Comments on: Heather, SPTCL, the Next Chapter – Hang on to Your Hat! http://trishatorrey.com/2008/07/08/heather-sptcl-the-next-chapter-hang-on-to-your-hat/ A blog about patient empowerment, advocacy, safety, consumerism and tools to navigate the dysfunction of American health care. Thu, 29 Jul 2010 01:50:39 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Trisha Torrey http://trishatorrey.com/2008/07/08/heather-sptcl-the-next-chapter-hang-on-to-your-hat/comment-page-1/#comment-7666 Trisha Torrey Tue, 29 Jul 2008 13:33:32 +0000 http://trishatorrey.com/?p=446#comment-7666 Sonia, I tried to reply to you by email but it was returned. Here was my note to you: I'm more than willing to hold your hand through this process if you are interested. The clonality tests can be confusing. And you need to get a hold of a copy of the original pathology report that diagnoses SPTCL yourself -- I can help you decipher it. I'll also refer you to the NIH can give you that information. What made you go to the doctor to begin with? Let me know if I can help. Trisha write to me at: blog - at - epadvocate.com Sonia,

I tried to reply to you by email but it was returned. Here was my note to you:

I’m more than willing to hold your hand through this process if you are interested.

The clonality tests can be confusing. And you need to get a hold of a copy of the original pathology report that diagnoses SPTCL yourself — I can help you decipher it. I’ll also refer you to the NIH can give you that information.

What made you go to the doctor to begin with?

Let me know if I can help.

Trisha
write to me at: blog – at – epadvocate.com

]]> By: Sonia http://trishatorrey.com/2008/07/08/heather-sptcl-the-next-chapter-hang-on-to-your-hat/comment-page-1/#comment-7660 Sonia Tue, 29 Jul 2008 13:06:55 +0000 http://trishatorrey.com/?p=446#comment-7660 My fifteen year old son has just received this diagnosis from his hematologist/oncologist. I have read information from different sites online, and I'm baffled by the fact that he does not have all the symptoms listed. I will proceed to have a clonality test done asap. If there is any other information you can share with me, please do not hesitate to contact me. Baffled in PA. My fifteen year old son has just received this diagnosis from his hematologist/oncologist. I have read information from different sites online, and I’m baffled by the fact that he does not have all the symptoms listed. I will proceed to have a clonality test done asap. If there is any other information you can share with me, please do not hesitate to contact me.
Baffled in PA.

]]> By: Trisha Torrey http://trishatorrey.com/2008/07/08/heather-sptcl-the-next-chapter-hang-on-to-your-hat/comment-page-1/#comment-4593 Trisha Torrey Wed, 09 Jul 2008 11:27:22 +0000 http://trishatorrey.com/?p=446#comment-4593 Natalie, Thanks for your kind words... I can't tell you how happy I was that my bad experience could make someone else's experience a bit easier. That said, your sister is a strong and remarkable young woman who knew how to take her energy and apply it in all the right places! There will be someone else who needs help - a year, two, or ten from now. BOTH Heather and I will be there to lend an assist. That's how it works -- and -- it works well! Time to celebrate! Trisha Natalie,

Thanks for your kind words… I can’t tell you how happy I was that my bad experience could make someone else’s experience a bit easier. That said, your sister is a strong and remarkable young woman who knew how to take her energy and apply it in all the right places!

There will be someone else who needs help – a year, two, or ten from now. BOTH Heather and I will be there to lend an assist. That’s how it works — and — it works well!

Time to celebrate!

Trisha

]]> By: Natalie http://trishatorrey.com/2008/07/08/heather-sptcl-the-next-chapter-hang-on-to-your-hat/comment-page-1/#comment-4570 Natalie Wed, 09 Jul 2008 00:43:02 +0000 http://trishatorrey.com/?p=446#comment-4570 Trisha, I am one of Heather's sisters and I wanted to say thank you. Your story made us all hopefull and your guidance made Heather empowered. We can all "be there" for her, but you helped her move mountains. I am so thankful that you came into her life. WOW, I just cannot express how happy I am that she doesn't have cancer! Thank you is just not enough! Natalie Trisha,
I am one of Heather’s sisters and I wanted to say thank you. Your story made us all hopefull and your guidance made Heather empowered. We can all “be there” for her, but you helped her move mountains. I am so thankful that you came into her life. WOW, I just cannot express how happy I am that she doesn’t have cancer!

Thank you is just not enough!
Natalie

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