Today brings a new anxiety. I knew we would have to go home but I think I blocked the emotions that go with it. It’s the unknown without are protective bubble the hospital is within walking distance. We will be at least 45 minutes from the nearest hospital and we will be with doctors that are not experts in GVHD. I will be taking care of my three other boys with the help of my parents. My life has been so many different directions the past 11 months that it will feel weird to go back to normal. I feel like it’s the first day of school were you are excited but nervous of the unknown. Now I wait to see if Liam will loose his graft or get GVHD. I really hope none of those things happen but it is a reality I have to try and except. It’s also hard to believe that he is HLH free for now. The medical field works miracles that I would have never imagined possible before this. God gives them the ability to work miracles I believe in my heart. They are amazing people who have dedicated there life’s to save others. I feel like how do you thank them for something like that? I will truly miss the friends I’ve made up here. They will always hold a very special place in my heart.
Liam is doing well except for the looser stools he has been having. His liver function is back to normal. His NK function test came back really low but they think it is due to the shipping and handling of it. So they will retest it on Tuesday. He is almost walking and climbing everything. He is my little prince Liam for sure. I am not sure how he is going to like sharing mommy with his brothers. I can only hope our life will get to go back to some since of normal. It will never be the same it was before all this. But I like to think it will be even better. It has changede in so many ways and I like to think all for the better. It has made me a much better person. I lost myself before this and I feel like now I am finding my passions and love for life again. You get so caught up in being a mom you forget about you.
I write this in hopes that it will help others going through it feel like the emotions they are having are those of many going through this. I hope it also gives strength to those that have a litlle one fighting HLH there is hope Liam defied the odds and so can your child. Love and hope to all…
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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