Re: My son - newly diagnosed 18 year old

[Guest guest]

Hi Sharon,

Sorry that you have to be here but as far as CML is concerned, nobody dies

anymore when they are diagnosed in the chronic phase. Gleevec is a miracle

drug and puts you in a good remission in 90% of the cases. For those 10 or

15% of the cases where Gleevec doesn't work there are a half dozen new drugs

that take care of the CML. Dr. Shah is one of the leading CML specialists in

the world. He will be in good hands with him.

You have come to a great support site for CML. There are many knowledgeable

patients here who can answer all your questions.

Looking forward to enroll him in the Zero Club soon,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of Sharon

Sent: August 16, 2008 12:21 PM

Subject: [ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Oh oh there are two Sharon T's now.

Sharon I will now be called Aloha Sharon so you can stay Sharon T

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Zavie

Sent: Sunday, August 17, 2008 2:05 PM

Subject: RE: [ ] My son - newly diagnosed 18 year old

Hi Sharon,

Sorry that you have to be here but as far as CML is concerned, nobody dies

anymore when they are diagnosed in the chronic phase. Gleevec is a miracle

drug and puts you in a good remission in 90% of the cases. For those 10 or

15% of the cases where Gleevec doesn't work there are a half dozen new drugs

that take care of the CML. Dr. Shah is one of the leading CML specialists in

the world. He will be in good hands with him.

You have come to a great support site for CML. There are many knowledgeable

patients here who can answer all your questions.

Looking forward to enroll him in the Zero Club soon,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Sharon

Sent: August 16, 2008 12:21 PM

groups (DOT) <mailto:%40> com

Subject: [ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Sharon T

Where in Northern California? I am fron Northern Caifornia also-the bay

area.

Discovery Bay actually. Are you near????

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Zavie

Sent: Sunday, August 17, 2008 2:05 PM

Subject: RE: [ ] My son - newly diagnosed 18 year old

Hi Sharon,

Sorry that you have to be here but as far as CML is concerned, nobody dies

anymore when they are diagnosed in the chronic phase. Gleevec is a miracle

drug and puts you in a good remission in 90% of the cases. For those 10 or

15% of the cases where Gleevec doesn't work there are a half dozen new drugs

that take care of the CML. Dr. Shah is one of the leading CML specialists in

the world. He will be in good hands with him.

You have come to a great support site for CML. There are many knowledgeable

patients here who can answer all your questions.

Looking forward to enroll him in the Zero Club soon,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Sharon

Sent: August 16, 2008 12:21 PM

groups (DOT) <mailto:%40> com

Subject: [ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Dear Sharon,

You have definitely come to the right place for support and

information. We all understand exactly how you are feeling right now

as the initial diagnosis can be quite shocking. I'm sure it is even

worse when it is your child that has just received the diagnosis. I

was diagnosed in July, 2007 and I felt like a sledgehammer had hit me

in the head. My sons were then 4 and 1 and I was 30 years old and

terrified of not being here to raise them. Please rest assured that

a lot of wonderful strides have been and continue to be made in the

treatment of CML. You have already taken the proper steps by making

sure that your son is treated by a CML specialist. It is important

that you receive treatment from a doctor who is well versed in

current CML treatment options and monitoring. If you ever need to

talk, we are all here for you. To quote my doctor, " live your life

as you would have before diagnosis with just a few more bumps along

the way. " Your son is in good hands. God bless you and your family.

NYC

>

> My son who just turned 18 was just yesterday diagnosed with CML

> The wait for those results was just so heavy and stressful each day

> became more and more painful so in a way even though it was the

> worst news possible I was glad that we finally know and can move

> forward. I'm devastated to say the least and I can't seem to pick

> myself up off the floor today. We are working with UCSF and he is

> set to move out from home next Saturday and will be attending

> University of California Berkeley so he's moving into the dorms.

> This is suppose to be the most exciting time of his life, he's just

> starting at the most prestigous private university in the world and

> was so excited, he probably still is. He's just as shocked as I am

> am and yet he's being so brave, I think more for me than himself.

I

> just tore me apart to see him cry yesterday from fear. You see

> we've already been through hell and back as he was also diagnosed

> just 18 months ago with Cystic Fibrosis, a chronic genetic

> disorder. I feel so guilty as a mother as if I've given my son not

> just one death sentence but 2, how could the Lord be so cruel and I

> don't know how to find the strength right now. We were initially

> working with the Pediatric Oncologists at UCSF but they want to

> transfer him to the adult specialist who is suppose to be one of

the

> best in the country Dr. Neil Shah (sp may be wrong). We see him

> first thing Monday morning. They believe based on the BCR-ABL that

> he is in the chronic phase or so we hope and that they caught it

> early on. His last normal CBC count was in Sept 07. They ran a

CBC

> as part of his routine CF care clinic appointment on July 31st and

> on August 1st my world came crumbling down with one phone call that

> they needed him back immediately for repeat blood testing. I

cannot

> tell you the fear that I have right now. I feel as if God is

trying

> to take my son from me and that fear has got the best of me right

> now. How do I cope and what can I do to help him aside from making

> sure he gets the best care possible. I've been real proud of

myself

> last couple weeks while waiting because I've been showing an

> incredible amount of courage through all this and I haven't except

> for yesterday cried in front of him until after it was offically

> diagnosed. I just can't show him my fear, I just want to show him

> the strength I've always shown him through all our life challenges

> so that he can find his strength too but this is too much and so

> hard right now. I've been right by his side and will continue to

be

> by his side through this. I'm trying real hard to find the courage

> from within but I'm scared out of my mind. He only has 1

biological

> sister and all I can think suddenly and this is the only time I've

> ever thought this because my marriage to his father was so bad is

> that I wish we would have had more children together instead of

just

> the 2. What if my daughter is not a bone marrow match for him, I

> know I'm probably getting ahead of myself here but I'm afraid. Is

> that something the doctors start addressing right away a potential

> bone marrow donor or what? I guess I just want to know that if the

> medicines dont work and if he starts progressing into the next

phase

> that he will have a chance and someone to help him should we have

to

> go that route. Can a parent be a match? Any words of wisdom and

> support would be so greatly appreciated. This young man is my

> heart, he's the best of me, he's better and he's my life. I simply

> don't know if I could survive without him. He's done so well and

> accomplished so much for himself and I'm so afraid that I can't

> breathe right now.

>

> Thanks for the help and support.

>

> SharonT (scared mother in Northern California)

>

[Guest guest]

Dear Sharon,

Slow down and take a deep breath....your son is not going to die from CML

today nor tomorrow and possibly never. I am sure everyone else has told you the

chronic phase of CML can last five years and now with new drugs possibly longer.

Take one day at a time one breath at a time and it will be okay. God did'nt do

this and neither did you! CML is not hereditary. There are several things that

can cause it, in my case I smoke and I believe because I had so many many x-rays

growing up that that is why I have it. I will have been dx'ed five years in

October. Is it scary? Yes, very, especially when you are first dx'ed and don't

know that much about the disease. Is a bone marrow transplant absolutely needed,

maybe not. I opted not to have one. My one brother was not a match but I still

could have found a doner from the doner list. But after researching BMT's I

decided there were enough drugs in the pipeline (trials) that I should never

have to have one. They will probably start him out on Gleevec which is a great

drug and should bring him into remission fairly quickly. I reached O in two

months on Gleevec, there is another drug called Sprycel (which I am on now) and

a brand new one called Tasigna. They are constantely coming up with new and

better drugs to treat CML.You and he just need to talk about the options and

choose what is right for him. Don't worry yourself sick, this group is a wealth

of information and support and are more then glad to answer questions, supply

data, listen and respond or just simply let you rattle and vent (which I am very

good at...lol..the rattling and venting part...hehe) so just take it easy, it

will be okay and we are all here for both of you!

HUgs,

Katy

From: S@...

Date: Sat, 16 Aug 2008 16:20:36 +0000

Subject: [ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

_________________________________________________________________

Be the filmmaker you always wanted to be—learn how to burn a DVD with Windows®.

http://clk.atdmt.com/MRT/go/108588797/direct/01/

[Guest guest]

Dear Sharon

I am sorry that you had reason to find this group but glad you found us!

I am mom to a 25 year old cml-er. He was diagnosed in March '06 and I totally

relate to

your fears and terrors. These are really scary days for you too and not much

except a bit

of time and a few good blood test results will change that. The support groups

have been

totally priceless to me, especially in the early days - I always felt as if I

had a hand to hold

and a shoulder to cry on. Amazing people here.

After just over two years, its definately easier. Waiting for results still

make me " frilly " and

sometimes just the thought of my son having leukemia makes me weak at the knees,

but

now I know he is going to be ok.

He is doing great on Gleevec with very few side effects. He had just moved out

of the

house three weeks before, when he was diagnosed. Since he was dx'd, this young

man

has taken life by the horns and has grown in a beautiful way and is getting

married in

April. They say what wont kill you will make you strong - and this is the case

with cml! It

will make him stronger, and you too.

Please feel free to contact me if you want to, or go to my blog where I write

about my

coping and not coping with and cml.

From one mom to another comes a seriously big hug and a hand to hang on to any

time

you need to.

love and light

Annie

's mom

http://livingwithcml.blogspot.com

>

> My son who just turned 18 was just yesterday diagnosed with CML

> The wait for those results was just so heavy and stressful each day

> became more and more painful so in a way even though it was the

> worst news possible I was glad that we finally know and can move

> forward. I'm devastated to say the least and I can't seem to pick

> myself up off the floor today. We are working with UCSF and he is

> set to move out from home next Saturday and will be attending

> University of California Berkeley so he's moving into the dorms.

> This is suppose to be the most exciting time of his life, he's just

> starting at the most prestigous private university in the world and

> was so excited, he probably still is. He's just as shocked as I am

> am and yet he's being so brave, I think more for me than himself. I

> just tore me apart to see him cry yesterday from fear. You see

> we've already been through hell and back as he was also diagnosed

> just 18 months ago with Cystic Fibrosis, a chronic genetic

> disorder. I feel so guilty as a mother as if I've given my son not

> just one death sentence but 2, how could the Lord be so cruel and I

> don't know how to find the strength right now. We were initially

> working with the Pediatric Oncologists at UCSF but they want to

> transfer him to the adult specialist who is suppose to be one of the

> best in the country Dr. Neil Shah (sp may be wrong). We see him

> first thing Monday morning. They believe based on the BCR-ABL that

> he is in the chronic phase or so we hope and that they caught it

> early on. His last normal CBC count was in Sept 07. They ran a CBC

> as part of his routine CF care clinic appointment on July 31st and

> on August 1st my world came crumbling down with one phone call that

> they needed him back immediately for repeat blood testing. I cannot

> tell you the fear that I have right now. I feel as if God is trying

> to take my son from me and that fear has got the best of me right

> now. How do I cope and what can I do to help him aside from making

> sure he gets the best care possible. I've been real proud of myself

> last couple weeks while waiting because I've been showing an

> incredible amount of courage through all this and I haven't except

> for yesterday cried in front of him until after it was offically

> diagnosed. I just can't show him my fear, I just want to show him

> the strength I've always shown him through all our life challenges

> so that he can find his strength too but this is too much and so

> hard right now. I've been right by his side and will continue to be

> by his side through this. I'm trying real hard to find the courage

> from within but I'm scared out of my mind. He only has 1 biological

> sister and all I can think suddenly and this is the only time I've

> ever thought this because my marriage to his father was so bad is

> that I wish we would have had more children together instead of just

> the 2. What if my daughter is not a bone marrow match for him, I

> know I'm probably getting ahead of myself here but I'm afraid. Is

> that something the doctors start addressing right away a potential

> bone marrow donor or what? I guess I just want to know that if the

> medicines dont work and if he starts progressing into the next phase

> that he will have a chance and someone to help him should we have to

> go that route. Can a parent be a match? Any words of wisdom and

> support would be so greatly appreciated. This young man is my

> heart, he's the best of me, he's better and he's my life. I simply

> don't know if I could survive without him. He's done so well and

> accomplished so much for himself and I'm so afraid that I can't

> breathe right now.

>

> Thanks for the help and support.

>

> SharonT (scared mother in Northern California)

>

[Guest guest]

 Sharon,

 

I'm so sorry for your pain! I know you will get lots of support from this group!

But to give you hope, I have been taking Gleevec 600 mg. for 5-1/2 years now.

Life has changed but it is still life! You can talk to us any time and about

anything. Even for those like me who don't post very often, we still read and

say our prayers.

 

Just take one day at a time.

 

Moe

dxd 2/2003

From: Sharon <S@...>

Subject: [ ] My son - newly diagnosed 18 year old

Date: Saturday, August 16, 2008, 12:20 PM

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Hi Sharon, my name is Kristie. I cannot even imagine how you are feeling right

now. My grandmother was diagnosed with CML at 80 years of age. It will be 2

years in October. She is on Gleevec 400 mg. In the beginning it was just a

milestone to get her medicine paid for. I think there for a while, it seemed

like that was more important than the fact that she had CML. I am an only child.

My father was also and he passed away 13 1/2 yrs. ago. I see to my grandmother

and she was just diagnosed with a multinodual goiter (thyroid) on top of CML.

Not only was she so tired from the Gleevec, but the thyroid had her so weak she

could not hold her head up. I tell you all of this to say that there are days

when I get depressed because she feels so bad and I worry about her so much. I

find myself waking at all hours of the night worrying about her. I cannot and

will not tell you that you will ever get ok with it. It will get better. I know

you want to be strong for him, but you have to let it out. You wait till he is

not there and you cry your eyes out, if that is what you need to do. Do not keep

it balled up inside. You have to take care of yourself for him. I am amazed at

my grandmother some days, at the way she will try to hide how bad she feels for

my sake. I hope you are a Christian and have faith in GOD. I know it's hard to

see right now, but there is a reason for everything that happens to us. I know

sometimes life can be cruel. But, what I am saying is, I think it is wonderful

that he is going on to college and living his life to the fullest. I have two

sons and I know it will be even harder to let him go off now, but it will be

good for him. He needs to enjoy life to the fullest everyday. You may want to

find a support group. It always helps to be able to talk to people that are

going through the same thing you are. You can find out how they are coping.

[ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Sharon,

I'm in the East Bay and have been on Gleevec for eight years and have

been " undetectable " for leukemia for six years. Dr. Neil Shah is my

physician and you will find him a most compassionate and caring doctor,

as well as exceptionally well versed in CML.

B from California

[Guest guest]

Kristie again. What I meant to say about a support group was, to see if there is

one in your town and talk to face to face with people that are going through the

same thing you are. This group has been great!

[ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Hi Sharon,  I will put your son in my prayers.  I have had cml for over 13

years, I live a normal life, have been in a few clinical trials, and I want to

tell you  please do not worry.  You are in great hands with your doctor, and

this list will be able to help you in many ways.

I know me, at 78, getting cml is no where near the same as your young son

getting it, and my heart breaks for you.  When I was first diagnosed, they told

me I had 5 years to live.  Today they do not put a limit on it, due to the

wonderful new drugs available, there is no limit on life with cml. As you have

seen already, there are many people here that will be able to help you through

this very difficult time, blessings, Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

From: Zavie <zmiller@...>

Subject: RE: [ ] My son - newly diagnosed 18 year old

Date: Sunday, August 17, 2008, 5:04 PM

Hi Sharon,

Sorry that you have to be here but as far as CML is concerned, nobody dies

anymore when they are diagnosed in the chronic phase. Gleevec is a miracle

drug and puts you in a good remission in 90% of the cases. For those 10 or

15% of the cases where Gleevec doesn't work there are a half dozen new drugs

that take care of the CML. Dr. Shah is one of the leading CML specialists in

the world. He will be in good hands with him.

You have come to a great support site for CML. There are many knowledgeable

patients here who can answer all your questions.

Looking forward to enroll him in the Zero Club soon,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Sharon

Sent: August 16, 2008 12:21 PM

groups (DOT) com

Subject: [ ] My son - newly diagnosed 18 year old

My son who just turned 18 was just yesterday diagnosed with CML

The wait for those results was just so heavy and stressful each day

became more and more painful so in a way even though it was the

worst news possible I was glad that we finally know and can move

forward. I'm devastated to say the least and I can't seem to pick

myself up off the floor today. We are working with UCSF and he is

set to move out from home next Saturday and will be attending

University of California Berkeley so he's moving into the dorms.

This is suppose to be the most exciting time of his life, he's just

starting at the most prestigous private university in the world and

was so excited, he probably still is. He's just as shocked as I am

am and yet he's being so brave, I think more for me than himself. I

just tore me apart to see him cry yesterday from fear. You see

we've already been through hell and back as he was also diagnosed

just 18 months ago with Cystic Fibrosis, a chronic genetic

disorder. I feel so guilty as a mother as if I've given my son not

just one death sentence but 2, how could the Lord be so cruel and I

don't know how to find the strength right now. We were initially

working with the Pediatric Oncologists at UCSF but they want to

transfer him to the adult specialist who is suppose to be one of the

best in the country Dr. Neil Shah (sp may be wrong). We see him

first thing Monday morning. They believe based on the BCR-ABL that

he is in the chronic phase or so we hope and that they caught it

early on. His last normal CBC count was in Sept 07. They ran a CBC

as part of his routine CF care clinic appointment on July 31st and

on August 1st my world came crumbling down with one phone call that

they needed him back immediately for repeat blood testing. I cannot

tell you the fear that I have right now. I feel as if God is trying

to take my son from me and that fear has got the best of me right

now. How do I cope and what can I do to help him aside from making

sure he gets the best care possible. I've been real proud of myself

last couple weeks while waiting because I've been showing an

incredible amount of courage through all this and I haven't except

for yesterday cried in front of him until after it was offically

diagnosed. I just can't show him my fear, I just want to show him

the strength I've always shown him through all our life challenges

so that he can find his strength too but this is too much and so

hard right now. I've been right by his side and will continue to be

by his side through this. I'm trying real hard to find the courage

from within but I'm scared out of my mind. He only has 1 biological

sister and all I can think suddenly and this is the only time I've

ever thought this because my marriage to his father was so bad is

that I wish we would have had more children together instead of just

the 2. What if my daughter is not a bone marrow match for him, I

know I'm probably getting ahead of myself here but I'm afraid. Is

that something the doctors start addressing right away a potential

bone marrow donor or what? I guess I just want to know that if the

medicines dont work and if he starts progressing into the next phase

that he will have a chance and someone to help him should we have to

go that route. Can a parent be a match? Any words of wisdom and

support would be so greatly appreciated. This young man is my

heart, he's the best of me, he's better and he's my life. I simply

don't know if I could survive without him. He's done so well and

accomplished so much for himself and I'm so afraid that I can't

breathe right now.

Thanks for the help and support.

SharonT (scared mother in Northern California)

[Guest guest]

Hello Sharon

I am so sorry to hear about your son. I was DX when I was 22, and

it was very scary. There is life and hope with Gleevec. I am now 27

years ond, and I will be on my 5th year with CML in November. Life

is pretty good, some days are worse then others, but side effects

are slim and no compliats from this side. I have been married for 2

years and living my life like I dont have cancer, I just have to

remember to take my little gold pill eveyday. I have to siblings and

neither are a match.

>

> My son who just turned 18 was just yesterday diagnosed with CML

> The wait for those results was just so heavy and stressful each

day

> became more and more painful so in a way even though it was the

> worst news possible I was glad that we finally know and can move

> forward. I'm devastated to say the least and I can't seem to pick

> myself up off the floor today. We are working with UCSF and he is

> set to move out from home next Saturday and will be attending

> University of California Berkeley so he's moving into the dorms.

> This is suppose to be the most exciting time of his life, he's

just

> starting at the most prestigous private university in the world

and

> was so excited, he probably still is. He's just as shocked as I

am

> am and yet he's being so brave, I think more for me than himself.

I

> just tore me apart to see him cry yesterday from fear. You see

> we've already been through hell and back as he was also diagnosed

> just 18 months ago with Cystic Fibrosis, a chronic genetic

> disorder. I feel so guilty as a mother as if I've given my son

not

> just one death sentence but 2, how could the Lord be so cruel and

I

> don't know how to find the strength right now. We were initially

> working with the Pediatric Oncologists at UCSF but they want to

> transfer him to the adult specialist who is suppose to be one of

the

> best in the country Dr. Neil Shah (sp may be wrong). We see him

> first thing Monday morning. They believe based on the BCR-ABL

that

> he is in the chronic phase or so we hope and that they caught it

> early on. His last normal CBC count was in Sept 07. They ran a

CBC

> as part of his routine CF care clinic appointment on July 31st and

> on August 1st my world came crumbling down with one phone call

that

> they needed him back immediately for repeat blood testing. I

cannot

> tell you the fear that I have right now. I feel as if God is

trying

> to take my son from me and that fear has got the best of me right

> now. How do I cope and what can I do to help him aside from

making

> sure he gets the best care possible. I've been real proud of

myself

> last couple weeks while waiting because I've been showing an

> incredible amount of courage through all this and I haven't except

> for yesterday cried in front of him until after it was offically

> diagnosed. I just can't show him my fear, I just want to show him

> the strength I've always shown him through all our life challenges

> so that he can find his strength too but this is too much and so

> hard right now. I've been right by his side and will continue to

be

> by his side through this. I'm trying real hard to find the

courage

> from within but I'm scared out of my mind. He only has 1

biological

> sister and all I can think suddenly and this is the only time I've

> ever thought this because my marriage to his father was so bad is

> that I wish we would have had more children together instead of

just

> the 2. What if my daughter is not a bone marrow match for him, I

> know I'm probably getting ahead of myself here but I'm afraid. Is

> that something the doctors start addressing right away a potential

> bone marrow donor or what? I guess I just want to know that if

the

> medicines dont work and if he starts progressing into the next

phase

> that he will have a chance and someone to help him should we have

to

> go that route. Can a parent be a match? Any words of wisdom and

> support would be so greatly appreciated. This young man is my

> heart, he's the best of me, he's better and he's my life. I

simply

> don't know if I could survive without him. He's done so well and

> accomplished so much for himself and I'm so afraid that I can't

> breathe right now.

>

> Thanks for the help and support.

>

> SharonT (scared mother in Northern California)

>

[Guest guest]

Dear Sharon T, I was just diagnosed in March and although I am 52 I was just as

scared. The people on this website are so informative . The have helped me so

much . You are both in my prayers as are all of the warriors I have met through

this site . God Bless.

From: formiga101

Sent: Monday, August 18, 2008 2:35 PM

Subject: [ ] Re: My son - newly diagnosed 18 year old

Hello Sharon

I am so sorry to hear about your son. I was DX when I was 22, and

it was very scary. There is life and hope with Gleevec. I am now 27

years ond, and I will be on my 5th year with CML in November. Life

is pretty good, some days are worse then others, but side effects

are slim and no compliats from this side. I have been married for 2

years and living my life like I dont have cancer, I just have to

remember to take my little gold pill eveyday. I have to siblings and

neither are a match.

>

> My son who just turned 18 was just yesterday diagnosed with CML

> The wait for those results was just so heavy and stressful each

day

> became more and more painful so in a way even though it was the

> worst news possible I was glad that we finally know and can move

> forward. I'm devastated to say the least and I can't seem to pick

> myself up off the floor today. We are working with UCSF and he is

> set to move out from home next Saturday and will be attending

> University of California Berkeley so he's moving into the dorms.

> This is suppose to be the most exciting time of his life, he's

just

> starting at the most prestigous private university in the world

and

> was so excited, he probably still is. He's just as shocked as I

am

> am and yet he's being so brave, I think more for me than himself.

I

> just tore me apart to see him cry yesterday from fear. You see

> we've already been through hell and back as he was also diagnosed

> just 18 months ago with Cystic Fibrosis, a chronic genetic

> disorder. I feel so guilty as a mother as if I've given my son

not

> just one death sentence but 2, how could the Lord be so cruel and

I

> don't know how to find the strength right now. We were initially

> working with the Pediatric Oncologists at UCSF but they want to

> transfer him to the adult specialist who is suppose to be one of

the

> best in the country Dr. Neil Shah (sp may be wrong). We see him

> first thing Monday morning. They believe based on the BCR-ABL

that

> he is in the chronic phase or so we hope and that they caught it

> early on. His last normal CBC count was in Sept 07. They ran a

CBC

> as part of his routine CF care clinic appointment on July 31st and

> on August 1st my world came crumbling down with one phone call

that

> they needed him back immediately for repeat blood testing. I

cannot

> tell you the fear that I have right now. I feel as if God is

trying

> to take my son from me and that fear has got the best of me right

> now. How do I cope and what can I do to help him aside from

making

> sure he gets the best care possible. I've been real proud of

myself

> last couple weeks while waiting because I've been showing an

> incredible amount of courage through all this and I haven't except

> for yesterday cried in front of him until after it was offically

> diagnosed. I just can't show him my fear, I just want to show him

> the strength I've always shown him through all our life challenges

> so that he can find his strength too but this is too much and so

> hard right now. I've been right by his side and will continue to

be

> by his side through this. I'm trying real hard to find the

courage

> from within but I'm scared out of my mind. He only has 1

biological

> sister and all I can think suddenly and this is the only time I've

> ever thought this because my marriage to his father was so bad is

> that I wish we would have had more children together instead of

just

> the 2. What if my daughter is not a bone marrow match for him, I

> know I'm probably getting ahead of myself here but I'm afraid. Is

> that something the doctors start addressing right away a potential

> bone marrow donor or what? I guess I just want to know that if

the

> medicines dont work and if he starts progressing into the next

phase

> that he will have a chance and someone to help him should we have

to

> go that route. Can a parent be a match? Any words of wisdom and

> support would be so greatly appreciated. This young man is my

> heart, he's the best of me, he's better and he's my life. I

simply

> don't know if I could survive without him. He's done so well and

> accomplished so much for himself and I'm so afraid that I can't

> breathe right now.

>

> Thanks for the help and support.

>

> SharonT (scared mother in Northern California)

>

[Guest guest]

Dear Sharon T,

I was Dx'd april 2007 was in the blast phase and was told would not ever make

remission. I am in full remission.

And living a normal life with many many more years to come. Only God knows when

our time is up.

I was also told would not make it without a bone marrow transplant. That is not

an option I will take.

You are both in my prayers., God be with you and your son.

Many blessings sent your way

Anita

[ ] Re: My son - newly diagnosed 18 year old

Hello Sharon

I am so sorry to hear about your son. I was DX when I was 22, and

it was very scary. There is life and hope with Gleevec. I am now 27

years ond, and I will be on my 5th year with CML in November. Life

is pretty good, some days are worse then others, but side effects

are slim and no compliats from this side. I have been married for 2

years and living my life like I dont have cancer, I just have to

remember to take my little gold pill eveyday. I have to siblings and

neither are a match.

>

> My son who just turned 18 was just yesterday diagnosed with CML

> The wait for those results was just so heavy and stressful each

day

> became more and more painful so in a way even though it was the

> worst news possible I was glad that we finally know and can move

> forward. I'm devastated to say the least and I can't seem to pick

> myself up off the floor today. We are working with UCSF and he is

> set to move out from home next Saturday and will be attending

> University of California Berkeley so he's moving into the dorms.

> This is suppose to be the most exciting time of his life, he's

just

> starting at the most prestigous private university in the world

and

> was so excited, he probably still is. He's just as shocked as I

am

> am and yet he's being so brave, I think more for me than himself.

I

> just tore me apart to see him cry yesterday from fear. You see

> we've already been through hell and back as he was also diagnosed

> just 18 months ago with Cystic Fibrosis, a chronic genetic

> disorder. I feel so guilty as a mother as if I've given my son

not

> just one death sentence but 2, how could the Lord be so cruel and

I

> don't know how to find the strength right now. We were initially

> working with the Pediatric Oncologists at UCSF but they want to

> transfer him to the adult specialist who is suppose to be one of

the

> best in the country Dr. Neil Shah (sp may be wrong). We see him

> first thing Monday morning. They believe based on the BCR-ABL

that

> he is in the chronic phase or so we hope and that they caught it

> early on. His last normal CBC count was in Sept 07. They ran a

CBC

> as part of his routine CF care clinic appointment on July 31st and

> on August 1st my world came crumbling down with one phone call

that

> they needed him back immediately for repeat blood testing. I

cannot

> tell you the fear that I have right now. I feel as if God is

trying

> to take my son from me and that fear has got the best of me right

> now. How do I cope and what can I do to help him aside from

making

> sure he gets the best care possible. I've been real proud of

myself

> last couple weeks while waiting because I've been showing an

> incredible amount of courage through all this and I haven't except

> for yesterday cried in front of him until after it was offically

> diagnosed. I just can't show him my fear, I just want to show him

> the strength I've always shown him through all our life challenges

> so that he can find his strength too but this is too much and so

> hard right now. I've been right by his side and will continue to

be

> by his side through this. I'm trying real hard to find the

courage

> from within but I'm scared out of my mind. He only has 1

biological

> sister and all I can think suddenly and this is the only time I've

> ever thought this because my marriage to his father was so bad is

> that I wish we would have had more children together instead of

just

> the 2. What if my daughter is not a bone marrow match for him, I

> know I'm probably getting ahead of myself here but I'm afraid. Is

> that something the doctors start addressing right away a potential

> bone marrow donor or what? I guess I just want to know that if

the

> medicines dont work and if he starts progressing into the next

phase

> that he will have a chance and someone to help him should we have

to

> go that route. Can a parent be a match? Any words of wisdom and

> support would be so greatly appreciated. This young man is my

> heart, he's the best of me, he's better and he's my life. I

simply

> don't know if I could survive without him. He's done so well and

> accomplished so much for himself and I'm so afraid that I can't

> breathe right now.

>

> Thanks for the help and support.

>

> SharonT (scared mother in Northern California)

>

[Guest guest]

---Dear Sharon T,

Any one would feel like you do when your child has just been dx.I

can't even imagine someone telling me my child had any disease, after

you have a big cry you will feel better,and even better on monday

when you see the dr.because he will tell you your son will be just

fine. It's a shock at first but the more knowledge you have about

this disease the better you'll feel.,and this is where you get all

your questions answered [besides your dr.] Everyone here will help

you thru this they know so much.Half your battle is fought because

you have such a good dr.I was dx. in oct,of 06 the first 3 months

weren't so good but after that everything started getting better,now

i feel pretty good most days.Let us know how he makes out Monday and

our prayers are with him.

Esther

In , anita <awristen1@...> wrote:

>

> Dear Sharon T,

> I was Dx'd april 2007 was in the blast phase and was told would not

ever make remission. I am in full remission.

> And living a normal life with many many more years to come. Only

God knows when our time is up.

> I was also told would not make it without a bone marrow transplant.

That is not an option I will take.

> You are both in my prayers., God be with you and your son.

> Many blessings sent your way

> Anita

>

>

>

> [ ] Re: My son - newly diagnosed 18 year old

>

> Hello Sharon

>

> I am so sorry to hear about your son. I was DX when I was 22, and

> it was very scary. There is life and hope with Gleevec. I am now 27

> years ond, and I will be on my 5th year with CML in November. Life

> is pretty good, some days are worse then others, but side effects

> are slim and no compliats from this side. I have been married for 2

> years and living my life like I dont have cancer, I just have to

> remember to take my little gold pill eveyday. I have to siblings

and

> neither are a match.

>

>

>

> >

> > My son who just turned 18 was just yesterday diagnosed with CML

> > The wait for those results was just so heavy and stressful each

> day

> > became more and more painful so in a way even though it was the

> > worst news possible I was glad that we finally know and can move

> > forward. I'm devastated to say the least and I can't seem to pick

> > myself up off the floor today. We are working with UCSF and he is

> > set to move out from home next Saturday and will be attending

> > University of California Berkeley so he's moving into the dorms.

> > This is suppose to be the most exciting time of his life, he's

> just

> > starting at the most prestigous private university in the world

> and

> > was so excited, he probably still is. He's just as shocked as I

> am

> > am and yet he's being so brave, I think more for me than himself.

> I

> > just tore me apart to see him cry yesterday from fear. You see

> > we've already been through hell and back as he was also diagnosed

> > just 18 months ago with Cystic Fibrosis, a chronic genetic

> > disorder. I feel so guilty as a mother as if I've given my son

> not

> > just one death sentence but 2, how could the Lord be so cruel and

> I

> > don't know how to find the strength right now. We were initially

> > working with the Pediatric Oncologists at UCSF but they want to

> > transfer him to the adult specialist who is suppose to be one of

> the

> > best in the country Dr. Neil Shah (sp may be wrong). We see him

> > first thing Monday morning. They believe based on the BCR-ABL

> that

> > he is in the chronic phase or so we hope and that they caught it

> > early on. His last normal CBC count was in Sept 07. They ran a

> CBC

> > as part of his routine CF care clinic appointment on July 31st

and

> > on August 1st my world came crumbling down with one phone call

> that

> > they needed him back immediately for repeat blood testing. I

> cannot

> > tell you the fear that I have right now. I feel as if God is

> trying

> > to take my son from me and that fear has got the best of me right

> > now. How do I cope and what can I do to help him aside from

> making

> > sure he gets the best care possible. I've been real proud of

> myself

> > last couple weeks while waiting because I've been showing an

> > incredible amount of courage through all this and I haven't

except

> > for yesterday cried in front of him until after it was offically

> > diagnosed. I just can't show him my fear, I just want to show him

> > the strength I've always shown him through all our life

challenges

> > so that he can find his strength too but this is too much and so

> > hard right now. I've been right by his side and will continue to

> be

> > by his side through this. I'm trying real hard to find the

> courage

> > from within but I'm scared out of my mind. He only has 1

> biological

> > sister and all I can think suddenly and this is the only time

I've

> > ever thought this because my marriage to his father was so bad is

> > that I wish we would have had more children together instead of

> just

> > the 2. What if my daughter is not a bone marrow match for him, I

> > know I'm probably getting ahead of myself here but I'm afraid. Is

> > that something the doctors start addressing right away a

potential

> > bone marrow donor or what? I guess I just want to know that if

> the

> > medicines dont work and if he starts progressing into the next

> phase

> > that he will have a chance and someone to help him should we have

> to

> > go that route. Can a parent be a match? Any words of wisdom and

> > support would be so greatly appreciated. This young man is my

> > heart, he's the best of me, he's better and he's my life. I

> simply

> > don't know if I could survive without him. He's done so well and

> > accomplished so much for himself and I'm so afraid that I can't

> > breathe right now.

> >

> > Thanks for the help and support.

> >

> > SharonT (scared mother in Northern California)

> >

>

>