At first, Jamie Jhang thought that her 1-year-old daughter Elise had amblyopia, “She seemed to be having a lazy eye and people told us that it would correct itself.”
“We were at the optician in Seoul when they strongly urged us to get her eyes checked. When we returned to Singapore, I received some eye patches which I pasted over her good eye. I then headed off to work.”
“Before I reached my workplace, my husband called me crying saying he thought Elise was blind.”
“The doctors at NUH confirmed that it was Grade E Retinoblastoma after conducting an MRI and EUA (examination under anaesthesia).”
To put it very simply, baby Elise had cancer in her eye…
What is Retinoblastoma?
Retinoblastoma is a tumour of the eye that typically occurs in children less than 6 years old. The tumour starts in the retina, which is the back of the eye, behind the pupil.
In Grade E Retinoblastoma, tumour reaches the lens or pupil muscles, may cause glaucoma, and may infiltrate the wall of the eyeball.
Warning signs of Retinoblastoma
According to Dr Cheryl Ngo, Consultant at NUH Eye Surgery Centre, “Retinoblastoma is an uncommon condition, although it is the most common childhood eye cancer. The incidence worldwide is 1 per 15,000 live births. In Singapore, the incidence is 5.9 per 100,000 live births.”
Dr. Cheryl also tells us about some warning signs to look out for when it came to eye cancer in babies:
- “The most common sign would be that of a white pupil reflex. This can be seen in photographs, instead of the usual red pupil reflex.
- Other signs include that of a strabismus or squint, as well as poor vision in the eye.”
Treatment options
Jamie informs that, “Typically, the 3 treatment options include IV chemotherapy, targeted chemotherapy and enucleation (removal of the eye).”
“For Elise’s case, surgery is the most recommended option and we have scheduled it on 23rd November 2016.”
“The two top specialists that we consulted (Dr Inez Wong, Dr Quah Boon Long) also firmly recommended that we should remove her eye.”
Tough decision to make
Wasn’t it a tough and heart-wrenching decision to make?
“It is the only logical decision. Retinoblastoma is life-threatening and if the tumour is not removed, it is highly likely that the cancer cells will spread to the other eye, and other parts of the body.”
“There is no way to remove the tumour without removing the eye.”
“Even after this surgery, we have to see if the cancer has already spread or not, as the MRI scan is not a confirmation; they have to physically examine the tumour and send it for tests to confirm.”
Accepting the decision
“My husband got emotional because he felt there was a chance of saving her eye, whereas I was more or less decided after listening to what the specialists in Singapore had to say.”
“My brother-in-law consulted the top cancer doctors in Seoul without Elise being physically there. When the Korean doctors told us that the best option was also to remove her eye, we resigned ourselves to it.
After all, if the cancer has not spread after her surgery, it can be considered as a cure.
The Proton Beam Treatment in Korea is a last resort option for children who have tumours in both eyes as it may cause bone growth retardation which will affect how the child appears whereas with a prosthetic eye, on first glance, most people will not be able to tell the fake eye from the real eye.”
Baby still cheerful
Baby Elise is still very active and cheerful, as usual. She still jokes around and squeals like any other baby.
Mummy Jamie who is a freelancer, and maintains a small blog at bibimbubs.com says, “Currently there is no pain or discomfort so it makes sense that there is no major change in her behaviour. She was a bit traumatised by the hospital experience and showed us her bruised hand and foot (from the IV drip insertion) but she got over it.”
“After being discharged, she developed fever, flu and cough which she is recovering from. She will be warded again for a short while after her operation.”
Being strong is the only option
We asked her how she manages to be so strong. Jamie replies, “We did have a few days where we looked at her and broke down crying, but right now, our focus is on getting her surgery done and seeing if she requires further treatment (chemotherapy), which we are definitely hoping she does not have to go through.”
“I’ve received a few comments telling me that I am a strong mother but I do not think so.”
“It is just the most logical option of choosing an effective method of removing the tumour as compared to choosing chemotherapy, which only offers a 30% to 40% globe (eyeball) salvage rate and is a long and painful process for the child.”
We wish baby Elise a speedy recovery.
Update: Baby Elise’s operation went well (on 23 November 2016). Here’s hoping for the best for this little child…
(Reference: Johns Hopkins Medicine)