Liam's HLH Journey | HLH – Hemophagocytic Lymphohistiocytosis, is a rare disorder of the immune system

Please keep Jaelynn and her Mommy in your prayers…

Posted on July 12, 2012 by Nana

Jaelynn’s Journey

Jaelynn and her Mommy

Jaelynn & her mommy needs lots a prayers.

In August 2011, Jaelynn was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). She recieved her Bone Marrow Transplant in Dec. 2011. It has been very hard on her she developed Graft–versus–host disease (GVHD). Just recently she came down with Post-transplant lymphoproliferative disorder (PTLD), and had to start chemo again. She is only 4 years old. Please Pray for her and her family. Pray that the treatments will help her.

http://www.savejaelynn.com/

This is a song her my posted today:

Faith…

Posted on July 10, 2012 by Nana

Post from Kristy

Posted in Insprirational Quotes | Comments Off

06/19/12 – BMT Chimerism Engraftment Results

Posted on June 25, 2012 by Nana

DAY+ 403 – 06/19/2012        DNA Chimerism Analysis – Blood
Derived & naive young  T cells 52%
(CD3+) T Cell                       47% donor origin (53% host)
(CD33+) Myeloid Cells           2% donor origin (98% host)
(CD56+) NK Cells 10% donor origin (90% host)
(CD19+) B Cells                       2% donor origin (98% host)

DAY+ 367 – 05/14/2012 DNA Chimerism Analysis – Blood
Derived & naive young T cells 53%
(CD3+) T Cell 50% donor origin (50% host)
(CD33+) Myeloid Cells 4% donor origin (96% host)
(CD56+) NK Cells 14% donor origin (86% host)
(CD19+) B Cells 5% donor origin (95% host)

Posted in Doctors Appointments, Liam's BMT updates | Tagged Chimerism/Engraftment, Familial Hemophagocytic Lymphocytosis, Hemophagocytic lymphohistiocytosis (HLH), HLH | Comments Off

06/19/12 – Clinic Appointment

Posted on June 22, 2012 by Nana

Liam had his monthly check on Tuesday the 19th. He had a regular check up, labs, weight, height, nutrition, pharmacy, doctor. Weight 24 lbs, height 32.1 inches. He is still gaining in both areas 🙂 They did his Chimerism Analysis to see if it is going up or down. Please keep Liam in your prayers that his numbers are going up.

June 22, 2012 – Update from Kristy – No results until Monday 🙁

Posted in Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, Liam's BMT updates | Tagged child rare disease, Chimerism/Engraftment, Familial Erythrophagocytic Lymphohistiocytosis, Familial Hemophagocytic Histiocytosis, Familial Hemophagocytic Lymphocytosis, Familial Hemophagocytic Reticulosis, FHL, FHLH, Hemophagocytic Lymphohistiocytosis, Hemophagocytic Syndrome, Primary Hemophagocytic Hymphohistiocytosis | Comments Off

Today Liam is 13 months post BMT!

Posted on June 12, 2012 by Nana

Our Little Super Man

Posted in Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, Liam's BMT updates, Photos, Uncategorized | Tagged child rare disease, Familial Erythrophagocytic Lymphohistiocytosis, Familial Hemophagocytic Histiocytosis, Familial Hemophagocytic Lymphocytosis, FHL, FHLH, Hemophagocytic Lymphohistiocytosis, Hemophagocytic lymphohistiocytosis (HLH), HLH, Primary Hemophagocytic Hymphohistiocytosis | Comments Off

Good morning Anchor ABC’s Robin Roberts has blood, bone marrow disorder

Posted on June 12, 2012 by Nana

Robin Roberts announced she has been diagnosed with myelodysplastic syndrome, a blood and bone marrow disease once known as preleukemia. She will have to have a bone marrow transplant. Her sister is going to be the donor.

Source: http://www.telegram.com/article/20120612/NEWS/120619893/1312

Posted in Uncategorized | Tagged GMA, Good Morning America, Robin Roberts | Comments Off

Liam’s first time playing outside…

Posted on May 18, 2012 by Nana

He was very excited to be going outside for the first time for a walk!! : He has never walked around outside before. He has rode the 4-wheeler, and went for walks in a pack, but never by himself walking. It was priceless.

Posted in Hemophagocytic lymphohistiocytosis (HLH), Liam's BMT updates, Photos, Uncategorized | Tagged child rare disease, Familial Erythrophagocytic Lymphohistiocytosis, Familial Hemophagocytic Histiocytosis, Familial Hemophagocytic Lymphocytosis, Familial Hemophagocytic Reticulosis, FEL, FHL, FHLH, Hemophagocytic Lymphohistiocytosis, Hemophagocytic lymphohistiocytosis (HLH), Hemophagocytic Syndrome, HPLH | 1 Comment

May 14, 2012 – Liver labs are going down!!

Posted on May 15, 2012 by Nana

Kristina update her FB status:

Blood draw done! Leslie did an amazing job ♥ her everyone there said Liam is my little twin they couldn’t believe how much he looks like me

Update: Liver labs are going down!! They test 3 one is in the normal range again and the other 2 are almost in the normal range 🙂 I’m 1 happy momma

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, Liam's BMT updates | Tagged child rare disease, Familial Erythrophagocytic Lymphohistiocytosis, Familial Hemophagocytic Histiocytosis, Familial Hemophagocytic Lymphocytosis, Familial Hemophagocytic Reticulosis, FEL, FHL, FHLH, Hemophagocytic Lymphohistiocytosis, Hemophagocytic lymphohistiocytosis (HLH), Hemophagocytic Syndrome, Histio Awareness - HLH, HPLH | Comments Off

Liam BMT Birthday – 1 year post Transplant

Posted on May 12, 2012 by Nana

Today it has be one year since Liam received his Bone Marrow Transplant from his brother Hunter. We feel so blessed to be at this milestone in Liam’s life. We are so thankful to God for this blessing. He blessed us with doctors that worked so hard caring for Liam, no words can ever express the gratitude that we have for them. Thank you to all our friends, family, and new friends that we have made on this journey and support from others we have never met. Your thoughts and prayers have been such a blessing to our family.

Posted in Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, Liam's BMT updates | Tagged child rare disease, Familial Erythrophagocytic Lymphohistiocytosis, Familial Hemophagocytic Histiocytosis, Familial Hemophagocytic Lymphocytosis, Familial Hemophagocytic Reticulosis, FEL, FHL, FHLH, Hemophagocytic Lymphohistiocytosis, Hemophagocytic lymphohistiocytosis (HLH), Hemophagocytic Syndrome, Histio Awareness - HLH, HLH, HPLH, Primary Hemophagocytic Hymphohistiocytosis | Comments Off

Seattle Children’s Hospital performs Kelly Clarkson’s song “Stronger”

Posted on May 11, 2012 by Nana

The hemoncology floor of Seattle Children’s Hospital performs Kelly Clarkson’s song “Stronger” NEW! Check out a quick behind the scenes clip of how the video was made http://www.youtube.com/watch?v=b4w1beZg8mM

Posted in Uncategorized | Comments Off

Search for:
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
Subscribe to Liam's HLH Journey by Email
Activate your Email Subscription

Click on the link above to start your Subscription. You will receive a verification message. FeedBurner activates your subscription to “Liam's HLH Journey” once you respond to this verification message.

You will need to click on the confirmation link in your email to "ACTIVATE" your subscription.

Thank you for following Liam's Journey

LiamsHLHJourney@gmail.com
YOU MUST REGISTER TO LEAVE A COMMENT

Due to the overwhelming amount of SPAM, you must register first to leave a comment. Sorry for any inconvenience this may cause.
Meta
- Log in
- Entries RSS
- Comments RSS
- WordPress.org
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 13
October 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.
TOTAL PAGE VIEWS

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: 206.987.2000
Dr. 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 98109

Main Entrance:
1354 Aloha St.
Seattle, WA 98109

Parking Garage:
1335 Aloha St. (under the clinic)
Seattle, WA 98109

Need 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
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
  - Post-Bone Marrow Transplant Patient Management
  - Protocol 2256 – Liam’s conditioning for BMT
- Bone Marrow Registry Info
- HLH Stories
- Links
  - Pre-eclampsia – Mirror syndrome – Triple oedema – Ballantyne syndrome
  - Seattle Children’s Hospital performs Kelly Clarkson’s song “Stronger”
- What is HLH or FHLH?
April 2026

M T W T F S S

« Sep

1 2 3 4 5

6 7 8 9 10 11 12

13 14 15 16 17 18 19

20 21 22 23 24 25 26

27 28 29 30
Archives
- September 2015 (2)
- October 2013 (2)
- September 2013 (2)
- August 2013 (2)
- July 2013 (1)
- June 2013 (1)
- May 2013 (20)
- April 2013 (15)
- March 2013 (33)
- February 2013 (13)
- January 2013 (20)
- December 2012 (7)
- November 2012 (9)
- October 2012 (18)
- September 2012 (9)
- August 2012 (7)
- July 2012 (11)
- June 2012 (4)
- May 2012 (7)
- April 2012 (19)
- March 2012 (14)
- February 2012 (10)
- January 2012 (26)
- December 2011 (9)
- November 2011 (13)
- October 2011 (16)
- September 2011 (23)
- August 2011 (27)
- July 2011 (29)
- June 2011 (36)
- May 2011 (25)
- April 2011 (11)
- March 2011 (7)
- February 2011 (5)
- January 2011 (13)
- December 2010 (14)
- November 2010 (13)
- October 2010 (16)

April 2026
M	T	W	T	F	S	S
« Sep
		1	2	3	4	5
6	7	8	9	10	11	12
13	14	15	16	17	18	19
20	21	22	23	24	25	26
27	28	29	30

Jaelynn’s Journey

Activate your Email Subscription

YOU MUST REGISTER TO LEAVE A COMMENT

Meta

September 2010

November 2010

May 2011

October 17, 2012

TOTAL PAGE VIEWS

Seattle Children’s Hospital

Dr. Jean Sanders and Liam

Seattle Cancer Care Alliance

Histiocytosis Association

Childhood Cancer Awareness

HLH Resources

Recent Posts

Recent Comments

Pages

Archives