As we started our journey to Seattle for Liams check up my stomach was full of butterflies. The unknown is so hard to except. We arrived in Seattle to beautiful weather and it felt as though we never left. We got to see the amazing people who have walked this journey with us. To them I am forever thankful. They were so excited to see Liam and how well he is doing. We met withe nutritionist and she was very pleased with Liams growth and weight gain. He is in the 95% for were they would like him to be so we are almost there! They were also amazed that he did not have his NG tube. We met with Dr. Carpenter and it was great he said it does not look like Liam has had a BMT. The Dr checked Liam out and had nothing bad to say. We talked about starting the ween of tacrolimus he wants to wait and get the results of his graft test back first. If they look good then we can start the ween. He also discussed flu shots for Liam and they want Liam to get a flu shot at 6 months post BMT. It scares me to get him a flu shot but it’s something we have to do. We all have to get one too. I feel like we live each day in fear that Liam will come down with something so the best thing to do is protect all of us the best we can. They also informed us that when you get a flu shot for the first time you need to have another one a month later.
We should know the results of his blood tests by the end of the week.
They also said that his last ferritin level that was 12 was unheard of from a post BMT patient 4 months so that was very encouraging.
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 1183
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 : (
- 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
- Fundraising for Liam
- HLH Stories
- Kristy’s Twitter Updates
- What is HLH or FHLH?
- 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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