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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
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Thank you for following Liam's Journey
LiamsHLHJourney@gmail.com
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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.
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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
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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?
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Category Archives: Insprirational Quotes
Journeys of hope…
Subject: Kristina updated her status on Facebook. Date: 1/14/2012 9:45:33 A.M. Pacific Standard Time “HOPE We are all meant for these journeys of hope. Of tenderness of love. Of doing things we never thought we could do.This is where our … Continue reading
We have come so far…
Subject: Kristina updated her status on Facebook. Date: 1/22/2012 5:42:49 P.M. Pacific Standard Time “We have come so far, others say not enough. However, “Be not afraid of growing slowly, but be afraid of standing still.””
To Find Hope…
Subject: Kristina updated her status on Facebook. Date: 1/24/2012 1:04:38 A.M. Pacific Standard Time “When do you throw in the towel, admit that the lost cause is just that. It comes a point when it becomes too much, when we … Continue reading
There comes a point in life…
Kristina updated her FB status: “There comes a point in life when fun no longer means clubbing, drinking or being out ’till 4am, or thinking about yourself first! Fun means Disney movies, family dinners, bedtime stories, long cuddles, a messy … Continue reading
Lasting Friendships…
Kristy’s FB repost It’s been said that ever lasting friends go long periods of time without speaking and never question the friendship. These friends pick up like they just spoke yesterday, regardless of how long it has been or how … Continue reading
Time is our most precious gift…
Kristy’s Facebook post Time is our most precious gift… Everyday we are each given the same amount of time in a day. We each get 24 hours. Some people waste their time, and in some cases other people can be … Continue reading
DAY +37 Time to Breathe… A Day of Rest – Tooth #2
Saturday, June 18, 2011 – No appointments until Monday. Liam’s appointments went well yesterday, everything is going great. Liam’s tummy seems to be doing better, the Prednisone is doing it’s job to help with GvHD. Liam has been very active … Continue reading
DAY +30 ANC 1651 WBC 2.6
Update from Kristy – June 11, 2011, 10:00 AM ANC 1651 (yesterday’s ANC 2176) (1500-5400 normal) WBC 2.6 (yesterday’s WBC 3.9) (6.0-17.5 normal) Platelets 111 (yesterday’s Platelet 89) (250-600 normal) Hematocrit 29.6 (yesterday’s Hematocrit 29.4) (33.0-39.0 normal) The Doctor is … Continue reading
DAY +29 ANC 2176 WBC 3.9 – Nine months old
Update from Aunt Tami – Friday, June 10, 2011, 8:16 AM ANC 2176 (yesterday’s ANC 934) (1500-5400 normal) WBC 3.9 (yesterday’s WBC 2.9) (6.0-17.5 normal) Platelets 89 (yesterday’s Platelet 84) (250-600 normal) Hematocrit 29.4 (yesterday’s Hematocrit 31.1) (33.0-39.0 normal) This … Continue reading
DAY +27 ANC 2037 WBC 3.8
Update from Kristy via FB – June 8, 2011, 5:28 PM – Day+27 ANC 2037 WBC 3.8 he will get the scope done tomorrow he threw up had some diarrhea and got a rash again so they want to check … Continue reading
