Things have been so busy the last 2 weeks. We had an appointment June 4th, at that appointment they said that Liam wouldn’t be going home at Day +100 because of the gut GVHD. Than the next appointment they said we would be discharge to go home the next week, June 11th. This was after they had reviewed all of the data from his Day +84 testing. Liam’s gut GVHD had also continued to improve. It was great news, but the reality of leave the safety net of being in Seattle with the BMT doctors right their was very overwhelming. But we were very excited that they felt confident they Liam was doing well enough to go home. We had a week to get everything ready to go. I was so thankful, my Aunt Tami hired a cleaning company to clean the Ronald McDonald Apartment. That was a huge relief, one less thing to worry about. The last week was so crazy. You don’t realize how much stuff you have until you start packing. We had been in Seattle since Liam’s HLH flare the end of Dec. 2012. I had to go home the weekend before we left to get the house ready, and I took a car load of stuff home. My mom took a load of stuff home. Than my dad took a car load of things home. I thought that the rest would all fit in the car going home. The morning we were leaving as everything was being loaded in the car I was about to panic. I had Noa and Hunter came up to Seattle for the journey HOME, which really limited the space in the car. But I was so glad to have them there Every space in the car was filled. It was hilarious, it will be a fun memory for us to look back on. We had a good laugh about it at the time. We got home on June 12th. It is so good to be home, and all the brothers together. Liam is doing good. His lab are all good. They did a full sorted chimerism blood test on his graft last week. PLEASE PRAY that Noa’s cells are continuing to go up. Thank you for your support, prayers and love.
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
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This was taken 12 days before Liam was admitted to the Emergency Room.
34 days after starting HLH-2004 Protocol, chemotherapy and steroid treatment.
ANC (Absolute Neutrophil Count) 0
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 VIEWSThank you for visiting Liam's blog.
Seattle Children’s Hospital
4800 Sand Point Way NE
Seattle, WA 98105
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
825 Eastlake Avenue E.
Seattle, WA 98109
1354 Aloha St.
Seattle, WA 98109
1335 Aloha St. (under the clinic)
Seattle, WA 98109
Need help finding SCCA?
Call (206) 288-SCCA (7222) or
(800) 804-8824 .
We are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.
- 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
- 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 : (
- 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
- 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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