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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: Uncategorized
Happy Easter
Kristina updated her FB status: “Today was perfect! The boys enjoyed the sunshine, hunted eggs, and ate home made pizza and coffee cake! Not a traditional Easter dinner but it didn’t matter. My Mom and Dad came up and ate. … Continue reading
DAY +315/50 – I am so thankful we are in isolation!
Kristina Bunker-Smith updated her status: March 22, 2012 “I am so thankful we are in isolation! It seems like everyone on Facebook is sick or is getting over being sick. I hope we don’t get it. I hope everyone feels … Continue reading
8 years ago today I was hit by a drunk driver head on
Kristina updated her status: “8 years ago today I was hit by a drunk driver head on. I was taken to the hospital were they stitched me back up dug the glass out of my face and mouth and sent … Continue reading
Fundraiser Raffle for Miabelle and her Family
Olivier Gillier posted in Miabelle must get well! Olivier Gillier 6:50pm Mar 2 Fundraiser raffle!!! miabelle and noelie: Fundraiser Raffle: You can win and help, even if you cannot attend the event miabellegillier.blogspot.com
A medicine to treat childhood leukemia is in such short supply
‘Crisis’: Supplies of life-saving drug used to treat children could run out in 2 weeks www.msnbc.msn.com A medicine to treat childhood leukemia is in such short supply that hospitals may exhaust their stores within 2 weeks, leaving children at risk … Continue reading
The Selflessness of a Nurse…
Kristina updated her Facebook status: 2/3/2012 12:12:04 A.M. Pacific Standard Time “Nurses are being scorned for being late with medicines by one minute sometimes, yet they are holding their bladder because they don’t have time to use the restroom, starving … Continue reading
Another Day
When I write in my blog I write my try emotions in hopes that other family’s who have a child with a life threatening illness will see there not alone in there thoughts. I haven’t posted in here for a … Continue reading
“the best response to “-at least it’s not cancer”
Subject: Kristina updated her status Date: 1/31/2012 11:49:02 P.M. Pacific Standard Time “the best response to “-at least it’s not cancer”. -Yes, you’re right! Thank God! It’s just Histiocytosis, also known as the “You’ve got cancer in your autoimmune system”-disease, … Continue reading
Posted on Facebook Group: HLH Family (Survivors & Angels)
Posted by: Kelly Claudine Marsh HLH Family (Survivors & Angels) Shared with Public I am posting this as a general statement, because I am sick to my stomach hearing what doctors are doing in hospitals that don’t have enough experience with … Continue reading
Isolation – Trying to keeping Liam Safe
Kristy posted a comment in HLH Survivors on Facebook: https://www.facebook.com/#!/groups/HLHSurvivors/ As Liam gets closer to 1 year post BMT there are a lot of emotions going through me. I’m wondering if you kept your child in isolation after 1 year … Continue reading
