Quote:
Originally Posted by N dean
Thank you matthew for your response, our consultants said that they wanted to see a significant increase in neutrophils and that they wanted him transfuse free by 4 months due to his age and impact on hos life as he is unable to go to school ect, we have had a bone marrow biospy today and speaking with consultant again tomorrow, depending on the results of this they will determine if ATG has failed or not as they seem to think that we are not going to improve much more so our next step is transplant which we have a 9/10 donor so we will just have to see tomorrow. I can understand your mums despair its awful this isnt an easy thing to live with and watching in hopes that u see an increase in everything and not getting the results you want is devasting but as you say there is still time. Im on the understanding that with vsaa they want to see a more defined reaponse in counts and transfusions sooner due the the damage that it may have already caused to the marrow. I also think that with children they do not tend to like to leave the time as long as 9 months. Our consultant has daid that here its 4 months for children before they look at other options and then obviously you still have a chance of a response whilst everything is being put i to place. I hope your mum shows sign of improvement soon
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Dear Neal,
I appreciate your explaining your son's situation better. You're correct: with children, they don't like to wait it out. The next option is a bone marrow transplant. I've heard of young adults waiting it out, but usually children are encouraged to get a BMT if horse-ATG does not work at 6 months.
Also, vsaa might be looked at a little bit differently than saa in terms of waiting-and-watching timeframe because excessively low neutrophils can lead to infections.
I surely hope your son fully recovers and can go back to school so he can live a normal life that he deserves.
Even though I am a stranger, I give my love and support to your son and to your family. You will get through this somehow. There is light at the end of the tunnel.
Keep us posted, please!
