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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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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: Photos
DAY +45
Sunday, June 26, 2011 – Not much going on, which is a good thing… Papa and the older boys went fishing again today.
DAY +44 One day at a time
Saturday, June 25, 2011, 10:50 AM Update from Kristy – So we will be headed in to get Liam’s NG tube put back in. He decided to yank it out. I just wish he didn’t have to go through it. … Continue reading
DAY +43 ANC 7360 WBC 8.37
Friday, June 24, 2011, 10:26 AM – Update from Kristy Day+43 we have appointments 2day. I hope everything is good. Thank u 4 all the love & support. We are so blessed 2 b surrounded by all of u 6/24/2011 … Continue reading
DAY +40 ANC 6320 WBC 7.35
Update from Kristy – June 21, 2011, 4:47 PM ANC 6320 (1500-5400 normal) WBC 7.35 (6.0-17.5 normal) Platelets 319 (250-600 normal) Hematocrit 29.0 (33.0-39.0 normal) So excited about his numbers today , this is so great. 🙂 You can … Continue reading
Liam’s Journey video/slideshow By: Nate & Heidi Kellar
Uploaded by nateheidikellar on Jun 15, 2011 Liam River Smith is a 9 month old baby who, at 4 weeks of age, was diagnosed with an extremely rare blood disease known as Hemophagocytic lymphohistiocytosis, or HLH. This video shows pictures … Continue reading
DAY +35 Big Day! Liam is leaving the Hospital – ANC 3735 WBC 5.0
Kristy’s Twitter Update – Thursday, June 16, 2011, 11:00 AM Day+35 ANC 3735 WBC 5.0 platelet 270 hematocrit 28.5 went up on it’s own they thought they were going 2 have 2 give transfusion b4 we left. ANC 3735 (06/15/11 … Continue reading
DAY +34 ANC 3041 WBC 4.2 – Liam’s first tooth
Update from Kristy – June 15, 2011, 10:34 AM ANC 3041 (06/14/11 ANC 2521) (1500-5400 normal) WBC 4.2 (06/14/11 WBC 4.4) (6.0-17.5 normal) Kristy has been busy all day in classes learning how to care for Liam at home/RMH. Yesterday … Continue reading
DAY +33 ANC 2521 WBC 4.4 Chimerism/Engraftment Results
Kristy’s Twitter Update – Liam got his first tooth today bottom right. I have met the most amazing people here. I feel so blessed 🙂 Tuesday, June 14, 2011, 9:48 AM His labs just got taken about 30 mins ago. … Continue reading
DAY +32 ANC 2761 WBC 5.2
Email Update from Kristy – Date: 6/13/2011 9:07:07 A.M. Will not know labs until later today they ran magnesium all night and want to check levels. He threw up NG tube and they have attempted to put it back in … Continue reading
DAY +31 Platelets 150
Update from Kristy – June 12, 2011, 12:19 PM Tacrolimus ~ not sure what the level is today. Platelets 150 (yesterday’s Platelet 111) (250-600 normal) They only tested for Platelets & Tacrolimus levels today. They will do a full lab … Continue reading
