court. I was darting left and right behind this column to follow the scrimmage games until, at one point, I realized Sandy was looking up and saw me. I knew I couldn’t hide anymore and came out to stand with the rest of the parents to see the rest of the games. It was fun to see him run so fast, although he was the most petite player on the court, almost half the size of the tallest kids. All the Gonzaga kids were very tall. The Sidwell Friends players, on the other hand, came in different heights, as I jokingly told my friends and family how Quaker schools believe in “diversity” even “height diversity” in basketball.
As he left the building with me, he didn’t complain that I came to see his team lose. Instead, he quickly told me how the games and scores must have confused me.
“It was not the real game, Ma. We weren’t so bad” he said happily.
I didn’t want to tell him how, thirteen years ago, we didn’t even think he would grow old enough to have the chance to play Junior Varsity basketball. It’s not all about winning the games in life; it’s about the chance to participate in those games and try to do your best. My motto since that dark year, to Sandy, has always been:
Be Happy, Be Strong, Be Smart, Be Kind, and Be Very, Very Grateful!
Have a Peaceful Thanksgiving!