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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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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: Doctors Appointments
DAY +301/64 Clinic Appointment today
Update from Mommy: Liam’s CBC labs came back in the normal range! Thank you for the prayers. We discussed his hydro ween and they realized that he needs his adrenal function tested so we go see endocrine on march 14 … Continue reading
DAY +273 Clinic Appointment
Kristy’s Update – Feb. 9, 2012 Liam weighed 22lb 11.3oz, 30.4 inches all labs were in the normal range 🙂 he will b off immune suppressant Feb. 16 & starting hydro ween!
DAY +243 Clinic Apt. today
Kristina updated her status: Monday, January 9, 2012 Can’t sleep don’t know if it is cause Liam will get poked tomorrow or because they are testing his graft? I pray all is well HLH sucks!! Kristina updated her status: Tuesday, … Continue reading
DAY +238 Hickman Line removed today
Kristy’s updated her FB status: 1/5/2012 3:25:30 P.M. Pacific Standard Time “We are on our way home! Liam is doing good. I’m very excited to see him with no line he’s had something hanging out of him since he was … Continue reading
DAY +237 The Hickman has a crack in the line
Update from Kristy – 3 January 2012 So I went 2 flush Liam’s line & it squirted saline on my hand. He has a crack n his line & I’m panicked we go n 2morrow pray 4 no infection … Continue reading
DAY +160 Clinic appointment today
Liams apt went very good 2day he’s 20.03lbs. His quick labs all came back in the normal range 🙂 He is now down 2 once every 2 weeks for apts.
DAY +139
Kristy’s Twitter Update – September 28, 2011 The apt went good. They just kept saying you’d never know Liam has had a BMT. They were very impressed. Now we just wait 4 the results. Liam learned how to sign all … Continue reading
DAY +138 Follow-up Appt. in Seattle/SCCA
Kristy’s Twitter Update: September 27, 2011 We are on our way to Seattle please keep us in your prayers for only positive results. We are in Seattle. It’s nice weather. Wishing we could hit the Mt biking trails.
DAY +134 Liam took 3 Steps
Kristy’s Twitter Update: September 23, 2011 Liam just toke three steps and instead of videoing it. I watched in amazement everything he does is a miracle to me. Liam was 19lbs 1oz he is still off NG feeds & will … Continue reading
DAY +131
Kristy’s Twitter Updates: Liam was 18lbs 12.9oz 2day we will continue 2 c how he does without the NG 🙂 his tacro level is leveling out so we might get 2 go 2 1xweek
