Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Shaheera on February 09, 2013, 07:12:59 AM



Title: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on February 09, 2013, 07:12:59 AM
Hi to All,

My daughter Shaheera (20 Months Old Baby Girl) was diagnosed Thalassem Major on December 31 2011, we did HLA typing and my wife was 100% matched with Shaheera's HLA. Two month before we have completed Pre Transplant Evaluation and her all reports were fine. We were given the final date i.e. 8th March, 2013 to start BMT process by Armed Forces Bone Marrow Transplant Center Rawalpindi Pakistan.

I will keep you posted on the progress, please pray for Shaheera

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: aabha on February 10, 2013, 12:04:56 PM
All the best!!



Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Bostonian_04 on February 11, 2013, 01:37:28 PM
Best of luck!


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on February 11, 2013, 11:50:08 PM
I wish you a healthy luck. :)

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 05, 2013, 09:28:55 AM
All the best!!



Thank you 8th March is the admission.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 05, 2013, 09:30:07 AM
Best of luck!

Thank you 8th March is the admission.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 05, 2013, 09:30:39 AM
I wish you a healthy luck. :)

-P.

Thank you.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Dharmesh on March 07, 2013, 01:42:40 AM
All The Best!!!

Haven't you tried Hydroxyurea?


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 10, 2013, 07:37:58 AM
I have discussed about hydroxyurea with the doctor and he told that due to severe mutation hydroxyurea will not work.

Today is second day in Transplant Center and just 150ML blood was transfused to increase the HG level. Central line catheter will be placed after two days.

Please pray.



Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 10, 2013, 11:21:36 AM
Praying.

Good luck, everything shall be fine!

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: aabha on March 11, 2013, 11:47:33 AM
please keep us posted whenver u hve time........God bless


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 12, 2013, 10:55:40 AM
Today just haircut done and hickman line placed. Shaheera is not happy today, she is frightened.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: aabha on March 13, 2013, 12:43:12 AM
This is one of the toughest days.....it will all pass ....God bless u and give u and ur daughter strength to go thru it


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: EugenioLaMesa on March 13, 2013, 04:24:20 AM
All the best.

If you want you can use the free remote second opinion of Dr. Sodani (who did 400 BMT):
http://www.curethalassemia.org/services/remote-second-opinion-on-bmt/



Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 13, 2013, 10:12:48 AM
Dear Sir,

Thank you, we have had first opinion from Dr. Sodani few months before and he gave us go signal for BMT.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 13, 2013, 10:18:59 AM
This is one of the toughest days.....it will all pass ....God bless u and give u and ur daughter strength to go thru it

Thank you for all your wishes.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Sushil on March 13, 2013, 10:51:12 AM
our prayers are with Shaheera.

be strong god is with you.




Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Sharmin on March 13, 2013, 11:33:25 AM
Praying that Shaheera is doing well and for a very successful BMT and recovery,

Sharmin


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 13, 2013, 11:51:02 AM
Your graciousness is appreciated


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 13, 2013, 11:53:52 AM
our prayers are with Shaheera.

be strong god is with you.




thanks so much.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 13, 2013, 12:04:17 PM
Good luck, again. And shaheera looks so beautiful and little angel like in your picture. Little confused look as well, haha.

Best,

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: EugenioLaMesa on March 14, 2013, 06:10:25 AM
Dear Sir,

Thank you, we have had first opinion from Dr. Sodani few months before and he gave us go signal for BMT.


I'm glad that you've already been in touch with Dr. Sodani. As I said, if you want he can also give you his advice during the BMT.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 14, 2013, 12:20:15 PM
I'm glad that you've already been in touch with Dr. Sodani. As I said, if you want he can also give you his advice during the BMT.

Thank you sir, so far everything is fine and if any problem arise I will contact immediately.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 14, 2013, 12:35:25 PM
Today was just normal day for Shaheera but not for me and my wife. We were called for by the Commandant to sign off the consent of BMT. We were briefed abut possible complications during and after BMT, these were in hundreds.

We were also briefed about classifications and as per Pre Transplant Assessment my daughter's rating is "Class 1" which was good news. Today evening my daughter was shifted from Isolation ward to Specialized Isolation Room. A copy of protocol will be provided by tomorrow and the day 0 will be 25th March.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 14, 2013, 01:40:17 PM
Today was just normal day for Shaheera but not for me and my wife. We were called for by the Commandant to sign off the consent of BMT. We were briefed abut possible complications during and after BMT, these were in hundreds.

We were also briefed about classifications and as per Pre Transplant Assessment my daughter's rating is "Class 1" which was good news. Today evening my daughter was shifted from Isolation ward to Specialized Isolation Room. A copy of protocol will be provided by tomorrow and the day 0 will be 22nd March.

Regards
All the best!

Times like this might be the toughest ones, especially for parents.

But your daughter will be thanking her daddy for gifting her normal lifestyle after many years from now and you'll recognize how great decision you took for her and will smile remembering it!

All the best and all will be good!


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 15, 2013, 10:14:57 AM
Day (-10)

Thank you Pratik.

Today BMT conditioning agent busulfan, 4 mg per kg started for 4 days, Shaheera is doing well. I cannot go inside the room but my wife updating day to day activity.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 16, 2013, 08:02:22 AM
Day (-09)

Shaheera is doing quite well, her health is fine. Due to use of "Busulphan" the anxiety may increase that's why she has been given "Clonazepam" and due to this she is bit sleepy. There are series of other medicines also given but the above mentioned most important

Overall its a normal day.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 18, 2013, 01:14:45 PM
Day (-08 & -07)

I spent whole day with my daughter and gave rest to my wife, Shaheera's appetite is low and she was missing her MOM. Rest everything under control.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 18, 2013, 01:47:28 PM
It could be nothing but normal. Good to know that rest is fine.

Best,

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: MikeD on March 19, 2013, 05:51:07 PM
Best wishes to you and your family. Will keep them in our prayers. Thanks you for sharing your experience.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Sharmin on March 20, 2013, 01:32:01 AM
sending best wishes for Shaheera's complete recovery.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 20, 2013, 10:29:54 AM
Day (-06 & -05)

Thank you Pratik, Mike & Sharmin for the best wishes.

Day -06 was the last day for Conditioning medicine i.e Injection Tepadina 100mg (It helps to destroy the patient’s existing blood-making cells, resulting in the successful transplantation of new cells, improved survival and a reduced risk of the diseases coming back) so day -06 was normal day for my baby doll.

I was much concerned about day -05 because 50mg Cyclophosphamide to be stated and will continue till day -02, (Cytoxan) belongs to a class of drugs known as alkylating agents. It is also considered an immunosuppressant—a medicine that will decrease the immune response. There may be lot of side effects and today evening vomiting has started, her diet also decrease and she is not comfortable today evening.

On the other side Uromitexan 140mg also started and will continue till day -01, its used to protect the bladder from the effects of the chemotherapy drugs. In Isolation room only one person can stay either me or my wife, tomorrow is my turn.

Please pray for my little doll.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 20, 2013, 11:03:21 AM
She's in our prayers and all will eventually turn out fine, don't worry!

Best,

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Narendra on March 20, 2013, 03:29:23 PM
Good luck. Keep Faith and please keep a strong face. Your family needs you composed.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 23, 2013, 09:01:48 AM
Day (-04, -03 & -02)

Thank you Narendra for your words of understanding and encouragement. I can't express how much it means to me to have you praying for us.

Today was the last day of chemotherapy, during these four days Shaheera was not comfortable (May be due to low diet or room arrest) she always love to go outside with me.

From today evening " Prophylactic Antibiotics" has already been started and Central venous line was dressed up.


Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: joyce on March 24, 2013, 10:21:10 AM
Best of luck to ur angel and whole family..

My children were also on treatment for unrelated cordblood transplantation here at Chang Gung Taiwan.
The 1st performd the transplant on December, 2012 and the other 1 performed it on January 2013.

And now they're still under weekly meeting with the doctr.

I do understand what u're goin thru right now. Really understand, as I have to go thru it twice, for my 1st and 2nd son.
Pray harder to ease the burden in ur heart..
God is good.. :) :)



Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 24, 2013, 11:03:38 AM
Best of luck to ur angel and whole family..

My children were also on treatment for unrelated cordblood transplantation here at Chang Gung Taiwan.
The 1st performd the transplant on December, 2012 and the other 1 performed it on January 2013.

And now they're still under weekly meeting with the doctr.

I do understand what u're goin thru right now. Really understand, as I have to go thru it twice, for my 1st and 2nd son.
Pray harder to ease the burden in ur heart..
God is good.. :) :)


Congrats Joyce!

So that means your children will be/are free from thal now right?

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 24, 2013, 11:59:58 AM
Best of luck to ur angel and whole family..

My children were also on treatment for unrelated cordblood transplantation here at Chang Gung Taiwan.
The 1st performd the transplant on December, 2012 and the other 1 performed it on January 2013.

And now they're still under weekly meeting with the doctr.

I do understand what u're goin thru right now. Really understand, as I have to go thru it twice, for my 1st and 2nd son.
Pray harder to ease the burden in ur heart..
God is good.. :) :)



I wish you the best of luck for your son,s early recovery. Please share your experience with regards to post Day Zero possible complications and issues as tomorrow is Day "Zero" and my wife will donate bone marrow. I will be with my daughter and after bone marrow harvest wife will stay in ward up to evening, she will be discharged and will rest for few days.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: joyce on March 24, 2013, 10:06:44 PM
Dear Patrik-- at this moment the youngst was doing great. never tranfused ever since he was transplanted December, 2012. Today ws his 120 days post transplant, without folic acid his HB level maintain around 12.

But such treatment like this, we have to be well prepared as there is a possiblity of succesfull or failure.
Very sad to say with my eldest son the transplant din't goes well. He was engraftment failure.
so we are going for the 2nd transplant this coming July,2013.

Dear Shahera ---- I wish and pray the best for ur daughter and wife. At this moment, we can't do much but praying.
and I know the feeling was terrible looking at ur daughter and wife suffer but we had tried the best, the rest we hand it to God.

He will have mercy on us.. Keep the faith!

I do update those boys progress at Facebook.. Do visit us sometime at "JJ Medical Journey".


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: joyce on March 24, 2013, 10:23:07 PM
Sorry Shahera : I'm not sure if the BMT and CBT process are similar or different.

But for CBT on 'day Zero' Its just transplant process. Started at 10.00am the doc monitored the pulse, heart beat
and body temperature. They will connected the wires from the monitor to the body throughout the transplant process to ensure that the transplant process goes smoothly.

After that, the doc started the transplant by tranfused the first 'raw blood'. then continued with the 'washed blood'.
The process will soon finished, about 2 hours.

After 5/6 hours patient will  started to have hematuria ( blood's pee) . it's not painful. Don't worry.
Rest, the heartbeat n pulse will be monitored whole day.

the next day my son woke up, it was his day 1 post transplant.. :)


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 26, 2013, 04:30:44 AM
Day Zero

Yesterday bone marrow was harvested from my wife and it was transfused to my daughter. It took around 7 hours to complete the transfusion.

On the other hand my wife was also admitted after BMH but in evening she was feeling better and was discharged. She went home to have few days rest, I am with my daughter. Her diet is fine and she is doing fine.

Hi Joyce,

Thanks for the wishes and I wish you best of luck of your son's health. God Bless

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on March 26, 2013, 11:05:33 AM
That's great! Congrats.

Good to know that all went well at the end of the day.

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 27, 2013, 01:06:52 AM
Day +1

I was advised by the BMT team that my daughter's white count become flat and the critical phase gone start, next 15 days very important. We were also advised to take some extra measures with regards to food hygiene and cleanliness of the patient.

Regards  


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: joyce on March 27, 2013, 08:19:34 AM
Hello Shahera...
Which hospital are u'r daughter get the treatment?


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 27, 2013, 10:27:44 AM
Hi Joyce,

Its Armed Forces Bone Marrow Transplant Center Pakistan.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 27, 2013, 10:06:01 PM
Day +2

Quiet Wednesday.

Another good night of sleep and another quiet day here on the Pediatric Bone Marrow Transplant Unit. She doesn't like having to wear a mask so I am properly scrub in isolation room.  

From last 3 days I am with my baby girl and taking care day to day activities. Guys taking care of infants is full time job  :rolleyes, salute to the mothers. That's why (Once the Prophet said: “Heaven lies under mother’s feet”. (Tabarani))

Cyclosporine with the combination of Folinic Acid was started after day zero.


Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 28, 2013, 09:25:32 PM
Day +3

Shaheera looks active and she like to watch cartoons all day, when she become tired then she use tablet. Her liquid intake dropped but she is fine with mash foods.

Platelets count are 56 and may be in two days Platelets will be transfused.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 29, 2013, 09:06:20 PM
Day +4

Blood pressure on higher side due to use of sandimmune injection, I was also advised by the doctor that platelets will be transfused on day +6.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: CamisMom on March 30, 2013, 04:36:52 PM
We just went through all of this. Hang in there, it is tough but will be well worth it in the end. :)  Thoughts and prayers with you and your family.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 30, 2013, 09:24:45 PM
Dear Camis,

Thank you for all your well wishes and I wish you speedy recovery of your son /daughter.

Regards.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on March 30, 2013, 09:35:19 PM
Day +5

Overall day +5 was normal. Its my 6th day in isolation with daughter, I am trying to make less contact with daughter because the immunity is zero.

My wife is doing well and she want to come back in hospital but I informed her to have some more rest.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on April 01, 2013, 05:55:12 AM
Day +6

Temporary hair loss started (hair started to fall out 2 weeks after first chemotherapy session) and this is normal. The good thing is that her health is quite good and she have normal diet. This is my 8th day with my baby doll, physically tired but wide awake. Platelets not transfused yet, hopefully by tomorrow. 


Regards



Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on April 01, 2013, 02:47:49 PM
Hi,

Nice to hear that.

I wanted to ask one thing. You've done Cord Blood Transplant, right? And from what I know, Shaheera's mom was donor if I'm correct.

So how did this worked? Were your wife's cord saved since her birth or what?

Best,

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on April 02, 2013, 04:38:33 AM
Day +7

150 ML Platelets were transfused and overall its a good day.

Hi Pratik,

It's Allogeneic Bone Marrow Transplant, and its just Day + 7 and I'm keeping my fingers crossed for the success of graft which will take around one week more.

Regards


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Pratik on April 02, 2013, 01:44:31 PM
So did the mother's data fully matched or you went ahead and took risk because there might be greater chance of success if mother becomes donor, did you went with the latter possibility?

And don't worry, all will be good. Have faith on God. :)

-P.


Title: Re: Bone Marrow Transplant - Shaheera Faheem
Post by: Shaheera on April 02, 2013, 08:50:32 PM
Day +8

Again 150 ML Platelets were transfused and first shot of G-CSF (granulocyte-colony stimulating factor) a growth factor that stimulates the bone marrow to make more white blood cells was given.

Hi Pratik,

Mother's data (HLA) is 100% matched with daughter's data (HLA).

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: aabha on April 03, 2013, 11:23:38 AM
you are a strong person and are taking care of your daughter and wife so well.....hope engraftment happens soon...all the best


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 04, 2013, 10:17:30 AM
Dear Aabha,

Thank you so much for your sweet words! I really appreciate that you're following day to day progress of my daughter's BMT. Have a good day too!

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 04, 2013, 10:18:32 AM
Day +9

It was same like Day 8 and I decided to have some rest, so my wife took charge on my place. In last 9 days I just slept 36 hours. My body wants some rest and wife's health (After Bone Marrow Donating) is better now. Next few days very important for my daughter.


Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: MikeD on April 04, 2013, 08:53:58 PM
So glad to hear that things are going well for you and your family. I think that any of us here on this site are truly appreciative of you sharing your experience. 


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 05, 2013, 02:27:57 AM
Hi Mike,

Thank you. Actually Bone marrow transplant is a difficult procedure to go through and that's why every person (Thalassemia Patients) want to know about this procedure and thanks to web which give us space to share our experiences.


Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 05, 2013, 02:45:06 AM
Day +10

Our BMT team advised us that there are some signs and Indications of Engraftment on day 10 which is definitely a great news for family but its not party time still long way to go on.

Actually this is most anxious periods for patient and family during a bone marrow transplant is the waiting for any visible indication of engraftment. Those signs don't arrive overnight, but when they do, there is a feeling of total elation.

Thanks everyone for the prayers and support and please keep praying.

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on April 05, 2013, 08:49:26 PM
I've been following Cami's story on Facebook and the same thing was reported. Weeks later, the announcement came that the child was cured. This is a very important step and good news. I hope we hear the same thing from you in a few weeks, and judging by what has happened so far, I think we will. Best wishes.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Dharmesh on April 06, 2013, 03:48:39 AM
All the best and have transfusion free healthy life


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 06, 2013, 11:12:03 AM
Hi Andy & Hanumant,

Thank you for the best wishes. God Blesses you and your families.

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 06, 2013, 12:00:43 PM
Day +11

Today when the half unit of RCC was transfused, my wife noticed high fever (38.9) and she informed to the station nurse. The blood was stooped and and cold sponging was started. Some other medicines were also given. Today morning 150 ML Platelets were also transfused. Diarrhea also started in late evening.

Transplant team monitoring carefully all these issues and a series of test were conducted. I hope she will recover from this situation soon.

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 07, 2013, 09:00:59 AM
Day +12

Fever situation is under control but the diarrhea still not under control. It was a difficult day for little angle. Her appetite at lower side also.

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Narendra on April 08, 2013, 12:07:41 PM
Hang in there. While it is easier said than done (I mean easier for me to say than you doing it)... have faith in almighty God. Waiting for some positive update from your end.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: zahra on April 10, 2013, 04:58:57 AM
Wishing you and Shaheera the very best.May Allah help you through this difficult procedure and make it easy for you and cure your little one completely.
Zahra


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Sharmin on April 11, 2013, 12:42:08 PM
Wishing a speedy recovery for your daughter - and sending my best to your family.

Sharmin


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 12, 2013, 01:04:28 PM
Hi Sharmin, Zahra & Narendra,

Its bit difficult time to update, will write down that what happened after day +12 (Shaheera is better now). Thank you for be with Hira.

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: MikeD on April 16, 2013, 07:24:56 PM
I continue to think about you and your family and truly hope that they are doing well.  All my best to you.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 19, 2013, 02:35:03 AM
Day +13 to + 25

I was not able to write down regularly with regards to my daughter's day to day progress due to her health issues and non availability of internet at my new home (Next to Hospital). Now everything is fixed.

As I have mentioned previously that Fever and Gastroenteritis were developed on day +11 and situation became under control on next day. We were discharged from hospital on day +15 (Doctors were very happy with the blood counts progress). Family was also very happy for this as well.

After one day at day +16 she developed fever 39°C. I rush to hospital and my daughter was admitted. She was started on Meropenem and Amikacin on day of admission. Her fever was settled with in 48 hours. We were discharged on Day +21 with good blood counts and her HG level was 9.8. We have to follow up ever Monday and Thursday till Day + 30 then on weekly basis.

Yesterday was Day + 24 and we went OPD for follow up visit. HG level was 9.9 and doctors were satisfied with her blood count  progress. Minor issue for Gastroenteritis still on going but under control.


Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on April 19, 2013, 02:42:03 AM
I continue to think about you and your family and truly hope that they are doing well.  All my best to you.

Thank you Mike.

Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: zahra on April 21, 2013, 11:38:10 PM
Glad to hear Shaheera is improving. Our prayers are with you.
Zahra


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on May 10, 2013, 01:06:14 AM
Day + 46

So far there is no major issue, my daughter's HG is constant from last one month. I am back to job in dubai and my wife still need to live in Pakistan due to weekly follow up for few months.

Thanks for the prayers everyone.


Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Pratik on May 10, 2013, 11:17:41 AM
Day + 46

So far there is no major issue, my daughter's HG is constant from last one month. I am back to job in dubai and my wife still need to live in Pakistan due to weekly follow up for few months.

Thanks for the prayers everyone.


Regards
I'm very happy for baby Shaheera.

She now has a brilliant future ahead!

Wish you and your family a best health!

I hope in future, very soon, other people will greet me and many others the same if gene therapy hits the right spot.

-P.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on July 12, 2013, 12:11:46 PM
Day +109

Doctor allowed my daughter and wife to visit Dubai for 1 month. They will stay for few weeks for visa formalities.

Her immunity is low due to having immunosuppressant which will continue up to one year. No transfusion after transplant.

Thank for prays.


Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: catchR on July 15, 2013, 01:36:47 AM
Wonderful news, that Baby Shaheera is doing well!!!

All the best Shaheera.... :yes :yes


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on October 18, 2013, 09:23:48 AM
Its been 7 months post bone marrow transplant for my daughter and she is managing quite well. She is transfusion independent from last 200 days eventhough there was fluctuation in HG level and that was managed with tapering of Cyclosporine dosage. Medicines will continue up to one and then the vaccination process will start. Her transplant physician monitoring reports monthly basis.

Met with two families here in dubai and both have their first babies diagnosed thalassemia major. Its very painful.

Its journey over a long distance. 


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Canadian_Family on October 18, 2013, 09:25:25 AM
All is good. Glad to hear.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Luana on October 18, 2013, 11:04:09 AM
Very glad that your daughter is doing well!  Best wishes &  good luck for a healthy future for all your family but especially for your little daughter :wink


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on October 18, 2013, 11:14:30 AM
I'm happy to hear that your daughter is doing well post BMT. That is good news.

It is sad that unintended thal births continue to occur in more developed nations, and especially in a nation that easily has the money to run awareness and prevention programs. With the huge amount of immigrants in the UAE, awareness and prevention should be a top priority.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: catchR on November 25, 2013, 10:31:02 PM
Really happy to hear that Shaheera no longer needs transfusion and is doing well. I have been following your posts since the start and its really hearting to come across success stories like yours and also as a parent see a child free from Thal.....

Best Wishes and God Bless!!

Totally agree with Andy that all the Nations should have good awareness / prevention programs...especially when simple and cheap tests like HbLC can easily determine the risk.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on May 20, 2014, 10:23:35 PM
It’s very difficult for me to write this that my daughter Shaheera’s bone marrow transplant become unsuccessful post 11 months of transplant. During last 11 months her hemoglobin was stable at 9 but at once she got high fever and hemoglobin dropped to 6 and she got transfused this Feb 2014 (Last Transfusion Feb 2013)
Test for donor chimerism repeated few days before and it came <10% so it means she become thalassemia again. Transplant physician advised for re transplant after sometime.

Thank you everyone for your love and prays for my only chid.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: catchR on May 21, 2014, 08:51:16 AM
Extremely sorry for Shaheera....it must be so difficult for you and your family, being so close.

Hope things improve and Shaheera soon has successful a graft. God Bless!


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Sharmin on May 21, 2014, 09:58:41 AM
I am sorry to hear that the transplant failed.  I hope that the next attempt is successful.  Wishing your daughter a happy and health future.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Canadian_Family on May 21, 2014, 02:36:12 PM
Don’t know what to say, re-transplant is an option. It depends how desperate you are. Bone Marrow Transplant certainly is an option but is not a perfect cure for most. The reason for imperfection is the Chemotherapy which effects fertility and other organs of the body. The baby has already gone through it one time, not sure what toll her body took with the first transplant. It is a risky procedure and some choose not to go this route (even they have the resources/match available) because of the damage and risk.

In the end, Agreed, it is the only available cure at this moment. Should people refrain from Bone Marrow as other treatments are in the pipeline. The management of Thalassemia has improved so much that patients are living close to normal lives. Should people wait for next five-ten years and hope for gene therapy and other techniques. There are promising trials going on while we speak. This is a debate every parent or patient should have before taking any decision.

It will be interested to see how other members think.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Bostonian_04 on May 21, 2014, 02:45:06 PM
I am sorry to hear that the transplant was not successful. But the good part is she is Ok and she can still live a healthy , fulfilling life with the current treatments available. whatever you decide going forward, please remember there are lots and lots of kids and adults who are managing thalassemia and life using the current treatment of blood transfusion and chelation.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on May 21, 2014, 02:56:01 PM
I would also advise that you go slowly deciding on a second BMT. One recent case reported here did not end well as the child died. In another case a few years back, our member's son had a successful second transplant but only survived because he had the best BMT doctors on earth (Dr Lucarelli and Dr Sodani from Italy). The child went through two excruciating years after the second BMT before he was out of danger. Those two years were very rough, as the boy slipped into a coma on several occasions. I would ask for stats on the success rate of second BMT's before making any decision.

I agree with Canadian Family. With advancements in treatment, life with thal is nowhere as bad as it once was. Thals can have fairly normal lives and treatment continues to improve.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Pratik on May 25, 2014, 01:44:51 PM
I am so sorry to hear that. On one moment you know that you are cured and the next moment you are told that your child has developed thal again...really no words to express the grief.

But I agree with everybody. It is better not to put your precious baby in danger again. Shaheera is close to under 3 years or so, correct? So even if you wait 5-10 years, before she turns adult, I am very confident now with the trials that are going these days, a GREAT cure would be found.

I don't want you to go through the pain and "Oh if or only I wished..." again. A relative of mine, I was very small. He even went the BMT successfully of great sibling match donor. But he developed extreme fever and other symptoms and doctors couldn't save him. Today when I meet his mother, she always tells me that only if she didn't went for that BMT.

This was like 20-25 years ago. Things have improved today and you went for BMT nicely and that all is great. But really, risking 2nd time is something I would consider to a very larger scale.

Quality of life of thals has improved today and by the time she steps in the important years of her life, with God's grace hopefully, we will have a rock solid treatments like gene therapy.

Stay strong!

-P.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Shaheera on June 13, 2014, 02:58:36 AM
Dear Friends,

Thanks for encouragement and support.

I have discussed the case of my daughter with Dr. Pietro Sodani and Professor Guido Lucarelli (from Mediterranean Institute of Hematology Italy) and they are pretty hopeful and optimistic for the 2nd Transplant.

Not decided anything yet but for sure will fight till last breath of my life.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on June 13, 2014, 08:44:13 PM
They are the most experienced doctors at doing BMT's. Their expertise at post BMT care is especially important.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: EugenioLaMesa on September 08, 2014, 07:31:41 AM
Hi,

I'd like to add some thoughts about doing or not doing BMT in general (regardless of this second transplant).
Some people in this post have written that is better not to do BMT because Gene Therapy might be a better option in the next years.
 
I've discussed it with Dr. Pietro Sodani and here is point of view:

1) BMT is the only cure, with 30 years of experience and data available
2) BMT is more effective in young children
3) Gene Therapy is still a trial, it will take some years (nobody knows how many, it could be 5-10) before we will know the results and then the long term effects
4) In Southeast Asia thalassemia patients live on average up to 20-25 years, while in western countries it is 40 years or more.
5) We don't know about the cost of Gene Therapy, it could be much higher than BMT.
6) So if today in Southeast Asia (or in the Middle East) you're a parent of a thalassemia child and you don't want to do BMT waiting for Gene Therapy, it might happen that after 5-10 years Gene Therapy is not yet available and for BMT is too late (which means that the risk of death is too high).

So it is anyway a though choice, we just wanted to give some food for thoughts. 


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Canadian_Family on September 08, 2014, 08:49:39 AM
Agreed with most of the statement but point 4 and 5. The concerned child is too young (if I am not mistaken, less that 5 years old). The parents have plenty of time to decide. Even in worst case scenario, the gene therapy fails (5-10 years) the parents can still opt for second BMT in future, why not wait for safer option till then.

I strongly object to your statement "Risk of death is too high". Thalassemia is not considered a fatal condition anymore, it is manageable. I would even not considered it a disease, it is a condition.

I do not agree with your estimation of mortality rates. We have seen people living in thier 50's and in some cases 60's in the west, the children are living much longer in East due to awareness and better management of thal. We are talking about a generation of children who begin their chelation at age of two (unlike those who started when they were in teens or older). Thal children today are expected to live normal life span in future.

However, in the interest of child, I hope the parents will find your comments helpful.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: JV on September 08, 2014, 09:02:45 AM
Canadian Family...I could not agree more! Thalassemia is not considered a disease anymore, its more of a disorder. Also, EugenioLaMesa, I am not a Doctor but a parent and those ages you gave (in my opinion) were, with all do respect, way off. Thal patients, not just in North America, are living normal lives due to early treatment and implementation of chelation at an early stage. BMT is starting to become a thing of the past if thal is diagnosed and treated properly. In 2014 time is on the side of the patient and waiting for Gene Therapy is a luxury patients now have.

James


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Waleed on April 17, 2015, 06:25:07 PM
Shareeha maine apki khabr akhbaar main parhi, umeed abhi baqi hai dost plz hamen updated rakhen is forum par ye hamare liye boht important hai...Allah kamyab kare inshAllah.

In english,

I read about your case in newspaper that you want to go for 2nd BMT with Dr. Sodani, hope is still alive and please keep us updated on this forum because it is very very important for us .. May Allah bless us All.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Tamizhan on April 18, 2015, 02:23:23 PM
Hi EugenioLaMesa,

  Things have really changed. I'm a thal patient who had 150+ transfusion, experienced with kelfer, desirox and another chelation injection which is directly given in tummy after transfusion. My spleen is not removed.
I'm 26 years old from India, south Asia and I'm leading a normal life except this hip bone joint problem which I'm gonna operate by this year end. And I'm working too for the past 3+ years. Everything is normal. I hope I'll live for 50+. Thal is 100% manageable even in developing countries. Due to my lazyness & lack of knowledge during early 2000 I developed this bone degradattion in my both hips.

Regards,
Tamizhan.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Waleed on April 18, 2015, 07:19:49 PM
Thalspals,

It seems that some pals misread Mr.Eugenio's message. He did not mean thals could not live healthier lives, rather he pointed out risks and complications involved in Thals life generally. Please have some respect for the gentleman.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: jay on April 19, 2015, 10:23:35 AM
I totally agree with EugenioLaMesa at most respect. I have seen both worlds south asian and western. Although I am not at all agree with the risk level of unmatched or unrelated donor. At this moment what i think is gene therapy specifically may not cure me depending up on my multiple mutations where as BMT works irrespective of mutation/s. It hearts me when we think of cure more than prevention. I would like to get the lowest risk available at this moment towards cure. With introduction of gene therapy i except some lowering in price of the BMT. Matching sibling BMT is my choice and will remain until the last day of gene therapy available at nearest bmt hospital.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on April 19, 2015, 12:59:36 PM
Jay,

It doesn't matter what the original mutations are. The point of gene therapy is to insert a new working beta globin gene that does the work your current genes cannot. The original gene becomes irrelevant.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: jay on April 20, 2015, 02:21:09 AM
thanks Andy it is very blur idea when i see some bluebird videos.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Pratik on April 21, 2015, 01:58:35 PM
Hi EugenioLaMesa,

  Things have really changed. I'm a thal patient who had 150+ transfusion, experienced with kelfer, desirox and another chelation injection which is directly given in tummy after transfusion. My spleen is not removed.
I'm 26 years old from India, south Asia and I'm leading a normal life except this hip bone joint problem which I'm gonna operate by this year end. And I'm working too for the past 3+ years. Everything is normal. I hope I'll live for 50+. Thal is 100% manageable even in developing countries. Due to my lazyness & lack of knowledge during early 2000 I developed this bone degradattion in my both hips.

Regards,
Tamizhan.
Hi Tamizhan,

Great work! I want to know if you don't mind as to how that hip joint degradation happened. Asking so that we and all other thals can prevent and take extreme care of it. And more than that, be alarmed of early signs.

I really hope you feel better and live a much more awesome life. Don't worry, you'll kick ass for many many more years to come and we will be still chatting on Thalpal like this in 2060 and beyond! :)

Best,

-P


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Lokkhi maa on April 21, 2015, 10:14:58 PM

Dear Shaheera,

How are you and your family?Now how is your baby? You have so much patience which Allah gives you to manage the situation. May Allah always help you and keeps well and good health of your baby with all of ours also..

Best Regards


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Tamizhan on April 23, 2015, 03:39:49 PM
Hi Pratik,

Before having any problem related to bone, I was told by doctors that I would suffer from joint pain as I was about to start my first iron chelator kelfer in 1997. This affects me and my parents mentaly. And before its start paining I constrained myself from adequate walking, playing needed for that age. This is the first mistake I did. I shouldn't be lazy those days. I should ve adequate walk.
Besides kelfer also played his role. In couple of years after having kelfer, It become difficult for me to sit on the ground folding my legs. It was paining but we didn't take any action against it. It went on till 2009. Meanwhile kelfer was stopped and i was advised to take desifrox as it will cause less damage to bone when compared with kelfer.
Day by day my walking style differs but v didn't notice as there s no much difference to notice. Till now it was knee joint pain only. In 2009, I was supposed to stand for 3 hours for my engineering lab session. That time I felt my first hip joint pain. It was very severe and shocking pain.
I told this to my hematologist even then vitamin d or calcium is not tested and no supplement is advised. It was my 19th age, the age of growth. My bones grows with less bone density.
In June 2009, my transfusion was also stopped as I was re.diagnosed As thala intermedia. So it was like my bone has to grow with less vitamin d, calcium along with 7.4+ HB only. We took x ray in 2009 July and told it was starting stage of degradation and I was advised to do few strengthening exercise which I never did.
After this, my walking became rare. No physical exercise. Hip joint keep on degrading. Pain becoming severe even if I walk for less distance. And I went to orthopedic, they advised me to undergo hip bone joint replacement surgery. They told like avion on both hips. I thought hip joint replacement surgery is not needed but when I found Walking gesture changed, I convinced myself for operation. In 2014 only my hematologist advised me to take calcium supplement. For my past 25 years, I didn't take any supplement other than folic acid. I'm planning for my operation by this November.

Mistakes I did are
1.Before real pain starts I was afraid of pain. Mentally gave way for the pain. Started no to many activities in early age.
2.kelfer, which cause bone problem.
3.lack of exercise, physical activities.
4.living with low HB in my adolescent & teenage which cause low bine density but I'm tall enough.
5.Low supplement for bones. Have the habit of having soda rarely. Whenever I v coke or Pepsi I literally feel my teeth erosion due to it. So I'm having it very rarely.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: kaleem on January 14, 2019, 12:41:46 AM
my 2 year old kid is admitted at hospital for BMT and today its post transplant day 19.. yesterday his WBC was 6000 and Hb 8.1.. today his WBC fell to 4000 and Hb 7.6 and require blood transfusion. Doctors started Cyclosporine 3 days ago but he is not taking this medicine orally at all. yesterday we tried it by mixing it with Yogurt and then he took it with ease.. however thid morning with these new results i am really afraid that it might be due to Yogurt.. plz guide me..


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: kaleem on January 16, 2019, 09:53:35 PM
I would like to know about your daughter condition now.. Did you opt for Second BMT?


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on January 21, 2019, 04:49:48 PM
Kaleem, has there been any improvement? If problems persist, try contacting Dr Sodani for advice.
Email to info@curethalassemia.org



Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: kaleem on January 21, 2019, 10:58:45 PM
Andy.. today is our day + 27.. His Hb rise to 9.2 from 9.0 yesterday and WBC 4.2 a bit lower than yesterday.. however his platelets drop from 25000 to 11000 this morning.. he is getting platelets transfusion today.. he also got two doses of steroid yesterday.. he caught a diarrhea 3 days ago and still persistent.. he was active throughout the process until 2 days ago.. he didnt eat anything for 2 days.. vomiting and diarrhea.. doctors were constantly insisting for oral medication which he was reluctant.. finally we started mixing medicine with juices which caused diarrhea.. we never feed him juice since his birth... now he is dull and sleeping most of the time..


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on January 22, 2019, 04:10:44 PM
It's still very early post BMT. Patience is required as his bone marrow begins to work again.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: kaleem on January 23, 2019, 09:44:32 PM
Andy.. i would like to know whether we can give him yogurt or not? secondly is it fine to mic Cyclosporine medicine with Yogurt? thanks a lot


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on January 26, 2019, 04:06:19 PM
The only foods that you need to talk to your doctor about while cyclosporine is being given are foods rich in potassium. They can be eaten, but not in excess. Yogurt is fine and helps restore the intestinal bacteria that many meds kill.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: kaleem on January 26, 2019, 07:37:13 PM
we will mix cyclosporine with Yogurt .. thanks a lot Andy.. actually he is not taking this medicine with Milk or with Juice.. actually on Neural it is mentioned that it can be taken with milk, chocolate milk and orange juice.. however nothing is mentioned about Yogurt..


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: Andy Battaglia on January 31, 2019, 01:31:43 PM
Yogurt is a milk product, and is fine to eat. Taking probiotics while taking antibiotics will help prevent complete depletion of intestinal bacteria. My own experience this past year showed me how important it is to do so. I was on IV antibiotics, followed by a 10 day course of a combination of antibiotics. My prior experience was that I would have problems for many months after taking antibiotics. Taking the probiotics, including yogurt, greatly reduced the problems I had after taking the very strong antibiotics.


Title: Re: Bone Marrow Transplant of Shaheera Faheem
Post by: kaleem on January 31, 2019, 04:28:40 PM
thank you so much Andy for sharing your experience.. we are still at hospital.. my kid shifted from BMT unit to another private ward as he got a severe diarrhea.. doctor said that it is due to gastro intestine GVHD... steroid dose was increase firstly from 10 mg per day to 15 mg per day and yesterday it was increased further to 26 mg per day.. his body weight is 13.5 kg.. we are waiting for his diarrhea to get cured and then will get disscharged from hospital.. its day 46 at hospital and day plus 36 after BMT...