LOSING MY MIND NOW...

Thursday, March 25, 2010

Just hours ago, I was still 'alive' updating everyone of her scan results and now... I am in the deepesy abyss of the ocean. BLACKNESS and BREATHLESSNESS.

Dr Aung just emailed me that Dr Kushner from MSKCC emailed her and that he is proposing that we switch Charmaine to a very intensive chemo ICE.

At this moment, I have NO IDEA what ICE is all about. All I know is that a couple of families in NY which I happen to know all decided to seek treatment elsewhere because they were not comfortable with ICE. I vaguely remember one saying that ICE is equivalent to BMT (Bone Marrow Transplant itself!).

Another family just emailed me saying that his son that is undergoing the same chemo is having seizure and suffering from confusion and is HARSH.

I cant stop crying again...

I dont understand...

I have been following some of the other kids' treatment in States and saw that some switch to even milder chemo therapies when the child doesnt respond to what Charmaine had received - Vincristine/Cytoxan/Topotecan.

I dont understand WHAT URGENCY did Dr Kushner pick up to make such a decision.
I dont know if I should proceed as suggested by him...

Charmaine is happy now and having a decent good quality of life... Should I succumb her to something that will cause seizures and many more issues? I dont want to... And I honestly do not think that we have exhausted all other means either...

I dont want to make a wrong decision... so afraid and so helpless again...


Love,
Cyn

11 comments:

J.H said...

Cyn, must be a terribly hard time for you.
I hope char's remain strong and the next chemo will managed to push the monster to the edge.
The fight is still on, don't give up!

stacey said...

Usually what happens is when a child does not respond well to current chemo; doctors have a tendency to switch to a more aggressive treatment. Immune suppression is caused by anti cancer drugs, thus fever is the result of that. Infection is a common cause of fever in cancer patients, I am sure you know already. We have heard stories of cancer patients recovered from different treatment regime, using conventional medicine or integrative medicine; cancer protocols are not one size fits all although some offer better cure rate than others. What you can do is ask questions about treatment options. Or you can do research about the kinds of treatment plans before you engage your daughter to it. Side effect from chemo varies from person to person. From my experience, I look at cancer as a great teacher. It has helped me to understand the larger aspect of life, and connected me to those brilliant souls who have enriched my life in many ways. Pray for your decision. Miracles do happen as I was told by a mentor of mine who happens to be a doctor.

Patrick said...

It remains that you should not even have gone to New York in the first place for the experimental treatment.

You should just stay focus on getting your daughter and yourself physically and mentally strong to take what's coming up ahead.

Eve said...

Hi Cyn,

Understand your worries and fear. Would be good to have a chat with Dr Aung to understand more if you can't speak to the doctor in USA. Hear them out before making any decision.

Hang in there and Jia You!!

Jolene said...

Patrick,

You may have your view but does it by any way address the situation by saying "It remains that you should not even have gone to New York in the first place for the experimental treatment."? Seems like there's a partial viewpoint here.

There is no comparison between that which is lost by not succeeding and that which is lost by not trying.

There is merit in the attempt, and a whole lot accomplished along the way.

Of course the above quotes are not uttered by me but by peeple who have been there.

How do we know if we don't try? How would there be breakthrough cure if scientists don't try?

You've been leaving many comments along the way. Whether published or not, WE have been reading. I'm the one publishing the comments so please do not chatise Cynthia by saying she only chooses pleasant things to publish.

There are many advice that were followed and many others which were have been tried but rather difficult to follow. It's always very easy for an outsider to stand by the side issuing advice and in your recent comments/ harsh words thinking that it is very easy to be done. Truth is, if you are experiening this yourself as a parent, it's a whole different matter.

I have mentioned before. Many of the advice would have been a lot easier to follow for a strong-willed adult. I myself know I would be able to adopt and follow lots of this advice if it were me. But probably when it eally happened to me, I may not react the same way. Over here, we're dealing with a young child who sometimes find it difficult to comprehend all these happenings around her. Have you tried administering all these on a child? Do you know how trying it is? It's really difficult. As a parent, of course you would seek for the best method for your child. no?

So many times, I've wanted to reply you because on your side you think that we've still not woken up and we should do this and that but this isn't the case.

Lastly, I appreciate your initial well intentions and thoughts of dispensing advice to Cynthia however, I would really appreciate if you could at times put yourself in her shoes and come up with solutions from that perspective instead of always putting us down and saying we should wake up and even picking on the words that she uses.

This is in reply to all your unpublished comments you have left so far. There's still a lot to be said but I hope we could end this here.

Good night.

crazy me said...

Hi,

I'm not sure if this is entirely right, but I do know the ICE regimen is pretty commonly used in lymphomas, and the side effects don't appear to be as terrible as you fear, although it may be entirely different from person to person..

As for the kid you know who had seizures, maybe you could check with the parents, as it is common for terminal cancers spreading to the brain to cause seizures (i've seen this myself). Seizures doesn't seem to be a common side effect of ICE as far as I can find on the net..

Hope this helps a little..

All the best.

2am said...

I heard from my close friend who happened to be a nurse. She worked in the children department. She said parent who have faith with the doctor, tends to have a higher chance of cure, and yes miracle do happens...

Patrick said...

Dear Jolene

It might help you to know that I lost my child, who would have been 25 years now, to a simple thing called Medicine in 1986.

So I know and understand much better than you do.

In any case, you might wish to review your own thoughts. Because there is always hope for Charmaine. Without forgetting that her brother is there too, because what is happening to Charmaine can also happen to him as they share the same genes and lifestyle.

If you are praying to God, take time to listen to him.

Patrick

Regards

Patrick

F said...

Hi Cyn, Jolene and lil Charmaine!

I agree with Eve - have a good long chat with the doctor to understand fully the situation and proposal. Hope you haven't lose too much sleep, nothing is impossible as long as you believe. =) And many of us believe lil Charmaine is strong! =)

Cheers
Friz

The Second Hippie said...

Patrick, it makes me angry to read your comment. As a mother, Cynthia is doing all her best to get the best treatment for her daughter. How would she know whether the NY treatment works if she doesn't try it in the first place?? She doesn't has a choice. She's trying to FIND ALL WAYS AND MEANS to cure her daughter, even if it means going all the way to NY!!!

You think caring for a sick child with cancer is easy?! YOU are not in her shoes, so making such comments is very crude, and ignorant at best.

Give it up Patrick, and get some life.

Daydreamer said...

Hi Patrick,

Please get on your life, and leave them alone. They are already having terrible time now, why add salt to their wound now.

 
Feisty Princess Charmaine. Design by Pocket