CANCER
BILATERAL RETINOBLASTOMA
My daughter Sarah
This is the story of our journey with cancer. Before my daughter's diagnosis, I had never been close to anyone with cancer, let alone a child. I never dreamt it would be my child that would have to endure such a trial. I had always been a strong person, but I could never have imagined that this would be so excruciatingly painful. It's been ten years since she has been given a clean bill of health, and I am finally at a place where I can write about this without tears pouring out of me.
My daughter, of course, is okay because she knows it will never come back, so she never worries. We can now look back on many things with laughter instead of tears.
SIX WEEKS OLD
Developing Normally
My daughter's cancer was growing even before her birth, but she was not diagnosed until eight months later. Her type of cancer, Bilateral Retinoblastoma, is a genetic form of cancer. Even though no one on either side of our family had ever been diagnosed with the disease, it will be genetic to her offspring. The geneticist explained there was an error in her DNA when she was developing, and instead of correcting itself, it reproduced the error, which caused that cancer.
SIX MONTHS OLD
Missed Signs of cancer
I had noticed a strange reflection or "glow" in her eye months before, but it wasn't there all the time. I could only see it when the light hit at certain angles. I can only describe it as how a cat's eye looks in dim light. You can see it in the picture. It isn't like me to stay quiet about matters like this; I am not sure why I did. But when I took her to her doctor's visits, I would observe as they performed the eye exam. Surely, if there were something wrong, they would have said something? But I thought nothing of it. Until...
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Until... other people started to notice. Afterward, I scheduled an appointment so the doctor could check her eye.
EIGHT MONTHS OLD
Day of Diagnosis
I took Sarah in for her appointment at three in the afternoon. After a brief doctor check, he looked at his papers and told me he thought it could be a cataract. A cataract? Isn't that for older people? The strange part was that he never looked me in the eye again after the exam. He excused himself from the room for about what seemed like forever, but in all likelihood was only about twenty minutes, then returned and handed me a piece of paper. He told me she had an appointment with a pediatric ophthalmologist specialist at eight am the next morning. I knew that it was very serious. An appointment with a specialist like that usually takes months to get an appointment with. A huge pit formed in my stomach, along with a foreboding sense of dread. Because this doctor could not look me in the eye, I knew he was not the one to give me the answers I needed to know.
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After what seemed like the longest night, I brought her to the appointment the next morning. When we arrived at the doctor's office, people looked at us with sympathetic faces. As the staff looked our way, I could tell they were expecting us, stirring behind the desk and whispering about us. Then, they called us back to see the specialist. I found it harder and harder to breathe with each step I took leading up to the examining room. The doctor got out several instruments with a bright light, and looked carefully at both eyes, back and forth, again and again. After the doctor examed her, he sat back in his chair and took a deep breath. I was not prepared for what he said next. He told us that there were tumors in BOTH of her eyes. As I tried to wrap my mind around that information, my next thought was that we should test for cancer. The doctor told us to go to Children's Memorial Hospital immediately and that there would be a "team" of doctors to meet us there. At that point, I had to ask, "Is this Cancer?" He took a long pause because, even though he thought it was implied, no one, not even doctors, wanted to utter those words, especially to the parent of an infant. "Yes," he replied. He only replied with that one word. I would have fallen to my knees if I had not been in shock. I turned and left without saying a word, just thinking about the urgency of getting to the hospital.
10 MONTHS OLD
Serious Infection; no immune system
We met with a team of doctors at Children's Memorial Hospital in Chicago on the day of the diagnosis. The Pediatric Ophthalmologist and Pediatric Oncologist, otherwise known as the "team." They performed an ultrasound on her left eye, and we could see that her tumor was almost as giant as her eye itself. I was sick. They wanted to remove her left eye immediately, but I said no. Since it was in both eyes and she could lose both eyes, I wanted that to be the last option. I wanted them to be able to do everything possible to save that before removing it. Next, they needed a CT scan, surgical procedure, and start chemotherapy. That all happened within the space of a week of diagnosis. It was traumatic for me to see her tiny body being carried away on an adult-sized gurney for her CT scan, and even more so not being able to go with her. Three days later, chemotherapy started. Eight hours one day, four hours the next six weeks. It was difficult keeping her to hold relatively still for that long while watching her in such discomfort. My only relief came when kind volunteers would come and save her while I could go to the bathroom and cry for a good ten minutes to relieve a little bit of my pain. The doctors instructed me that her immune system would be compromised during this time, so I needed to ensure that she was kept away from germs. I didn't want to keep her cooped up, so we went outside often. We went to the Morton Arboretum, Botanical Gardens, Playground and Parks. I tried to ensure she was kept away from germs and people. I used disinfectant and all the precautions, but she still got sick.
This photo was taken at a park when she was in treatment. Since her immune system was severely impaired or neutropenic, an infection could be life-threatening. Immediately after this photo was taken, Sarah got a high fever, and we went to the emergency room. She had a blood infection. She ended up being in and out of the hospital for the next few months.
TWELVE MONTHS
Nothing can keep her spirit down
This is Sarah at Children's Memorial in Chicago right before she was able to come home. She had tubes and wires from both sides of her metal crib, which looked like a little baby jail. I couldn't pick her up; I could only rub her back at times because she was so weak. Even when she got her strength up, it wasn't easy to pick her up because she was connected to so many wires, monitors and fluids. The fluids had several different, very strong antibiotics cycling through them.
But nothing could keep her spirit down. She could have been in a crib, at home, or anywhere. When she returned home, she has prescribed five different antibiotics infused through her port. I set alarms from six am until one for six weeks. She had a home nurse come in every day.
THIRTEEN MONTHS
First Surgeries at MSKCC and New York Presbyterian Hospitals
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After the six months of chemotherapy treatments were finished, she was scheduled for a break. After chemotherapy had ceased during the next exam, the doctor noticed that the cancer had already started growing again. They again wanted to remove her left eye. I would have agreed if they had guaranteed that her right eye would be saved. They made no promises, so again, I said no. The doctor mentioned a new experimental procedure in New York City. Before she finished speaking at Memorial Sloan Kettering Cancer Center, I knew that was where she needed to go. Getting into the program was challenging, but that is a story for another time.
Now, this procedure was new, experimental, and the best chance for survival and vision in at least one eye in the world. There was no place else to go from here. Speaking to them on the phone, they also offered no guarantees, and they needed to examine her first to let us know if she could have this procedure performed. I was sick with worry as I made plans to go.
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This was her first surgery at New York-Presbyterian Hospital. She received Intra-arterial chemotherapy in both eyes. The surgery was about four hours, and she had to lay flat for five hours afterward to keep her from developing potentially life-threatening blood clots. She was one of the first patients in the country to be treated with this protocol. She would have two more surgeries in her right eye and five more in her left eye. All the doctors said she was the best patient they had ever had. It was truly astounding how brave she was through all the years of her treatment, from beginning to end.
BEFORE ENUCLEATION
Calcified Tumors
Even after treatment, the "white glow" was still there. Now, we are seeing the calcified tumor. If you know a child with a white reflection like this, they need to see a doctor immediately. The typical "red-eye" you see in photographs is normal; however, the "white eye" is not normal and could signify cancer. If cancer had been defeated at this point and she had been able to keep her eye, all of her pictures would have had this glow.
EYE ENUCLEATION
Two Years Old
After two years of treatment, my daughter's cancer was once again very deadly. It was growing and about to spread. At this time, a feeling of peace entered my heart to let me know that it was now essential to remove her left eye. I held my sweet baby girl in my arms, walked her down the hallway towards the operating room, gazed deeply into her big brown eye for the last time, sweetly kissed her on the cheek, and handed her over to the nurse. After the doors closed, I broke down and sobbed. She woke up the next day like the child she was always meant to be, free of pain and discomfort. A few weeks later, when I took off the bandage and she realized for the first time that she couldn't see, she grabbed me tightly around the neck and quietly wept. Then she pulled away, looked at me, smiled, and ran into the next room to play. She was two years old.
This picture was taken in the recovery room after Sarah's left eye was removed at Memorial Sloan-Kettering Cancer Center (MSKCC).
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Before planning the surgery, I tried to prepare Sarah as best I could. The doctor told me to explain what would happen, but I don't think I explained it very well because all she did was laugh at me. She says I have a hilarious, serious face. I'm not sure that's true, but I'll take her word.
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AFTER EYE ENUCLEATION
The Life of the Party
Life is funny. All this worry, angst, and trepidation about what her life might be like were utterly meaningless. It was such a relief to see that she was who she was truly meant to be. It was fun getting to know her. She is full of life and so was so stubborn.
This picture was taken at a ball planned for us by The Ronald McDonald House of New York not too long after the surgery. She had just received her first prosthetic eye. I was excited to dress her in her fancy dress and beautiful shoes. But of course, she didn't want to wear those shoes. No, she wanted to wear her sneakers with her dress. And I thought, why not? She should be a silly little kid running around being normal. I didn't have to worry about the headaches, the pain or the night terrors. I got my child back, and she is beautiful!
TWELVE YEARS OLD
Wise Princess
Well, there is certainly something in a name! In Hebrew, Sarah means princess and Sophia, her middle name, means wisdom. She is my wise princess. Sarah is a straight-A student enrolled in several advanced classes, striving to be excellent at coding. She also has a beautiful sense of humor, and we have much fun together. She is a mini-me, so we get along like two peas in a pod.
OCULARS
So What does a "fake eye" really look like?
The process is quite remarkable. My daughter sees a dentist for her prosthetic. Why a dentist, you may ask? Because oculars are made of the same material as dentures. He works with a fabulous artist who looked at Sarah's eye for three or four minutes, then perfectly matched her eye color. She hand draws each ocular meticulously with the minute detail of the tiniest capillaries and the slightest shade of blue or red for the sclera. When you are younger, your sclera, rather than the white part of your eye, has a blue hue, and as you age, it becomes redder. Because of that, my daughter will have many oculars throughout her lifetime.
PEDIATRIC CANCER AWARENESS MONTH IS SEPTEMBER
Gold Ribbon
The Gold Ribbon is the symbol of pediatric cancer warriors. Those brave boys and girls, who are angels among us. I have had the pleasure of meeting many children with cancer and their families.
