1st BMT – Journal Updates to Day +50

Our BMT Journey begins…

Posted on March 14, 2011 by Nana

We will try to keep everyone up to date on Liam’s Status. Next week we will meet with the Doctor’s in Seattle, at the Bone Marrow Clinic. Just waiting for the HLA typing to come back on all the boys.

Dr. Appointment today

Posted on March 18, 2011 by Nana

Kristy & Jared are at the doctors with Liam. He has chemo today, and 3 days of steriods on the maintence plan. It is so hard to get him to take his new medicine Cyclosporine, he does not like it at all. I tasted it I don’t think you could use anything to mask that taste, aweful. Thank you for your continued Prayers for our Little Liam.

Dr. Appointment in Seattle

Posted on March 26, 2011 by Kristy

We went to Seattle on March 22, 2011 to the Children’s Hospital. We all had to go. They told us that Noa and Hunter are a 100% match to Liam. Which is a huge relief. Know we have to wait for there NK function tests results to come back. If those test come back good. Then we will wait for the genetic test results which will take about 4 weeks. If they are not able to donate then they will use umbilical cord blood. They have 140 possible matches. Liam’s typing is so rare that they have not found a match in the registry. That is why they are going with cord blood. So in life remember you can make a miracle happen by just being put in the registry. I know I am forever thankful to those that donate blood. Or go into the bone marrow registry. Without those people Liam would not be here. I plan to be put in the registry as soon as I can. I also plan to start donating blood. If I can help one person that is all that matters. Please keep us in your prayers.

Dr. Appointment – Portland

Posted on March 29, 2011 by Nana

This morning Kristy, Jared and Liam are at a consult in Portland. Liam has to have aHickman Line put in. They have to put it in because the Picc Line cracked two weeks ago and had to be pulled out. They will be doing it on Friday. Liam has chemo & steriods the same day.

The Children’s Hospital at Legacy Emanuel

Say a prayer for Liam

Posted on April 1, 2011 by Nana

Liam is going in this morning to have the Hickman line put in. Keep the little warrior in your prayers.

Photos of Liam before his Procedure

Posted on April 2, 2011 by Nana


He looked so cute in his little outfit, I couldn’t resist taking some pics.

Liam after his Hickman Line procedure

Posted on April 2, 2011 by Nana


Our Brave Little Warrior

Liam

Posted on April 2, 2011 by Nana

Photo from Mommy today at the Ronald MacDonald House

Dr Appointment today

Posted on April 14, 2011 by Nana

Liam is on his way to the Dr. in Portland, he has Chemo today. Prayers

DAY +0 ANC 1092 Liam’s Bone Marrow Transplant is Today, Please say a Prayer

Posted on May 12, 2011 by Nana

Thursday, May 12, 2011- DAY +0 – Transplant Day 12:03PM

Liam’s ANC is 1092 on Day +0

Today is the day that our Little Warrior will recieve him Life Saving Bone Marrow Transplant. The gift of a second chance for a brighter future. The gift of a brother’s love. Hunter never gave it a second thought to be the donor for his little brother Liam.  He was honored, and felt blessed to be able give his little brother his bone marrow. All three of Liam’s older brothers, Noa, Hunter and Ryder bravely went thru all the needed testing to try and help save their Little Brother Liam. Noa & Hunter fully understood what this all meant for Liam, that he could die with out a Bone Marrow Transplant. Both of them bravely agreed to do whatever was needed to save thier little brother. Liam is so blessed to have had two brothers be a perfect 10/10 match. Hunter and Liam have so many phyiscal triats, looking at baby pictures you could easily be confused on which one it is. It just seemed meant to be that Hunter would be the donor. Noa watched over his brother Hunter everyday making sure he got plenty of rest, and eating healthy foods. All three brother’s played an important roll in helping save their Little Brother’s Life. They are all Hero’s! With so much love for each.

They are all blessed to have each other.

DAY +1 ANC 567 +2 ANC 280 – Update on Liam & Hunter

Posted on May 14, 2011 by Nana

May 13th, 2011 – DAY +1 – Liam’s ANC is 567 on day 1, he had diarrhea last night, seemed to be better this morning. Nurse found blood in his stool, they said it could be from the chemo. Still eating well. Liam skin redness is better today. They increased his pain medication today. It better for him to heal. The doctors said he is right on track for what they expect.

May 13, 2011, 11:55 AM
Hunter is hurting but being very strong Liam did very well with the transfusion. Now we wait and hope for the best. Thank u 4 prayers & support

Papa & Liam – DAY +2

Update: Hunter is doing much better today. Liam is doing ok. He keeps getting red all over. They aren’t sure what the cause is, might be antibiotics or the Methotrexate. He got both within an hour so not sure which one caused it. He just recieved the antibiotics again this morning. So we will have see if he gets red again. He got really flush and his skin was really warm. He looked like a little tomato.

Red Man Syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC270616/

DAY +2 – Saturday, May 14, 2011
Liam’s ANC 280 Today. He still is red. Diarrhea has slowed down. He is still drinking. He is not interested in solids at this point.

DAY +3 ANC 0

Posted on May 15, 2011 by Nana

Update DAY +3 – ANC 0
Liam Update from Papa (overnight)
[7:31:56 AM]: he went through the night very well. I stayed awake untill 2:30am and no redness and he was still asleep but the nurse said at 4:00am he got red but did not wake up.

DAY +4

Posted on May 16, 2011 by Nana

DAY +4 – Liam has mucositis this is causing him alot of pain this morning.

DAY +5

Posted on May 17, 2011 by Nana

Kristy said that Liam got sick several times this morning. I haven’t gotten a full update on Liam so I will post more when Kristy give me more info. It is so hard not being with him.

They moved them to a bigger room this morning. No shower but it is bigger, and has a patio off the room. That will be great for Kristy. But Liam should not be out in direct sun light. The doctors said it can sometimes can cause GVH (graft v. host). He will need to be completely covered in sunscreen, even under his clothes. The sun penetrates thru the clothing and can cause skin problems. So the best thing is to avoid it, maybe in the early morning or after sun down.

Kristy’s Twitter Update: May 17, 2011, 10:44 PM
He is still struggling with the pain but still is so sweet. He should start to feel better around day+11, he should also start to graphed around Day +14to +20

Platelet count is at 40 if it drops to 10, he will need a transfusion. ANC (Absolute Neutrophil Count) is still 0. Magnesium level was low so they gave him some.

Today started at 6am Liam got his leg stuck in the crib railing and his leg is now very bruised. Then he threw up and got a bloody nose.

DAY +6

Posted on May 18, 2011 by Nana

Kristy’s Twitter Update – Wednesday, May 18, 2011, 10:10 AM

Liams WBC count is still <0.2. platelet count 17 so they will be giving him platelets today.ANC still 0. Day +6 he will get methotrexate :(

Liam was up at 4am he threw up and there was blood in it. He just fell back to sleep. We should now more after his labs are back.

Liam threw up again tonight. He had a chest x-ray today it was clear. The Dr. says he is doing very well. She said he gets a A+. :)

Liam loved playing in the tub again. Love the smile on his face, brings joy to my heart.

DAY +7

Posted on May 19, 2011 by Nana

Kristy’s Twitter Update: Thursday, May 19, 2011, 9:17 PM
Day+7 Liam threw up again. He still is needing to up his pain meds. ANC 0 but his liver counts look better:) Dr thinks he won’t get worse :)

DAY +8

Posted on May 20, 2011 by Nana

Kristy’s Twitter Update – Friday, May 20, 2011, 1:44 PM
Day+8 Liam’s ANC 0, platelet and red blood r getting low again. He will need to get both in a couple days. He will get Intravenous immunoglobulin (IVIG) tomorrow.

Liam is in a lot of pain and very nauseous. Today has been difficult he was up at 5am I hope he starts to feel better Hate 2 c him like this

DAY +9 A Glimmer of Hope – ANC 42

Posted on May 21, 2011 by Nana

Kristy Twitter Update – Saturday, May 21, 2011, 1:02 PM
“My son is starting to graph, my son is starting to graph” I just needed 2 say it again I am bursting with joy and excitement.
about 5 minutes ago

Kristy’s Twitter Update: May 21, 2011, 12:17 PM

Day+9 Liam woke up at 3am and threw up. WBC 0.3 ANC (Absolute Neutrophil Count)42 so he has begun to graph:) He is in alot of pain still can’t get him 2 sleep. Platelet 26
about 2 minutes ago

ANC = (%neutrophils + %bands) x WBC

      

Mucus is very bad in his throat sounds horrible:( A nurse came and said he looks just like his Dad funny thing was it was my Dad not Jared.

Kristy’s Twitter Update – May 21, 2011, 10:04 PM

They slowed his feeds down in hopes that it will prevent him from throwing up but he has so much mucus I am not sure that will matter.

They have had to go up on his pain meds twice today. When they graftt it is very painful I hear and they r not sure if it is GVHD I hope not

Grafting is the right way to spell it. I am way to tired. If they think it is GVHD then they will have to scope his GI tract(upper GI). 2 make sure

DAY +10

Posted on May 22, 2011 by Nana

Sunday, May 22, 2011, 10:35 AM
Phone update from Kristy this morning. A bit of a low moment this morning. Liam is still in alot of pain, it is so hard to hear the sad painful cries thru the phone. His labs went back down today. I will try to get more info later.

WBC <0.2
ANC (Absolute Neutrophil Count) 0
Platelets 13

Kristy’s Twitter Update – May 22, 2011, 2:20 PM
Day+10 Liam’s ANC and WBC are 0 again but they expect it to go up and down They got his pain under control last night but today had 2 go up

Liam will get platelets today his level was 13. He will also get IVIG the immune booster. I just hope that we can get his pain under control

May 22, 2011, 5:01 PM
Liam has a low temp 101. They are going to do lab work to see if he has an infection. It is going up and down.

May 22, 2011, 7:48 PM
They are taking Liam to Radiology to get a chest x-ray.

Kristy’s Twitter Update – May 22, 2011, 9:30 PM
Liam has a fever they r not sure why. He got a chest and stomach x-ray they came back clear. So now we just wait and hope for the best:(

DAY +11

Posted on May 23, 2011 by Nana

Kristy’s Twitter Update – Monday, May 23, 2011, 11:59 AM

WBC <0.2

ANC (Absolute Neutrophil Count) 0

Platelets 49

Papa reading to his Little Buddy while the nurse takes his blood pressure

Papa grawling like a bear

I am finding out why so many people say u have 2 b your child’s advocate. I feel like it is a constant fight We r not #s that is so sad 2 me

Day+11 his counts r still 0 fever comes and goes. He is getting a blood transfusion today. They r trying to switch him to total parenteral nutrition (TPN) but I say no

He is still taking a bottle and getting food through his NG tube he is still tolerating it so why change it is much better for healing.

He will get Methotrexate 2day this will be his last dose I will be so glad when this is all over and he is free of HLH and BMT complications

May 23, 2011, 4:00 PM

Liam’s preliminary cultures came back they think he has Streptococcus in his blood stream. They had already started him on antibiotics. We have to wait for the final reports.

Kristy Twitter Update – May 23, 2011, 4:12 PM

Liam has a bacterial infection in his blood so he is being treated with antibiotics. I hope the antibiotics clear it up

May 23, 2011, 4:31 PM

They are taking Liam down for another x-ray. They have had a difficult time getting a draw on him. So they want to make sure the Hickman Line is ok. They are thinking it could be positional thing with him.

DAY +12 ANC 0 WBC <0.2

Posted on May 24, 2011 by Nana

Kristy’s Twitter Update: Tuesday, May 24, 2011, 3:04 PM
Day+12 Liam was up at 4:30am threw up and was in pain. Fevers r gone still no ANC or WBC. They expect it at day+14-20 so we r hoping soon

  Our Little Warrior fast asleep…

DAY +13 ANC 0

Posted on May 26, 2011 by Nana

This has been a very hard day, filled will extreme frustration and disbelief

frus·tra·tion
1. dissatisfaction: a feeling of disappointment, exasperation, or weariness caused by goals being thwarted or desires unsatisfied
2. frustrating of somebody or something: an act or instance of causing somebody or something to be dissatisfied or unfulfilled

dis·be·lief
feeling of not believing: the feeling of not believing or of not being able to believe somebody or something

Kristy requested Reverse Isolation for Liam, they will not allow this for my grandson. The hospital protocol does not call for gowns or masks to be worn when caring for BMT patients.

Kristy’s Twitter Update – Wednesday, May 25, 2011, 11:58 PM
I would like 2 know when we lost are right 2 protect our children.I am so saddened by this.They say u r contagious 3 days b4 u have symptoms

But yet nurses and doctors can come into Liam’s room without a mask on. That only takes common sense to figure out. Why take that chance?

Cold Virus Info:
A cold virus enters your body through your mouth or nose. Colds are highly contagious and most often spread when droplets of fluid that contain a cold virus are transferred by touch. That’s why you can get a cold by touching your eyes or nose after you touch surfaces with cold germs on them. Hand-to-hand contact or shared objects (utensils, computers, towels, toys, telephones, etc.) can cause you to catch a cold. You can also inhale the germs; the virus can spread through droplets in the air when someone who is sick coughs, sneezes or talks.

They have nurses go into rooms with highly contagious infections they gown up but then they come into Liam’s room.

DAY +14 ANC 112 WBC 0.4

Posted on May 26, 2011 by Nana

Kristy’s Twitter Update – Thursday, May 26, 2011, 6:53 AM

Day+14 ANC 112 WBC 0.4 So hopefully it will hold there and only go up. He did throw up again this morning but I think from the mucus

DAY +15 ANC 120 WBC 0.6

Posted on May 27, 2011 by Nana

Kristy’s Twitter Update – May 27, 2011, 8:30 AM
Day+15 Liam’s ANC 120 WBC 0.6. He threw up again this morning but again I think it is due to the mucus.

May 27, 2011, 9:30 AM
This is such great news for our Family to hear, two days of increase in his numbers in a row.

This is our Cell Song From (Celia and Grandma Terri)

rendition: to the tune of Row Row Row Your Boat!

Grow, Grow, Grow new cells~
Gently in your blood!!

Healthy white cells may we see
As we are waiting patiently!

Grow, Grow, Grow new cells
Gently in your blood!!

Giving that old HLH a kick
And no more will you be sick!!

Grow, Grow, Grow new cells
Gently in your blood!

Let the grafting and new marrow grow!
Telling that old HLH to get out and go!

Grow, Grow, Grow new cells
Gently in your blood!

With the donation of marrow from Hunter with love,
And the Lord’s healing grace from above!!

May 27, 2011, 8:00 PM
Papa returned home today, after being with Liam for 17 days. He said that everyday since monday Liam has slightly improved each day. He had some really rough days, where it was hard to get him to smile. Yesterday Papa says, was one of the best so far. He played in his saucer for along time. Than he played in the tub, splashing water all over.

May 27, 2011, 9:38 PM
Liam has a low temp 99.4, and he threw up again

DAY +16 ANC 244 WBC 0.9

Posted on May 28, 2011 by Nana

May 28, 2011, 7:14 AM
Praying and Waiting patiently to get an update from Kristy on Liam’s Labs this morning. It would be such great news see another day of increases in his ANC & WBC.

UPDATE FROM KRISTY – May 28, 2011, 8:13 AM
We need a drum roll…..
THE COUNTS ARE:
ANC 241
WBC 0.9
Platelets 17

Kristy Twitter Update – Saturday, May 28, 2011 – 9:53 AM
Day+16 Liam’s ANC 244 WBC 0.9 so he is doing very well trying to graft. He is in isolation now :)

May 28, 2011, 4:28 PM
Liam threw up again. His NG tube came out, and he got a bloody nose. The nurse called the doctor to let him know, to see if they to give him platelets.

DAY +17 ANC went down 126

Posted on May 29, 2011 by Nana

Sunday, May 29, 2011, 7:00 AM
Hoping that Liam’s labs come in soon. Waiting…..

Update from Kristy – 5/29/2011 9:16:18 A.M. 
Day+17 Liam’s ANC 126 WBC 0.9 so we hope tomorrow his ANC will go back up. He got platelets today. Platelet count was 14. He will need blood tomorrow. They are also weaning him off the morphine. He has not thrown up yet today so I am hoping that it stays that way. Dr is still very impressed with his improvement. They are very amazed that he continued to take a bottle all the way through transplant. Thank you so much for following Liam.

      

DAY +18 ANC 288 WBC 1.2 platelet 108 hematocrit 26.0

Posted on May 30, 2011 by Nana

Update from Kristy – Monday, May 30, 2011 7:58:02 A.M.
Day+18 ANC 288 WBC 1.2 platelet 108 hematocrit 26.0 but it went up a little on it’s own. So they might hold off on giving blood. He was up at 4:00am but did not throw up. He did throw up at about 9:00pm yesterday night.

       

DAY +19 ANC 258 WBC 1.5

Posted on May 31, 2011 by Nana

Update from Kristy – Date:Monday, 5/31/2011 8:41:01 A.M. 
Day+19 ANC 258 WBC 1.5.
Liam threw up again last night they r going 2 check NG tube 2 make sure it is in far enough. If it is not in far enough it can cause him to gag.

     

DAY +20 ANC 371 WBC 1.6

Posted on June 1, 2011 by Nana

Kristy Twitter Update – Wednesday, June 1, 2011 – 8:41 AM

Day+20 ANC 371 WBC 1.6
Goal ANC 3 days above 500 in a row. Normal range WBC should be 6.0

8:00 AM – Threw up again last night. Hoping he does not this morning.

8:41AM – Liam did throw up again this morning. I hope that it stops soon.

Promise Box Quotes
Verse: O Lord my God, in you I take refuge. Psalm 7:1
Quote: Thank you for being a calm place of rest when life’s battles make me weary.

DAY +21 ANC 558 WBC 3.0

Posted on June 2, 2011 by Nana

Update from Kristy Date: Thursday – 6/2/2011 8:45:22 A.M. 
Day+21 ANC 558 WBC 3.0 :)
He woke up at 2:30am and wanted to play I think he wanted us to know how good he felt.

Liam weighs 17.204 lbs and is 27 in long. Not sure yet what % he is for his age should find out later. Very happy day around here :)

Dr says we should be out of here middle of next week. I love it such good news. I feel like we have lived n a hospital for the past 8 months

SUCH GREAT NEWS
This is what we have been patiently waiting for. Now we need two more days in a row over 500 ANC. So proud of our Little Warrior. Nana Love you so much.

DAY +22 ANC 430 WBC 1.8

Posted on June 3, 2011 by Nana

Update from Kristy’s Date: Friday, 6/3/2011 9:14:11 A.M. 
ANC 430 WBC 1.8

Please pray for Liam to grow those new cells and keep his ANC level up there.

DAY +23 ANC 1125 WBC 2.5

Posted on June 4, 2011 by Nana

Kristy’s Twitter Updates – Saturday, June 4, 2011, 6:34 AM
Day+23 ANC 1125 WBC 2.5 platelet 63 it went up from 53 yesterday hematocrit 33 which stayed the same as yesterday. Throwing up again, 3 times.

Kristy’s Twitter Updates – June 4, 2011, 10:34 PM
Today has been very hard he threw up a lot. Not sure exactly why. Viral Gastroenteritis

Hope tomorrow is a better day for him :( Liam is not 27in. Long he is 25 3/4in. Long. He is short for his age but his length and weight equal out perfect.

June 3, 2011, 11:34 PM Liam’s NG tube got plugged so they had to take it out now we have to put another one in. He is sleeping but they have to wake him. Poor baby

Promise Box Quotes
Verse: I will sing to the Lord, because he has dealt bountifully with me. Psalm 13:6
Quote: I rejoice in you, for you given me countless blessings.

 

      

DAY +24 ANC 518 WBC 2.0

Posted on June 5, 2011 by Nana

Kristy’s Twitter Update – June 5, 2011, 1:25 PM
Day+24 ANC 518 WBC 2.0 Liam now has a rash and loser stools but did take his bottle again. He seems 2 b in less pain 2day. I am so thankful

June 5, 2011, 10:29 AM – No labs yet, computers are down. They stopped Liam’s feeds via NG tube last night. He has been drinking more from the bottle today. Liam now has a body rash, not sure why. The rash comes and goes. They want to scope top to bottom, to make sure nothing is going on in his intestines.

Quote from Kristy – June 5, 2011, 3:30 AM
The cries that fill these halls tell a story of one in the darkest of their days, and also there is HOPE when it should not be possible…

Promise Box Quotes
Verse: It is you who light my lamp; the Lord, my God, lights up my darkness. Psalm 18:28
Quote: When my energy and passion for living run low, you help me refuel.

 DAY +25 ANC 609 WBC 2.1

Posted on June 6, 2011 by Nana

Email from Kristy this morning – Date: 6/6/2011 1:55:34 A.M. 
I have been throwing up since 11pm

ANC 609 WBC 2.1 - Monday, June 6, 2011, 10:30 am

Posted on Liam’s FB Group – Liam’s Journey – HLH Warrior
Terri Ann Poulsen-Smith 2:48pm Jun 6

Prayer request today, not only for our Liam, but his mommy too!
Kristy has been sick since last night. She is resting at the RMH and her dad headed up to care for her and Jared is with Liam. Kristy, praying you are better soon and can be back with your boy!!!
Prayers for everyone to stay healthy and strong!
Liam keep up the good work and continue to improve and graft! xoxo

(Terri, Thank you for posting this prayer request for Kristy & Liam)

June 6, 2011, 4:14 PM – Update from Papa, Kristy is still not feeling well. She called to check on Liam, he is doing fine. He thinks he is a big boy, he pulled himself up in the crib and stood up. Way to go Little Warrior. We all Love you so much.

DAY +26 ANC 895 WBC 2.5

Posted on June 7, 2011 by Nana

Kristy’s Twitter Update – Day+26 ANC 895 WBC 2.5 :)

Posted on Liam’s FB Group – Liam’s Journey – HLH Warrior
Terri Ann Poulsen-Smith
 Please keep him in your prayers and his mommy and daddy as they both are not feeling well. Good thing Mark is there as he is now with Liam. So glad to see the numbers go up!! Such a strong boy!!

Viral Gastroenteritis

DAY +27 ANC 2037 WBC 3.8

Posted on June 8, 2011 by Nana

Update from Kristy via FB – June 8, 2011, 5:28 PM – Day+27 ANC 2037 WBC 3.8 he will get the scope done tomorrow he threw up had some diarrhea and got a rash again so they want to check for the GVHD. They will not be doing BMB they are just going to do blood draw to look for Hunter’s cells:) Liam is truly amazing.

Update from Aunt Tami – June 8, 2011, 7:48 A.M – ANC 2037 WBC 3.8 – Thank you, Lord.
Nana love those numbers, Love you Little Warrior. ((HUGS)) oxoxo

This week has been a little overwhelming. Kristy became very sick Sunday night about 11pm, and had to leave the hospital. She was so concerned for Liam, she didn’t know what to do. Jared stayed with Liam, and she walked back to the RMH at 2am. I don’t know how she made it over there, she was so sick. Papa left on Monday morning as soon as he heard Kristy was sick to take care of her. Tuesday morning Jared called to say he was feeling ill as well. So papa went over to stay with Liam. It just seems to keep getting more overwhelming. Papa had been their for a couple hours, and he started feeling ill himself and had to leave. We are so grateful that Papa’s sister Tami was able to arrange to come over to care for Liam. Please keep the family in your prayers.

Update from Aunt Tami – Wednesday, June 8th, 2011 7:48:20 A.M. 
They had Liam scheduled this morning for a scope top to bottom. But they canceled this because he seems to be doing ok. She didn’t sleep well (I’m sure worried about Liam). But she said, he snoozed away and rested well. I think she tuckered him out last night. They played for hours. She rented Curious George on Netflix, he loved it.

ANC Levels

Posted on June 8, 2011 by Grandma Terri
Risk of Infection based on Absolute Neutrophil Count (ANC)
ANC greater than 1500 No increased risk of infection
ANC 1000-1500 Slight increase in risk of infection
ANC 500-1000 Moderate increase in risk of infection
ANC 100-500 High risk of infection
ANC less than 100 Extremely high risk of infection

DAY +28 ANC 934 WBC 2.9 Chimerism/Engraftment Testing today

Posted on June 9, 2011 by Nana

Update from Aunt Tami – Thursday, June 9, 2011, 9:23 AM
ANC 934 (yesterday’s ANC 2037)
WBC 2.9 (yesterday’s WBC 3.8)
Platelets 84
Hematocrit 31.1

I was hoping for higher ANC today, but as Noa(Liam’s big brother) reminds me it is still above 500. They say is it normal to go up an down. They will be doing the scope today at 12PM to check for GVH (graft v. host). He is a little upset he can’t have any food before the procedure, and he is teething. They did the lab draw on Liam today to check for Hunter’s cell growth count, that could take a couple of day for the results. Please say a prayer for our little Warrior.

Such a happy smile…

Twitter Update from Kristy – June 9, 2011, 12:50 PM
Liam is going into his procedure now please pray for good news.Twitter Updates from Kristy – June 9, 2011, 3:05 PM
Liam just went into his procedure very delayed and he could not eat anything so I am not very happy about how they went about this.

Liam is out of procedure he did great. There was some red spots in his stomach they think it could b from NG tube rubbing or GVHD.

Everything else looks wonderful. Now we just wait for biopsy results.

I want to thank my Aunt Tami she has been so kind to take care of Liam. She is so amazing and I am lucky to have her.

DAY +29 ANC 2176 WBC 3.9 – Nine months old

Posted on June 10, 2011 by Nana

Update from Aunt Tami – Friday, June 10, 2011, 8:16 AM
ANC 2176 (yesterday’s ANC 934) (1500-5400 normal)
WBC 3.9 (yesterday’s WBC 2.9) (6.0-17.5 normal)
Platelets 89 (yesterday’s Platelet 84)  (250-600 normal)
Hematocrit 29.4 (yesterday’s Hematocrit 31.1) (33.0-39.0 normal)

This is such great news, this is the highest numbers yet.

Promise Box Quotes
Verse: Worship the Lord with gladness, come into his presence with singing. Psalm 100:2
Quote: As my heart is filled with gladness, let my mouth sing out praise to you.

DAY +30 ANC 1651 WBC 2.6

Posted on June 11, 2011 by Nana

Update from Kristy – June 11, 2011, 10:00 AM
ANC 1651 (yesterday’s ANC 2176) (1500-5400 normal)
WBC 2.6 (yesterday’s WBC 3.9) (6.0-17.5 normal)
Platelets 111 (yesterday’s Platelet 89) (250-600 normal)
Hematocrit 29.6 (yesterday’s Hematocrit 29.4) (33.0-39.0 normal)

The Doctor is very pleased with Liam’s progress. He was glad to see that Liam’s platelet count came up on it’s own, he said that is great. Liam will start the transition of preparing to leave the hospital. He will have a 4 hour daily pass, returning back to the hospital. He did vomit this morning. They started him on the steroids to help with the GVHD. He has a small dectectable amount in his tummy.

Promise Box Quotes
Verse: What shall I return to the Lord for all his bounty to me? Psalm 116:12
Quote: Thank you for miracles in my life ~ big and small, seen and unseen.

     

Kristy’s Twitter Update – Day+30 ANC 1651 WBC 2.6 platelet 111. Liam threw up this morning not sure why. The Dr said we should b out of here next week :)

DAY +31 Platelets 150

Posted on June 12, 2011 by Nana

Update from Kristy – June 12, 2011, 12:19 PM

Tacrolimus ~ not sure what the level is today.
Platelets 150 (yesterday’s Platelet 111) (250-600 normal)

They only tested for Platelets & Tacrolimus levels today. They will do a full lab tomorrow. Doctor said he his doing great. Liam did not sleep well last night, was up a 2am. Kristy said, the Prednisone they are giving him for the GVHD really winds him up.

Kristy’s Twitter Update – 03:00 PM
Day+31 platelet 150 no other blood work done. They want 2 give me more gray hair. He is un hooked from all machines until 6:30. Very active

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)

Day+32 he is doing so well thank you Jesus for giving my son a fighting chance :)

NG tube back in :( Liam is now having roid rage and he is not happy at all. Someday I will have a baby free of all these meds :)

They are going 2 up his Ativan to try and calm him from the steroids I will be trained tomorrow to give him feeds in NG tube & IV magnesium

06:45 PM – We are at the Ronald house enjoying 4 hours free of the hospital :)

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)

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 :)

     

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.

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)

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.

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.

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.

DAY +40 ANC 6320 WBC 7.35

Posted on June 21, 2011 by Nana

Update from Kristy – June 21, 2011, 4:47 PM
ANC 6320 (1500-5400 normal)
WBC 7.35 (6.0-17.5 normal)
Platelets 319 (250-600 normal)
Hematocrit 29.0 (33.0-39.0 normal)

So excited about his numbers today , this is so great. :)

DAY +41

Posted on June 22, 2011 by Nana

June 22, 2011, 9:04 AM
Liam is doing good, his next appointment is on Friday. I haven’t gotten an update from Kristy this morning.

DAY +42

Posted on June 23, 2011 by Nana

Talked to Kristy today, she said Liam is doing good. He is so active and very curious, he likes being mobile in his walker. She caught him getting into his dresser, he was taking every thing out.

Yesterday, I was adding Liam’s milestone dates to my computer calendar all the way to DAY +100. I added reminder alert for every 10 days. If I got it right Liam’s DAY +100 is the day before Hunter’s Birthday (the donor). What a great birthday present that will be for Hunter.

DAY +43 ANC 7360 WBC 8.37

Posted on June 24, 2011 by Nana

Friday, June 24, 2011, 10:26 AM – Update from Kristy
Day+43 we have appointments 2day. I hope everything is good. Thank u 4 all the love & support. We are so blessed 2 b surrounded by all of u

6/24/2011 4:17:00 P.M.
ANC 7360 (1500-5400 normal)
WBC 8.37 (6.0-17.5 normal)
Platelets 296 (250-600 normal)
Hematocrit 30 (33.0-39.0 normal)
Day+43 ANC 7360 WBC 8.37 hemat 30 platelet 296 very good numbers so happy.
Thank u 2 everyone that has helped him get here. Dr, nurses, ect.

Kristy’s Facebook comment: 
I also have to thank God… He is our footprints in the sand

Big Boy’s 1st Radio Flyer… To Cute!!

     

I was talking to Kristy on the phone, she was feeding Liam mango’s and he was growling like a little bear. He is our little man cub. So glad that he is getting his appetite back for solids again.

DAY +44 One day at a time

Posted on June 25, 2011 by Nana

Saturday, June 25, 2011, 10:50 AM
Update from Kristy – So we will be headed in to get Liam’s NG tube put back in. He decided to yank it out. I just wish he didn’t have to go through it. One day at a time…

Saturday, June 25, 2011, 10:00 PM
Update from Kristy – Liam got his NG tube put back in he did throw up when they did it. We went for a 6 mile jog-walk. It was great and he loved it.

     

DAY +45

Posted on June 26, 2011 by Nana

Sunday, June 26, 2011 – Not much going on, which is a good thing…

Liam Loves his little play tent.

Day 46

Monday, June 27th, 2011
Liam is great, lots of fun times playing and doing all the normal baby stuff, he is wearing his mom and dad out! He keeps them busy and such a blessing to have him feeling so well. So thankful! I think his next appt is on Tuesday.

DAY +47 ANC 8650 WBC 9.11

Posted on June 28, 2011 by Nana

Update from Kristy – Tuesday, June 28, 2011, 8:44 PM

ANC 8650 (1500-5400 normal)
WBC 9.11 (6.0-17.5 normal)
Platelets 330 (250-600 normal)
Hematocrit 31 (33.0-39.0 normal)

Liam had a clinic appointment today, everything is going good.

Day+47 ANC 8650 WBC 9.11 hematocrit 31 platelet 330 :) he will get a chest x-ray tomorrow. They have 2 check because Liam is on steroids.

DAY +48 Liam has a virus – Cytomegalovirus (CMV) infection

Posted on June 29, 2011 by Nana

Update from Kristy – Wednesday, June 29, 2011, 2:40 PM
She is at the Clinic now. Kristy & Jared had to rush Liam in, his labs yesterday show his tested positive for Cytomegalovirus (CMV) infectionhttp://www.mayoclinic.com/health/cmv/DS00938

Please say a prayer for Liam…

Update from Kristy – Wednesday, June 29, 2011, 4:11 PM
They are heading over to Children’s Hospital, Liam is being admitted. They will be closely monitor him.

Search info from Grandma Terri: In bone-marrow transplant patients, CMV-immune globulin (CMV-IVIG) and the antiviral drug ganciclovir given intravenously can be used to fight CMV infections.

Kristina Smith -Wednesday, June 29, 2011 at 6:21pm
I really have to say that I am at the edge of falling apart. God please grant me the strength and courage to get through this. We will be admitted to the hospital at 7:30 tonight please keep us in you prayers.

Day +49

Posted on June 30, 2011 by Nana

Thursday, June 30, 2011, 11:40 PM
Liam will probably be in the hospital for at least a week. They will recheck him for the CMV next week. They did a stool test to check for the C.diff, the preliminary results were negative.

Skyped with Kristy and Liam tonight. It was so good to see them. Liam was a very BUSY little bee. He was trying to get into everything. Mommy need 8 arms to keep up with him. He really looked good, love his sweet smiles. Nana miss them so much. xx((HUGS))xx

    

      

     
Thanks for the pics Auntie Kandie, love ya lots

DAY +50 ANC 6699 WBC 7.7

Posted on July 1, 2011 by Nana

Kristina Smith – Friday, July 01, 2011, 12:30 AM
Liam is doing good. Hoping the antibiotics will kick the CMV. I am so thankful that there is something they can do for him. Last night I was thinking about how if this would of happened 20 years ago Liam would not be here. I am so thankful that he is.

Lab updates – Friday, July 01, 2011
ANC 6699 (1500-5400 normal)
WBC 7.7 (6.0-17.5 normal)
Platelets 301 (250-600 normal)
Hematocrit 28.9 (33.0-39.0 normal)

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