Liam's HLH Journey | HLH – Hemophagocytic Lymphohistiocytosis, is a rare disorder of the immune system

DAY +39

Posted on June 20, 2011 by Nana

Monday, June 20, 2011, 12:50 AM
Update from Kristy- I have been so busy sorry I have not been updating. Liam got a infection in his stomach and is being treated with antibiotics. He is full of energy even though his hematocrit is 26 or it was on Friday. The boys got to come up and see us this weekend it was very much needed.

Update From Kristy – Monday, Jun 20, 2011, 9:49pm
The boys just left and poor little Ryder started throwing up. I hope that he is ok and it rips my heart out that I can not take care of him right now. I also am scared to death that Liam might get it. Liam also had to have his ng tube put back in today. Tomorrow we have a appointment and will try to let you all know how things are going.

Posted in Liam's BMT updates | 2 Comments

DAY +38 Liam has a virus – Clostridium difficile

Posted on June 19, 2011 by Nana

Papa & the boys arrived Saturday evening to have a visit with Mom, Dad and Liam.

Liam’s has a virus – Clostridium difficile
http://en.wikipedia.org/wiki/Clostridium_difficile
http://www.mayoclinic.com/health/c-difficile/DS00736
Info from the Mayo Clinic – Some people who have C. difficile never become sick, though they can still spread the infection. C. difficile illness usually develops during or shortly after a course of antibiotics. But signs and symptoms may not appear for weeks or even months afterward.

C. difficile bacteria are passed in feces and spread to food, surfaces and objects when people who are infected don’t wash their hands thoroughly. The bacteria produce hardy spores that can persist in a room for weeks or months. If you touch a surface contaminated with C. difficile, you may then unknowingly ingest the bacteria.

Gospel Benefit Concert for Liam River Smith

Come support the family of Liam River Smith – our 9 month old HLH warrior – while at the same time hearing amazing vocals lifting praise to God. The Classic Gospel Sons, a reunited gospel quartet started by Terry Vander Stoep, and His Praise, a men’s choir from a local Woodland congregation, are joining together to put on a concert for Liam on June 19, 2011 at the Woodland High School Auditorium. Admission is free. A love offering for Liam will be collected and all proceeds will go directly to his family. Please invite your friends!

Jun 20 @ 8:53am
Post in Liam’s Journey – HLH Warrior Facebook Group.
Grandma Terri says: The Concert for Liam, was really awesome! Thanks so much to Terry Vanderstoep and the Gospel Son’s and the Men’s choir, Praise Him! Thanks to Heidi, Nate, Sara and Celeste for all their help with the event!
Love you all!

Posted in Fundraising for Liam, Uncategorized | Comments Off

DAY +37 Time to Breathe… A Day of Rest – Tooth #2

Posted on June 18, 2011 by Nana

Saturday, June 18, 2011 – No appointments until Monday. Liam’s appointments went well yesterday, everything is going great. Liam’s tummy seems to be doing better, the Prednisone is doing it’s job to help with GvHD. Liam has been very active Kristy says, he love his little zoom zoom. He is a busy little bee, trying to get into everything he can reach. He now has both of his front bottom teeth. I can’t wait to see a picture.

The boys are visiting with mom & dad, they arrived in Seattle around 5:30 PM tonight.

Promise Box Quotes
Verse: I have calmed and quieted my soul, like a…child with its mother. Psalm 131.2
Quote: Today I want to spend time with you and be nurtured by you.

Update: Saturday, June 18, 2011 – 8:14 PM –
Kristy got a call back from the DR today, on the stool cultures. (Virus – Clostridium difficile) Yesterday he seemed like he had more gas, so she had them check his stool. Liam has a intestinal virus in his tummy. They have started him on antibiotics. Kristy will just have to monitor him closely. He can spread the virus to the rest of them. Purell want kill the virus, have to wash hands with soap & water. They said that is from himself taking other antibiotics can cause it.

Posted in Insprirational Quotes, Liam's BMT updates | Comments Off

DAY +36 ANC 3490 WBC 4.2

Posted on June 17, 2011 by Nana

Kristy’s Facebook update: Friday, June 17, 2011, 12:00 AM
Kristina Smith I am getting ready to set up Liam’s magnesium through his Hickman I am a little nervous. I already got his feeds going through his NG tube I was so worried I would screw it up. Giving Liam his final meds through his NG tube and then hopefully get a few hours of sleep 🙂

June 17th – 12:16 PM
Well we made it through last night:) Liam slept all night and got all of his meds. He is so very happy to be at the Ronald House. The sun is shinning and life is good. We have to get ready to go to his appointment at 2 for lab draws then to see nutritionist and then the Dr. Hope it goes great. Thank you for all the love and support.

Update from Kristy – June 17, 2011, 09:30 PM
ANC 3490 (06/16/11 ANC 3735) (1500-5400 normal)
WBC 4.2 (06/16/11 WBC 5.0) (6.0-17.5 normal)
Platelets 232 (06/16/11 Platelet 270) (250-600 normal)
Hematocrit 26.0 (06/16/11 Hematocrit 28.5) (33.0-39.0 normal)

Posted in Liam's BMT updates | 1 Comment

Liam’s Journey video/slideshow By: Nate & Heidi Kellar

Posted on June 16, 2011 by Nana

Uploaded by nateheidikellar on Jun 15, 2011

Liam River Smith is a 9 month old baby who, at 4 weeks of age, was diagnosed with an extremely rare blood disease known as Hemophagocytic lymphohistiocytosis, or HLH. This video shows pictures of his family, how he was blessed with life-saving bone marrow from his 8 year old brother in May 2011, and how he is doing today. We love you Liam!

To view Liam’s Journey video/slideshow By: Nate & Heidi Kellar
click on the Youtube link below:

http://youtu.be/e_4ikT8BVnA

I just want to say thank you to Nate & Heidi for putting together this video. They did such a Beautiful Job. The family Loved it.

Posted in Photos | 6 Comments

DAY +35 Big Day! Liam is leaving the Hospital – ANC 3735 WBC 5.0

Posted on June 16, 2011 by Nana

Kristy’s Twitter Update – Thursday, June 16, 2011, 11:00 AM

Day+35 ANC 3735 WBC 5.0 platelet 270 hematocrit 28.5 went up on it’s own they thought they were going 2 have 2 give transfusion b4 we left.

ANC 3735 (06/15/11 ANC 3041) (1500-5400 normal)
WBC 5.0 (06/15/11 WBC 4.2) (6.0-17.5 normal)
Platelets 270 (06/13/11Platelet 173) (250-600 normal)
Hematocrit 28.5 (06/13/11 Hematocrit 29.7) (33.0-39.0 normal)

Today is the big day, Liam is leaving the Hospital. They will be staying at the Ronald MacDonald house until the +100 days. Please continue to pray for Liam, as he continues to heal.

Posted in Liam's BMT updates, Photos | 1 Comment

DAY +34 ANC 3041 WBC 4.2 – Liam’s first tooth

Posted on June 15, 2011 by Nana

Update from Kristy – June 15, 2011, 10:34 AM
ANC 3041 (06/14/11 ANC 2521) (1500-5400 normal)
WBC 4.2 (06/14/11 WBC 4.4) (6.0-17.5 normal)

Kristy has been busy all day in classes learning how to care for Liam at home/RMH.

Yesterday Liam’s first tooth came thru.

Kristy’s Twitter Update – 06:00PM
Day+34 ANC 3041 WBC 4.2 Liam is a 100% grafted in platelet,WBC, and NK function. T-cell is 59% hope that improves. They’ll check n 30 days 🙁 Training today went good. Liam is very agitated and is having a very hard time sleeping. We are set to go to the Ronald house tomorrow 🙂

Posted in Liam's BMT updates, Photos | Comments Off

Gospel Benefit Concert for Liam River Smith

Posted on June 15, 2011 by Grandma Terri

	Gospel Benefit Concert for Liam River Smith Sunday June 19th 6pm-9pm Woodland High School Auditorium 757 Park Avenue Woodland, Washington Come support the family of Liam River Smith – our 9 month old HLH warrior – while at the same time hearing amazing vocals lifting praise to God. The Classic Gospel Sons, a reunited gospel quartet started by Terry Vander Stoep, and His Praise, a men’s choir from a local Woodland congregation, are joining together to put on a concert for Liam on June 19, 2011 at the Woodland High School Auditorium. Admission is free. A love offering for Liam will be collected and all proceeds will go directly to his family. Please invite your friends! Want to know more about Liam’s story? Go to his website here: liamsjourney.com

Gospel Benefit Concert for Liam River Smith

Sunday June 19th 6pm-9pm

Woodland High School Auditorium

757 Park Avenue

Woodland, Washington

Want to know more about Liam’s story? Go to his website here: liamsjourney.com

Posted in Uncategorized | Comments Off

DAY +33 ANC 2521 WBC 4.4 Chimerism/Engraftment Results

Posted on June 14, 2011 by Nana

Kristy’s Twitter Update – Liam got his first tooth today bottom right. I have met the most amazing people here. I feel so blessed 🙂

Tuesday, June 14, 2011, 9:48 AM
His labs just got taken about 30 mins ago. I will post them as soon as I get the info from Kristy. Last night was the first time he has left the hospital since May 6th. Kristy said he was so happy at the Apartment/RMH. She said he had a smile the whole time playing. He was zooming around in his zoom zoom having so much fun. So exciting knowing he is doing so well. We all Love you Liam so much.

Liam’s weight today 16.368 lbs, weight on 06/10/11 was 17.028 lbs, weight on 06/02/11 17.204 lbs. Kristy is concerned about the weight loss, she is going to talk to the doctors this morning. The Dr says that it is nothing to worry about, that he could have been retaining fluids.

Update from Kristy – June 14, 2011, 11:53 AM
BME – Bone Marrow Engraftment Analysis ~ They checked 4 different tests, 3 are 100 % engraftment of Hunter’s Cell and the CD3 is 59%, NK Cells 100%. Not sure what the other tests are. Dr says that it can take longer for the CD3 to increase because he received Reduced Intensity Conditioning (RIC) Bone Marrow Transplant.

Update from Kristy – June 14, 2011, 04:30 PM
ANC 2521 (06/13/11 ANC 2761) (1500-5400 normal)
WBC 4.4 (06/13/11 WBC 5.2) (6.0-17.5 normal)
Platelets 233 (06/13/11Platelet 173) (250-600 normal)
Hematocrit 29.0 (06/13/11 Hematocrit 29.7) (33.0-39.0 normal)

Posted in Liam's BMT updates, Photos | Comments Off

DAY +32 ANC 2761 WBC 5.2

Posted on June 13, 2011 by Nana

Email Update from Kristy – Date: 6/13/2011 9:07:07 A.M.
Will not know labs until later today they ran magnesium all night and want to check levels. He threw up NG tube and they have attempted to put it back in several times. He threw it up last attempt. So they are giving him a break.

Update from Kristy – June 13, 2011, 01:30 PM
ANC 2761 (06/11/11 ANC 1651) (1500-5400 normal)
WBC 5.2 (06/11/11 WBC 2.6) (6.0-17.5 normal)
Platelets 173 (06/12/11Platelet 150) (250-600 normal)
Hematocrit 29.7 (06/11/11 Hematocrit 29.6) (33.0-39.0 normal)