Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: KHALIFA on May 29, 2006, 01:24:09 AM
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:rotfl HI ALL
am just writing to inform all of my friend that my son ABDULWAHAB is A WINER in this challange we are ready to go home soon there is no CMV everything is fine ...
thank you all and spicially who suport me and pray or my son ...
spicial thanks to the BIG BROTHER who told me last year to go a head and do the transplant for my son .
GOD SAFE ALL THAL
ASSIMIC
ABDULWAHAB FATHER// KHALIFA ALMUSALLAM
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Khalifa,
This is the best news little brother. Our prayers have been answered after so much time. It seemed like every single thing that could go wrong did, except for the big thing. The transplant worked! Dr Lucarelli told me that in most cases of severe graft vs host disease, as Abdulwahab had, that the patient does not survive. Abdulwahab did. I think something special has watched over this boy and kept him here on earth with us.
God be with you and your family, my friend, on your journey home.
Time for a celebration!
:yahoo :party :love :party :love :party :yahoo
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Congratulations!
:yahoo :clap :heartred :flowers :jumping :thumbsup :grin :getwell :five :love :party
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Congratulations!!!! I am so happy for Abdulwahab.
:party :party :party
Poirot
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:woot :woot :woot :woot
:cheer :cheer :cheer :cheer :cheer
:party :party :party :party :party
CONGRATULATIONS AND ALL THE VERY BEST...WE ARE ALL PLEASED THAT HE HAS DONE SO WELL....KEEP UP THE GREAT WORK....
:yahoo :yahoo :yahoo :yahoo :yahoo :yahoo :yahoo
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CONGRATULATIONS ABDULWAHAB
To all the family, wishing you all the best of luck. May this be a beautiful beginning to a whole new journey.
Keep in touch.
Regards Miaki
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GREAT NEWS !!!!! CONGRATULATIONS...
Wishing all the happiness to AbdulWahab and to your family in future. Please keep in touch.
Regards
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CONGRATULATIONS
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:biggrin :rotfl :cheer :bighug :flowers :veil :party :love :hithere
I am dr. Paola Polchi who treated Abdul Wahab. I am happy as Khalifa is about Abdul Wahab conditions. He is very good now. Recovering from every thing. I do not know Andy personally but Khalifa talk about him so much that it seems to me that I know him. I do not know if we ever met...may be yes..
I hope that every child can find definitive treatment as Wahab did. That is the intent of my work.
Big hug virtually to every body
Paola Polchi
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Hello Dr. Polchi,
Welcome to our group. Khalifa has spoke in glowing terms about you and the efforts you put forth towards keeping Abdulwahab alive. I would also like to personally thank you and your whole team for your work in this difficult case. Our whole group is very happy about the outcome. We certainly needed some good news.
I have met your colleagues, Dr Lucarelli and Dr Sodani at the conference in Dubai in January. They were both very friendly and also quite funny. I also met the representative from your foundation, who is working in Maldives during my trip there for International Thalassemia Day, May 12.
I hope we can see you as a frequent visitor to our site. We try so hard to help and it would be wonderful to have the occasional answer from the doctors themselves.
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Hello Doctor!
Glad to know that you have joined our global family! Please take a look at the topics that we have discussed with our limited knowledge!
Your expert reviews and correction of our discussions are most welcomed!
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Hi SaID.
Thank-you for yor posting, Finding a good doctor here. Is like looking for a needle in a hay stack.I'm tired of going from one doctor to an other.
I know about those medical centres that was mentioned by Maiky, one of those centres I will not send my dog there.I'll rather die at home.
ONE thal patient here is not on their priority list, especially one over 50yrs old .Even though there are these places I've never heard anything mention about thalassemia.
Here in western Australia one doctor told me she was at her deep end,and know nothing about the illness ,she told me she cann't change my genetic make up and she even asked me what do I think the speciallist can do for me. The centres are mostly for cancer patient and I feel that unless one is dying no one cares,.
one has to be refered to see doctors in those centres and its hard to get a refference see a specialist.
Take for example I was refered to see a prominent heamatologist but when I got there I was allocated to be seen by two other doctors appears to me like students or intern.AND they got me very worried for three weeks when one of the doctor told me it look like ive got multiple myeloma.
I dont want to go for help anymore I'll rather see a naturopath and live one day at a time.
I live here and I know what I know I've got no ellusion about this society and my community still my immediate family is here and here offers me a better lifestyle than I would otherwise have from where I was born.I suppose I have to realise I cant have all in life.Kathy.
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Dr Polchi
Welcome to our humble group.
I think it goes without saying we would all like to thank you and your team for the fantastic care you took of Abdulwahab. It's teams like yours that shows the rest of the world that somewhere, somehow things will be good and that there is those few that treat with passion.
Congratulations to all and thank you for keeping Abdulwahab safe.
Miaki :flowers :party :bighug
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:biggrin
AM POSTING THE PHOTOES OF GOOD TEAM WHOTREAT MY SON AND WHO THE GOD GUIDE THEM TO THE BEST TREATMENT.
1:Dr.paola polchi 2:Dr.javid gaziave 3: Dr.piatru sodani
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Hello Khalifa,
I'm very happy that your son Abdulwahab is doing great and ready for home.
His very lucky to have a loving and supportive father like you. You are also a winner..
Regards
floWer
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congratulations to the whole family and the little brave boy Abdul Wahab
GOD always watching us and give us all his strength to fight
From now on wish you and your familly a very good health
God Bless You
Mam
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Khalifa and Abdul Wahab,
Congratulations on getting the BMT successfull after all the issues which came up. God finally heard the prayers and it is quite a miracle!!
Would you mind sharing if this was a related or an unrelated Bone Marrow Transplant? Also, I heard the 1st Bone Marrow failed. Would you mind sharing why might the 1st one failed(I know this might be unknown) and what were the complications?
-Narendra
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HI ALL
regard my son first bone marrow transplant failed i think because the cemotharapy in the bigining is not enough that what i thinjk and he do't have any coplication he return back to thalassimia major again even the Dr's don't know.
a bout his second bone marrow transplant we didn't use the bone marrow we used the prepheral blood stem cells from the same donor we take from her the bone marrow in the first tried .
the complication was after 45 days of transplant he got a coma this come reson from some kind of drug it's name CYCLOSPORINE this drug imunesupress let the new bone marrow working and crow in the host body without any kind of rejiction from lymphosite cells but he got a come and make LISIONE in the brain but it was not strong one after the Dr stop that drug he found out the boy have GVHD (graft versus host disese) without that drug he have to use medrol as high dose to prevent the viruses and GVHD after a while with a GOD help Dr.javid deside to give new drug and also it's similler to the old drug it's name CELL-CEPT but it's less poisene he lost almost 10 kilo from his wight within 2 month but now he recover it a gain his a bility to walk before was ZERO not like other child in his age now he return back as before giving me real head ache but am very happy for this head ache because i promise him to give him real head ache in his first night when he get marry in feuture LOL :biggrin
any way i sugest when you or any one decide to make this operation to put front his or her eyes THERE IS A FAIL AND SUCCESS THERE IS A LIFE AND DIE THE Dr JUST A RESON
also from my expiriance when i've been in italy for 13 month we have three family they lost there children. 5 years old and 16 years old and 13 years old but the successeful is more than 90%.....
i hop i answer your quistions
khalifa almusallam
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Thank You Khalifa for explaining about the 2 transplants.
This gives the other readers who might be thinking for Bone Marrow Transplant what they moving forward into, but as you mentioned, there is Success and there is Failure. A lot is dependent on luck.. but 90% seems quite good
I am glad to hear Abdul wahab is doing quite well. One's own bone Marrow generating the blood, what else can we ask for!! Especially, when a Thal(Major) gets this success - It gives internal happiness not only to the parents, but also to those that are wishing for other Thal's well being!!
God Bless All
-Narendra
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Khalifa,
I am so happy that Abdulwahab is finally recovering. What a struggle he had, and what a supportive family to help him. He has a strong spirit. Congratulations! :yahoo
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Dear friends :wub
10/06/2006 today i took my son to the hospital for blood check as a routain every 2 weeks the Dr told me the HB is 11.6 and PLT is 197000 and all WBC and RBC within normal range but am still worry a bout his waight he gain just 4 kilos since he descharge from the hospital on 27/12/2005 in italy after that fighting with GVHD because his waight befor the GVHD was 28 kilos and on the day of descharge he was almost 18 kilos but the Dr told me don't worry he will be ok and the waight take time......My son he didn't have any blood transfusion since last MARS that's mean the new bone marrow is working good... for more spicific my son recive PBSC (PREPHERAL BLOOD STEM CELLS) last june 30 2005 this is the last news a bout my son..
khalifa ;D
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CONGRATULATIONS!!!! :yahoo :party
Must be such a super feeling after all the stress and trauma that Abdulwahab and you and your family went through.
Keep well.
Poirot
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Good to know that your son is recovering nicely! Don't worry about his weight! Just give him a healthy diet and try to keep him happy. Throw a party among his cousins and friends; he will love it and stay happy for a long time. For gaining weight, give him a diet of things he likes most!
:party :party :party
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Khalifa,
Your son's weight gain is better than the mean weight gain shown at the link below after 1 year post BMT.
Click here(Bold letters) : -
Post BMT - Weight Gain (http://www.apon.org/i4a/pages/Index.cfm?pageID=522)
The mean weight gain was 2.5 kg with a median weight gain of 2.3 kg and a range of –1.2 to 9.4 kg
Don't worry about his weight gain. His doctor's are good and as Sajid mentioned give him what he likes so that makes him feel better to eat. I also have heard some Thal Patients took Growth Hormones. I don't know much about it, but if weight gain remains a problem - the doctor's might suggest other options
-Narendra
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Narendra
i preciat to you to send the site to me i know a bout it but the problem is my son had before real bad GVHD this kind of GVHD made for him very bad dhirea for almost three month he was survive on IV no eating no drinking his weight was in septembar 2005 (28 kilos) last disembar was 18 kilo and now almost 7 month from his discharge and also i cant give him any thing he have to eat special food because he still taking a MEDROL (CORTISON) so i sugest to wait few month to start given him what he like but what make me feel ok that his blood is ok ...
khalifa
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Hi all :wavey i know long time no report a bout my son Abdulwahab he is ok and doing ok we stoped some drugs and keeping some of them regard his waight he is now around 24,5 kilo he gain waight very slow because we have to keep colostrol under control (his colostrol gain very fast MEDROL RELATED) his CBC test is make all the Drs here in kuwait and in italy satesfied (SPICIALLY THE Drs HERE IN KUWAIT :winky ) am now prebaring my self and my son to go back to italy a gain for check up and also scanning him from up to down back and front :biggrin so i have to go back to eat pizza :wah ..
All the best for all
khalifa
state of kuwait
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Khalifa-
I am so glad to hear of Abdulwahab's success with the BMT! amd very glad to hear he is gaining weight! :biggrin
All our love,
Courtenay
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All the best to your family, I wish your son continued gains in good health!
Sharmin
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Hello!
That's a great news!!
Good to hear that your son is recovering nicely! :happydance
Wishing him a complete recovery soon. :getwell
I think you guys should be awarded an honorary Italian nationality and free pizzas for life! :wink
Take care, Peace!
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Good Luck Khalifa, i am sure that Abdel Wahab will continue to be better
Manal
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Dear Khalifa,
This is v gud news. Am so happy dat GOD has answered our prayers. Abdul Wahab is so lucky to have such a supporting family and especially a caring and loving dad.
Thanking all the drs who cured Abdul Wahab with GDO's grace.
Tc, kit
Akka (Shareefa)
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HI GUYES
thank you all for all your wishes and your congaratolat i hope everybody will be in good health .. and regard sajid i hope and i wish you come toi ialy to stay there for one month only to see what the pizza will doing for him in his stomach :rotfl by the way am going to take with me my baby seater who she can make a very testy food spicially the oriantal food ... am going to keep you up date for every thing ....
cio
khalifa
state of kuwaqit
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Khalifa - I am so glad to hear that your son is doing better and gaining weight. Yea! That is great news! Your family deserves the best after all you've been through. Take care, Jean
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Hi all
am so sorry for not writing for long time but i think you can forgive me when you know what the five kids did for me .. any way i would like here to update my son Abdulwahab ,,he is joining the school there is no GVHD he took his all vaccination again his waight almost 30 kilos and 129 cm but no cortisone also he is taken some drugs to help him to gain waight and length like calsium ..
we are ready to go to pizza country a gain :wah :mad and my son alwys said i want to eat italian pizza :dunno i don't know what kind of majic that pizza effect him and we are alwys fighting for the same reson ....Dr paola want him for check up after three years and half from transplant hope it will be the last visite :coffeestat
all what i can say hope to see evrybody in good health
khalifa almusallam
state of kuwait
:khalifa
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Hi KHALIFA :
Best of Luck Bro ... May God bless him with best of the health and a happy & healthy life without transfussion ( Ameen ) ....
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Khalifa,
It is sooo nice to hear from you! All the best to our dear Abdulwahab, I'm so happy to hear that he is doing well. Way to go son!! We love you and wish the best for you sweetie :hugfriend
:love :love :love :love :love :love :love :love :love :love :love :love :love
Love,
Sharmin
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:stars :congrats :stars
Wishing him all the best for the future!
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Best of luck in your visit Khalifa, i am soooo happy for Abdelwahab and hope it will be his last visit. please keep us updated :hugfriend
manal
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As a mother I am so happy for you Khalifa.Praying that this is Abdul Wahab's last visit to the pizza country as far as health issue is concern.
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You are so lucky Khalifa,and we all are so happy for you and Abdul Wahab,lots of hugs and kisses for him :hugfriend :hugfriend.
Zaini.
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It is good to hear from Khalifa,Good luck to Abdulwahab, its nice to know that his health is holding up.
Enjoy your Pizza, when you get there :rotfl :rotfl :rotfl :rotfl
Kathy
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hi i m in that group my HLA typing is not mathch with my family plz mujhy unrelated transplant karwana han tell me more about it
thnks. :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :welcome :welcome :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :agree :yay :welcomewagon
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hi i m in that group my HLA typing is not mathch with my family plz mujhy unrelated transplant karwana han tell me more about it
thnks.
Can you please tell me how old are you?