Comments for HLH Journal http://www.hlhjournal.com An effort to document one family's experience with the disease HLH, or Hemophagocytic Lymphohistiocytosis Wed, 15 Feb 2012 01:52:51 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on The Spring of our Discontent by Davita Mims http://www.hlhjournal.com/2011/06/the-spring-of-our-discontent/#comment-1093 Davita Mims Wed, 15 Feb 2012 01:52:51 +0000 http://hlh.evanz.org/?p=408#comment-1093 I share your story and can relate to you. My son Marvell passed away from this diease back in 2002 you just have to trusrt and believe everything will be ok. I share your story and can relate to you. My son Marvell passed away from this diease back in 2002 you just have to trusrt and believe everything will be ok.

]]> Comment on HLH: A Simple Description by Diana Jandreski http://www.hlhjournal.com/2010/04/hlh-a-simple-description/#comment-1092 Diana Jandreski Tue, 14 Feb 2012 22:38:42 +0000 http://hlh.evanz.org/?p=86#comment-1092 I lost my boyfriend to this horrible disorder. He first started to feel ill in August, 2011 and was diagnosed in early September with Secondary HLH. I can't imagine a harsher or more callous disease. They had him on Chemo treatments and were in search of a match for a Stem Cell Transplant. In early December his doctors decided that they wanted to remove his spleen because it was enlarged. Throughout his whole illness I researched to try to be informed the best I could. When I researched the spleen in December what I found was that in his situation an enlarged spleen was normal due to the fact that it was being overworked. The spleen essentially was the only organ in his body that was actually filtering his blood and protecting him as his immune system had turned against him. The spleen was concentrating the HLH in one area instead of having it travel throughout his entire body which would inturn damage other organs. No one wanted to listen to 28 year old Diana as I tried to convince him, his family, even his doctors. It was only about 2 weeks after the surgery that his kidneys began to fail and his lungs collapsed. He passed away on Christmas Eve. I understand that every case is different but I wanted to share this piece of information. I hope someone gains a better understanding of HLH soon so that they can help others. I will never understand why this happened to the best man I have ever met. Love you always Rob, Diana I lost my boyfriend to this horrible disorder. He first started to feel ill in August, 2011 and was diagnosed in early September with Secondary HLH. I can’t imagine a harsher or more callous disease. They had him on Chemo treatments and were in search of a match for a Stem Cell Transplant. In early December his doctors decided that they wanted to remove his spleen because it was enlarged. Throughout his whole illness I researched to try to be informed the best I could. When I researched the spleen in December what I found was that in his situation an enlarged spleen was normal due to the fact that it was being overworked. The spleen essentially was the only organ in his body that was actually filtering his blood and protecting him as his immune system had turned against him. The spleen was concentrating the HLH in one area instead of having it travel throughout his entire body which would inturn damage other organs. No one wanted to listen to 28 year old Diana as I tried to convince him, his family, even his doctors. It was only about 2 weeks after the surgery that his kidneys began to fail and his lungs collapsed. He passed away on Christmas Eve. I understand that every case is different but I wanted to share this piece of information. I hope someone gains a better understanding of HLH soon so that they can help others. I will never understand why this happened to the best man I have ever met.
Love you always Rob,
Diana

]]> Comment on Life Goes On by Shannon Yates http://www.hlhjournal.com/2012/02/life-goes-on/#comment-1091 Shannon Yates Thu, 09 Feb 2012 02:57:03 +0000 http://www.hlhjournal.com/?p=513#comment-1091 Love the painting, what a wonderful thought. I hope CCH provides you with all the information that you need. Shannon Love the painting, what a wonderful thought. I hope CCH provides you with all the information that you need.

Shannon

]]> Comment on A Scare-free Halloween? by Tisha Newkirk http://www.hlhjournal.com/2011/10/a-scare-free-halloween/#comment-1050 Tisha Newkirk Wed, 25 Jan 2012 16:26:24 +0000 http://hlh.evanz.org/?p=418#comment-1050 She is absolute gorgeous! I am happy to hear she is STILL defying the odds! She is absolute gorgeous! I am happy to hear she is STILL defying the odds!

]]> Comment on HLH: A Simple Description by Jean Siegel http://www.hlhjournal.com/2010/04/hlh-a-simple-description/#comment-1023 Jean Siegel Sun, 15 Jan 2012 14:50:06 +0000 http://hlh.evanz.org/?p=86#comment-1023 We just got the preliminary diagnosis and are preparing for the bone marrow transplant. Our grandson was in the hospital with the swollen liver and fever 105.4. The doctor in Cincinatti is studying the blood taken from the family and has initially found the mutation. It all started with a diagnosis of epstine barr (mono). He is healthy now and she wants to do the treatment now. It is not a case of if he gets sick again it is a matter of when. Thank you for the valuable information. The other children are being tested. Jean We just got the preliminary diagnosis and are preparing for the bone marrow transplant.
Our grandson was in the hospital with the swollen liver and fever 105.4.
The doctor in Cincinatti is studying the blood taken from the family and has initially found the mutation.
It all started with a diagnosis of epstine barr (mono).
He is healthy now and she wants to do the treatment now.
It is not a case of if he gets sick again it is a matter of when.
Thank you for the valuable information.
The other children are being tested.
Jean

]]> Comment on HLH: A Simple Description by Kelly J. http://www.hlhjournal.com/2010/04/hlh-a-simple-description/#comment-975 Kelly J. Mon, 09 Jan 2012 02:04:58 +0000 http://hlh.evanz.org/?p=86#comment-975 Thank you for the description of this complicated disease. My brother was diagnosed in August, 2011, with secondary HLH. At the beginning of December he was also diagnosed with diffuse large B cell lymphoma, a common progression of the disease. I lost my brother to this horrible disease at the end of December, 2011, and he was 28 years old. He fought a really hard battle for four months. My thoughts and prayers go out to all of the families that are currently fighting the same battle. I only hope more information can be found to be able to better understand and treat this disease. My thoughts are with everyone. ~ Kelly Thank you for the description of this complicated disease. My brother was diagnosed in August, 2011, with secondary HLH. At the beginning of December he was also diagnosed with diffuse large B cell lymphoma, a common progression of the disease. I lost my brother to this horrible disease at the end of December, 2011, and he was 28 years old. He fought a really hard battle for four months. My thoughts and prayers go out to all of the families that are currently fighting the same battle. I only hope more information can be found to be able to better understand and treat this disease. My thoughts are with everyone. ~ Kelly

]]> Comment on Contact by Leigh Ann Duncan http://www.hlhjournal.com/contact/#comment-943 Leigh Ann Duncan Wed, 04 Jan 2012 15:59:37 +0000 http://hlh.evanz.org/?page_id=42#comment-943 My daughter is now 10yrs old but she was diagnosed with HLH when she was 4 months old. She went through extensive testing and 3 of the strongest chemos there are for a child that young. She had her BMT on Sept. 12 2002 and has done great ever since. This is a very rare disease and I wish more people were aware of it. Thank you!!! My daughter is now 10yrs old but she was diagnosed with HLH when she was 4 months old. She went through extensive testing and 3 of the strongest chemos there are for a child that young. She had her BMT on Sept. 12 2002 and has done great ever since. This is a very rare disease and I wish more people were aware of it. Thank you!!!

]]> Comment on 6 Month Studies by Patricia Naylor Australia http://www.hlhjournal.com/2011/01/6-month-studies/#comment-889 Patricia Naylor Australia Sat, 31 Dec 2011 21:38:01 +0000 http://hlh.evanz.org/?p=391#comment-889 Since writing last November, I am happy to report that our Grandson Paul Henry Butler, is now off Life Support. Pauli commenced Chemotherapy, Antibiotics Steroid almost immediately The Princess Margaret Hospital Perth W.A and Ronald McDonald House, have made every effort to support and assist, our daughter Samanti and son-in-law Geoff to be with their little boy round the clock. Paul Henry has responded well to treatment, he has had his ups and downs and has a long way to go. A Bone Marrow Donor is now being sought by Princess Margaret Hospital Perth W.A for Paul Henry the transplant is necessary if he is to survive HLH. By enrolling on the International Bone Marrow Register, going to your GP you could save a life of a Precious Child. Since writing last November, I am happy to report that our Grandson Paul Henry Butler, is now off
Life Support. Pauli commenced Chemotherapy, Antibiotics Steroid almost immediately The Princess Margaret Hospital Perth W.A and Ronald McDonald House, have made every effort to support and assist, our daughter Samanti and son-in-law Geoff to be with their little boy round the clock.

Paul Henry has responded well to treatment, he has had his ups and downs and has a long way to go.

A Bone Marrow Donor is now being sought by Princess Margaret Hospital Perth W.A for Paul Henry
the transplant is necessary if he is to survive HLH.

By enrolling on the International Bone Marrow Register, going to your GP you could save a life of a Precious Child.

]]> Comment on HLH: A Simple Description by Bazza http://www.hlhjournal.com/2010/04/hlh-a-simple-description/#comment-660 Bazza Fri, 16 Dec 2011 19:16:13 +0000 http://hlh.evanz.org/?p=86#comment-660 My little cousin ( aged 6 months) in Canada is fighting hard right now against this disease and now needs a bone marrow transplant having had Chemo. She has such an amazing family and friends but its so hard for everyone especiallly at Christmas time. Please send your thoughts to her and her mum and dad. My little cousin ( aged 6 months) in Canada is fighting hard right now against this disease and now needs a bone marrow transplant having had Chemo. She has such an amazing family and friends but its so hard for everyone especiallly at Christmas time. Please send your thoughts to her and her mum and dad.

]]> Comment on Contact by Jackie saden http://www.hlhjournal.com/contact/#comment-562 Jackie saden Sat, 03 Dec 2011 05:28:25 +0000 http://hlh.evanz.org/?page_id=42#comment-562 My son was diagnosed with HLH in January 2011 at 2 months old. I have kept up with your blog and your sweet little Zoe ever since. Your blog was actually the very first HLH blog i found and it gave me great insight into what was to come with my little boy Jackson. Anyways, Jackson had is BMT on April 15 and is doing wonderful. I read that you wanted to hear more about survivor stories and Jackson is another HLH survivor to add to the list. I started a blog for him during the days of him getting his diagnosis at www.jacksonlynn.wordpress.com. My son was diagnosed with HLH in January 2011 at 2 months old. I have kept up with your blog and your sweet little Zoe ever since. Your blog was actually the very first HLH blog i found and it gave me great insight into what was to come with my little boy Jackson. Anyways, Jackson had is BMT on April 15 and is doing wonderful. I read that you wanted to hear more about survivor stories and Jackson is another HLH survivor to add to the list. I started a blog for him during the days of him getting his diagnosis at http://www.jacksonlynn.wordpress.com.

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