Comments for evan zimmerman http://www.evanz.org Fri, 12 Aug 2011 16:40:19 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Two Steps Forward, One Step Back by Tania Erdmann http://www.evanz.org/2011/06/15/two-steps-forward-one-step-back/comment-page-1/#comment-3653 Tania Erdmann Fri, 12 Aug 2011 16:40:19 +0000 http://hlh.evanz.org/?p=413#comment-3653 We JUST embarking on this exact same journey for our two year old daughter. It is surreal to read about it here. Thank you so much for sharing this. It does worlds of good for terrified parents out here that are facing the same fight. We are 4 weeks into the HLH protocol, awaiting donor. Planning to go straight to transplant following protocol in 4 weeks. God Bless you and keep you all in his tender loving care. Tania We JUST embarking on this exact same journey for our two year old daughter. It is surreal to read about it here. Thank you so much for sharing this. It does worlds of good for terrified parents out here that are facing the same fight.

We are 4 weeks into the HLH protocol, awaiting donor. Planning to go straight to transplant following protocol in 4 weeks.

God Bless you and keep you all in his tender loving care.

Tania

]]> Comment on The Spring of our Discontent by Evan http://www.evanz.org/2011/06/07/the-spring-of-our-discontent/comment-page-1/#comment-3650 Evan Sat, 25 Jun 2011 19:51:35 +0000 http://hlh.evanz.org/?p=408#comment-3650 I'm sorry to hear about your nephew's diagnosis, but be grateful that it was diagnosed quickly. Please feel free to write if you have any questions you feel I could help with. I’m sorry to hear about your nephew’s diagnosis, but be grateful that it was diagnosed quickly. Please feel free to write if you have any questions you feel I could help with.

]]> Comment on The Spring of our Discontent by H. Williams http://www.evanz.org/2011/06/07/the-spring-of-our-discontent/comment-page-1/#comment-3649 H. Williams Sat, 25 Jun 2011 16:06:12 +0000 http://hlh.evanz.org/?p=408#comment-3649 Thank you so much for taking the time to share your story and documenting your beautiful Zoe's progress. I just received a call that my 9wk old nephew was diagnosed with HLH. Your site is encouraging and uplifting. Thank You. Thank you so much for taking the time to share your story and documenting your beautiful Zoe’s progress. I just received a call that my 9wk old nephew was diagnosed with HLH. Your site is encouraging and uplifting. Thank You.

]]> Comment on Two Steps Forward, One Step Back by Sandra http://www.evanz.org/2011/06/15/two-steps-forward-one-step-back/comment-page-1/#comment-3652 Sandra Fri, 17 Jun 2011 13:38:35 +0000 http://hlh.evanz.org/?p=413#comment-3652 As one of the reliable sources I can say that Zoe is really very, very bright. She may pass everyone regardless of when she starts school! And goodness are we all blessed. Things could have been much worse. As one of the reliable sources I can say that Zoe is really very, very bright. She may pass everyone regardless of when she starts school! And goodness are we all blessed. Things could have been much worse.

]]> Comment on Two Steps Forward, One Step Back by Terri Smith http://www.evanz.org/2011/06/15/two-steps-forward-one-step-back/comment-page-1/#comment-3651 Terri Smith Wed, 15 Jun 2011 19:03:22 +0000 http://hlh.evanz.org/?p=413#comment-3651 Want to send our condolences for the loss of your father. We send continued prayers for Zoe!! and your family. Thanks for keeping us udated and pray for continued healing forward with no more steps back!! Want to send our condolences for the loss of your father. We send continued prayers for Zoe!! and your family. Thanks for keeping us udated and pray for continued healing forward with no more steps back!!

]]> Comment on On Being an Advocate by DAY +11 | Liam's HLH Journey http://www.evanz.org/2010/03/30/on-being-an-advocate/comment-page-1/#comment-3262 DAY +11 | Liam's HLH Journey Mon, 23 May 2011 21:52:49 +0000 http://hlh.evanz.org/?p=57#comment-3262 [...] an advocate for your child, this link is from another family’s HLH Journey http://hlh.evanz.org/2010/03/on-being-an-advocate/ ad·vo·cate: one that pleads the cause of another; one that sup­ports or pro­motes the [...] [...] an advocate for your child, this link is from another family’s HLH Journey http://hlh.evanz.org/2010/03/on-being-an-advocate/ ad·vo·cate: one that pleads the cause of another; one that sup­ports or pro­motes the [...]

]]> Comment on Diagnosis by Carol http://www.evanz.org/2010/03/11/diagnosis/comment-page-1/#comment-3223 Carol Mon, 23 May 2011 01:47:27 +0000 http://hlh.evanz.org/?p=1#comment-3223 Our family is so grateful for your Website. I have read your Archives over and over. You have done an amazing job on documenting your family's journey with HLH. It has a blessing to read your journal. My grandson's BMT was on May 12th, 2011, reading you info has been so helpful to us during these trying times. Thank you so much. Our family is so grateful for your Website. I have read your Archives over and over. You have done an amazing job on documenting your family’s journey with HLH. It has a blessing to read your journal. My grandson’s BMT was on May 12th, 2011, reading you info has been so helpful to us during these trying times. Thank you so much.

]]> Comment on FHL, or, Familial HLH by Terri http://www.evanz.org/2010/04/17/fhl-or-familial-hlh/comment-page-1/#comment-3305 Terri Mon, 04 Apr 2011 23:51:47 +0000 http://hlh.evanz.org/?p=88#comment-3305 Hello Evan, so glad to see Zoe walking and celebrating her 1 year anniversary! What a year it has been. I am the other grandma of Liam Smith and have emailed you in the past. I am curious what gene did Zoe have. Liam has the STXBP2 (FHL-5. Liam has 3 older brothers and I have read some interesting information on the STXBP2. his two older brothers are matches for the BMT per the HLA typing and have normal NK function. his 3 year old brother has decreased NK function but not as bad as Liam's. we have a long wait now for the genetic tests to come back. 3 more weeks.His BMT will be at the Seattle's Childrens Hospital. We have a long road ahead of us-Thanks for all the great information for all of us Hello Evan, so glad to see Zoe walking and celebrating her 1 year anniversary! What a year it has been. I am the other grandma of Liam Smith and have emailed you in the past. I am curious what gene did Zoe have. Liam has the STXBP2 (FHL-5. Liam has 3 older brothers and I have read some interesting information on the STXBP2. his two older brothers are matches for the BMT per the HLA typing and have normal NK function. his 3 year old brother has decreased NK function but not as bad as Liam’s. we have a long wait now for the genetic tests to come back. 3 more weeks.His BMT will be at the Seattle’s Childrens Hospital. We have a long road ahead of us-Thanks for all the great information for all of us

]]> Comment on Diagnosis: One Year Later by Lynn http://www.evanz.org/2011/03/10/diagnosis-one-year-later/comment-page-1/#comment-3648 Lynn Sun, 03 Apr 2011 01:25:00 +0000 http://hlh.evanz.org/?p=399#comment-3648 Simply amazing... Simply amazing…

]]> Comment on HLH: A Simple Description by alejandra http://www.evanz.org/2010/04/16/hlh-a-simple-description/comment-page-1/#comment-3304 alejandra Fri, 25 Mar 2011 16:24:42 +0000 http://hlh.evanz.org/?p=86#comment-3304 Aimee my little sister was diagnosed with HLH the secondary type, she didnt make it the chemotherapy damaged her heart but atleast i know now what type of disease hurt my little sister and to be aware of this horrible disease. Thank you so much for youre information.............. Aimee my little sister was diagnosed with HLH the secondary type, she didnt make it the chemotherapy damaged her heart but atleast i know now what type of disease hurt my little sister and to be aware of this horrible disease. Thank you so much for youre information…………..

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