1st BMT – Journal Updates DAY +51 – DAY +100

DAY +52

Posted on July 3, 2011 by Nana

Kristy’s Twitter Update – Sunday, July 3, 2011, 12:15 PM
Liam is doing very good. He is a little climber and into everything. We have been so blessed and I am so thankful.

DAY +53 Happy 4th of July Everyone

Posted on July 4, 2011 by Nana

Monday, July 04, 2011, 8:33am
Kristy is resting at the RMH. So glad she is getting a restful nights sleep. I will post update when I get one from her. We all hope everyone has a great 4th of July.

DAY +54 Chimerism Testing/Engraftment today

Posted on July 5, 2011 by Nana

Liam got tested 2day 2 see how much of Hunter has engrafted. It was 59% on Day+30 so hoping it is higher now should know results in 2 days.

            

DAY +55

Posted on July 8, 2011 by Nana

Wednesday, July 6, 2011
Liam is now back at the Ronald MacDonald House. He is doing really well. The steroids are slowly being weaned down. Kristy was able to watch the Fireworks from Liam’s Hospital room monday night.

DAY +56 negative for Cytomegalovirus

Posted on July 8, 2011 by Nana

Thursday, July 7, 2011
Kristy said the test results came back negative for the Cytomegalovirus (CMV) infection. That is such great news. Thank you, Lord.

Source: http://www.mayoclinic.com/health/cmv/DS00938
Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you’re healthy. People with weak immune systems have a greater risk of becoming ill from CMV. There’s no cure for CMV, but drugs can help treat people with weak immune systems.

     

DAY +57 Chimerism/Engraftment Results – Tooth #3

Posted on July 8, 2011 by Nana

Friday, July 8, 2011
Liam has a clinic appointment today. I will update more info later.

Update: 4:41 PM
Kristy said all of Liam’s labs are still in the normal range. The Chimerism-Testing was still the same as on Day +30. On DAY +80 Liam will have a Bone Marrow Test to check Hunter’s Donor Cell count. They will also check his NK Function at that time.

Liam has another tooth that came thru on the top and the other one is about to come thru.

Chimerism Testing/Engraftment Analysis
more info @ http://www.seattlecca.org/Chimerism-Testing.cfm

DAY +58

Posted on July 10, 2011 by Nana

Saturday, July 9, 2011, 8:00 PM
Kristy had to take Liam to the Hospital, he pulled out his NG tube. They also had to change the dressing on the Hickman line.

DAY +59 Ten months old today

Posted on July 10, 2011 by Nana

Sunday, July 10, 2011
Kristy’s update: Liam is still at 59% graft for t-cell they will do a bmb on day 80 to see if it goes up. All of his viral test came back neg :)

Liam is 10 months old today.

DAY +60

Posted on July 13, 2011 by Nana

Monday, July 11, 2011

          

 

DAY +61 Liam’s First Steps

Posted on July 13, 2011 by Nana

Tuesday, July 12, 2011
Kristy’s Twitter Update: Liam took his first step today and is standing on his own. He also takes off running in his walker if u tell him no or to stay over here.

Liam had his clinic appt. today his lab numbers are good. They tested CMV again to make sure it is gone. He is very strong and full of energy thank you Jesus :)

DAY +62

Posted on July 13, 2011 by Nana

Wednesday, July 13, 2011
Liam is doing great today. I talked to him on the phone today, he is so active. He keeps mommy & daddy very busy.

Kristy Twitter Update: Liam got his 4th tooth today and has 2 more coming in.
He is so amazing :-)

     

Gift from friend/Artist: Brian Ripp

Day+63

Posted on July 15, 2011 by Kristy

Liam’s doctors appointment went good today. We got to see Dr. Jean Sanders who is the first person to do a bone marrow transplant she is truly amazing. She gives us so much hope for Liam’s recovery she can’t believe how well he is doing. At times I think he is a little boring to them which is a really good thing. Liam’s team is truly amazing and I am so thankful for them.
He continues to meet all of his age appropriate goals ahead of time in some. He is so busy and thinks he needs to get into everything. He has 3 teeth now and 3 more coming in. His hair is starting to come back and I can’t wait to see him with a full head of hair. He weighs 16.7lbs still litlle for his age but he looks very healthy to me.
He took his first step 2 days ago and us really working hard on getting his balance. He is very independent, strong, and determined. I truly believe God has very special plans for Liam and I can’t wait to see what they are.
On Day+80 Liam will get his ferritin level, BMB, NK fuction and skin biopsy. I hope all turns out well. We will also get a overall percentage for his graft.
Thank you for all the love and support throughout this journey. It will never be forgotten.

DAY +64

Posted on July 15, 2011 by Nana

Liam has a clinic appiontment today. Will update more later.

Update from Kristy: July 8th WBC 7.96 ANC 6680 platelet 335. I will know 2 days results tomorrow.

Such a busy little boy, so good to see him so active.

     

DAY +65

Posted on July 18, 2011 by Nana

Saturday, July 16, 2011

Update from Kristy: Last night was rough Liam was up at 11:30pm and then at 5am and he is very upset this morning not sure what is going on. Going 2 call dr

DAY +66

Posted on July 18, 2011 by Nana

Sunday, July 17, 2011

Update from Kristy: Liam did better last night so I think it was his teeth.

DAY +68

Posted on July 20, 2011 by Nana

Tuesday, July 19, 2011

Update from Kristy – Day+68 Liam had physical therapy today to see if he was where he should be and he is. Dr apt went good he is amazing and truly a warrior. :)

DAY +69 – Liam got his 4th tooth today

Posted on July 21, 2011 by Nana

Update from Kristy – Wednesday, July 20, 2011
Day+69 Liam got his 4th tooth and working on two more. I went 12 miles on my mountain bike again and it felt so wonderful. Soon I’m going 20

DAY +70 – Liam has 6 teeth now

Posted on July 22, 2011 by Nana

Update from Kristy: Thursday, July 21, 2011

Day+70 Liam has 6 teeth now & hopefully will get a break n teething soon. He is now climbing up & on kitchen chairs and into clothes hampers

     

DAY +71

Posted on July 23, 2011 by Nana

Update from Kristy: Friday, July 22, 2011

The sun is shinning here in Seattle beautiful morning. I am hoping to go biking before our apt have a wonderful day.

Kristy said the appointment went well. It was with Dr. Sanders, she said Liam is doing great. On Day +80 Liam will be having his Bone Marrow Biopsy. Please say a pray for Liam, to have good results on donor cells from Hunter.

     

DAY +72

Posted on July 23, 2011 by Nana

Update from Kristy: Saturday, July 23, 2011
Liam’s appointment went very well yesterday. They decreased his feeds in half, stopped IV mag now he just gets oral mag. He is CMV free for now. He decided he needed to pull out his NG tube, so he is on his way to the hospital get NG tube put back in. He didn’t sleep well last night, was up until 1am than awake at 5am. Today he doesn’t have much appetite.

     

DAY +73

Posted on July 24, 2011 by Nana

Update from Kristy: Sunday, July 24, 2011

We had to go to the hospital last night. Liam was not wanting to eat or drink. They think he is having withdrawal so we went back up on his oxy(pain meds).

DAY +74

Posted on July 26, 2011 by Nana

Updates from Kristy: Tuesday, July 26, 2011

Liam is now doing pull ups off the kitchen table by himself . I am going to try and get a video of it.

We have dr apt today I think they will schedule his day+80 evaluation. I am nervous but hope it only brings good news.

DAY +75

Posted on July 27, 2011 by Nana

Update from Kristy: Wednesday, July 27, 2011
Day+75 Liam’s day 80 evaluation is on August 4. So we will get some answers. He has apts to check his eyes and mouth for GVHD

DAY +76

Posted on August 1, 2011 by Nana

Update from Kristy – Thursday, July 27, 2011
Day+76 Liam has seven teeth now 3 on the bottom and 4 on the top. :)

DAY +77

Posted on August 1, 2011 by Nana

Update from Kristy – Thursday, July 28, 2011
On our way to Liam’s oral appointment hoping for only good news. The weather is beautiful here in Seattle. Hope it’s sunny wherever u r :)

Ok not sure what to think of Liam’s oral apt. He said Liam’s cheeks are whiter than normal could b signs of GVHD in mouth. :(

DAY +78

Posted on August 1, 2011 by Nana

Update from Kristy – Friday, July 29, 2011
Liams apt went good we will just have 2 wait & watch his mouth but Dr. Sanders thinks he is still doing great. Next week will b very busy

Missing my family they are having our yearly reunion it is so hard to be away from all of them 4 so long. Next year will b amazing luv u all

DAY +79

Posted on August 1, 2011 by Nana

Update from Kristy – Saturday, July 30, 2011
Last night 4 hours sleep the night before 3 I think I am totally wiped out. The sun is finally shining & all I want to do is sleep. :( energy

DAY +80

Posted on August 1, 2011 by Nana

Update from Kristy – Sunday, July 31, 2011
So I woke up to Liam chocking on the NG tube it was just inside his nose. So I put the NG tube back in myself got return & sound=success :)

DAY +81

Posted on August 2, 2011 by Nana

Liam is doing great. He has doctors appointments tomorrow. I was able to Skype with them today. Liam was just smiles from ear to ear. I just can’t believe DAY +100 is 19 days away. Liam goes in on thursday the 4th to have the bone marrow biopsy, praying for good numbers.

DAY +82

Posted on August 2, 2011 by Nana

Update from Kristy – Tuesday, July 2, 2011

We have a dr apt today hoping for only good #’s. I feel the anxiety creeping up on me. This week will tell us what is to come for Liam.

Clinic Update: Ok not the best dr visit Liam’s potassium is a little low and his liver is a little elevated. So now we wait 4 fri. When they check again :(

 

DAY +83 – Hope and faith

Posted on August 3, 2011 by Nana

Yesterday’s Clinic Updates: Ok not the best dr visit Liam’s potassium is a little low and his liver is a little elevated. So now we wait 4 fri. When they check again :(

Update from Kristy – Wednesday, August 3, 2011
I checked on Liam at 12:15am he pulled his NG tube out & his feeds r all over him and his bed I will have 2 put NG back n when he wakes up :(

I put NG tube back in :) I couldn’t fall asleep until 2am & Liam woke up at 3:45am so not much sleep 2 c his cute face makes it so worth it

Hope and faith is all we got. Don’t let anything blind you of the goodness that surrounds you. Let your heart be kind and your eyes open :)

Thursday, August 4, 2011 Liam has the Bone Marrow Biopsy testing, Please say a special prayer for Liam, Mommy & Daddy, Noa, Hunter and Ryder.This testing will help determine his progress, and when they can all be a family together again. DAY +100 should be the day of release to return to Home, if everything is going well with his counts. That day is August 20, the day before Hunter’s birthday. Hunter said, “that would be the best birthday every.”

Testing: On Day+80 testing, Liam will get his ferritin level, BMB, NK fuction and skin biopsy. I hope all turns out well. We will also get a overall percentage for his graft to show how much of Hunters cells have grafted.

Clinic appointment for Rash: On our way to the dr so they can check out his rash.
We just have 2 wait & watch the rash. Tomorrow is the big day 80 evaluation BMA, skin biopsy, & all the blood work. Keep Liam n your prayers

DAY +84 Bone Marrow Testing, Please say a pray for Liam

Posted on August 4, 2011 by Nana

Post from Kristy: Thursday, August 4, 2011
I’m going 2 try & get some sleep. Have 2 b up at 3:30am to switch feeds over 2 pedia then up at 7:00am 2 turn feeds off. 1st apt 8:00am.

DAY +85

Posted on August 5, 2011 by Nana

Updates from Kristy: Friday, August 5, 2011
Clinic Appointments today: At infusion they are checking Liam’s adrenal glands. Then we have to come back at 2:30 for a blood draw & then apt at 3:00. Exhaustion

Clinic Appointments yesterday:Liam is getting his BMA & skin biopsy. Please pray that Liam is free of HLH & Hunter’s cells took over & gave Liam a 2nd chance.

     

Day+86

Posted on August 6, 2011 by Kristy

Day+86 Liam pulled his NG tube out again today. So I put it back in. I never thought I would be putting a NG tube in my own child. Yesterdays results give us so much hope. Even if it is only a couple of test results. Liam is doing very well today climbing, crawling, and getting into everything. He is so close to walking something I wasn’t sure I would get to see. But by the grace of God and a wonderful medical team. We still have him.
We are so grateful for all the love and support from everyone. We will never forget all that has been done for us.
Yesterday a beautiful strong girl Nevaeh got her wings. She lost her fight to HLH but will always be remembered and loved. Her strength was amazing and her fight was unforgettable. Spread your wings and fly free of pain.
The HLH world is so much more than I ever knew and is so scary at the same time. There are so many that do not get the outcome we all want for them but they too are warriors and will never be forgotten.

Update from Kristy: Saturday, August 6, 2011

Day+86 Liam’s ferritin is 12 :) his adrenal glands are not functioning so we have 2 start cortisone 3xday. Liver function is still improving.

There is no sign of GVHD on Liam’s skin. Skin biopsy came back great. Thank you Jesus, doctors and staff. So far all is good. :)

     

DAY +89 – Chimerism/Engraftment Results

Posted on August 9, 2011 by Nana

Kristy’s Twitter Update: Tuesday – August 9, 2011

Clinic Update – 9:00am apt 17.2lbs 27inch good bp and temp. Waiting to see the oncologists. Hoping we get more results later today.

Clinic Appointment Update from Kristy: So today’s BMA results were not what we wanted but they are still good. NK function 89% t-cell 62%. he will get another Chimerism/Engraftment test (this will only be a blood test) in 6 weeks :(

DAY +80 – 08/05/11        DNA Chimerism Analysis

(CD3+) T Cell                       62% donor origin (38% host)

(CD33+) Myeloid Cells           54% donor origin (46% host)

(CD56+) NK Cells               89% donor origin (11% host)

(CD19+) B Cells                      57% donor origin (43% host)

DAY +90 Liam is 11 months old today – Dr. Jean Sanders & Liam

Posted on August 10, 2011 by Nana

Liam is 11 months old today. Happy Birthday Liam, Nana love you sooo much. oxoxo

Day +100 is 10 days away, the older brothers are sooooooo excited to see Mom, Dad and baby Liam. They are counting the days down.  We are so thankful to God above for getting us thru this very long journey, and blessing us with great Medical Team – Seattle Cancer Care Alliance & Seattle’s Childrens Hospital.

Liam & Dr. Jean Sanders

Jean E. Sanders, MD – http://myprofile.cos.com/sandersa22

Dr. Sanders is the director of pediatric clinical hematopoietic cell transplantation at Seattle Cancer Care Alliance and Seattle Children’s Hospital.

http://www.seattlecca.org/

http://www.seattlechildrens.org/

Dr. Jean Sanders to receive lifetime achievement award

The Pediatric Blood and Marrow Transplant Consortium will honor Sanders Feb. 12 in Tampa, Fla.

February 9, 2009

 Source: http://www.fhcrc.org/about/pubs/center_news/online/2009/02/jean_sanders_award.html
Dr. Jean Sanders’ pioneering clinical research in pediatric bone marrow transplantation has advanced the field and improved the survival and quality of life of many children undergoing this lifesaving procedure.
Dr. Jean Sanders of the Center’s Clinical Research Division will become the first recipient of the Pediatric Blood and Marrow Transplant Consortium’s Lifetime Achievement Award.
The consortium is recognizing Sanders for a career that exemplifies its mission “To support research and education to improve the availability, safety and efficacy of hematopoietic cell transplantation and other cellular therapeutics for children and adolescents.” Sanders will receive the award during the 2009 Tandem bone marrow transplant meetings of the American Society for Blood and Marrow Transplantation and the Center for International Blood and Marrow Transplant Research Thursday, Feb. 12 in Tampa, Fla.

 DAY +91

Posted on August 11, 2011 by Nana

DAY +92 Clinic Appointment today

Posted on August 12, 2011 by Nana

Liam has a 8am clinic appointment today, I will update more info when I get it from Kristy.

Update: Liam is getting an IVIG (IV Immune Booster). Usually transplant patients need it weekly for three months. The infusion takes 4 hours.

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

 

Kristy’s Twitter Update: August 12, 2011 @ 9:30am

We r at IVIG infusion it takes 4 hours so it will be a long day.

We’ve been here an hour and 15 min and still not hooked up. Trying to entertain a 11 month old on a bed is not working. 

Yesterday Jared and I did 40 miles on the Mt bike :)

DAY +93 ANC 1780 WBC 3.42

Posted on August 13, 2011 by Nana

Saturday, August 13, 2011

Not much to update today, no clinic appointments until Tuesday.

Clinic Labs from Friday, August 12, 2011

ANC 1780 (1500-5400 normal)
WBC 3.42 (6.0-17.5 normal)
Platelets 402 (250-600 normal)
Hematocrit 30 (33.0-39.0 normal)
ALT 26 (6-45 normal)
AST 31 (3-74 normal)

Day+94 New Anxiety… Going home

Posted on August 14, 2011 by Kristy

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…

DAY +98 Liam at Home, All together again…

Posted on August 18, 2011 by Nana

 No words can express this moment… I think the photos speak for themselves!

They have been apart for so long. One weekend together in three months.

AUGUST 18TH, 2011

     

     

     

     

     

     

     

     

      

     

     

     

    

     

     

     

    

Day 100-!!!

Posted on August 20, 2011 by Nana

Grandma Terri posted in Liam’s Journey – HLH Warrior – 9:22am Aug 20

Today is Liam’s 100th day post bone marrow transplant and we want to celebrate his journey, give thanks to God for how far he has come, and how amazing he is! He is the happiest little warrior, and I ask that everyone please continue to keep him in your prayers for complete healing! So thankful he is home with all his brothers, and tomorrow he can help Hunter, ( his donor)celebrate his 9th birthday!! They will always have this special time to celebrate together! He is our miracle!

DAY +100

Posted on August 20, 2011 by Nana

Kristy’s Twitter Update – August 20, 2011 @ 6:30pm Coming home was full of emotions and lots of excitement. I fill so truly blessed and so thankful God let me bring my baby boy home.

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