hello again from sunny Philippines

[Guest guest]

Hi,

I'm sorry to hear about your daughter's diagnosis. I was myself diagnosed last

year in Oct when I was 22 weeks pregnant and first thing I had was

leaukapheresis treatment (blood wash) 3 times a week, I was told I will have to

go on interferon and have a c-section at 30 weeks. None of that happen and a

month ago on the 18th I gave birth to my 4th child (baby girl, Matilda, she

weighed 8 pounds and 2 ounces) at home on my own (so called freebirth - no

midwife present). It's a long story already but just to make it short here, as

you can imagine the CML diagnosis was a shock and we wanted to know everything

about CML and what are the options in pregnancy. We came across medical articles

on possible curative effects of green tea (EGCG in it to be precise) and I

started drinking 3 to 4 strong brews of green tea brewed straight from the

leaves. It had same effect on my blood as medical alternative offered to your

daughter. It brought my WBC count down to 10.2 at the lowest. I'm still refusing

gleevec as I want to breastfeed my daughter for as long as possible and keep my

WBC count down by drinking green tea. I'm not a doctor and can't tell you what

you should do in your situation, I'm just letting you know what happened to me.

Hope it will all go well for your precious girl.

http://onephotographaday.wordpress.com/pregnancy-and-cml/

From: Aimee Lou J Alvarez

Sent: Saturday, March 20, 2010 5:04 PM

Subject: [ ]

Hello everyone,

Thank you so so much for all the warm welcome. All your responses gave me much

hope and strength. I was so moved by how a lot of you cared so much to welcome

me give a reply. I truly appreciate it. Thank you, thank you....

I have been quite swamped with a lot of things and couldn't find the time to

compose a sensible email right away. I've been having nasty migraines too that

would come and go. What a bummer! But I'm thankful now though that school has

ended for my kids (here in the Philippines at least) so I have more time in my

hands to get on and find out more about CML. This support group is heaven sent

with your great insights and experiences.

My daughter Aia is, thankfully, recovering well. She's still on hydroxyurea and

allopurinol. Occasionally, she does tire easily than her other days but besides

that, she is feeling good that you wouldn't think she has CML at first glance.

It's a great blessing for her dad and I to see her so alive and in great spirits

every single day. She was itching to go back to school even but we have decided

to make her file a leave of absence from her studies.

Aia's (or Cookie as we would call her) WBC count was going down pretty well from

the time she got discharged from the hospital. We have the weekly blood tests to

monitor her counts. So 2 weeks ago, her WBC was at 78K, the following week, it

went up to 128K, and just yesterday, results showed an increase to 143K. Her

oncologist once again increase her hydroxyurea dose. She sometimes has

difficulty sleeping though I would like to think it's more on the emotional

impact of CML on her rather than the medicines' side effects. Consequently, her

hemoglobin count and RBC are also low. But she remains emotionally strong,

really.

So anyway, I've a some questions that you might have some piece to give me on:

1. Her oncologist told us way back that he wants to bring her WBC count to some

low level before she starts with Gleevec (it's Glivec here in the Philippines,

btw). It's at 143K currently. Does anyone have an idea how low it should be

before starting with the drug? I always am stumped at the doctor's office and

would forget to ask the Oncologist what number we're targeting for.

2. In terms of her diet, what are the things that she should avoid?

3. Is it okay to give her natural supplements at this time? Like vitamins, etc.?

4. She's going to take a leave of absence from school meantime. How long do you

think will it take before she can go back to school?

Forgive me if my questions seem shallow. I've these things in my head to ask her

oncologist/ hematologist but they all just go away when we're at his office. I

guess I'm still in the process of taking things in with such slow pace here but

as a mother, I hope you understand why I'm still all frazzled.

Anyway, maybe you've heard this already, but my daughter has been singing this a

lot: Just Stand Up. Just wanted to share this beautiful song for everyone who's

going through the big C. It has made me cry but it uplifted my spirits as well.

Maybe you'd like to hear it too. I especially love the lines:

If the mind keeps thinking You've had enough But the heart keeps telling you

Don't give up

Who are we to be questioning

Wondering what is what?

Don't give up

Through it all

Just stand up.

I've also attached a photo of my daughter taken October 2009. She has big dreams

of becoming doctor and is on her sophomore year as a Pre-Med student until she

was diagnosed last February 2010. Oh dear, I'm praying she lives to fulfill that

and more....

and know that I am praying for all of you here, too. I hope to hear from you

soon.

all the high hopes and love,

Aimee