Some happy times, some rough days...

Monday, January 24, 2011

Has it been a week already? Everything seems to be flying past me and yet, I feel like nothing much has changed; like we are still at a stagnant phase in our lives, doing the same things over and over, praying, wishing and hoping for a positive change...

We were basically home to recuperate from Char's surgery last Monday. It wasn't easy to tell my feisty little girl to not move around much even when she is in pain. Her mind is very capable of shutting away her pain when she is at play. Her mind power far surpasses mine and she keeps pushing herself to just do one more thing, despite the pain and fatigue. Just like her surprise 20.3 million stem cells collection in one day, she continues to draw her strength from her secret treasure chest somewhere deep down in her.

Of course, we had a good scare when she went down for a walk barely 2 days post surgery while I was out to fetch Jase from school. And the night ended with the area surrounding her wound becoming red and her temp climbing up to 37.8! I was freaked out! Took a picture, emailed Dr Chui and called him. Thank God the redness subsided after a dose of antibiotics and strict instructions from Dr Chui not to move too much.

We went to Clinic for a discussion with Dr Aung on Thursday and were pleasantly suprised to find that her get ANC (immunity) has risen to 0.9! Not the best because the minimum is 1 nevertheless, her little body has gone through so much chemo, it takes a much much longer time to recover and we are already a month past our last chemo in Dec... Which didn't work to control her cancer cells... As such, each additional day that we take to wait for her counts to recover is an additional day of risk, knowing her cancer is spreading... Double whammy as usual.

Before I went down to meet Dr Aung, I had already sort of decided on the direction of Char treatments, knowing that I do not want to put her through another high dose chemo. As such, we immediately started her new treatment the next day, last Friday.

She is on a new protocol which is under a clinical trial phase in New York, and we were really blessed to have the drug available in Singapore for adult oncology patients. The drug is called Avastin and it is not exactly a toxic drug like chemo but of course, it is not without side effects as well.

In fact, I was dismayed and shocked to find that her lips turned pale a couple hours after the 90mins infusion... I had spoken to 2 moms in NY whose child was on the same protocol and was warned that one of the side effects was severe nose bled for hours... Hmm, definitely wasn't prepared for the extreme fatigue, the pale lips, the nausea, the vomiting to set in... So while I'm comforted that we have a plan... I'm heartbroken to see her suffer... My only push factor is to tell myself to pray that everything is going to be worth it...

She continues to be more unwell over the weekend, but was adament abt going out with Angela jie jie and Rich Kor Kor to fly kite. In fact, she said she was not in pain, insisted to walk and even stood up to fly her own kite... Despite her efforts, I could tell that she was straining herself, pushing herself constantly because it's so easy to tell that she is just plain exhausted with a pale face...

Her pain also surfaced on Saturday night... This time, it's her right leg again. Both nights, she was in so much discomfort and pain that she couldn't sleep... Even after the pain relief meds... Last night was even more rough... Only this morning did she manage to fall asleep after different pain relief meds...

This morning, we rushed to Mt E to have Dr Chui check her surgical wound and is now at KKH, waiting to start our 5 days chemo - Irinotecan and Temodar. 2nd part of this protocol. Our last part will be next Friday, the second infusion of Avastin. Hoping that Heaven will have mercy on us and allow my dear princess to be home to enjoy CNY the way a normal child enjoys it - no pain, no inpatient stay...

I was actually very concerned over her extreme fatigue and nausea over the weekend and wasn't sure if she still has low immunity or not... But her counts we took an hour ago is showing incredulous results - ANC of 3!!! HGB 11 and platelets 189! To be honest, the numbers do not represent her physical behaviour. I'm almost skeptical and wonder if they got a wrong sample from a different patient!!! How else cane we explain her lethargic and all that nausea with such great immunity? Side effects of Avastin?!?! Never heard from other parents about this... Are we one of the rare ones?!?!

Nevertheless, Dr Aung is confident enough to start chemo and I trust her! We really can't afford any delays anymore...

So please pray with me that this new protocol will be able to bring Charmaine into our much needed stability. And that we will be able to complete our chemo regimen smoothly with no hiccups. Please also pray for her pain to subside totally so she
can walk on her own again and be the happy girl she is.

Thank you everyone.

Love,
cyn mommy

1 comments:

Jamie said...

With Chemo's low sucess rate and all the other drugs that just seem to poison her more, have you experimented with other wellness products as well as lifestyle and diet choices. I heard really much better feedback about these wellness options and yes well there is less empirical "proof", the success rate of chemo with empircal proof is so abysmal anyway. Just go and listen, study it and loook at alternative other than this "medical" journey which i feel is doing more harm than any good so far.

I hesitated to write this but I just would feel more guilty if I didnt rbing this up. Do explore as really, what is harm? Insanity is we keep trying the same old patterns and methods even though they bring about the same results or even makes things more worst.

Concerned Stranger who has been following your journey with increasing sadness and frustration.

Of course, no obligation to post this. Just want to drop a line.

 
Feisty Princess Charmaine. Design by Pocket