Retinoblastoma

This morning was pretty difficult on us because we were told that Elise would undergo her MRI scan at 10:30am and had to fast from 4am. I fed her in her sleep at 1:30am and when we went to the hospital, the doctors told us that instead of sedation, they would schedule the MRI under General Anesthesia instead and the timing was pushed back to 1:30pm. We felt annoyed and angry because we thought Elise would feel hungry, but the doctor told us that she wouldn’t feel hungry with the IV drip because it feeds glucose into her veins. It was really tough when she kept tugging onto my dress and crying when I wouldn’t let her latch.

To calm her down before pushing her into the OT for her MRI, the staff turned a surgical glove into a balloon for her. It sort of looks like a puffer fish. She was knocked out the second she breathed in the gas so… no difference? Haha

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I also mistakenly assumed that hospitalisation insurance only covered inpatient expenses and not outpatient treatment and that because I applied for her life insurance too late (I wanted to find one with cheaper premiums because there was loading), I wouldn’t be able to claim for chemotherapy.

I previously purchased a private hospitals shield plan for her.  It didn’t occur to me to read up on the exact provisions until my colleague who also does insurance told me that everything is claimable, including chemotherapy treatments. It really is a big load off my mind because at least we don’t have to worry about sky-high expenses which come with chemotherapy. Buy your shield plans now, people. Medisave Life alone doesn’t cut it. 

Elise’s tumour is known as retinoblastoma which is a rare eye cancer which usually develops in the womb and presents itself in young children. The doctor told us that the tumour is huge and there is significant pressure on her right eye which is severely limiting her vision, so treatment will definitely have to start soon.

Our treatment options include:
1. Enoculeation (cheapest method to remove the tumour but also means that her whole eye will be lost forever)
2. Chemotherapy
3. Targeted Chemotherapy (only NUH provides this service)

Since yesterday, my husband has been telling me that Korea has more advanced technologies which I didn’t pay much attention to but after reading through, I realised that he was correct – Korea and Japan has been doing proton beam therapy for a few years already, but we are still in the midst of building such a facility which is expected to be completed in 2019. Proton Beam Therapy is apparently painless and non-invasive. However, after further reading, it is not a miracle method and is reserved for the serious cases. Even then, the success rate of this therapy is not high meaning that the affected eye was removed eventually.

What I’m relatively relieved about is that Elise is in good hands at NUH if we decide to continue treatment here. The doctors directly involved in treating her are qualified professionals and feedback on them from fellow doctors in private practice include “he’s one of the best in this field” and “she’s very smart”. My friends asked around for referrals and Elise’s doctors were referred.

Before starting treatment though, we will likely consult another team of doctors just to hear what they think about the proposed treatment plans. A doctor from that team used to head NUH’s paediatric ophthamology department.

Elise has been doing very well so far. Her spirits are high and she’s still as cute as ever. In the morning, the nurse inserted her IV plug wrongly and she kept showing a sad face and her plastered hand to him. It must really hurt because her hand is bruised. Poor baby.

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I have to admit that I’m a really selfish person and I have been very surprised at how much support we have been receiving. My bitching buddy I met online sneaked out from work to visit us for the first time, the October moms, family, my bosses and even people whom I’ve just met once.

Y’know, I think I have a knack for forming relationships online. That’s how I met my husband. Hurhurhur.

My in-laws and friends in Korea are also worried sick and they’ve been asking for referrals on their end as well. There is this Level 9999999 professor who is way experienced in treating this condition but guess what? He is booked all the way until 2019. There are other doctors as well but honestly, if the treatment plans are similar, I’d rather stay here.

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Elise has been vomiting as a side effect of GA and her voice is hoarse. If she does chemotherapy, the side effects will be much worse than this so it’s something we have to be prepared for.

What we’re relieved about is that this cancer is easily treatable and it’s apparently one of the “best” cancers you can have.

Complacency was my biggest mistake. I do admit I’ve been complacent in looking after her. She doesn’t have a fixed PD – we schedule all her immunisations at the polyclinic. When she falls sick, we just sponge her and she’s usually up and running in 3 days.

This time, outsiders told us that it was lazy eye and it would go away by the time she turned one. A telling sign was when we were at a spectacle shop in Korea and the opticians urged us to get her eyes checked. I scheduled for a referral to NUH which took us about 2 weeks. What shocked me was when we put an eye plaster over her good eye in an attempt to correct her lazy eye and realised she couldn’t see. The doctor did tell me that we should have come earlier but now that we have, we just need to move forward and treat her accordingly.

It’s the start of a long journey.

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One thought on “Retinoblastoma

  1. Be strong and glad tat Elise is still as bubbly and lovely and cheerful and super cute as she is and pray tat everything will be good for u and your family and Elise… Pray tat God will work his miracle hands on Elise and she will recover fast… and the chemotherapy will be smooth for her… Amen…

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