Links

HLH – Links & Resources

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HLH Support Group on Facebook and on the Web

If you have a family member that has Hemophagocytic Lymphohistiocytosis (HLH) and are looking to connect with other HLH families and survivors, or families who have lost their loved ones to this dreadful disease, then you have come to the right place. Please make sure your privacy settings are set for us to be able to message you on FB. We will send out an email/ private message to you on FB and you will need to respond before we can approve your request.

There are many that have traveled down this road with you and are here for support.

You are not alone!

Group created on October 11, 2010 by: Kelly Marsh
Group Moderator and Parent of an HLH Survivor

HLH Survivors & Angels

Email - HLHSurvivors@groups.facebook.com

 

HLH SUPPORT WEBSITE

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http://www.bonemarrow.org/resources/financial_assistance.html

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Liam’s Journey .com
Home page
Our Story
Photo Gallery
Fundraising for Liam
Children with HLH
Bone Marrow Info

I created a group on Facebook, October 31,2010 so you can easily follow on facebook too.
Liam’s Facebook Group
Liam’s Journey – HLH Warrior

This is another blog set up for Liam to hopefully reach
more people, to help raise awareness about HLH
Liam’s WordPress.com Blog: http://liamshlhjourney.wordpress.com/

 

Liam has two Caring Bridge pages

CaringBridge / Liam Smith HLH Warrior / Welcome – Kristy’s Page
http://www.caringbridge.org/visit/liamsmithhlhwarrior?ref=nl

CaringBridge / Liam River Smith / Resources – Grandma Terri’s Page http://www.caringbridge.org/visit/liamriversmith/resources

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For Daily Inspiration you can listen live to 104.1 The Fish
Music that is safe for the whole family
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Published on Jul 20, 2012 by 

Dr. Barrett Rollins provides information and insight on recent research findings about Langerhans cell histiocytosis.

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Alexandra H. Filipovich, MD

Phone: 513-636-7287 or 513-636-4266

Fax: 513-636-3549

Email: lisa.filipovich@cchmc.org

Bio

Dr. Filipovich began her career at the University of Minnesota where she received her medical degree in 1974 and completed fellowships in both immunopathology and pediatric immunology. She became a professor of pediatrics and served for ten years as the head of the Division of Immunology at the University of Minnesota Medical School. Dr. Filipovich came to Cincinnati Children’s Hospital Medical Center in 1996. She is currently the Ralph J. Stolle Chair in Clinical Immunology and the director of the Immune Deficiency and Histiocytosis program. She also serves as the medical director of the Diagnostic Immunology Laboratory at Cincinnati Children’s.

Dr. Filipovich has a special interest in histiocytic disorders, especially Hemophagocytic Lymphohistiocytosis (HLH). Other interests include bone marrow transplant for primary immune deficiencies and post-BMT immune reconstitution. She serves as president of the Histiocyte Society, an international group of more than 200 physicians and scientists who are committed to improving the lives of patients with histiocytosis through research.

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BMT/SCT Club Checklist

List of recommended items to bring with you during your bone marrow or stem cell transplant hospital stay and other suggestions

http://www.bmtsctclub.com/resources/bmtsct-club-checklist/

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The Donor Selection & Transplant Process
www.marrow.org
If your doctor recommends a bone marrow or cord blood transplant (also called a BMT), learning about the donor selection and transplant process can help you make informed choices about your health care.

Receiving Your New Cells – Transplant day
www.marrow.org
When you have a bone marrow or cord blood transplant (also called a BMT), the day you receive your donated cells is often called “Day Zero.” Patients have different feelings about this day. For some patients, it is a scary time. For others, it is a time of celebration.

Waiting for Engraftment: Days 0-30
www.marrow.org
After your bone marrow or cord blood transplant (also called a BMT), you will have low blood counts. This means that you have fewer than normal numbers of red blood cells, white blood cells and platelets. Over time, the donated cells you received for your transplant start to grow and make new blood cells. This is called engraftment.
Engraftment is an important milestone in your transplant recovery. For information about how doctors check your blood for signs of engraftment, see Measuring Engraftment.

Early Recovery: Days 30-100
www.marrow.org
After you receive a bone marrow or cord blood transplant (also called a BMT), your doctors will watch your health carefully. Especially during the first 100 days after your transplant, you are at risk for complications. You and your transplant team can take steps to prevent some of these problems. Your doctor will work quickly to treat complications that do occur.

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The mission of the National Bone Marrow Transplant Link is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services. https://nbmtlink.readyhosting.com/index.htm

Part ll – Meeting the Challenges of Chronic Graft Verse Host Disease in children & Adults.

cGVHD Webcast by: Lynn Hardestly

http://www.presentme.com/audio2009/20090901NBMTPart2/?utm_source=April+2012+Ennouncement&utm_campaign=Ennouncements&utm_medium=email

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Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation Info

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Zoe – HLH Journal
http://hlh.evanz.org/2010/03/diagnosis/
http://hlh.evanz.org
http://hlh.evanz.org/archives/
Great site, with a wealth of information on one family’s journey with HLH. It is one of the best sites that we have come across. Evan has documented his family journey with HLH (Pre BMT – Post BMT) in great detail. I have read his blogs several times. His blog has been very helpful to our family.

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My Tiny Hands – Shopping/Product Information
mytinyhands.com
Our “Please Wash” signs can hang from almost any stroller, car seat or baby carrier with the attachment ring. The bright color, stop sign shape, and large text make it almost impossible for anyone to miss, and looks great!

Signs are 3.5″ X 3.5″ in size, washable, weather proof, and made of a durable silicone rubber material. Signs are now available in blue, pink, and red, and comes with an attachment ring. (Red and blue signs come with a white ring, and pink signs come with a black ring) Spanish signs are now available in red only. Order yours now!

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Image Gently: A letter to parents and caregivers of children with cancer about medical imaging tests
Source http://curechildhoodcancer.ning.com/forum/topics/image-gently-a-letter-to
We urge you to visit the www.imagegently.org website. This can give you as parents more information as to an estimate as to how much radiation your child may receive from different tests.

As a parent or family member you may want to ask your doctor or the radiologist if the imaging for your child is being done at the lowest possible dose that is needed to care for your child. There are also ways for equipment to be accredited and demonstrated as using radiation doses that are “child-sized”.

I hope this brief letter has provided you with a little bit more information about this complex topic. Radiation safety is not the only thing to think about when your doctor requests a CT scan for your child’s condition. It is but one of many things to think about when trying to make treatment decisions for a life threatening illness such as cancer. This note is to let you know that there are many medical professionals and researchers as well at the equipment manufacturing companies who are working on this problem together.

Thank you for the opportunity for our group to speak with you all about this.
Sincerely,
Marilyn J. Goske, MD
On behalf of the Alliance of Radiation Safety in Pediatric Imaging
Professor of Radiology
Corning Benton Endowed Chair for Radiology Education
Cincinnati Children’s Hospital Medical Center

Image Gently
Basic Information
Founded Launched January 2008
About One size does not fit all…….
Company Overview The Image Gently Campaign is the message from the Alliance for Radiation Safety in Pediatric Imaging. As of January 2010, 60 organizations have joined the Alliance.
Mission The Campaign goal is to change practice by increasing awareness of the opportunties to lower radiation dose in the imaging of children.
Products Informational materials targeted to parents, technologists and physicians.
Website http://www.imagegently.org
https://www.facebook.com/pages/Image-Gently/146714032030578?sk=info

http://www.pedrad.org/associations/5364/ig/

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One Response to Links

  1. Hello Liam and family! I am glad to have found you! My daughter, Megan was diagnosed with HLH at 4 months, started chemo and had a BMt at 7 months. She is now 6 weeks from being 5 years out!!!!
    I know the journey is hard and the road is not easy but we are here. The Histio community is an amazing one. Our transplant doctor called us a cult when I told him I knew of a new patient moved in from California. We have to be…we are so few, so little unknown about the disease.
    I’ll keep in touch. You can also face book me and there is an awesome HLH/survivor page on Facebook. Many families chat on it frequently!
    Stay strong! Contact me for anything!!!!!
    Love, prayers, and smiles!
    Margaret, Don, Michelle, Megan
    PS_ Our match was our oldest daughter, perfect match on all markers. Praying you have the same fortune we did!!

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