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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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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: Histio Awareness – HLH, Hemophagocytic Lymphohistiocytosis
Rare Disease Day – Feb. 29th, 2012
Kristy updated her twitter status: 2day is Rare Disease Day My son & many others have fought so hard against Histio I hope some1 finds it n there heart 2 help bring awareness
HLH Awareness is so important
Kristy updated her Facebook status: HLH is now being diagnosed in young adults and older 🙂 awareness is so important. It’s not labeled as CANCER but treated with the same meds.
Thank you to everyone that went to New York to raise Histio Awareness
Kristina updated her FB status: “Thank you to everyone that went to New York to help raise awareness for Histio. It means so much to me! I hope next year I can join you all. I was wonder if anyone … Continue reading
Help Raise Histio Awareness – FEBRUARY 24-25, 2012
Please help raise Histio Awareness RARE DISEASE DAY PRESS RELEASE (PDF File) NEXT YEAR’S CAMPAIGN WILL BE HELD IN NYC FROM FEBRUARY 24-25, 2012. PLEASE CLICK ON THE LINK BELOW FOR DETAILS! https://www.facebook.com/#!/events/252239901479695/ http://www.liamslighthousefoundation.org/awareness_campaign.html Liam’s Lighthouse Foundation 3rd Annual Histiocytosis Awareness … Continue reading
Attention All HLH Families By: Kelly Marsh
http://www.carepages.com/carepages/HannahMarsh/updates/3227161 Posted 1 day ago I am writing this note as an urgent request to reach out to HLH families all over the globe. There are lots of newly diagnosed families with HLH that need our help in making the … Continue reading
I want HISTIO classed as a cancer!
Subject: Kristina updated her status on Facebook. Date: 1/14/2012 9:37:15 A.M. Pacific Standard Time “I want HISTIO classed as a cancer! I want it acknowledged that histio patients have the same awful treatments as those with cancer-chemo, steroids, surgery etc, … Continue reading
The Daily News – Liam’s Costume Fun Run
Costumed runners support Woodland boy with rare condition Read more: http://m.tdn.com/news/local/article_32dae78a-035e-11e1-a0b4-001cc4c03286.html?mode=story
Help Liam & Raise Awareness for HLH – Liam’s Costume Run – October 30, 2011 @ 10am
Message from Kristy: Even if you can’t do the run please spread the word. Awareness is what saves these children’s life’s. For more Info go to : http://liamsjourney.com/ Click this link to download entry form. http://liamsjourney.com/LiamsRunRegistrationForm.pdf “Liam’s Journey” Costume Run … Continue reading
“Liam’s Journey” Costume Run – October 30, 2011
Click on Link below to download PDF Registration Form: Liam’sRunRegistrationForm
Our Bone Marrow Transplant Journey begins…
We will try to keep everyone up to date on Liam’s Status. Next week we will meet with the Doctor’s in Seattle, at the Bone Marrow Clinic. Just waiting for the HLA typing to come back on all the boys.
