Who does not like getting gifts? Unwrapping them, some carefully, to preserve the wrapper as a memory, and others, just ripping apart in anticipation of the real thing inside. As I start writing this piece, the irony of my thought makes me laugh- I love surprises but I hate being unprepared…really, talk about being confused! But that is not something new- in 2007 I was sure I was going to study literature before I opted for PCM and B; in 2009 everything lead to Electrical and Electronics Engineering in BITS, Pilani before I announced that I had decided to be a doctor; in 2015 I was, almost, on my way of becoming a Paediatrician before I, suddenly, took a U-turn towards the eye and in 2018 I was working my way to be a Paediatric Ophthalmologist before I switched to Ocular Oncology.
And so Ocular Oncology it was. February 4th is World Cancer Day, not to celebrate the Emperor of Maladies but to create awareness. And as I was going through the photos on my phone to select an appropriate one for the occasion, I found pictures of the many gifts I got during my Fellowship. So here are some of them…
The Gift of Confidence
During fellowship, we had with us an emergency phone, called the Fellow Phone, where patients would call, message and send reports. It was passed down from fellow to fellow, and with it came great responsibility. One evening, I saw multiple missed calls from a patient. Like majority of the times, the number was unknown and I called back and found out that it was the father of Piku, a two year old child with retinoblastoma (eye cancer). He was calling from Patna. She had been given an injection of chemotherapy in the eye (intravitreal chemotherapy) the day before and she was refusing to open her eye since then. “She seems to be in pain,” he said. I hoped against hope that it was not what it seemed like. Endophthalmitis or infection inside the eye is one of the most dreaded complications for any eye surgeon. It can happen after any eye surgery including injections inside the eye. “Take her to the nearest eye doctor in your city and let me know what they say,” I told him.
I had given her the injection. That night, I lay awake retracing over and over again my steps during the procedure. This was not the first time that I was doing it and I knew the aseptic precautions to be taken. But Piku had only one eye, the other eye had advanced cancer and needed eye removal. This was her only seeing eye, though the cancer was gone. This injection was supposed to be her last one, like a good luck injection to take care of any subclinical active disease. And now, because of the injection that I had given her, she may lose vision in that eye. I got up and wrote down the steps and paused at each to think where I might have made a mistake. I could not figure it out. What did I miss? Doubt has an uncanny way of growing rapidly like a weed. By next morning, I had formed a plan about how this needed to be treated. Throughout the clinic, I kept checking the Fellow Phone to see if there was any news of Piku. Once clinic was over, I decided to call the father before going to Sir to apologise and tell him that I should not be allowed to give any more chemotherapy injections in the eye for the rest of my fellowship. The phone rang for what seemed like hours before he finally answered.
“How is Piku? Did you visit the doctor?”
“Piku is fine, she opened her eyes later at night. We did go to the doctor today morning, he looked at the eye and said everything was fine.”
“Is there any redness? Is she still in pain?”
“No, she is absolutely normal, eating, playing like any other day,” he replied.
“Ok, that is good. But you could have at least told me, I was waiting for a call from you the whole day.”
“Oh sorry, we just forgot about it, I should have informed you.”
So, I did know what I was doing, I did not miss anything, I thought to myself, before falling asleep that night. But since that day, I repeat the steps in my head before starting the procedure. I make sure I do not hurry up, I double check the needles, the drugs and the doses…and I trust myself.
The Gift of Wisdom
"My girl’s coming for examination under anaesthesia today, please tell me when she is here," I tell Subbu Sister on one Tuesday morning.
Mishti was now four, but she was just nine months when she was diagnosed with retinoblastoma in both eyes. She was treated with intravenous chemotherapy where the drug goes through the whole of her tiny body, intra-arterial chemotherapy, where the drug is injected directly into the artery of the eye, multiple intravitreal chemotherapy, laser to the tumours in the eye and cryotherapy where the tumours are frozen to kill the bad cells. She was doing well, her tumours were all regressed and she was being followed up every six months.
I confess, she was my favourite. I always went to meet her in the waiting room before she was taken in for anaesthesia because every time she came, she would bring with her a new story book and a new toy. And she was like a doll herself. Unlike most other kids who were carried into the examination room by Krishnaiah ji, crying and screaming, Mishti would walk in holding my hand and with her book in the other hand.
“Doctorji, Mishti has come,” Subbu Sister and I winked at each other as I ran out to meet her. She was wearing a unicorn mask with a book open on her lap. “Mishti, which book is it this time?” I sat down next to her. Her mother smiled, holding her stuffed puppy. She knew me and each time I would tell her that we may not meet again when Mishti came back next time, but COVID made sure that I was still around! And I am glad for it…
“Noddy,” she replied. “I love Noddy, and Big Ears and Mr. Plod!” I said, remembering my Noddy collection gathering dust in my bookshelf at home.
“So, what did you do during the holidays?” I asked her.
“I became intelligent!”
My mask just about hid my jaw drop! I was stunned! If only grown-ups were this sensible. I gathered my wits and as I walked back with her into the examination room, I realized that this time, it was the four-year-old kid who was actually leading me, I could only follow.
Before she left that day, I took some pictures with her because I knew for sure that the next time I would not be there. “No, do it like this,” she told me, puckering her lips into the perfect pout.
“This is for you. Bye bye,” she left me with a pack of Little Hearts, while she took mine with her.
The Gift of Warmth
“Doctorji, Priya has diarrhoea and she is vomiting. She has not been eating since the last five days,” the father was talking hurriedly over the phone from a village in Uttar Pradesh.
“Since five days? Why did you not call me before? Have you shown a doctor? Did you get the blood test done after her last chemotherapy?" I asked.
“No, not yet.”
I told him to take Priya to a paediatrician immediately and sent him a list of tests to be done.
Priya was eighteen months, her right eye had retinoblastoma which had recently recurred. She was started on a high dose of systemic chemotherapy. Most children tolerate the chemotherapy well. There are some precautions which need to be taken, blood counts monitored, and regular follow ups with us as well as the paediatrician. But this is, often, not possible for the patients, who come from interior parts of the country.
That evening, the father sent me the blood reports. They were severely low. “She needs to be admitted immediately. Do not waste any more time. Take her to a hospital that has a paediatric intensive care unit. She needs antibiotics, blood transfusion and injection that will increase her white blood cell count. Tell me her weight, I will send you the doses. Show it to the doctor there. I will speak to our Oncologist, Dr Reddy, and let you know if anything else needs to be done.”
She was admitted in a hospital in Lucknow. I was talking to her doctors almost twice a day, getting her daily counts and updates on her condition and treatment. She was not doing well.
“Doctor bol rahe hain ki haalat bahut kharab hai. Doctorji kuch kijiye (Doctors are saying she is very ill, please do something)," the father pleaded over the phone. What do you say to a father, 1200km away, when you already know from the reports that the situation is grave?
I tried my best to console him, “The doctors there are doing everything they can. I am in touch with them.”
I remember the next ten days and nights, talking to Sir, our oncologist, the doctors in Lucknow, the parents…and the situation was just getting worse every day.
It was the tenth night, the father called me, sobbing uncontrollably. “They are saying Priya will not survive, they are saying we should take her home. She is our only child, we will die if something happens to her, we cannot live without her.” Then he handed the phone to his wife. The mother only sobbed on the phone, she said nothing. I do not know how much time passed when neither of us said anything. Then I started talking. It was a blur, I do not know what I said but I kept consoling her. Later I spoke with her doctor. And I was going to call up the father again when my co-fellow stopped me. “Stop it, you have been doing whatever you can for the last 10-12 days. Sometimes you have to let it go, this is going to happen, you cannot be so involved with every patient. Why are you getting so affected by this?”
“I don’t know. But I have to talk to them,” I just went into my room and shut my door. In the last seven-eight months that the Fellow Phone was with me, three children had died. They had very advanced disease that had spread to other parts of the body and every possible treatment had been tried. We were all prepared. But I knew their names, I knew their families, I knew what they looked like, I knew the tumours in their eyes, I knew their smiles, I knew their charts and I knew every word I had written in them noting their death and cause. I cannot have another one. Priya’s parents always came on time, they never missed an appointment; they were poor but they always kept the child neat and clean; they were soft spoken and this should not be happening to them. I spoke to the parents multiple times that night.
Day 12, her counts improved. By day 14, she was accepting oral feeds and talking again. We had survived.
It has been over one year now, Priya is doing well. After one examination under anaesthesia, the father came to me, “I have got something for you, I have kept it in the counsellor’s office. I did not give it to you directly because I knew you would not take it.” Before leaving the hospital that day, I picked up the packet from the office and opened it after reaching home.
It was a red woollen sweater with flowers knitted on it. I immediately called the number that I only knew too well. “Kya hua Doctorji? (What happened Doctor?),” the father sounded surprised.
“I loved the sweater, thank you so much.”
“Oh, thank God. We got scared when we saw your number. We thought it was about Priya and that we had to come back for something, we are in train now,” he said. “My wife made this. Did it fit you?”
“Perfectly. But there was no need for this.”
“You saved Priya. Our daughter is our world. This is the only thing we can give you, we don’t have much.”
“I did not do anything. It was all because of Sir, Dr Reddy and your doctors in Lucknow. All I did was talk on the phone.”
“You were there for us when we had nothing to hold on to. We can never forget that. We trust you.”
The Gift of Joy
Sujit was four, had retinoblastoma in both eyes, a Bong, wore round glasses and talked non-stop. His left eye had been removed elsewhere before he came to us. The tumour in his right eye was highly resistant, and had recurred multiple times. He had received every form of chemotherapy, laser and cryotherapy. He had been stable for more than a year and a half now and we had shifted him to Saturday schedule, when we would examine all the stable kids. On one such Saturday, I played with him in the waiting area for a long time. He recited poems and we recorded his video. He showed me all his toy cars and told me about his friends in school.
When I started examining his eye under anaesthesia, my heart sank. No, no, please no. I went back to the pictures of his tumour taken in the previous visits. There was no doubt, it was a recurrence. Sir was in a conference in another city. There were only two stable kids scheduled for examination that day and he knew I could handle that. I messaged him the pictures and told him I was going to laser the area of recurrence. This was the relatively easy part. Then I had to go and talk to the parents. I spoke to them at length in Bengali. I explained to them that it was a small area of recurrence and could be treated.
The next couple of months, Sujit was treated with laser, intra-arterial chemotherapy, intravitreal chemotherapy and, finally, plaque radiation, a form of local radiotherapy. For all these examinations, I made sure that I did not talk or play with him in the waiting area. “You don’t go out there, every time you play with someone, that child gets a recurrence,” I said to myself.
Then during one such visit, I was outside checking the file of one of the patients. Suddenly he came running to me, “Didi, it is my birthday tomorrow.” Why, oh why, are you talking to me now??? “Really? How old are you going to be?” I asked, trying not to look at him. “Five!” This is really hard when he’s holding out his palm, showing his five fingers. I turned to the mother and we smiled nervously at each other.
When he was being put under general anaesthesia, I could feel my pulse racing. I took a deep breath and put on the ophthalmoscope to examine him.
It was gone, his tumour had regressed. He was fine!!! I had never felt happier.
While Sir was examining him, I slipped out of the room to the mother who was sitting outside with her eyes closed and hands folded in a silent prayer. I held her hand gently and she opened her eyes, “He’s fine,” I whispered quickly and went back in before Sir came out to talk to her.
“Doctorji, Sujit is leaving,” trust Subbu Sister to get that news to me. I went and caught them at the door. “Hey big boy, happy birthday! What do you want for your birthday?”
“A big car, and a BIG cake,” he spread out his little arms open.
I gave him a tight hug as he gave me the biggest grin! I was ready to play in the waiting room again.
The Gift of Peace
Devrat was ten when I first met him. He came to the OPD, with his father. He smiled and wished me good morning. When I looked at his file, I came to know that he had undergone enucleation (eye removal) of both eyes when he was just an infant for advanced retinoblastoma. Before I could help him take out the prosthetic eyes, his father said, “He can take them out and wear them himself. Devrat, take them out, beta.”
Devrat took them off effortlessly. As I was examining him, he started talking. He went to a boarding school. He had come home for the summer holidays but missed school and his friends. He liked mathematics, learnt classical music, played the harmonium and tabla.
When I went out to keep the file for Sir, before he came in to examine him, I saw him smiling. He had been listening to our conversation. Devrat was his old friend. He told me that it was a very difficult decision and it was the only option at that time for such an advanced disease. The father had understood. His mother committed suicide when she got this news.
What is it that keeps them going? What power within pushes them to jump over all hurdles and emerge winners? I think the day you stop fighting with yourself, you are at peace and are ready to fight any other battle that comes your way.
We went back into the room. Sir finished his examination and asked him to come back after a year.
“Can I sing something?” he asked.
“Of course, I would very much like to hear it,” Sir said. He started singing “We shall overcome” in Bengali, Hindi and English. I could not help but sing along with him.
The Gift of Optimism
It was January 2020 when Tibby came to us from Zambia with his mother. He was two and a half years old and had a sudden history of bulging of his left eye and eyelid swelling. He was the last patient in the OPD and even the clinical photographer had left for the day. So I had taken his clinical pictures on my phone and I still have them. Tibby was a force to reckon with. He was so playful and energetic that it was difficult to keep him still for the examination. If I remember correctly, he did tear out the cover of the handle of the examination chair. But he was superiorly intelligent for his age. Over the next few days, we met several times as he got some scans done and then underwent a biopsy. This turned out to be a Rhabdomyosarcoma, another common and deadly cancer in the orbit of children. He took the first few cycles of chemotherapy in India and then went back to Zambia for the next two cycles. We sent the chemotherapy protocol to the doctors in Zambia. He was supposed to come back to India for the last cycle of chemotherapy followed by surgery and then radiation. But nobody was prepared for what happened next- COVID-19.
Tibby was stuck in Zambia, there was no way that he could come here. And the further treatment could not be done there. Being an international number, I always communicated with him using my personal number. It was the beginning of the pandemic and I sent letters to the Indian embassy at Zambia for his travel exemption on medical grounds. But there was nothing we could do. We decided to continue him on chemotherapy till he was able to come back to us. At that point we thought it would be within a month or two. But alas, that was not to be. All this while, his mother would keep me updated about his condition. And I would send the chemotherapy protocols according to his changing height and weight. The mother would send me his pictures, he was growing up. All his pictures had a bright smile. Whenever I spoke to the mother, she always ended the conversation with, hopefully we will be able to travel soon. Yes, hopefully. It was as if she was assuring me rather than the other way round.
They, finally, made it back to us after almost six months. Since then, he has undergone all the necessary treatment. Little Tibby had grown up and I would always end up cheating to get his chart in the clinic, making sure I got to meet him. While in the OPD room, I had to keep him engaged in some sort of game so that he would let me examine him- thumb fights, hand slaps, arm-wrestling and so on. But strangely, he was always docile when Sir would examine. I wonder why? Did he see me as an easy target to try his tricks or did he have fun with me like I did?
When they first returned from Zambia, after travel restrictions were lifted, his mother had got two gifts for me- one a beautiful traditional top, and another a cup with the map of Zambia. For me, the colourful top is a reminder that a long winter is always followed by spring. And the cup I will fill up with fallen stars for a rainy day.
Eye cancer is real and can happen in children and adults. What is important is that parents, paediatricians and general ophthalmologists know the common signs and symptoms of an underlying ominous condition for timely referral, early diagnosis and optimal management. A white appearance of the pupil, especially in flash photographs and in sunlight is the most common sign of retinoblastoma. This is a form of cancer that can be treated successfully with excellent life salvage.
Call it accident, whim, serendipity, or fate, I do not think I have been able to give a strong reason for any of the decisions I made to even myself. But I like to believe that I had the privilege of choice and the independence to choose and, for better or worse, I have only myself to thank or blame for it. It may have been a winding road, but I found my calling and I am thankful for it and for all the gifts that I received on the way.
MS
