I can't remember the date but it was on the first week on January 2016 that I saw a certain glow in the left pupil of my daughters eye. It was alarming and I thought that it might be because she is still young and maybe her eye's weren't fully developed (who was I kidding?). A few days later I saw it again. I asked my mom and my family and husband whether they saw what I saw but they didn't. They told me not to worry. But I was. Very worried.
I googled 'daughter has cat eye pupil' and I was directed to a page containing possible diseases that she may have. I was scared. It mentioned retinoblastoma,
What is retinoblastoma?
Retinoblastoma is a rare type of eye cancer that usually develops in early childhood, typically before the age of 5. This form of cancer develops in the retina, which is the specialized light-sensitive tissue at the back of the eye that detects light and color.
In most children with retinoblastoma, the disease affects only one eye. However, one out of three children with retinoblastoma develops cancer in both eyes. The most common first sign of retinoblastoma is a visible whiteness in the pupil called "cat's eye reflex" or leukocoria. This unusual whiteness is particularly noticeable in photographs taken with a flash. Other signs and symptoms of retinoblastoma include crossed eyes or eyes that do not point in the same direction (strabismus); persistent eye pain, redness, or irritation; and blindness or poor vision in the affected eye(s).
Retinoblastoma is often curable when it is diagnosed early. However, if it is not treated promptly, this cancer can spread beyond the eye to other parts of the body. This advanced form of retinoblastoma can be life-threatening.
When retinoblastoma is associated with a gene mutation that occurs in all of the body's cells, it is known as germinal retinoblastoma. People with this form of retinoblastoma also have an increased risk of developing several other cancers outside the eye. Specifically, they are more likely to develop a cancer of the pineal gland in the brain (pinealoma), a type of bone cancer known as osteosarcoma, cancers of soft tissues such as muscle, and an aggressive form of skin cancer called melanoma.
Retinoblastoma is diagnosed in 250 to 350 children per year in the United States. It accounts for about 4 percent of all cancers in children younger than 15 years.
So my husband and I decided to take her to a pediatric eye specialist. We googled 'pediatric eye specialist in Malaysia' and then we found a few doctors who treated retinoblastoma but Dr. Choong from International Specialist Eye Centre (ISEC) in Midvalley was the doctor we chose. We wanted to schedule the appointment on a Saturday but he was not available so our appointment was set on a Monday, 18th of January 2016.
Monday, 18th of January 2016
On the day, around 8 something, we went to ISEC. Our appointment was at 11am but due to living in Tanjong Malim, it would take us more than an hour to arrive plus jam and all. Alhamdulillah we arrived early. Done with the registration, we only had to wait less than 10 minutes to be called upon. Dr. Choong was very nice. He asked what was Hana's problem, and he checked her in less than a minute and saw what we call 'The Glow'. In order to check further, Hana's pupils were dilated. After an hour, we went to see another doctor, I'm not sure for what but maybe to see if Hana can see in her left eye or not. Once done, we met again with Dr. Choong for further checking. Hana being Hana and a small child, as usual doesn't like to be checked so we had to hold her down for Dr. Choong to check her eyes. Once done, Dr. Choong said that due to her struggling, he could not properly check Hana's eyes and suspects it is cataract but in order to confirm its cataract or not, he must check Hana under general anesthesia (GA). He also said he has to see Hana's retina. If it is cataract and no problem with the retina, he would remove Hana's cataract lens and replace it with a new lens. If there is a problem with her retina, he won't do anything and come back to consult us. So in order for that procedure, we scheduled it on a Wednesday because Tuesday was full.
Wednesday, 20th Januray 2016
Examination under GA (EUA) was scheduled at 8.30am. We were also given eye drops to dilate her pupils, 1 drop each eye 2 hours before EUA. We arrived a bit early but that is OK because Hana was first to be checked because she was the youngest patient. She had to fast for 6 hours so she was very hungry when we arrived. The nurses there said I am allowed to take her in the OT until she falls asleep. So after we changed her and I got suited up, I took her to the OT. It took less than 10 seconds for her to fall asleep. Now the waiting. Less than 20 minutes, Dr. Choong came out. Which what made me worry that it could be worse. And I was right. He told us that Hana has cancer, retinoblastoma. He drew what he saw and referred us to HKL where all retinoblastoma patients in Malaysia go to. He personally called his friend there to attend us on the same day. I still remember that day. It is still fresh in my mind. We waited for Hana to wake up and we were off to HKL. In HKL, we met Dr. Fiona, the nicest government hospital doctor. She examined Hana, ultrasound her eye and scheduled a CT scan for Hana on Friday where we had to be admitted the next day, Thursday.
Thursday, 21 January 2016
We had to arrive before 8am but we arrived a few minutes late but good thing we arrived just in time when the doctors were doing their rounds. Dr. Fiona allowed us (husband and I) to go out but we had to arrive back at the hospital before 7pm. So we did. Went to KLCC. Came back early coz Lan (husband) had to go back coz he had to work the next day. So it was just me and Hana.
Friday, 22 January 2016
Hana had to fast again but this time for 4 hours. She was of course hungry when she woke up. Her CT scan was I don't know when, said to be at 9am but goverment hospitals, this is the only disadvantage I guess. Finally she went to the CT scan building around 9.30am and was examined around 10.30ish am. Yeah, I know. And then we were told the results could be given the tomorrow but due to Chinese New Year, they doubt they could get it on time. But because Hana would be admitted again for EUA again (staging) the next week (27 January 2016), we decided just to wait and hope for the best.
I guess I'll stop for now. Part 2 will be coming soon. That part will be quite long too I guess. Why am I writing this? For awareness. I never knew about this type of cancer until my daughter had it. If only I knew about it......
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