My son - newly diagnosed 18 year old

[Guest guest]

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)