-
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 913
Woodland, WA 98674 Activate your Email Subscription
Click on the link above to start your Subscription. You will receive a verification message. FeedBurner activates your subscription to “Liam's HLH Journey” once you respond to this verification message.
You will need to click on the confirmation link in your email to "ACTIVATE" your subscription.
Thank you for following Liam's Journey
LiamsHLHJourney@gmail.com
YOU MUST REGISTER TO LEAVE A COMMENT
Due to the overwhelming amount of SPAM, you must register first to leave a comment. Sorry for any inconvenience this may cause.Meta
September 2010
This was taken 12 days before Liam was admitted to the Emergency Room.
November 2010
34 days after starting HLH-2004 Protocol, chemotherapy and steroid treatment.
May 2011
DAY +10
WBC <0.2 ANC (Absolute Neutrophil Count) 0 Platelets 13October 17, 2012
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.
Seattle Children’s Hospital
www.seattlechildrens.org
4800 Sand Point Way NE
Seattle, WA 98105
United States
PHONE: 206.987.2000Dr. 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 98109Main Entrance:
1354 Aloha St.
Seattle, WA 98109Parking Garage:
1335 Aloha St. (under the clinic)
Seattle, WA 98109Need help finding SCCA?
Call (206) 288-SCCA (7222) or
(800) 804-8824 .Histiocytosis Association
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
- 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
- 1st BMT – DAY +0 Transplant Day – Photos
- 1st BMT – Journal Updates to Day +50
- 1st BMT – Liam’s Chimerism Engraftment Results
- Bone Marrow Registry Info
- HLH Stories
- Links
- 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?
March 2026 M T W T F S S « Sep 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 Archives
- September 2015 (2)
- October 2013 (2)
- September 2013 (2)
- August 2013 (2)
- July 2013 (1)
- June 2013 (1)
- May 2013 (20)
- April 2013 (15)
- March 2013 (33)
- February 2013 (13)
- January 2013 (20)
- December 2012 (7)
- November 2012 (9)
- October 2012 (18)
- September 2012 (9)
- August 2012 (7)
- July 2012 (11)
- June 2012 (4)
- May 2012 (7)
- April 2012 (19)
- March 2012 (14)
- February 2012 (10)
- January 2012 (26)
- December 2011 (9)
- November 2011 (13)
- October 2011 (16)
- September 2011 (23)
- August 2011 (27)
- July 2011 (29)
- June 2011 (36)
- May 2011 (25)
- April 2011 (11)
- March 2011 (7)
- February 2011 (5)
- January 2011 (13)
- December 2010 (14)
- November 2010 (13)
- October 2010 (16)
Tag Archives: Familial Hemophagocytic Histiocytosis
Update from Mommy
They started Liam on Ursodiol in hopes of protecting his liver. Now we wait and watch for signs of GVHD. He will have weekly blood draws to watch his ANC because they think he will drop down and could go … Continue reading
10/12/12 – Update from Mommy
Appointment after appointment… I have nothing new to update just that Liam will get the pic line put in Tuesday. Please pray that the procedure goes smoothly.
UPDATE on Liam
Mommy’s update today on Liam So I got the call today. We will head to Seattle on the 9th and I was informed that we will be staying at least a month. It is a very long process. It starts … Continue reading
Hunter and Liam’s labs looked good : )
Hunter and Liam’s labs looked good. Liam’s liver is still a little elevated. Now we are waiting for the doctors to get the best plan for giving Liam a boost. I hope and pray he does not get GVHD. It … Continue reading
Liam’s Graft has dropped :(
Facebook post by Mommy: Liam’s were not what I was hoping for his graft dropped from 45% to 35% 🙁 So he will need the boost from Hunter. So this process will start quickly. End of this week or beginning … Continue reading
The Third Annual HLH Boot Camp – The Diagnosis and Management of HLH (Family Registration)
Saturday, September 22, 2012 from 8:30 AM to 5:00 PM (EDT) Cincinnati Children’s Hospital Medical Center 3333 Burnet Ave Cincinnati, OH 45229 The Diagnosis and Management of Hemophagocytic Lymphohistiocytosis (HLH) The Immune Deficiency and Histiocytosis Program at Cincinnati Children’s Hospital invites you to … Continue reading
DAY +439 – Call from Seattle
Post from Kristy 10:45 pm I could write this earlier because I just couldn’t stomach the thought of it. Seattle called Liam will be getting a bone marrow aspiration next week. They said that they are seeing deadly GVHD with … Continue reading
DAY +433
Post from Kristy: Liam’s graft is still dropping the drs are having a meeting today with the top drs in the U.S. and will let me know what happens next. This is not a good thing. Please keep our family … Continue reading
DAY+ 432 – 07/18/2012 – DNA Chimerism Analysis
DAY+ 432 – 07/18/2012 DNA Chimerism Analysis – Blood Derived & naive young T cells 47% (CD3+) T Cell 45% donor origin (55% host) (CD33+) Myeloid Cells 4% donor origin (96% host) (CD56+) NK Cells … Continue reading
Lab result… Please say a prayer
FB Post from: Kristina Just talked to Seattle and they will have the results tomorrow and will call me at the end of the day. Please pray for better results I don’t think I can handle bad news right now … Continue reading
