Re: Update on my son ie (18 year old)

August 21, 2008

Dear Sharon and ie, you are in my thoughts and prayers daily. God Bless;

Eva

From: Sharon

Sent: Wednesday, August 20, 2008 10:36 PM

Subject: [ ] Update on my son ie (18 year old)

I want to start by saying a big thank you to all of you. The

support here has been awesome. I received such compassionate and

caring messages, private emails and prayers and support and I was

very moved by the words and support I got so I thank you all from

the bottom of my heart for that. I hope to someday give someone the

support you all gave me. I'm sorry it's taken so long to update but

it's been such a busy week so far. On Monday we met with Dr. Neil

Shah who was absolutely wonderful. He talked and we listened and it

was all so overwhelming and so much to absorb at once, I'm glad I

have an audio recording I've listened to his words several times now

since Monday. ie had his bone marrow biopsy/aspiration on

Tuesday morning, we're not wasting any time, especially since he's

starting at UC Berkeley next Monday. We hope to hear Chronic/stage1

within a week or so and all my prayers have now been consumed with

wanting to hear the words chronic not accelerated an not blast

phase. Dr. Shah was pretty confident but not certain that ie

is in the chronic stage. The bone marrow procedure was awful. I

don't even have the words to describe the pain and tears that were

flowing, I maintained my composure and didn't outright sob while

holding my son's hand but my tears flowed with his but I think mine

flowed stronger and faster. He was in a lot of pain and nothing

could prepare me for witnessing that procedure and the thought that

he has to go through that every six months or so is distressing but

we'll do whatever it takes to get him better. I'm not a scared as

last Friday but I'm still frightened as hell. I think I'm

definitely feeling a little stronger though. All your stories and

support were very helpful, many thanks to each and every one of

you. I pray that Gleevac will work for him. They advised us that

we should immediately start banking some of his sperm just in case,

that's been heavy on my mind and today I got an appointment set up

for him for Friday so they can begin that process. I wish more than

anything that we didn't have to travel this road but I don't ever

want him or I to have regrets on that decision and I want him to

someday be able to experience the joy that a child brings to your

life and if by doing this it may someday help him than I will move

mountains and figure out how we're going to pay for it. I've been

so financially strapped since paying for his tuition and first year

college expenses, laptops, frig, etc. etc. but somehow I'm praying

that the Lord will help me find a way to fund the banking of his

sperm. He's on board 100%, he heard and understood completely

everything Dr. Shah said to us. They typed him for the bone marrow

registry and they are getting approval to type my daughter to see if

she is a match just in case. I'm so afraid and know that there is a

greater chance that she is not a match for him than there is a

chance that she is but I'm trying to hold out hope on that, maybe

something will go right I pray. I'm afraid due to our ethnic

background being Hispanic that there is a less likely chance that he

will have an available donor already on the registry but we'll see.

The bone marrow transplant coordinator was really sweet to us. She

was explaining to us that if sibling doesn't match that they would

go to registry before family testing would be done because of the

costs. Does anyone know what kind of costs were talking about, I

need to be prepared. How can I get my family members typed is there

a way to have them tested that doesn't cost so much?

ie is doing better today, sore and tired but OK. His

girlfriend was with us through the entire week and nursed my son so

sweetly yesterday. I love this girl for standing by my son not just

with his first diagnosis of CF but by his side during this CML

diagnosis. I don't know many 18 year old girls that would be ok and

love unconditionally when faced with such a scary diagnosis.

Anyway, I will update as soon as we get his results and ask for your

continued support and prayers. The outpouring of support has meant

to much to me and to ie, I let him read all of your posts in

hopes that your words will help him as much has they helped me.

Take care and many thanks again.

Sharon

Fairfield, CA

August 22, 2008

Dear Sharon T,

I tried to send a message to you individually, but it bounced back

for some reason. I am so glad that you liked Dr. Shah. He is a

wonderful person and and is among the top scientists studying CML as

well. This is because he was in on the ground floor at UCLA for the

Gleevec and Sprycel research and has run many clinical trials. He

presents his research findings at the ASH (American Society of

Hematology) meeting every December. He is considered one of the

foremost experts in CML.

Dr. Shah was one of my doctors at UCLA until he moved to UCSF. As a

participant in the Phase 1 trial for Gleevec, I even gave a

presentation with him at an LLS symposium. The two of us were also in

a video made for the web about managing Gleevec's side effects. So,

you see, I know him well and still stay in contact with him. I admire

him very much and would go to him in a second if anything began to go

wrong with my remission from CML. I would put my life in his hands

without reservation and I know he would save me again.

Although I am an older adult (62) and my experience with this disease

may be different from your son's, I think that my story can offer you

both hope. On August 6, I had my 11 year anniversary of diagnosis.

When I was diagnosed CML patients lived for 3-5 years while

undergoing debilitating treatment and then died. Now the picture is

quite different. As I am one of the first people in the world to take

an effective dose of Gleevec, they are following me and others like

me to see how things go. So far, they say the prognosis is maybe

forever for those who have been on Gleevec for a long time (I have

been taking it for 9 1/2 years) and that is good news, but they are

also coming very close to a cure. Researchers all over the world are

working very hard, and I believe they will find it very soon.

Have you contacted your nearest Leukemia & Lymphoma Society chapter

(via the website or phone) to ask for a First Connection? They will

put you in touch with another mother and your son with another young

man who has been through the same thing you are going through if you

would like to speak with someone in the same situation. I am a First

Connection volunteer, and I know for a fact there is nothing moe

comforting than finding out you are not alone. I am so happy you are

with Dr. Shah. He's definitely one of the good guys of this world of

ours. If I can help in any way, please let me know.

Virginia Garner

-- In , " Sharon " <S@...> wrote:

>

> I want to start by saying a big thank you to all of you. The

> support here has been awesome. I received such compassionate and

> caring messages, private emails and prayers and support and I was

> very moved by the words and support I got so I thank you all from

> the bottom of my heart for that. I hope to someday give someone

the

> support you all gave me. I'm sorry it's taken so long to update

but

> it's been such a busy week so far. On Monday we met with Dr. Neil

> Shah who was absolutely wonderful. He talked and we listened and

it

> was all so overwhelming and so much to absorb at once, I'm glad I

> have an audio recording I've listened to his words several times

now

> since Monday. ie had his bone marrow biopsy/aspiration on

> Tuesday morning, we're not wasting any time, especially since he's

> starting at UC Berkeley next Monday. We hope to hear

Chronic/stage1

> within a week or so and all my prayers have now been consumed with

> wanting to hear the words chronic not accelerated an not blast

> phase. Dr. Shah was pretty confident but not certain that ie

> is in the chronic stage. The bone marrow procedure was awful. I

> don't even have the words to describe the pain and tears that were

> flowing, I maintained my composure and didn't outright sob while

> holding my son's hand but my tears flowed with his but I think mine

> flowed stronger and faster. He was in a lot of pain and nothing

> could prepare me for witnessing that procedure and the thought that

> he has to go through that every six months or so is distressing but

> we'll do whatever it takes to get him better. I'm not a scared as

> last Friday but I'm still frightened as hell. I think I'm

> definitely feeling a little stronger though. All your stories and

> support were very helpful, many thanks to each and every one of

> you. I pray that Gleevac will work for him. They advised us that

> we should immediately start banking some of his sperm just in case,

> that's been heavy on my mind and today I got an appointment set up

> for him for Friday so they can begin that process. I wish more

than

> anything that we didn't have to travel this road but I don't ever

> want him or I to have regrets on that decision and I want him to

> someday be able to experience the joy that a child brings to your

> life and if by doing this it may someday help him than I will move

> mountains and figure out how we're going to pay for it. I've been

> so financially strapped since paying for his tuition and first year

> college expenses, laptops, frig, etc. etc. but somehow I'm praying

> that the Lord will help me find a way to fund the banking of his

> sperm. He's on board 100%, he heard and understood completely

> everything Dr. Shah said to us. They typed him for the bone marrow

> registry and they are getting approval to type my daughter to see

if

> she is a match just in case. I'm so afraid and know that there is

a

> greater chance that she is not a match for him than there is a

> chance that she is but I'm trying to hold out hope on that, maybe

> something will go right I pray. I'm afraid due to our ethnic

> background being Hispanic that there is a less likely chance that

he

> will have an available donor already on the registry but we'll

see.

> The bone marrow transplant coordinator was really sweet to us. She

> was explaining to us that if sibling doesn't match that they would

> go to registry before family testing would be done because of the

> costs. Does anyone know what kind of costs were talking about, I

> need to be prepared. How can I get my family members typed is

there

> a way to have them tested that doesn't cost so much?

>

> ie is doing better today, sore and tired but OK. His

> girlfriend was with us through the entire week and nursed my son so

> sweetly yesterday. I love this girl for standing by my son not

just

> with his first diagnosis of CF but by his side during this CML

> diagnosis. I don't know many 18 year old girls that would be ok

and

> love unconditionally when faced with such a scary diagnosis.

> Anyway, I will update as soon as we get his results and ask for

your

> continued support and prayers. The outpouring of support has meant

> to much to me and to ie, I let him read all of your posts in

> hopes that your words will help him as much has they helped me.

> Take care and many thanks again.

>

> Sharon

> Fairfield, CA

>

August 23, 2008

Hi Sharon:

I read your original posts and then read the one today. I just want to

let you know that many of us lurkers are praying for you and your son.

I know that having CML is no picnic, even though I am blessed with a

good response and good insurance. And I know that I would rather have

CML than to have one of my children experience it.

You mentioned that you are worried about expenses given that you have

just paid tution. I wonder if you have considered filing an amended

financial disclosure statement at Berkley. Perhaps if they know that

your financial situation has changed because of your son's illnesses,

they will be able to augment any financial aid he is receiving and if he

is not receiving financial aid, you may find that he is now eligable.

You may also want to contact your local chapter of the Leukemia and

Lymphoma Society. This is a wonderful organization dedicated to helping

those of us with leukemia. I know that they have financial grants

available to all leukemia patients each year, though I forget what the

dollar amount is. These grants are 'automatic' and are there to help

with treatment associated expenses. These are just two ideas off the

top of my head that might help your financial strain. I hope that you

have good health insurance and if you do not, you might want to have

your son check into what type of health insurance might be available to

him as a student at U.C. Berkely.

Again, I will echo what others have said about bone marrow transplant.

While a good CML doc will want to type your son's immediate siblings,

doing this is strictly a precaution. These days bone marrow transplants

(or more correctly, stem cell transplants) are way down the treatment

option list for CMLers. So don't worry about having the whole family

tested. I have no idea about the expense. I know that my insurance

covered it for my siblings and they were tested via a simple blood draw.

Finally, I am so sorry that your son experienced so much pain from his

bone marrow biopsy. I am no expert, but I wonder why this happened.

Perhaps one of our more knowledgable members can give us a tutorial on

what should be happening during a draw so that you can know if what he

experienced can be avoided in the future. Even my first biopsy which

was done my my local oncologist was done under a local anesthetic and

while uncomfortable certainly didn't rise to the level of pain that you

described. I have no idea what may have caused your son's pain, but

before he has another one I would hope that you will ask the doctor what

can be done to make sure he does not suffer so much. After your son

gets " established " he will probably have a bone marrow draw less

frequently. Currently some members only have them every two years and

there is research on going that in the future may allow most of us to

forego bone marrow biopsies all together.

Let me reiterate something that you have already heard. Being diagnosed

with CML knocks the wind out of you and having a child diagnosed with

two major illnesses has to be overwhelming. But today those of us with

" garden variety " CML can look forward to a " normally lengthed life " --

meaning that while we may have varying degrees of side effects from our

drug, something else is likely to be what kills us.

So take a deep breath, and enjoy getting your son off to college. U.C.

Berkley - you must be sooooo proud! I can't wait to hear about his

progress and to read your post in four years when he graduates!

Cheers,

Kathie in Florida

>

> I want to start by saying a big thank you to all of you. The

> support here has been awesome. I received such compassionate and

> caring messages, private emails and prayers and support and I was

> very moved by the words and support I got so I thank you all from

> the bottom of my heart for that. I hope to someday give someone the

> support you all gave me. I'm sorry it's taken so long to update but

> it's been such a busy week so far. On Monday we met with Dr. Neil

> Shah who was absolutely wonderful. He talked and we listened and it

> was all so overwhelming and so much to absorb at once, I'm glad I

> have an audio recording I've listened to his words several times now

> since Monday. ie had his bone marrow biopsy/aspiration on

> Tuesday morning, we're not wasting any time, especially since he's

> starting at UC Berkeley next Monday. We hope to hear Chronic/stage1