1st BMT – Journal Updates DAY +151 – DAY +200

DAY +153 Walking, Waving and Kisses

Posted on October 12, 2011 by Nana

Kristy Twitter Updates – Wednesday, October 12, 2011

Liam is now starting 2 walk, wave & blow kisses. He is so amazing. His favorite toy is the Woody doll that talks & his best friend is Ryder

If all goes as planned Liam will get his Hickman out the end of December :) he got IVIG yesterday he was just below the limit.

Low Fever…

Posted on October 12, 2011 by Nana

Kristy’s Twitter Update – October 12, 2011, 11:10 PM

Liam’s temp is a little up so I will monitor it all night if it goes over 100.4 then we have to take him in. Hoping it’s just teething :(

Kristy’s Twitter Update – October 13, 2011, 11:00 AM

Liams temp is down. I’m hoping it stays that way. Im hoping it really was just teething. Thank you for the love and support :)

Day + 158 Liam’s Walking

Posted on October 16, 2011 by Nana

Kristy’s Twitter Update – October 16th 2011 – Noa and Hunter went hunting with Jared. Hope they get one. Liam is walking all over now. It is so cute.

DAY +160 Clinic appointment today

Posted on October 19, 2011 by Nana
Mysticlimber13

Liams apt went very good 2day he’s 20.03lbs. His quick labs all came back in the normal range :) He is now down 2 once every 2 weeks for apts.

DAY +164 No clinic appointment this week

Posted on October 30, 2011 by Nana

Kristy’s Twitter update for October 24, 2011
Tomorrow we have no dr’s apt and it feels really weird.
Liam is walking all over now and he can climb the ladder 2 his brothers bunk bed and gets up on the top bed.

DAY +168 Started the couch to 5k

Posted on October 30, 2011 by Nana

Kristy’s Twitter updates for October 26, 2011

Started the couch to 5k. When Liam is no longer in isolation, I hope to do a run. I wish I could do the run on Oct. 30 next year I will be there.

DAY +171 Stand for Something…

Posted on October 30, 2011 by Nana

Kristy’s Twitter Update for October 29, 2011

Stand for something you believe in….

DAY +175

Posted on November 5, 2011 by Nana

Kristy’s Twitter Updates: November 4, 2011

Liam spit up 2x yesterday and once today and it’s freaking me out :(

Liam got his 9th tooth and he has two more getting ready to pop through.

DAY +179

Posted on November 10, 2011 by Nana

Kristy’s Twitter Update for: November 8, 2011

  • Another beautiful morning. Liam has colored nasal drainage so I’m a little nervous about what could come of it but I hope it goes away (about 2 days ago)

Mysticlimber13 Kristy’s Twitter Update for: November 7, 2011

  • Couch to 5k 3rd week :) very exciting for me. I’m wondering if doing it on a treadmill is going 2 make it hard when I go outdoors?

DAY +180

Posted on November 10, 2011 by Nana
Mysticlimber13 Kristy’t Twitter Update for: November 9, 2011

2day I have no energy at all I don’t know if is the stress or what but it sucks Liam had no nasal drainage 2day I hope it stays that way :)

DAY +181

Posted on November 10, 2011 by Nana

Mysticlimber13 Kristy’s Twitter Update for: November 10, 2011

Another beautiful morning :) Wish I felt good. Trying 2 keep my eyes open seems impossible. I have way 2 much 2 do! Don’t have time 2 b sick

DAY +183 Happy 6 months BMT to my mighty warrior Liam

Posted on November 10, 2011 by Nana

Kristy’s Twitter Update for: November 12, 2011

Happy 6 months BMT to my mighty warrior Liam. You are truly an amazing, inspiring little man. You bring such happiness 2 my heart I love you 

Another beautiful morning. Liam loves the straw sippy cups he drank so much milk last night out of it he looked like Santa!

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.

Uncle loves you, Little Warrior…

Posted on November 16, 2011 by Nana

 FB post by Uncle Mark Bunker 11:04pm Nov 16
Im am so proud to be able say LIAM is MY NEPHEW! He is the strongest person i know! I love you buddy!!!

DAY +187 Engraftment Test

Posted on November 17, 2011 by Nana
Mysticlimber13Kristy’t Twitter update for: November 16, 2011

Yesterday I was told Liam wouldn’t get his graft checked again until Jan. 2day I was told he wouldn’t get it checked until may.

I got that all cleared up and they are checking it at his next apt. I’m not sure why hospitals do it differently

Six months post BMT

Posted on November 22, 2011 by Kristy

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.

DAY +197

Posted on November 29, 2011 by Nana

Kristy’s Twitter Update for: Saturday, November 26, 2011

Liam has 11 teeth now and is working on 12. They should be checking his graft Tuesday please keep him in your prayers. (about 3 days ago)

How and when should we monitor chimerism after allogeneic stem cell transplantation?

Posted on November 29, 2011 by Nana

How and when should we monitor chimerism after allogeneic stem cell transplantation?

P Bader, D Niethammer, A Willasch, H Kreyenberg and T Klingebiel

Source: http://www.nature.com/bmt/journal/v35/n2/full/1704715a.html

Table 1. Chimerism, definition and implications

http://www.nature.com/bmt/journal/v35/n2/fig_tab/1704715t1.html#figure-title

Next table | Figure and tables index

DAY +199

Posted on November 30, 2011 by Nana
Mysticlimber13 Kristy’s Twitter Update for: Monday,  November 28, 2011

Tomorrow Liam gets his graft tested. PLEASE keep him in you thoughts and prayers for only good results. Thank you

DAY +200 Chimerism/Engraftment Analysis Today

Posted on November 30, 2011 by Nana
Mysticlimber13 Kristy’s Twitter update for: Tuesday, November 29, 2011

Liam has had 2 weeks of no red flags on his blood counts :) we might know the results of his graft test by the end of the week Hope it’s good

Kristy’s Twitter update for: Wednesday, November 30, 2011

You know Liam does not sleep enough when Ryder yells at him I’m tired just let me sleep!!

(about 9 hours ago)

 

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