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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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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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Tag Archives: Hemophagocytic Lymphohistiocytosis
DAY -7 ~ Surgery today, please pray…
we arrived at Children’s Hospital this morning, but we were bumped and are now waiting to find out when he will have his surgery. Please say a prayer for the new born baby who is in emergency surgery right now. … Continue reading
DAY -8 ~ Last Clinic Appt before BMT #2
It was a really emotional day for me, just knowing the road ahead for Liam. It was hard to keeps the tear under control, knowing you have to make him sick to make him better. Liam will get his pic … Continue reading
“Liam’s Journey” Benefit Concert Featuring Mycle Wastman & Friends
“Liam’s Journey” Benefit Concert Featuring Mycle Wastman & Friends http://www.brownpapertickets.com/event/337768 An Intimate Evening of Soulful Sounds with Performances By Mycle Wastman (Season 3 The Voice), Caety Sagoian and Taryn Cross Saturday, March 9, 2013 Northwood Hall Event Center 3240 Northwest … Continue reading
BMT # 2 – The Journey ahead…
Yesterday was IVIG and it turned out being a 6 hour day. Liam also had a pic dressing change along with labs and meeting with the team. Liam will get his Hickman placed on the 27th and will be admitted. … Continue reading
Prayers going out to the family of HLH Angel Micheal Leneski age 42, father of 5
Source: http://manpowerillini.blogspot.com/2013/02/micheal-leneski-great-father-good-friend.html FRIDAY, FEBRUARY 15, 2013 Micheal Leneski – Devoted husband, loving father, a great friend We just lost a good friend today, Micheal Lenski. I met him on August 15, 1989, when we joined the army. We got to … Continue reading
Heavy Hearts… 2 HLH children have earned their wings :(
Please pray for their family’s. Feb. 5, 2013 – Angel: Alex Hilton. 3 years old. http://www.savemyalex.com/index.html Feb. 12, 2013 – Angel: Lacey Horwitch, https://www.facebook.com/laceyhorwitch
Liam at his pre bone marrow transplant evaluation
BMT #2 – Liam will receive the same conditioning that he received for his 1st transplant, plus they will be adding Anti-thymocyte globulin (ATG) for 3 days. They said this has been added to help increase his engraftment. His 2nd Bone Marrrow Transplant is … Continue reading
Noa’s Donor work up
Noa’s appointments went well. I am so proud of his courage and selfishness. I should get the results of his tests in a few days. It was strange to go to an appointment without Liam, but it was good to … Continue reading
CLINIC APPOINTMENT
Update from Mommy: Liams appointments went good. He had nutrition, team, pic dressing change, and lab draw. I also learned Noa will need to be here the 11th, to start his donor work up. Liam will have a bone marrow … Continue reading
This is one of Noa’s favorite song for Liam – Skillet “HERO”
This is Noa’s favorite song for Liam ♥ This song really tells the story of Liam’s Journey. His brothers are his HERO’s 🙂 Listen to the lyrics. http://youtu.be/uGcsIdGOuZY
