its my pleasure

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Offline precious99

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its my pleasure
« on: March 24, 2016, 12:15:32 AM »
Its my pleasure to introduce myself.  My name is Maryann from California.  I have a 17yr old daughter with Beta thalassemia Major.  She was diagnosed at 4 months old and started transfusion at 6 months old.  I have a 15 yr old son and a 12 yr old daughter who had Bone Marrow Transplant 10 yrs ago.

Im enthusiastic about joining this site and looking forward to talking to everyone! :big grin

All the best!
Blessed is he who expects nothing for he shall never be disappointed

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Offline Andy Battaglia

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Re: its my pleasure
« Reply #1 on: March 24, 2016, 03:00:43 AM »
Welcome to our group. Where is your daughter being treated? Does she go to one of the thal centers? Where was the BMT done for the younger daughter?
Andy

All we are saying is give thals a chance.

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Offline Nomad

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Re: its my pleasure
« Reply #2 on: March 24, 2016, 03:05:47 PM »
Precious 99, welcome to thalpal! We are all here to help and support each other with all we have learned through the years. I'm pretty sure you also  have some good knowledge about Thalassaemia after all this years...

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Offline Emby

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Re: its my pleasure
« Reply #3 on: March 24, 2016, 04:52:34 PM »
Welcome to the group, Precious99!

Welcome to your precious familt too.  :heartred

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Offline precious99

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Re: its my pleasure
« Reply #4 on: March 24, 2016, 06:22:57 PM »
Hi Andy

I read a lot of good things about you and I have to say I truly admire your dedication to this group.

Anyway,  both my girls go to CHOC Children Hospital Orange County.  My little one was fortunate enough  to  have the GIFT OF LIFE .  She had BMT when she was 1.5 yrs old from my son who was a perfect match.  I always remained hopeful and continued to have a positive outlook.    Following the life saving procedure at CHOC which lasted 2 weeks.  She had to stay for another 2 weeks while her immune system developed.  The procedure was a success!  That wasn't nearly as bad as I thought.  I was preoccupied , my eldest one receiving BT and my boy which was 5 at that time was everywhere.  I guess I didn't have much time to be emotional! ! And all the physicians on her treatment team were taking good care of her and the nurses were just wonderful.  Following the life saving procedure at CHOC we were finally able to go home with no complications from chemo and GVHD but I was reluctant that something might happen, you know infections after you leave the hospital . But all the doctors and nurses reassured me that shell be fine!  She was able to maintain her hemoglobin at 11.0 and a month of deferral. Her recovery was unbelievable!  Post BMT  she visits the outpatient clinic  yearly for followup care.

I can say that I'm truly happy with my daughters success but half of me is not because of my other one thats still suffering..

Hi Emby

Thank You!  Yes indeed they are my precious !!!


Hey Nomad!

Than you! I should have looked for this forum long time ago! Very helpful .. yes  17 yrs later and Im still learning!
Blessed is he who expects nothing for he shall never be disappointed

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Offline Waleed

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Re: its my pleasure
« Reply #5 on: March 26, 2016, 04:12:56 PM »
Welcome Precious99,

Please accept warm greetings from us on joining thalpal. I would request you to encourage your daughter to join thalpal as well. We are here as  a family to show it to the world how successful thals can be, if given a chance. Considering your daughter to be 17yo, I believe its one of those days that makes life long impact on one's life. A 17 year old should always be encouraged emotionally and psychologically to boost her/his self confidence and as a necessity of present times should strive for higher education that will, more likely, make them to stand on their own feet independently when they reach their late 20's. This is especially important because when patients reach late 20's and early 30's, its the time after when their parents, as they age themselves, may not be able to continue same financial support, its then that the confidence and skills developed during teen ages will play very big roles in patients' lives as they have to face the world themselves, directly, face-to-face and one-on one. Patients at this forum are real examples for the world to see that thalassemic patients can be as successful in life as anyone else. We see your thal major daughter, a very successful person ahead, inshAllah.
« Last Edit: March 26, 2016, 04:33:48 PM by Waleed »
Waleed

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Offline precious99

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Re: its my pleasure
« Reply #6 on: March 28, 2016, 06:52:07 PM »
Hi Waleed!

Thanks for The advice.   I will  encourage her to join this site.
Blessed is he who expects nothing for he shall never be disappointed

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Offline Sharmin

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Re: its my pleasure
« Reply #7 on: March 30, 2016, 04:54:26 AM »
Pleasure to have you join us precious.  My son is also 17 years old.  It's an age where they take on more of their care.   I wish your family the best.  I'm happy to hear that one of your girls was cured and the other is doing well with treatment.  

Warm welcome,

Sharmin
« Last Edit: April 04, 2016, 04:19:46 PM by Sharmin »
Sharmin

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Offline precious99

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Re: its my pleasure
« Reply #8 on: April 02, 2016, 05:14:24 PM »
Thanks Sharmin that's lovely our kids have the same age. My daughter is my profile pic by the way.
 I've really enjoyed being in the group and everyone is friendly. This group is getting bigger by the day, and I LOVE IT! The more members in the group, the more interesting the threads. I feel like I know all the members in the group... I try to follow all of the threads and I've found you are all amazing people. I hope everyone keeps enjoying the group, and as always I'm here if you need anything.


Maryann
Blessed is he who expects nothing for he shall never be disappointed

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Offline Lokkhi maa

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Re: its my pleasure
« Reply #9 on: April 04, 2016, 09:08:08 AM »
 
Hello precious99,

Welcome and share your experiences with us. :hugfriend
Lokkhi Maa

 

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