Twitter Updates: December4-5, 2011

I love waking up to mornings like this!
(about 1 day ago)

  • Mysticlimber13

    I go 2 amazon.com 2 buy 2 items =$60.00 I get 2 checkout & they were going 2 charge $30.00 n shipping! They are crazy! I wasn’t paying that
    (about 1 day ago)

  • Mysticlimber13

    Looking at the Kindle Fire does anyone know anything about them?
    (about 1 day ago)

  • Mysticlimber13

    Just watched Water for Elephants. What a beautiful movie I loved it. A hard journey that led to a happy ending. The passion is inspiring!
    (about 2 days ago)

  • Mysticlimber13

    Sleep would be so good!
    (about 3 days ago)

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DAY +200 Chimerism/Engraftment Analysis Today

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

Mysticlimber13Kristy’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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DAY +199

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

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

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

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DAY +197

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)

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Six months post BMT

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.

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Private Practice on ABC aired show with Secondary HLH Story

http://abc.go.com/watch/private-practice/SH559070/VD55153596/the-breaking-point

43:09 | Aired on ABC 11/17/11
Amelia bonds with an 18-year-old as they endure drug detox in rehab.

The main story line is about drug addiction, and intervention.

Cooper is caring a for a sick child named Toby, he is in foster care. He becomes sick with abominal pain, than fever. 

Toby was diagnosed with Lupus which triggered secondary HLH.

Great to see public awareness on ABC about HLH, Thanks ABC.

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DAY +187 Engraftment Test

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.

Mysticlimber13

I got that all cleared up and they are checking it at his next apt. I’m not sure why hospitals do it differently (about 12 hours ago)

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Uncle loves you, Little Warrior…

 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!!!

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

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.

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