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HLH Journal

No News is Good News. September 22, 2013. No news is good news, it’s trite but true for us. I have not written here recently because in the past, I’ve tried to time updates to medical news. Thankfully we haven’t had any developments to share. For those who have followed our story, Zoe is doing wonderfully. She’s begun her 2nd year of preschool now, has made many friends, been able to participate in play dates, beach trips (in full sun! HLH Journal continues to rank very highly for certain web searches fo...

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No News is Good News. September 22, 2013. No news is good news, it’s trite but true for us. I have not written here recently because in the past, I’ve tried to time updates to medical news. Thankfully we haven’t had any developments to share. For those who have followed our story, Zoe is doing wonderfully. She’s begun her 2nd year of preschool now, has made many friends, been able to participate in play dates, beach trips (in full sun! HLH Journal continues to rank very highly for certain web searches fo...

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HLH Journal | hlhjournal.com Reviews

https://hlhjournal.com

No News is Good News. September 22, 2013. No news is good news, it’s trite but true for us. I have not written here recently because in the past, I’ve tried to time updates to medical news. Thankfully we haven’t had any developments to share. For those who have followed our story, Zoe is doing wonderfully. She’s begun her 2nd year of preschool now, has made many friends, been able to participate in play dates, beach trips (in full sun! HLH Journal continues to rank very highly for certain web searches fo...

INTERNAL PAGES

hlhjournal.com

1

Life Goes On | HLH Journal

https://hlhjournal.com/2012/02/02/life-goes-on

February 2, 2012. We have had a minor setback on the site, there was a virus problem with the software used here, which forced us to wipe out the website and restore everything to sure that it was fixed. Some pictures and other features are currently broken but will be updated when possible. Apologies to anyone affected. Where have we been? Well thankfully, we’ve had little bad news to report, and for some reason remembering to report the good falls by the way at times. Beyond that, in the recent months ...

2

No News is Good News | HLH Journal

https://hlhjournal.com/2013/09/22/no-news-is-good-news

No News is Good News. September 22, 2013. No news is good news, it’s trite but true for us. I have not written here recently because in the past, I’ve tried to time updates to medical news. Thankfully we haven’t had any developments to share. For those who have followed our story, Zoe is doing wonderfully. She’s begun her 2nd year of preschool now, has made many friends, been able to participate in play dates, beach trips (in full sun! HLH Journal continues to rank very highly for certain web searches fo...

3

Dr. M’s Second Visit | HLH Journal

https://hlhjournal.com/2010/03/12/dr-ms-second-visit

Dr M’s Second Visit. March 12, 2010. Dr M returned this evening around 7pm to discuss our status, our next steps and his discussions now 24 hours after our first devastating meeting where we learned the diagnosis. We first discussed Zoe’s current state:. Her liver and spleen remain enlarged. Her blood count (hemoglobin) came up to 8.6 from 7.9, but her platelets remain low at 15 (15,000). The team was unanimous in supporting the treatment regimen that Dr. M was to propose. Dexamethasone: has a steroidal ...

4

Archives | HLH Journal

https://hlhjournal.com/archives

Posts by order of oldest to newest:. Dr M’s Second Visit. Temperature Scare and Other Notes. Lastword Report & Notes. Contemplating the Bone Marrow Transplant. 2 O’clock and All is (mostly) Well. Ferritin Levels and Blood Draws. A Talk with the Duke PBMT unit. One Tube Down and Other Notes. The Revenge of Diaper Rash. 8220;You’ve Got to Have Faith”. On Being an Advocate. The First of Many Firsts. A Very Good Friday. Never a Dull Day. The Horrible Very Bad “NPO”. HLH: A Simple Description. Day 12: A New K...

5

Diagnosis | HLH Journal

https://hlhjournal.com/2010/03/11/diagnosis

March 11, 2010. We learned that Zoe is likely to have HLH on Wednsday March 10th. The hematologist (Dr. M) who made the diagnosis came into the room around 7pm to talk to us and presented the following information:. Zoe currently presents 4 out of 8 signs of the disease, and as Dr. M put it, “half” of two other signs; he feels given this and his analysis that we have about a 95% chance that the disease is HLH. There is a 5% chance (these are always estimates of course) that she has Neuroblastoma. This is...

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hlhjournal.com

HLH Journal

No News is Good News. September 22, 2013. No news is good news, it’s trite but true for us. I have not written here recently because in the past, I’ve tried to time updates to medical news. Thankfully we haven’t had any developments to share. For those who have followed our story, Zoe is doing wonderfully. She’s begun her 2nd year of preschool now, has made many friends, been able to participate in play dates, beach trips (in full sun! HLH Journal continues to rank very highly for certain web searches fo...

hlhjourney.blogspot.com

My Journey Through HLH

My Journey Through HLH. Wednesday, June 30, 2010. New Way Of Life. My life has felt like a roller coaster these past few days. My son Julian is doing well. He's busy with sports, video games and friends and appears to spend very little time thinking of being sick. Me on the other hand, spend most of my time thinking of it, holding back tears and pushing away the vivid memories of his worst moments. Tuesday, June 22, 2010. Don't Ask If You Don't Want to Know. Today was the last day that my son had to take...

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