Today was a long day. He was NPO – nothing by mouth from 1am until after is Bone marrow & Skin Biopsy around 11am. He had to be at the lab at 7am, we ended up be about 15 mins late because of a jack knife semi truck on the south bound 1-5 freeway. We were lucky that we only had to wait about 20 mins to go one exit. But we heard that others had to wait a long time. Than we had to head back to Seattle Children’s Hospital. Liam had a dental check up at 8am to look for Graft versus host disease in his mouth. The dentist said the his mouth looked great, she couldn’t see any GVHD. That was great news. Next appointment was at the Hemoc Clinic upstairs. Liam needed a stress dose of Hydrocortisone before his Bone Marrow and Skin Biopsy. He was really not very happy with all of this. I really think is so tired of all of the appointments, and all of the procedures. You can tell he knows something is up. He gets alot of nervous energy. His blood pressure and oxygen were all good. They took us back for the procedure about 10:15am. It is so hard taking him to have all of these things done. I know it is very important and it must be done. But it is so hard, you think it would get easier. That is not so, it seems like it gets harder. You just want him to be a normal little boy. I HATE IT WHEN THEY ARE SEDATING HIM, HE LOOKS AT YOU WITH THOSE BIG BEAUTIFUL EYES. YOU CAN TELL THAT HE FEELS THE MEDS STARTING TO TAKE EFFECT, YOU CAN SEE THE MOMENT OF FEAR IN HIS EYES BEFORE HE GOES OUT. HIS LITTLE BODY GOES LIMP. IT MAKES ME CRY EVERY TIME. Now we wait and pray that Noa’s cells are growing strong and no sign of HLH, and no GVHD of the skin. Next stop was Radiology, they did a Chest X-Ray. They sent some labs to Cincinnati Children’s ~ NK Function and SL2. They are also doing the Lipids, and other normal labs. Plus they are doing a sorted Chimerism Engraftment Study (CD3, CD33, CD56 and CD19). PRAYERS NEEDED…. THANK YOU FOR YOUR LOVE AND SUPPORT.
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?
- 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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