Discussion Forums > Thalassemia Major

Dying inside....

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Danielle:

--- Quote from: Courtenay1826 on March 12, 2007, 11:27:36 PM ---because my Mom was with me the entire way, it made it so much easier

--- End quote ---

This is exactly how it was (and still is) for me, also.   :happyyes

Andy Battaglia:
Hi Christine,

Your resilience has shown through over and over, and I know you know inside that it will do the same once again. Right now is a hard time because it's just beginning, but it won't be long before you're giving advice to other parents going through it for the first time. You and your husband have shown so much strength and you'll continue to find that strength.

If a port can be avoided, do so. I'd like to hear other's experiences with pic lines. I had one for about 10 days over 10 years ago and I can still feel the spot in my upper chest/shoulder where it apparently left some scarring. Also, when you have a pic line, you cannot have an IV or have blood taken from that arm where it is inserted. I do think it may be preferable to a port though. It does seem like it would be much less likely to cause infections or clots than a port would.

Christine, you know you'll find the courage. You'll shed some tears but you'll manage and still be the great mom you've been all along.  :hugfriend

jzd24:
Christine, I feel for you during this difficult time. You and Lauryn are troopers, and will get through this first time as best as you can. Children seem to accept things easier than we adults do. We will all be with you in spirit, our positive energy all around to help you. Love to you and Lauryn. Jean

§ãJ¡Ð ساجد:
Hello Christine,

It is natural for any parent to feel the way you do. Even I can't believe that this day was going to come for Lauryn as she was doing so good with stabilizing her Hb.

You have to be strong from now on. It's not easy and the first step is always the most difficult one, but eventually you will manage it and hopefully it will get easier for you to cope with her transfusions sessions of the future.

I pray Lauryn the least discomfort for her transfusion. :pray

Love and :hugfriend to Lauryn

Take care, Peace!

Manal:
Hi Christine :hugfriend :hugfriend :hugfriend :hugfriend

My heart goes for you. I know  how the word ''dying inside..'' really mean. But i am sure you will be fine and strong again. Remember you were the one who was encouraging everybody and giving a lot of support to everyone. Remmber your own words '' there will be a cure in our childrens' life'' and i am sure this will happen. So lets concentrate on this and i am sure that God will answer our prayers.

I have another point which is far away from what we are talking about, can the doctor confirm that Lauryn is not an intermedia?? All what she is expierencing can also be symptoms of an intemedia as well. i hope that,  knowing the fact that you and your husband are carriers, wouldn't make you rush in the steps taken. I know that some doctors don't accept children HB to be less than 8 or may be 9. But there are some who can do it ( like my son ). If i knew like you four years ago , i might have transfused and have him diagnoised as a major while he is an intermedia ( confirmed by DNA test ). I hope youcan get my point. Anyway, i felt that i wanted to tell you this though my point may not be right.

Anyway waiting for old christine who is strong and optimistic

Love
Manal

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