Daughter diagnosed with cml

[Guest guest]

Hi, my name is Dawn and my 15 year old daughter has been diagnosed

with CML within the last couple of days. I am still in shock and so

is she, (she says its all like a dream) I know that we have a long

road ahead with a bone marrow transplant needed ithin the next 6

months. I just do not know if I am going to be able to be strong for

her. I am up and down and deciding if to give up my job and look

after her. She has took it on board and I think that she had accepted

it, but I am so angry that she has it! I have been told by the

consultants that it is very rare for a 15 year old to have this and

the chances look quite good for her but I am quite concerned about all

what she has got to go through. I also have two other kids that are

younger than her and I want to keep things as normal as possible for

them, but I am finding it very hard at the moment. If anyone else has

been in my position I would be grateful for any advice. Thanks Dawn

[Guest guest]

Hello Dawn,

I am so sorry that you have to experience this. I know that everyday I thank

God that it was me that got it instead of my children. I also wish that I

could take it on for all of the children in the world. But we know that life

isn't the way that we wanted rather it is the way it is meant to be. Pretty

or not.

I was 35 when I was diagnosed almost 7 years ago this month.

I started my first year of treatment with Interferon and arc - they were the

choice of treatments back then if the decision was made not to have a BMT or

if one couldn't because of any possible matches. They tested 2 of my sibling

that were healthy enough to be donors and they were not a match but they did

find 3 very good unrelated matches in the national donor registry.

After months of preparation, I finally made a personal choice to take the

chemo the first year and then wait for Gleevec to be approved.

Since June of 2001 I have been on 400 mgs of Gleevec and I am pretty much

living a normal life along with all the good and bad journeys that life can

bring.

There were lots of factors that helped me make my decision not to have a BMT

which may not be the same ones that would affect your decisions. Because of

other circumstances in my life I decided to use the gleevec as a first

treatment option.

I personally wouldn't tell you to do the same thing because each of us are

different and your daughter is only 15 years old.

From what I understand there are much better statistics for younger people.

Even 35 was considered to still be a good age but again I had personal

factors that helped me decide on Gleevec as a front line treatment and keep

the BMT for a last option.

Scientist & Dr's have advanced dramatically in the BMT area. It would really

be wise for you to make sure that you contact a nationally recognized

facility and get some advice from a CML expert.

It may be that on of your other children is a match for her. That could be

more in her favor too.

I know things are so new that you may not have given much thought to this

but there are a lot of factors in her future to consider too. She's very

young and you may also want to consider her fertility and which option would

be best for her in the future.

I really don't know the answer but I do think that's something that you will

want to consider. I believe there are risks either way with that but I don't

know which one could be harmful.

I have a dear friend who is currently going through stem cell transplant and

it occurs in phases. The difference is unbelievable compared to what I have

read about a BMT.

Then again he was very sick with numerous types of cancer and somehow

managed to get in a trial for stem cell as a last resort.

You cannot make your choice based on how we chose ours or on how anyone

chooses to BMT or not to BMT.

This is your daughter's life you have to make a decision about. It's just

not the same as making one for you or us making one for our own personal

reasons. .

I do know that they say the only known cure is a BMT but then I also know

that with the new frontline treatments and a BMT there's always the

possibility of relapse.

Please seek help of an expert. Don't just assume that an oncologist is an

expert. You need to get in contact with a center that specializes in BMTs

and one that specializes in BMT's for children.

It would probably be very helpful to e-mail Dr. Druker. I don't have his

address handly bt I am sure someone does here.

He is an amazing Dr and I am confident as we all are here that he would give

you really good advice that would start you in the right direction.

Each of our situations is different. What might be right for some of us may

not be right for your daughter.

As for quitting your job right now.I think l that the initial diagnosis can

really put us through a lot of emotional stress but I know you will get

through it and work will not only assist with financial things such as

insurance but it would give you something else to think of as oppose to the

negative thoughts that can really get to us when we have no place to run and

hide. (like work:-) )

For me my place of employment provided so much support emotionally and

spiritually that my physical body and mind became much stronger. There's

nothing better than being surrounded by people who support you and sometimes

family is just not enough.

Also besides these online groups where you can keep track of the responses

you receive and the questions you ask - please get your self a hand held

recorder for you're your consultations. Also right down the questions and

concerns you have so that you won't forget any when you do have any

consultations. The recording is great. it helps to go back and listen to the

answers the doctors give you so that once you do make a choice you move

forward and never look back with that confidence of knowing you asked all

the right things matter how small of an importance it may seem to someone

else, everything is important to you and your daughter right now.

Thankfully we are in an age where research is really focusing on CML and

many other cancers, but we very well may the most fortunate.

God Bless you, your daughter and your support system as you go through this

new journey in your life.

There are a lot of wonderful knowledgeable people on this group so please

check in as often as possible with as many questions as possible. I promise

you that you will learn a lot and have your medical degree in no time. :-)

I hope that all of us here are able to help or at least provide you some

comfort.

Again, I live a normal life and I have had CML for 7 years and all I do is

take on pill a day.

ez