My Child was Diagnosed with Eye Cancer: Sharing of a Doctor Mom

Dr. LO Shing Yen, Christine

Specialist in Radiology

I come from a family of doctors. Before I began medical school, my mother, also a specialist in radiology, told me about her own experience. She said one professor early on explained so many areas of medicine are taught because one never knows what one might need to know when attending to one's patients. Never in my wildest dreams did I anticipate this would be so applicable to my own life. 

While playing at my in-law's house one day last December, I noticed my 23-month-old son Julian’s left pupil appeared white instead of black while he was looking at his toy car. Eager to investigate further, I attempted to replicate this phenomenon but to no avail. The next week, I noticed it again. One of the tidbits I remembered from medical school was that a white pupil is ominous. Unable to sleep or to shake this from my mind, I decided to try to use the force flash on my iPhone to see if Julian still had what we call a “red reflex” (the reddish dot on the eyes that we used to see with old cameras). If it was still present, it would suggest his eye was okay. When we tried it, the two dots were evident suggesting all was fine. Still, I couldn’t shake off the feeling that something was wrong and was determined to investigate further. We tried to use the ophthalmoscope at home to see if we could elicit any sign of a mass. Again nothing abnormal was evident.

The week before Christmas, I took Julian to see a paediatric ophthalmologist at HKSH. At first, she didn’t detect a mass on the ophthalmoscope either. To be certain, she said we needed to dilate his pupils. It was a struggle to get the eye drops in, and of course my not yet two-year-old son cried. Little did I know that this would be the first of many tears and other difficult times to come. Little did I know that this would be the first of many dilating eye drops he would need to get. The first of many times he would need to be restrained over the coming months. The first time little Julian would have to try and be as still as possible while having his eyes examined. The first time he would have to sit with blurry eyes while waiting to be checked again.

The doctor examined him, and as the minutes grew in number, so too did my fear. Finally she turned to me and confirmed my suspicion: Julian had a mass in his eye - he had eye cancer! My world crumbled. It was my worst nightmare as any parent can confirm: my baby had cancer. I was in disbelief. As I was six months’ pregnant at the time, the nurses were worried that I might collapse and immediately told me to sit down. The ophthalmologist then discussed with me the next steps. I heard the words but I couldn’t understand. At that moment, it didn't matter that I was a doctor - I was a mother. And I realized at that moment: this is how patients must feel when they receive their diagnosis. As a mother, I wished it was me and not my son Julian. Perhaps this is what other mothers have felt when their children received similar diagnoses.

Since his diagnosis, Julian has been through six gruelling rounds of chemotherapy (both whole body and directly into his eye). To get the whole body chemotherapy, Julian had to have a catheter inserted into his chest. He was unable to have a bath or swim for the entirety of the treatment because the catheter could not be submerged in water for fear of infection. Every time he had whole body chemotherapy, it would take two days, for at least six hours at a time. It took all our might (and an ipad!) to keep him still so that the catheter would not get dislodged.

Direct chemotherapy to the eye is a complex and delicate procedure that must be done by an interventional radiologist. He or she must guide a catheter up from the thigh artery through the aorta, through the chest then up into the eye to deliver the chemotherapy. You can imagine how complex this procedure is and why the operator must be heavily skilled to perform it. It took a few hours each time, and during those hours I would pace the hallway while I prayed and waited nervously for him to finish the chemotherapy session. Julian also had to have his chest catheter cleaned or flushed twice a week and blood drawn once a week over the last half a year. He also experienced some side effects such as loss of appetite, nausea/vomiting and hair loss, and has had to have monthly eye check-ups and laser under general anesthesia. His doctors will continue checking his eyes very closely and vigilantly until he is at least 5 years old. Thankfully, his tumour has been responding to the chemotherapy and laser.

I write this article in the hopes that the public may be more aware of this disease, i.e. retinoblastoma. This is the most common eye cancer in children. A rare condition, it occurs in an estimated 1 out of every 14,309 live births in Hong Kong. From 2008 to 2019, 55 children in Hong Kong were diagnosed with retinoblastoma. It most commonly presents with leukocoria (a white pupil) or strabismus (where the eyes do not line up in the same direction). These cases are usually treated with chemotherapy, laser or surgery. Not all of the 55 children were as lucky as my Julian, who did well after treatment and could resume a normal life with his eye and with most of his eyesight unharmed. Some of them went completely blind, while others had to undergo enucleation. It is my sincere hope that all parents can be aware of this disease and check their children’s eyes for any abnormal signs so that none of them have to lose their eyesight or eyes again.

To know more about retinoblastoma

https://www.ccf.org.hk/zh-hant/information/diagnosis_and_treatment/?id=3

To support Children’s Cancer Foundation

https://www.ccf.org.hk

To support Hong Kong Children’s Hospital

https://www31.ha.org.hk/hkch/SupportUs/Donation

Reference:

Wong ES, Chan AYY, Lam CPS, Lau WWY, Yam JCS, Yu CBO. Retinoblastoma in Hong Kong from 2008 to 2019: looking back and moving forward. Hong Kong J Ophthalmol [Internet]. 2020Jun.23 [cited 2023Aug.10];24(1):6-10. Available from: https://hkjo.hk/index.php/hkjo/article/view/270