It's shingles!

Tuesday, June 1, 2010

Last week, we were fighting Rotavirus and this week, shingles creeped into our lives...

And the irony is her immune isn't even below the acceptable low. She is not considered neutropenic and she is supposed to be slightly stronger (although bearing in mind their strongest is prob nothing like ours). Yet, in every cycle of this rather light chemo, we seem to have one new bug/virus welcomed into our lives... I don't know what to say. I don't know what have I done differently or inadequately...

But one thing is for sure... All these new infections all point to one fact. Although the chemos are considered light, but with each additional infusion into her body, her body takes another beating and another toil... Because whenever we start a new round, we always start with a
much less stronger body compared to the previous round, even if we allowed the body to rest for a couple of weeks...

So here we are... In 5-7 days of total isolation from the rest of the world. We barely just walked out of here 3 days ago!

I'm not complaining though. We will ride out this together. And yes, it could have been worse, so I should be thankful it's shingles. Having said that, shingles for normal people like us is nothing more than chicken pox but with pain. But simple things are just not simple with onco patients.

I'm praying that we caught it early and that she will recover from this ordeal soon and NO PAIN! Keep it simple and boring pls.

Her potassium is scaringly low at 2.5! We have never dropped this low despite how tired and lethargic she was previously! And these last few days home, she was neither tired nor lethargic! Abundance of laughters, jumping and playing with her kor kor while I was just a sick cat. And yet, such low levels! They are hooking her up to some machine to monitor her heart rate which they said low potassium could affect...

I am puzzled myself too... Will ask doctor and research abit...

It's Jase first ever swimming lesson today. I had been so excited whole day yesterday and was worried that my fever wouldn't subside soon enough to bring him in today. But alas, those red spots that grew so much last night made me lose all my sleep and this morning, I just couldn't even sit at the pool to watch him in his first water experience... I was busy emailing Dr Aung, calling the ward... Because although I've never ever seen shingles in my life, the moment I saw those red spots, my first thought was shingles! And I didn't want to expose others to it in case I am right.

Jase has one of his baby teeth shaking. I am going a little crazy over this phase of Jase's growth! In a wonderful way of course! I even asked my mom when did I drop my first ever baby tooth? She said she had been too busy working that she had forgotten. :-) I live 2 different lives through both my kids, and it's filled with entirely different experiences. Watching Jase grow up is so priceless! Although I'm stressed with his primary one registration but which parent doesn't! And it simply means they are growing up well! Witnessing him balance his bicycle on 2 wheels and take off like an expert made me one very proud and emotional mom that day! He has grown!!! He can actually cycle on 2 wheels without me teaching him! He has learned so much things on his own because I hardly spend enough time with him. He has learned to accept things like a little young man. Sometimes almost too much that he didn't even tell me that he bumped into his friend while playing and had such a huge bump on his head which I didn't even realize until Charlene mentioned! :-( but ya, he doesn't complain at all. Not a single bit. He doesn't even try to bargain for better chips like our little princess! Mostly, he just listens and accepts. He dares to try even if he is scared. He understands his role as a big brother. Whenever he comes to hospital to visit, he never leaves us without kissing us goodnight, goodbye and I love yous. On the few occasions he almost forgot, he came dashing back to our bed, screaming his I love yous across the hallway! Such joy, such love... I am indeed honoured and blessed. And I have no doubt every mother feels the same pride and joy as I do.

In my other life, the journey has definitely not been easy but don't everyone experience a rough patch or 2 in their lives? Of course, I would gladly give up this life in exchange for plain boredom! And I might even insist that I treasure life just as much even without death staring right in my face! Having said all that and despite a very different childhood from the normal kids, my little girl is growing too! Every single day! (I just pray and plead and hope that whatever that shouldn't be growing isn't!) Charmaine has grown from enjoying Barney to watching Dora and now, wanting to be a Barbie princess! It's just exactly the same way my Neighbour has described to me years back when she handed me her old DVDs! The same way her little girl has grown and matured! And now I found myself passing down this 'knowledge' to another mommy with her baby girl! Yeah!!! I do worry on a every second basis but I also get to witness her growing on a every second basis! Like the way she is speaking just like me! Lol. She uses the same big words I used on her on myself! And she whines the same exact way I whine! And she sure can bargain and negotiate her way! Oh, did I mention that she even has to decide what she wears, whether she should go hospital or not!!! Oh yeah, she's definitely the boss! Haha. And one very smart and knowledgable boss! She knows what is chemo, portacath, getting accessed, all the apparatus, she understands fully what are the risks of not rushing down to hospital when she has a fever, she knows whats the normal BP range for a 5 yr old kid, she knows where is KPE, TPE, CTE, PIE! And she is a real threat to the nurses! Haha. She observes every step the nurses take carefully! She knows how to get rid of bubbles in tubes, she knows how to flick her syringes... And alot more!

It's 1st June 2010 today! We are almost at the halfway mark of the year. So nice to have everyone I love with me right now as I type this! Yes it would have been even better if we are not actually in a hospital room, but I can Iive with this! We are now trying to decipher this new machine that is making lots of noise! Charmaine is obviously very upset and disappointed at having to stay here. At least in our usual ward 76, there are lots of her usual friends and nurses that she can chat with and disturb. But in this room, there's only her boring mom and noisy machines!

So we have decided to master the technique of reading this new machine and we are also having a big party here! It's tent pitching time with blankets and pillows and lots of hiding! Haha!

Hmm, the respiratory rate is one tough rate to understand! Char kept asking me WHY is it going up and down all the time! No idea, couldn't find a pattern yet!

I hope everyone is happy and healthy and having lots of fun!

With lots of love,
Cyn mommy!

8 comments:

Ms. Potatoe said...

A very positive post from you Cyn!! :)

Sleepy Cat said...

I agree with Ms Potatoe =P. Christians will quote from the bible and say "Life and death lies in the power of the tongue". There is a certain truth in it.

Speak and write positively, and good things will come. At the very least, you will feel much better. =P Cheers!

Mama Joan said...

Thks cyn, for updating us with such positive post. Reading your post makes my heart warm... Thks for sharing... Charmaine, Jia You!

2am said...

Yes, today post is a very cheerful you! Lifted up my spirit While reading you post. Keep it up, you can spread this positive energy around! God bless!

stacey said...

When you shift your focus, you tell a different story, the reality shifts too. Never mind your reality. It doesn’t matter how others are doing it or what they think, or your feedback on life looks like a tough “reality” now, the attention to all the negative aspects of life every moment of it keeps one away from seeing the reality he/she wants, the wellness. If you are sick, and being labeled sick because a doctor says you have this and that, you got to believe you can be well despite all the harsh reality. A stick has two ends, wellness and sickness. You can’t do both at the same time, it’s one or the other. When you find reasons to go to the path of wellness through hope or a belief system that benefits you or adopt a healthy diet, you don’t want to stay on the path of sickness and talk about it. When you stop speaking of unwanted things in your life and talk about what you want instead, you start seeing solutions, and more evidence will come from the place of wellness. Anything that connects you to your well-being is the value you want to hold on to. Blessings.

Hope said...

Hi Charmaine and family! My name is Hope, and my friend Sharon Li told me about you. Her lab partner at college is a friend of yours. Sharon told me about you because I have Stage 4 neuroblastoma as well. I was diagnosed late, at age 12, and I am now 19. There have been rough times and calm times, and I am still fighting this, but right now I am so much better than I was when I first started battling this disease.
I had shingles too! They are hard, but with antibiotics they cleared up pretty quickly, even with my weak immune system. I've also had my share of bugs and viruses, so I understand how scary and frustrating that is! And I'm always trying to get more potassium!
If you would like to email me to talk, my email is hopebertelsen@yahoo.com - I'd be happy to talk or answer any questions I can, or just listen. :)
I wish you the best and I'll keep you in my prayers!

Hope said...

Hi Charmaine and family! My name is Hope, and my friend Sharon Li told me about you - her lab partner in college knows you. :) I have neuroblastoma too. I was diagnosed late at 12, and now I'm 19. I've had ups and downs and I'm still fighting, but I'm so much better than I used to be. I've had shingles too, and they hurt, but my doctors were great, and with antibiotics, they quickly took care of them, even with my weak immune system. And I've had MANY bugs and viruses, which are never fun and always very frustrating. Don't lost hope, though! I've pulled through every time.
If you would like to email me, my email is hopebertelsen@yahoo.com - I'd be happy to speak with you and answer any questions I can, or just listen. I live in the USA, and I've gone to both Memorial Sloan Kettering Cancer Hospital and the Children's Hospital of Philadelphia (CHOP). I know quite a lot about different neuroblastoma treatments at CHOP.
I wish you well, and I'll keep you in my prayers!

kangta164 said...

Hi Cyn. Was just watching a few videos from TedTalks and this one topic regarding cancer was quite informative for me. Maybe you can spend 30 minutes watching this and see how it can help Charmaine. Additional info is always good. :)

http://www.youtube.com/watch?v=B9bDZ5-zPtY

 
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