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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: Liam’s BMT updates
DAY +13 ANC 0
This has been a very hard day, filled will extreme frustration and disbelief frus·tra·tion 1. dissatisfaction: a feeling of disappointment, exasperation, or weariness caused by goals being thwarted or desires unsatisfied 2. frustrating of somebody or something: an act or … Continue reading
DAY +12 ANC 0 WBC <0.2
Kristy’s Twitter Update: Tuesday, May 24, 2011, 3:04 PM Day+12 Liam was up at 4:30am threw up and was in pain. Fevers r gone still no ANC or WBC. They expect it at day+14-20 so we r hoping soon
DAY +11
Kristy’s Twitter Update – Monday, May 23, 2011, 11:59 AM WBC <0.2 ANC (Absolute Neutrophil Count) 0 Platelets 49 I am finding out why so many people say u have 2 b your child’s advocate. I feel like it … Continue reading
DAY +10
Sunday, May 22, 2011, 10:35 AM Phone update from Kristy this morning. A bit of a low moment this morning. Liam is still in alot of pain, it is so hard to hear the sad painful cries thru the phone. His … Continue reading
DAY +9 A Glimmer of Hope – ANC 42
Kristy Twitter Update – Saturday, May 21, 2011, 1:02 PM “My son is starting to graph, my son is starting to graph” I just needed 2 say it again I am bursting with joy and excitement. about 5 minutes ago … Continue reading
DAY +8
Kristy’s Twitter Update – Friday, May 20, 2011, 1:44 PM Day+8 Liam’s ANC 0, platelet and red blood r getting low again. He will need to get both in a couple days. He will get Intravenous immunoglobulin (IVIG) tomorrow. Liam … Continue reading
DAY +7
Kristy’s Twitter Update: Thursday, May 19, 2011, 9:17 PM Day+7 Liam threw up again. He still is needing to up his pain meds. ANC 0 but his liver counts look better:) Dr thinks he won’t get worse 🙂
DAY +6
Kristy’s Twitter Update – Wednesday, May 18, 2011, 10:10 AM Liams WBC count is still <0.2. platelet count 17 so they will be giving him platelets today. ANC still 0. Day +6 he will get methotrexate 🙁 about 3 hours … Continue reading
DAY +5
Kristy said that Liam got sick several times this morning. I haven’t gotten a full update on Liam so I will post more when Kristy give me more info. It is so hard not being with him. They moved them … Continue reading
DAY +4
DAY +4 – Liam has mucositis this is causing him alot of pain this morning. They had to increase in morphine 3x this morning. Kristy said he is feeling better this afternoon. His ANC was at 0 yesterday. Now we … Continue reading
