-
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?
April 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 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)
Little Liam
Posted in Hemophagocytic lymphohistiocytosis (HLH), HLH, Photos
Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on Little Liam
My Big Brothers watching over me…
Posted in Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH
Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on My Big Brothers watching over me…
Back from Liam’s 6th treatment
Post by Mommy
Liam is so strong and brave. Everything seems to be going good. One day at a time. I tell myself that all day long.
Posted in Hemophagocytic lymphohistiocytosis (HLH)
Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on Back from Liam’s 6th treatment
Mommy getting all his love
Posted in Hemophagocytic lymphohistiocytosis (HLH), Photos
Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on Mommy getting all his love
Created a Facebook group for Liam’s Updates
You can follow Liam’s Journey on facebook too. http://www.facebook.com/groups/111140805616208/
Posted in Uncategorized
Comments Off on Created a Facebook group for Liam’s Updates
Big Smiles for Nana
Posted in Hemophagocytic lymphohistiocytosis (HLH), HLH, Photos
Tagged child rare disease, Familial Hemophagocytic Lymphocytosis, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on Big Smiles for Nana
10/26/2010 update
Liam decided he didn’t need him N.G. (feeding tube). So at about 3 AM, when everyone was sleeping he pulled it out. He must of been glad it was gone because Liam had a good day. He is eating like a little warrior.
Posted in Uncategorized
Comments Off on 10/26/2010 update
10/25/2010 update
Liam had an appt at the Clinic today. It was for his 5th dose of Chemo. It really tuckers him out, our sweet, brave little Warrior. They said all his labs looked good. Thank you God!!!
Posted in Hemophagocytic lymphohistiocytosis (HLH), HLH
Tagged child rare disease, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on 10/25/2010 update
Made a trip to the ER
Made a trip to the ER. His little digestive system was very active, we were very concerned. Affraid he would get dehydrated. They doctors check him out from head to toe, checked labs. Everything was good, so the little man came home. But all of us were on edge thru the night. He slept that night for 5 hrs.
Posted in Hemophagocytic lymphohistiocytosis (HLH), HLH
Tagged child rare disease, Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on Made a trip to the ER
The first night from the hospital was a success!
Not sure if any of us got any sleep. He thought it would be nice to have a couple of hours in the early AM with mommy playing. So mommy didn’t get much sleep, but she enjoyed every minute. I made a chart to keep track of input and output, feedings, and temp. Just want to do the best to make sure he is getting everything he needs. He is so amazing, and strong. His Dr. from ICU came by to see him before he left, he and all of the people who cared for him were God sent.
Posted in Hemophagocytic lymphohistiocytosis (HLH), HLH
Tagged Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH, HLH
Comments Off on The first night from the hospital was a success!
