Our surgeon, Dr Ganga, decided to bump up the surgery from Friday to Wednesday for our peace of mind. However, as Elise was still coughing, he told us that everything depended on the anasthetist because he would be the one responsible for administering GA. If he decided it was too risky, the operation would be called off.
On Wednesday morning, we cabbed down to the hospital. The anasthetist told us that the protocol is that the child has to be well for at least 2 weeks before surgery. With Elise, there was a 5% to 10% risk that the viral infection would cause a heart attack or death. We decided to go ahead with it because we didn’t know when her cough would stop and because we wanted to remove the tumour ASAP.
While she was being prepared for surgery, the anasthetist sedated her which caused her to be groggy but this little girl was not going down. She looked like she was a bit drunk and couldn’t sit upright but continued playing and talking.
I let my father accompany her to the OT because she’s closest to him. He said it took 3 seconds to knock her out with GA as compared to the immediate effect the other time round. Woah this baby.
It was all up to fate once she was inside. We couldn’t do anything so we went to have a bite. My relative urged me to chant, but I didn’t. Other people have advised me to pray and chant to the Gods of their own beliefs. Even during this tough time, I have to say I shamelessly depended on the strong faiths of others to pray and chant for my girl rather than grab any random religion or worse, all of them.
I’m happy their faith carries them through their own tribulations but to insist that their religion will work for me is something I can’t get over. I’ve had a blog comment from a total stranger telling me to “BELIEVE AND PRAY NOW!“. Sure… and I belong to the Church of the Flying Spaghetti Monster. Pastafarianism is a legitimate religion okay.
Regardless of my (lack of) faith, I packed an amulet that my aunt prayed for into my bag and hung a good luck charm my bestie got on her recent trip to Japan. She also got me a good luck charm for my previous surgery and it went well so… *shrugs*.
When more than 2 hours passed, I got really nervous because Dr Ganga mentioned it would only take 1.5h to 2h. Then, I received a call from the nurse telling us that the surgeon wanted to speak to us. My legs turned weak and I felt myself turn pale.
Was there a complication? Did something happen to my baby? Is she okay?
When Dr Ganga appeared from the OT, he told the nurse to get a room for him to talk to us privately. You know how it’s like in dramas? The doctor comes out, removes his mask and says “I’m so sorry, we tried our best”?
Seeing how my life has been freaking dramatic, I certainly hoped it wasn’t that way.
We found a room and he told us that golden sentence – “The baby is fine”. He told us that the tumour grew significantly since the last time they checked 2 weeks ago and that the retina had already detached, making it a blind eye, so our choice of enucleation was a good one.
He also said that we had to thank the anasthetist (Dr Neo) because he had knowledge of Retinoblastoma and other anasthetists would have cancelled the operation.
We went into the recovery area where we waited for Elise to recover from the anasthesia and I spoke to the nurse who told us that Elise was a strong baby because she didn’t cry.
We thought we would be given a bed in the same 6 bedder ward, so we were surprised that Dr Ganga requested that Elise be warded in the Paeds Oncology ward. It’s a quiet, 4 bedder ward with airconditioning and an attached bathroom. It’s something like an upgrade from a Standard room to a Deluxe room. I didn’t mind the previous ward because there was natural ventilation and lighting but because she’s still coughing, it’s the right place for her – lesser people, lesser germs.
She has been latching for a lot longer than usual! I think it’s more of comfort nursing for her. She usually latches for about 10 to 15 minutes but she has been suckling for 30 to 45 minutes. Ouch.
We can’t stay here for long though. The doctor intially wanted to discharge us yesterday but I requested to stay an extra night so that the nurses could help us change her dressing. The food is good too – Elise ate lots of it. My cooking loses out to hospital food…
We also got to borrow toys from the Childrens’ Cancer Foundation resource library located in the same ward. She loves books more though!
I shouldn’t compare, but Elise is one of the more fortunate ones to be afflicted with a cancer that has a high survival and cure rate.
Both my husband and I feel crushed when we see her swollen, stitched up eye. I told him that we lost her eye but extended her life.
My friend casually asked her other parent friends what they would do if they were in the same situation and the men all replied that they would not agree to enucleation. Guess what? My husband fought right up to the end to save her eye (we’re not talking about vision) and it took a lot for him to accept it.
Those parents probably have not googled for images on how untreated Retinoblastoma looks like. The affected eye becomes red and bulges out of its socket. Chemo is not a suitable treatment for her advanced stage. They should know that sometimes, you really do not have a choice, unless you are willing to take a gamble with your child’s life by using essential oils (okayyyyy), TCM or some unverified folk remedy. To be fair, I do think I would have considered these methods, but ONLY if the doctors told us there was no other way of treating her. My husband read articles where a man was cured of his cancer after living high up in some mountain in Korea and eating wild herbs.
Anyway. Elise has been coping very well! We can tell that she has a very high pain tolerance because she didn’t fuss even after the painkillers wore off.
She is blessed, with lots of visitors, presents, balloons and good wishes. I think what she wants most is a playdate with her buddies and play at MyGym. Also, we’re glad that medical science and technology is advanced and that we are living in a developed country where there is ready access to medical care.
We still have to wait 1 more week for the pathology results to be out and see if she requires additional chemotherapy but we are really hoping that the surgery alone will be a cure.