If you are new to the site and are seeking either a summary of Zoe’s experience so far with HLH, or more information for your own family about Zoe’s treatment choices and what we’ve learned, this is the page to read first.
Zoe was hospitalized in March of 2010 at 2 months old after approximately one week of persistent fevers and reduced platelet count which her pediatrician could not explain, but which were not improving. After several days in the hospital she was diagnosed with HLH, a rare condition in which the immune system malfuctions and attacks the body. Zoe’s variety of the disease is curable via Bone Marrow or Stem Cell transplantation to replace the malfunctioning immune system with a new one.
After several months of treatment to bring the disease under control under the standard HLH-2004 protocol of medications and procedures, Zoe was admitted to Duke University Hospital for a Stem Cell Transplant. After much deliberation we chose to use a Reduced Intensity Conditioning protocol for Zoe in an attempt to minimize her side effects, pain and suffering. Her transplant was successful with an initial graft reading of >98% donor material, the highest the test could measure, meaning her old immune system was nearly completely replaced with a new disease-free one.
Since her transplant Zoe has continued to be treated daily with a variety of medication, and has been isolated from potentially infectious situations such as crowded areas, public venues and sick persons. So far, she has done very well and continues to improve. We do not yet know what side effects or other problems may arise from her treatment, but we have not yet identified any so we remain optimistic that she will have little or none.
If you are a parent with a child who has been diagnosed seeking more information, it is our goal to help you by providing as much information as we can about our own experience with HLH. We are also willing to answer questions where possible via the contact page, but bear in mind that we are not doctors and can offer only our own research and experience, not treatment advice.
- The Links page offers articles that we found helpful in learning about HLH.
- The Glossary page offers terms used on this site that may be necessary to understand the treatment options and disease itself.
- The Archives page offers a list of all posts by title and by date; if you are seeking to find a specific point in time of treatment that’s a place to start.
Key Information Posts (in chronological order):
These posts offer information on what to expect during treatment and post-transplant, and information we learned that might be helpful.
- Dr. M’s 2nd Visit
- Contemplating the Bone Marrow Transplant
- A Talk with the Duke PBMT Unit
- The Road Map
- On Being an Advocate
- Taking our Medicine
- HLH, A Simple Description
- FHL, or Familial HLH
- A Visit to Duke Part 1
- Part 2: Questions for a Transplant Doctor
- The Work Up
- Reduced Intensity Conditioning
- More on RIC
- Day -22, Start of Pre-Conditioning
- Day 0, Transplant Day
- Day +10, The Worst of It (We Hope)
- Day +15, All About ANC
- Day +21, Engrafted
- Day +30, Chimerism
- Day +43, Home Sweet Home (Away from Home)
- Day +50, The Med Routine
- Day +100
- 6 Month Studies