This has been a trying week for me. Liam had his appointment last Tuesday and he had a rash again they looked it over and thought it was the same rash he had before. Which is good but a BMT parent is always wondering what it could become. You never get any answer really except for wait and watch to see what happens. They also discussed removing his Hickman which is amazing but still you wonder if he will need it again. They were supposed to check his chimerism’s (graft) at that appointment but instead told me that Seattle said no and that Liam would have to wait until Jan. To get checked that did not settle well with me. So the next day I called Seattle and they said that they weren’t going to check Liam again until May. I was so upset I said I want to talk to the doctor I am not comfortable with decision. I was freaking out these children can loose there graft due to a milder BMT so what does waiting help anything? The nurse called me back and said they would be checking it at his next appointment I was very relieved and thankful that they changed the plan. Now I have a another worry what if he is loosing his graft? I sure hope not but it is reality. Liam’s graft has been going down slowly and I’m hoping that going down on the tacro will help his graft go up.
Liam threw up on Friday and that about sent me over the edge. When he flared the second time with HLH that is how it all started. He has not thrown up again but the worry is still there. So the graft testing will tell us if there is something to be worried about. The reality is that parents with life threatening illnesses are always on the edge of are seats or sanity if you will. I think my child has been through so much in his short little life and I just hope that we can move forward now. It’s the hardest thing to watch your child go through and not be able to fix it. You never feel a since of security. But I have to keep faith that my little warrior will beat this.
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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