Liam's HLH Journey
HLH – Hemophagocytic Lymphohistiocytosis, is a rare disorder of the immune system
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  • 1st BMT – DAY +0 Transplant Day – Photos
    • 05/12/11 Day of Prayer for Liam & his Family
    • 06/2011 – Liams Story – Lewis River Review by: Grandma Terri
    • DAY +150 One Year ago… Reflections, looking back… By Nana
  • 1st BMT – Journal Updates to Day +50
    • 1st BMT – Journal Updates DAY +51 – DAY +100
    • 1st BMT – Journal Updates DAY +101 – DAY +150
    • 1st BMT – Journal Updates DAY +151 – DAY +200
    • 1st BMT – Journal Updates DAY +201 – DAY +250
    • 1st BMT – Journal Updates DAY +251 – DAY +300
    • 1st BMT – Journal Updates DAY +301 – DAY +350
  • 1st BMT – Liam’s Chimerism Engraftment Results
    • Post-Bone Marrow Transplant Patient Management
    • Protocol 2256 – Liam’s conditioning for BMT
  • Bone Marrow Registry Info
  • Fundraising for Liam
  • HLH Stories
  • Kristy’s Twitter Updates
    • 08/14/2011 New Anxiety… Going Home…
    • 09/06/2011 If God could take this all away… by Kristy
    • 09/25/2011 I’am truly blessed… by Kristy
    • 10/10/2011 Liam’s diagnosis, One year later… by Kristy
  • Links
    • Pre-eclampsia – Mirror syndrome – Triple oedema – Ballantyne syndrome
    • Seattle Children’s Hospital performs Kelly Clarkson’s song “Stronger”
  • What is HLH or FHLH?
    • Alexandra H. Filipovich, MD – special interest in histiocytic disorders, especially Hemophagocytic Lymphohistiocytosis (HLH)
    • Applying for Social Security Benefits for histiocytosis.
    • Diagnostic criteria for hemophagocytic lymphohistocytosis (HLH)
    • Diaper Rash Care & Home Remedies
    • What are the symptoms of adrenal insufficiency?

Daily Archives: May 24, 2013

Liam is my HERO…

Posted on May 24, 2013 by Nana
Posted in Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Insprirational Quotes | Tagged child rare disease, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, HLH, Super Hero | Comments Off

2nd BMT – DAY +79 Mommy’s Superman

Posted on May 24, 2013 by Nana

My Superman! Love him more then words can express… Liam was released from the hospital on Wednesday (5/22). He was waiting patiently by the door to go. It was a bitter sweet moment. Excited that he is doing well enough … Continue reading →

Posted in Bone Marrow Transplant, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's 2nd BMT updates, Photos | Tagged Bone Marrow Transplant, Chimerism/Engraftment, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, HLH, Seattle Children's Hospital, Super Hero | Comments Off
  • Liam's HLH Journey Facebook Page
  • The family and friends of our little warrior, Liam Smith are uniting to raise support in helping him and his family as they fight to overcome Liam’s rare, but life threatening disease. We hope you will join us.

    By Mail to:
    Liam R. Smith
    P.O. Box 1183
    Woodland, WA 98674

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  • September 2010

    2012-09-26a Liam_01

    This was taken 12 days before Liam was admitted to the Emergency Room.

  • November 2010

    20101114_22284a_KS_01a_01

    34 days after starting HLH-2004 Protocol, chemotherapy and steroid treatment.

  • May 2011

    2011_05_22 Liam

    DAY +10
    WBC <0.2
    ANC (Absolute Neutrophil Count) 0
    Platelets 13

  • October 17, 2012

    2012-10-17b Liam

    Today, I was admitted to the hospital to start the preparation to receive donor cells from my big brother Hunter. Please keep us both in your prayers.

  • TOTAL PAGE VIEWS

    Thank you for visiting Liam's blog.
  • 423698_3648903463413_1429425057_n
  • Seattle Children’s Hospital

    www.seattlechildrens.org
    4800 Sand Point Way NE
    Seattle, WA 98105
    United States
    PHONE: 206.987.2000

  • Dr. Jean Sanders and Liam

    Dr. Jean Sanders and Liam

    Dr. Jean Sanders built the pediatric transplant program at Fred Hutchinson Cancer Research Center and provided exemplary medical care and compassion for thousands of patients and their families. During her career she trained more than 90 specialists in her field and authored over 300 scientific publications. She also chaired multiple cooperative research group studies and served as advisor for many medical and scientific organizations including the Children's Oncology Group, the National Childhood Cancer Foundation, the American Academy of Pediatrics and National Institutes of Health.

    Click on the photo to read about Dr. Jean Sanders. You will be redirected to http://questmagazine.wordpress.com/2012/06/11/pediatric-transplant-pioneer-jean-sanders-built-the-hutchinson-centers-and-the-nations-pediatric-transplant-program/

  • Seattle Cancer Care Alliance

    www.seattlecca.org

    Mailing Address:
    825 Eastlake Avenue E.
    Seattle, WA 98109

    Main Entrance:
    1354 Aloha St.
    Seattle, WA 98109

    Parking Garage:
    1335 Aloha St. (under the clinic)
    Seattle, WA 98109

    Need help finding SCCA?
    Call (206) 288-SCCA (7222) or
    (800) 804-8824 .

  • Histiocytosis Association

    229453_4804040423105_829895480_n

    Source: www.histio.org
    We are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

  • Childhood Cancer Awareness

    • ROCKSTAR RONAN Ronan Thompson
    • The Ronan Thompson Foundation
  • HLH Resources

    • Alexandra H. Filipovich, MD – HLH Specialist contact info Dr. Filipovich has a special interest in histiocytic disorders, especially Hemophagocytic Lymphohistiocytosis (HLH).
    • Be A Match, Save a Life! http://www.marrow.org/
    • Hemophagocytic Syndromes and Infection by: David N. Fisman http://wwwnc.cdc.gov/eid/article/6/6/pdfs/00-0608.pdf
    • Histiocytosis Association – Facebook Group http://www.facebook.com/groups/2251122469/
    • HLH Family (Survivors & Angels) Facebook Group http://www.facebook.com/groups/HLHSurvivors/
    • HLH-2004 Protocol PDF/Adobe Acrobat Treatment for HLH – Hemophagocytic Lymphohistiocytosis, is a rare disorder of the immune system
    • Liam Smith's HLH Journey – Home Page www.liamsjourney.com
    • Liam's Lighthouse Foundation – Liam Schulze Story http://www.liamslighthousefoundation.org/
    • The Core of Diagnosis-Cincinnati Children's Hospital Lab and testing
    • What is familial hemophagocytic lymphohistiocytosis? http://ghr.nlm.nih.gov/condition/familial-hemophagocytic-lymphohistiocytosis
  • Recent Posts

    • The Birthday Boy…
    • September is Histio Awareness
    • DAY +231 ~ LIAM’S CHIMERISM TEST RESULTS 2nd BMT
    • DAY +218 – Three years ago today…
    • DAY +195 Clinic Appointment
    • The Birthday Boy…
    • LIAM’S CHIMERISM TEST RESULTS 2nd BMT – DAY +28, +42, +84, +114, +127, +156
    • 2nd BMT – DAY +153 update – 5 months post Transplant
    • 2nd BMT – DAY +132 ~ Liam is doing good.
    • 2nd BMT – DAY +110 – Coming Home :)
    • 2nd BMT – DAY +84
    • 2nd BMT – DAY +82
    • Liam learning to ride his bicycle (Video Link)
    • Spit for a Cure: New Study to Define the Role of Inheritance in Histiocytic Diseases
    • Liam is my HERO…
    • 2nd BMT – DAY +79 Mommy’s Superman
    • Mommy’s beautiful baby boy
    • 2nd BMT – DAY +70
    • 2nd BMT – DAY +67
    • 2nd BMT – DAY +66
  • Recent Comments

    • Nana on My Hero… FB post by Mommy
    • Ann on From a friends page..
    • Auntie Deb on DAY+ 606
    • Diane Balch on DAY +603
    • Ann on DAY +600 UPDATE
    • Nada Collins on Still no real answers…
    • Debra Tsugawa on Liam is going to receive Hunters cells today, please pray… updates from mommy
    • Nana on Today you can tell Liam is not feeling a 100% :(
    • Ann on Today you can tell Liam is not feeling a 100% :(
    • Ann on Picc Line placement today : (
  • Pages

    • 1st BMT – DAY +0 Transplant Day – Photos
      • 05/12/11 Day of Prayer for Liam & his Family
      • 06/2011 – Liams Story – Lewis River Review by: Grandma Terri
      • DAY +150 One Year ago… Reflections, looking back… By Nana
    • 1st BMT – Journal Updates to Day +50
      • 1st BMT – Journal Updates DAY +51 – DAY +100
      • 1st BMT – Journal Updates DAY +101 – DAY +150
      • 1st BMT – Journal Updates DAY +151 – DAY +200
      • 1st BMT – Journal Updates DAY +201 – DAY +250
      • 1st BMT – Journal Updates DAY +251 – DAY +300
      • 1st BMT – Journal Updates DAY +301 – DAY +350
    • 1st BMT – Liam’s Chimerism Engraftment Results
      • Post-Bone Marrow Transplant Patient Management
      • Protocol 2256 – Liam’s conditioning for BMT
    • Bone Marrow Registry Info
    • Fundraising for Liam
    • HLH Stories
    • Kristy’s Twitter Updates
      • 08/14/2011 New Anxiety… Going Home…
      • 09/06/2011 If God could take this all away… by Kristy
      • 09/25/2011 I’am truly blessed… by Kristy
      • 10/10/2011 Liam’s diagnosis, One year later… by Kristy
    • Links
      • Pre-eclampsia – Mirror syndrome – Triple oedema – Ballantyne syndrome
      • Seattle Children’s Hospital performs Kelly Clarkson’s song “Stronger”
    • What is HLH or FHLH?
      • Alexandra H. Filipovich, MD – special interest in histiocytic disorders, especially Hemophagocytic Lymphohistiocytosis (HLH)
      • Applying for Social Security Benefits for histiocytosis.
      • Diagnostic criteria for hemophagocytic lymphohistocytosis (HLH)
      • Diaper Rash Care & Home Remedies
      • What are the symptoms of adrenal insufficiency?
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  • PAGE QUICK LINKS

    • 05/12/11 Day of Prayer for Liam & his Family
    • Photos
    • Liam’s BMT updates
    • Fundraising for Liam
    • Links
    • What is HLH or FHLH?
    • 1st BMT – Journal Updates to Day +50
    • 1st BMT – Journal Updates DAY +51 – DAY +100
    • 1st BMT – Journal Updates DAY +101 – DAY +150
    • 1st BMT – Journal Updates DAY +151 – DAY +200
    • 1st BMT – Journal Updates DAY +201 – DAY +250
    • 1st BMT – Journal Updates DAY +251 – DAY +300
    • 1st BMT – Journal Updates DAY +301 – DAY +350
    • Doctors Appointments
    • Kristy’s Twitter Updates
    • HLH Stories
    • Alexandra H. Filipovich, MD – special interest in histiocytic disorders, especially Hemophagocytic Lymphohistiocytosis (HLH)
    • Histio Awareness – HLH, Hemophagocytic Lymphohistiocytosis
    • Hemophagocytic lymphohistiocytosis (HLH)
    • Bone Marrow Registry Info
    • Applying for Social Security Benefits for histiocytosis.
    • ROCKSTAR RONAN
    • Insprirational Quotes
    • Inspirational Songs
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