Discussion Forums > Thalassemia Major

about my cute girl

(1/2) > >>

van:
Hi Friends,

Thanks to Andy, who allow me to join this group.

We are very happy seeing this forum while doing some on line research on URTH Trial (A Pilot Trial of Unrelated Donar Hematopoietic Cell Transplantation).
We would like to join in this family group and want to be as a family member.

I am a father of 18 months old cute baby girl. My baby girl is Thalassemia patient and was diagnosed at the age of older 5. We are doing regular blood transfusions every 4 weeks and Desferal infusions 3 times in a week and it is going to be 4 times from this week onwards.

Me and my wife all together from different families but we both are Thal carriers and we live in US.

We have a plan to do BMT treatment closer in 2012 but we are in dynamo to choose option of the treatment whether it is standard which is in use from many years say like more than 15 - 20 years and other one is in study (URTH) which is still in research. I know both have cons and pros, one with old medicine known success rate and other new medicine with less toxicity may save useful cells with unknown success rate.

Advanced wished to all your valuable suggestions.

Thanks,
Van

Andy Battaglia:
Hi Van and welcome to thalpal,

Do you have a matching donor? What part of the US are you in and have you consulted with any bone marrow transplant centers as of yet?

van:
As per hospital  team, we do have good potential donors in marrow registry but still waiting to make decision on method of transplant. We may have to decide in 1 - 2 weeks of time period.
We belongs to OH state.
Yes, we consulted BMT specialist (who is in Thal clinical research) in the same hospital where we are doing regular blood transfusions.

Andy Battaglia:
Hi Van,

If it's a BMT I am assuming Cincinnati, which has a very good reputation. We have had a couple members here whose children have undergone transplants from unrelated donors and it has gone quite well. I believe the process has advanced enough where it is truly a viable option.

Sharmin:
Wishing you best of luck Van,  I pray that your cute girl is cured of thalassemia and that the BMT goes smoothly.

Sharmin

Navigation

[0] Message Index

[#] Next page