RE: My son - newly diagnosed 18 year old, my daughter to

[Guest guest]

dear sharon

my daughter natasha just turn 19 and she was diagnose last year with cml

leukemia, sorry if i make mistake writing in english , but i am french, beleive

me wen i tell you,, i know exactly how you feel,, the weiting for knowing what

kind of leukemia it is, ect,, my heart was so broken,, i just stated about 3

weeks ago to breath again and i came back to this planet, dont let yourself go,

please dont do like me, i got really sick , i was there for her and still am,

every day we see each other, but i went to hell and back , i was there , same

situation then you. god is testing you, please lets all pray for him and you,

for you to have the courage and strenght to be there for him and him to have the

courage to live, with the pills today, he can live a long long time,, i bet you

, he will survive you. my daughter was on gleevec and that did not work out to

good for her,, her live was lettting go, she went to the hospital for 3 weeks,

and then was off gleevec for 3 month, then her cancer went up a bit, but she had

no choice, she had to let her liver heal. then they change her to sprycel 140

mg and that work very very good, now she is hardly tiyerd and she is living

almost a normal life. bones pain once in a wild that is it, ,, 3 months ago she

went for test and they put her down to 100mg of sprycel,, and her last visite

last month,, we got good news,, she is 1 to a 1000 cancerous cell only,, i was

so happy , i just coudent stop crying,, that is wen i started to breath again

last year was not my year either, i lost my 16 year old dog,, then my mother

died , 4 days after that i found out my daughter have cancer. i dont remember

most of my year, i was so lost and confuse about every thing, it seem like the

hole year just pass by and i dont remember any of it. its weird the way a brain

works. life is a misterie.. but im sure my dear , that you will feel better , it

takes time. but please take care of yourself. dont keep it in like i did ,, talk

about it,im sure it will help a little,

i have a email, its jeanny-f@... or add me to your msn,, if you feel

like talking i will lissen , if you have a question i will answer.

byby take care , and i will pray for you, and dont loose faith in god,

@...: S@...: Sat, 16 Aug 2008

16:20:36 +0000Subject: [ ] 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)

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