Hi everyone, (Has it been awhile since I remember my manners and said Hi?)
Pardon me because I have been updating through my phone these days and usually I just want to do a quick update and get back to whatever I was doing. But right now, I am typing from my laptop, its nice for a change.
Both Jase and Char are busy colouring now as I am typing. Like any other siblings, they are having a little disagreement over the colors! Haha... ITS SO GOOD TO BE HOME!!! Life actually feels normal. Time has been whizzing past us since we arrived home from NYC and we have been inpatient more often than what we are used to, and undoubtedly, it has taken a toil on our mental being. However, the last 2 days has been a refreshing break for us as a family. We really needed this and I am so grateful that we have these couple of days to recharge!
Charmaine is still experiencing abdominal pains and diarrehea daily but the frequency is thankfully decreasing. We had a couple of really tough days last week and I pray that the side effects is finally starting to wear off and Charmaine is able to actually have a few good NORMAL days this coming week before we start our cycle #4 on 26th April.
Thank you to all our friends who suggested ways to cope with Char abdominal pains. One of our warrier family from NUH even called me up and gave me their hot pack to help Char. Thank you Pamela!
Charmaine is scheduled for her MIBG scan on Monday and Tuesday (19th and 20th April)... We had to go KKH yesterday to set a plug on her hand before heading down to SGH to inject the contrast. It was another traumatising start to the day because I had to apply emla on Charmaine's hands and of course, she freaked out totally. Cried so hard. Thankfully, she managed to calm herself after crying non stop for abt half an hour. One of Charmaine's greatest strength is her ability to calm herself down after crying her heart out. And its all because of her wonderful strength that I am able to survive through each procedure and each ordeal. Once again, she displayed her amazing strength yesterday and didnt resist at all when I picked her up to leave the house. She stayed calm throughout our journey to KKH and could even tell me that her right hand should be poked instead because there's more emla and it would be less painful! I am just in awe. So many times, I silently ask myself, "Would I be able to even have half the strength she has to knowingly walk forth towards pain and fear so many times and yet still continue to smile at the simplest things?" My answer to myself is a NO. Frankly, I am very certain I wouldnt even be half as brave as she is because I am a person who rather not know. To me, ignorance is bliss. But yet, I have to tell my baby girl to not be afraid so many times... It makes me feel like I am some sort of a hypocritical monster myself... Because almost every time I tell her not to be afraid, my heart is filled with so much fear and pain.
Another challenge which made me rather stressed eventually turned out to be such a breeze just BECAUSE SHE IS CHARMAINE! Children who has to do a MIBG scan are prescribed with Lugol's Iodine (Yes, its that yellow/purple iodine). It will protect the kids' thyroid during the scan. The kids have to swallow Iodine for 5 days, 3 times a day in Singapore. The first and only time Charmaine swallowed the Iodine was sometime last year when she was first diagnosed in March. It tastes really horrible and it leaves a bitter aftertaste on our tongues for a long time.... so you can imagine why these kids really dread drinking it. The last time, Char really didnt like it... and it makes her lose even more appetite. Hence this round, I was very stressed. Charmaine's appetite is already not too good and with all the diarrehea ongoing the last week, I honestly is concern.
BUT it turned out that I totally underestimated Charmaine's tolerance once more! The first dose was on Friday and though she was really turned off by the sight and smell, it only took her about 15mins and she swallowed that 0.15ml in one gulp and no fuss! A few more mouthful of water and that was it!!! Charmaine, your mother, me is truly ashamed of myself! To think that I am actually so afraid of swallowing pills and yet you swallow every syringe of medication without asking mommy why, despite the horrible taste. The only few exceptions were: "I dont like this medicine because its not nice" but yet you would still dutifully swallow the next mouthful I put into your mouth... I love you Char and I am so proud of you. Your determination to want to get well is time and again displayed in all your simple actions and with all the aunties, uncles, kor kors and jie jies praying for us, we will get there again.
My emotions are all mixed and tangled in a mess now. I am happy, truly happy to be at home watching TV with both Jase and Charmaine by my side. Simple things like these that most people get to do it daily and may not realise how priceless it is until it becomes a treasured activity... like it is for us now... There are many families still in hospital fighting their battles, who dont get a chance to be with their family like I do tonight as I am typing this...
The other bit of my brain is filled with anxiety, worries and just absolute fear. Our lives in the onco world is easily uplifted to cloud nine with a phone call or thrown down to the deepest, darkest abyss with just one scan... Just one scan away between heaven or hell literally... One moment, you are happily rejoicing and the next, you may be uprooted from your life totally... Such is life for us... It really makes me question why was I even anxious about getting my O or A levels results when I was younger... its not right to compare but seriously... dont you just wonder sometimes...
On a side note, if you happen to be anxious over a test or exam result, please remember that this result doesnt reflect you in anyway at all. Even if you happen to be the one that is always in the bottom of the class, it still doesnt mean that your future is a solid indication of what you are now. I'm not that experienced but in my 30 years of life, those who used to come up tops during my school years werent always the ones that are the most successful now. Those who used to fare badly in school arent always the ones struggling now either... so take heart, as long as you have the right attitude towards life, the rainbow will be waiting for you at the other end of the bridge.
I digressed again... Sorry, just my way of trying to not think about scanxiety for a couple of minutes... We have to be at the hospital by 0730hrs tmr so I shall end it here...
Before I sign off, I would like to just plead with you to say an extra one or two (if its not too much to ask) prayer for Charmaine for the next few days. PLEASE HELP ME PRAY FOR CLEAN SCANS FOR CHARMAINE. We honestly need it. I need it... THANK YOU.
Dear God, PLEASE PLEASE PLEASE GIVE US A MIRACLE. PLEASE let this chemo WORK MIRACULOUSLY and that ALL HER CANCER CELLS are miraculously KILLED even way before I typed this. PLEASE HEAL CHARMAINE now so she is healthy and happy and is able to be a normal child...