Saying goodbye?

This is an extract taken from Godma Jolene's Facebook note and blog post.

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I’m sorry for the lack of activity here, on my Facebook wall and messages, on ourfeistyprincess facebook group and ourfeistyprincess blog and on email. Comments, wall posts, emails, sms have all gone unanswered and I’m only in contact with a few people these two days. My sms line has also been misplaced. I can’t find it anywhere at home or in the car. When the rain stops, I’ll search the car once more so for those who know me, please text me on my main line instead.

I was sick with a very bad headache and nausea for the whole of yesterday and turned in before midnight (an unsually mean feat for me) after I got back from Cyn’s house.

I was awoken by the rumbling of one of the loudest thunder ever which shook the whole room just now and here I am being unable to sleep and deciding to surface on the internet after 2 days.

At about 4.40am on Sunday, Cyn mommy texted that my god daughter Charmaine was in ICU once more. It was the other lung which was not working this time round and that she was very scared.

About 3 hours later, cyn’s brother texted that it was not looking very good and that there was nothing much the doctors could do about Charmaine’s breathing difficulties. Unlike the last time when the condition could be alleviated by draining the blood out from her lungs, they were not able to do anything this time except to provide her with oxygen.

I turned in at about 3am that Saturday to Sunday morning so I completely slept through all the sms tone and saw everything only when I woke up. My mind drew a blank when I read the messages and I just lay there in a daze.

~

I’ve always had positive feelings about Charmaine.

When she was first diagnosed with stage 4 neuroblastoma in 2009 and was given only 10% chance of recovery, I believed that she would overcome this and she did. She had since outlived her age ceiling for neuroblastoma patients.

When she had to undergo her first major high risk surgery, I believed she would pull through and she did.

When she had to undergo another high risk surgery sometime in May this year, I was not in Singapore. Cynthia did not tell me about the risk as she knew I was overseas and did not want me to worry but I’m glad Charlene called to let me know exactly how risky the surgery was. Miles apart, I prayed for Charmaine and sent her some good energy and once more, she did not surprise me with her ability to overcome another obstacle yet again.

Throughout the whole 2.5 years of battling cancer, I’ve always BELIEVED and at the back of the mind KNEW that Charmaine being so feisty, would be able to overcome all the obstacle thrown in her way. Needless to say, I was always proven correct by Charmaine’s sheer determination and fighting spirits. I’m very sure that all the prayers and unfaltering words of encouragement from our family and friends as well as from our loyal readers and supporters helped tremendously too and we’re always grateful for all the support.

The last time Charmaine was in ICU a few weeks back, I did not have that little voice inside me telling me that it would be ok. I was so scared that the little voice would be right.

These few months, Charmaine has been really sick. She has lost the ability to walk as there are cancer cells and tumour in parts of her legs, her pelvic bone, nerves around her spinal cord and recently her lung and hand. She is bed-ridden and can’t move her swollen legs and the whole of her lower body at all due to the sheer pain of cancer eating her up.

Many a times, some people would advise Cyn mommy to do whatever that could keep Charmaine comfortable. Some very insensitive people also came and started to pray for God to take Charmaine with him rather than to pray for healing. At such times when a mother is in a highly depressed state, the least you could do is to offer some soothing words even if you know what’s in stall. This is not denial. This is empathy and compassion.

We kept asking for healing. We kept telling Charmaine to fight. We kept hoping for miracles. That doesn’t mean that we’re in a denial to the truth that Charmaine may say goodbye to us soon.

Some people have the gross misunderstanding that Cyn mommy is the one holding on and getting Charmaine to fight till the end without caring if she is leading a qualitative life. Some people suggested letting her go and not to hold on anymore. What these people do not know is that Charmaine herself is the one with such strong will and determination that she is fighting the monster with her every breath.

Many a times when there is an anguished decision to be made, Cyn mommy would be at a loss and doesn’t know if she is making the right decision for her daughter. However, Charmaine would be able to point Cyn mommy in the right direction by telling her what she wants and feels comfortable with.

Charmaine may only be 6 years old but she has the understanding and maturity of someone way beyond that age. Hence before Cyn made any decision, she would look at Charmaine and listen to her and be at least surer that she is making the right decision.

Some of us personally know that Cyn is not giving up precisely because Charmaine herself isn’t giving up yet. How could anyone have the right to rob the patient of her chance of fighting and telling her to give up when the patient herself is fighting so hard and isn’t giving up at all?

~

Then on Sunday, the little voice never came.

I was unsure yet reassured at the same time. It’s a weird feeling but at least I know that little voice did not give me any negativity and that itself gave me some hope. Hence at the back of my mind, I thought that Charmaine was going to show us that she would overcome this hurdle yet again.

However when I reached KKH, the situation looked really grim. Charmaine was having so much difficulty breathing with one lung not working and the other lung bleeding a while back. Looking at her little chest heaving up and down violently in short gasps and seeing how distressed she felt, I really don’t know what to think.

The situation was so grim that Cyn mommy had at last did her mother’s duty of letting Jase know that his little sister may leave us anytime. This was something which she found so difficult to do. Jase knows how sick his mei mei is but I think the thought of having to say goodbye to mei mei is simply too overwhelming for him. Tears started flowing and he was speaking incoherently that all I could so was to hug him real tight.

The situation was so grim that we were allowed into the ICU room without wearing our masks at all. The medical staff did not adhere to the two-people-at-a-time and no-children-in-ICU rule. Jase was also allowed into the room without having to be snuck in. A crowd of family and friends were also allowed to stand outside the room to see Charmaine. It was as if Charmaine was running the very last leg of the race and that everyone was allowed to utter their last goodbyes to her.

At a point of time, we were all holding her hand and crying bitterly as Cyn assured Charmaine that we were all around her and she should not be scared as she would be going to a pain-free place where she would be able to walk and run freely again. She also reassured Charmaine that if she was really tired, she could go and sleep and that mommy would be able to understand. I've never heard Cyn saying all these to her before and I know it pained her to be saying these words. Cyn even asked me to take a last photo of their family of 3 using her i-phone.
I did not want to believe that it would be the last time I was going to hold her hands even as tears were streaming down endlessly. Nevertheless, Charmaine was in so much agony that I thought she probably felt like she did not want to suffer anymore.

Charmaine was conscious though she did not talk much but she made her intentions clear that she did not want to remain in the ICU and so arrangement was made to shift her back to the cancer ward.

Her condition remained the same after I left KKH with the last remaining friends texting that her condition was status quo.

~

Yesterday (on Monday), there was a flurry of activities around Charmaine’s bed as various teams of doctors and nurses who have been taking care of Charmaine had talks with Cyn mommy on preparing Charmaine. After two months at KKH, Charmaine would finally be going home.

There’s an incredibly large amount of logistics and new things to learn for Cyn mommy and her family. A few of us stuck around to help out with the packing and transporting of equipment and supplies to cyn’s home.

In the meantime, Charmaine’s condition remained the same but she was able to utter one-word or few-words phrases through her oxygen mask and whenever she was in distress, she would cry a little and holler for mummy. Cyn would constantly be talking to her, encouraging her and she would always reply with a “mm?’’ in a rising ending tone.

After a few hours of frenzy, cyn’s bro and I finally got home to help set up the room for Charmaine’s ease in transferring. About half an hour later, the whole ambulance team with some nurses arrived. Even Dr Aung (whom many of us have utmost respect for) dropped by to visit Charmaine.

While waiting for the equipment to be set up and with Charmaine still on the ambulance stretcher, I patted her hand and reassured her that Cyn mommy was only leaving her side for a while to settle some things in the room.

These few days, Cyn had always been a hand away from Charmaine and even if the former left to go to the toilet, Char would feel ill at ease and would ask for Cyn mommy. During the whole time she had breathing difficulties the day before, she did not want to hold anyone’s hand for long and preferred for people not to touch her. Thus, I was taken by surprise when Charmaine reached out and held my hand and tried to say something which I could not really hear. She started touching my hair and caressing my face as if she has never felt my hair and face before. As usual, when I talked to her, she answered “mm?” in that same rising lilt.

Once she got settled onto her own bed, she started to feel like her normal self again. She was talking so much through the oxygen mask that we were all quite amazed. Nobody could ever talk that much through an oxygen mask!

With drinking only water the whole day, her appetite crept in and she started asking for Udon noodles, fried rice and even fried chicken from that Chinese restaurant in NYC! When she saw Jase kor kor drinking the last Yakult, she asked for one bottle too and por por (cyn’s mother) immediately went down to buy a packet. She started talking about wanting to make a head band with butterflies and to do some craftwork with cyn mommy.

It was really reassuring to see Charmaine’s improvement in condition. She was brought home to enjoy her last moments at home before saying goodbye but it seemed like her condition had improved tremendously!

I’m truly happy beyond words but alas my headache and nausea which was plaguing me the whole day got worse and worse. Retched but nothing came out and so I had to excuse myself when the next close friend popped over with her family to cyn’s place later in the night.

With some washing up, I crawled under the sheets and slept like a baby till the thunder rocked the room.

I’m glad that my headache and nausea is gone for now but I’ve only gotten 5 hours of sleep so I’ll be heading to bed once more and dropping by cyn’s place later. The weather is so good for sleeping in and I’m so glad that I’ve got the luxury to do so. I’ll go have positive thoughts and sweet dreams without the headache and nausea to mess with my mind.

I hope for a miracle to happen and I have much higher hopes after witnessing a change in Charmaine’s condition.

You know, as logical and as prepared as I can be, I still believe in miracles.

I just found out about this video which somebody made for Charmaine when she was still mobile.