DAY +121 Happy Birthday Liam

Mysticlimber13

Happy 1st Birthday to my little warrior Liam. You’ve fought so hard and your strength inspires me. Mommy loves you & feels so blessed.

 

Posted in Liam's BMT updates | 3 Comments

DAY +120 Liam is one year old tomorrow

We feel so blessed that Liam is turning ONE tomorrow. I will post some pics when I can.

We are waiting for the skin biopsy to come back. Praying that it is not GVHD… Their is such a fine line with GVHD, if they see none then the worry that something is wrong. And if they see GVHD it indicates that donor and host cells are fighting. I seen Liam this morning the rash is very faint today.

He has a clinic appointment today in Portland, will try to post updates as I get more info from Kristy.

Kristy got a call yesterday that the last NK function test done is still showing low. I’m not sure what that means. So many unknowns thru this process. It is so hard at times. Please keep Liam & Family in you daily prayers.

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DAY +119

Kristy’s Twitter Update: We still don’t know the results from the skin biopsy but today his rash looks a little better. That was not fun and he has stitches 🙁

Posted in Liam's BMT updates | 2 Comments

He is my Son – By Mark Schulz

Song Grandma Terri found

“He’s My Son”

I’m down on my knees again tonight,
I’m hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I’ve done all that I can do myself
His mother is tired,
I’m sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he’s not just anyone, he’s my son.

Sometimes late at night I watch him sleep,
I dream of the boy he’d like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He’s so tired,
And he’s scared
Let him know that You’re there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he’s not just anyone, he’s my son.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he’s not just anyone.

Can You hear me?
Can You see him?
Please don’t leave him,
He’s my son.

Posted in Inspirational Songs | Comments Off on He is my Son – By Mark Schulz

If God could just take all this away……

Today we went to the doctor knowing that the rash could be GVHD but the hopes that maybe it was just nothing seems far fetched. Tomorrow we go in at 9:00am so I can hold my baby boy in my arms why they take a piece of his skin. At times I wonder how much more I can take and what Liam must be feeling. The pain never seems to end along with the struggle. I find my self taking deep breaths all day long and trying to keep myself calm. Everyday I wake up I hope that Liam will be o.k.. It seems just as you get your feet under you yet another unknown path comes along. I try to just walk without struggle but that’s not possible. If I could just take Liam’s place I would. It’s the hardest thing for a mother to have to sit back and know a bandage, kiss, hug, or time will not heel this. I know this is a bump in this very long road but I hope the end is felled with happiness and relief.
Liam’s labs look good and he is still gaining weight. All good things to focus on. It is a struggle to keep your chin up. But what else can I do.
Thank you for all the live and support. I don’t know what we would do without it.

For parents going through a BMT Liam’s rash started on his forehead it was red and dry. It looked like eczema but then it started to peel like a sun burn would. Then it spread to his back it came in patches on Liam. Now it is moving to his arms and legs. You can also see little red spots by it. It does feel rough to the touch and very dry. Any rash should be followed up by a physician and most likely should have a skin biopsy done. If it is GVHD they should start the child on topical steroids and check for GVHD in other parts of the body.

Kristy’s FB comment: Kristina Smith GVHD is were Liam’s and Hunter’s cells are fighting it out. It’s like a war going on inside Liam’s body. It starts with a rash and can go to other places in his body.

Posted in Liam's BMT updates | 2 Comments

Strong Enough by Mathew West


Read more: MATTHEW WEST – STRONG ENOUGH LYRICS http://www.metrolyrics.com/strong-enough-lyrics-matthew-west.html#ixzz1XHwhSdK3

Copied from MetroLyrics.com

You must
You must think I’m strong
To give me what I’m going through

Well, forgive me
Forgive me if I’m wrong
But this looks like more than I can do
On my own

I know I’m not strong enough to be
everything that I’m supposed to be
I give up
I’m not stong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
Strong enough
Strong enough
For the both of us

Well, maybe
Maybe that’s the point
To reach the point of giving up

Cause when I’m finally
Finally at rock bottom
Well, that’s when I start looking up
And reaching out

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up
I’m not stong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
Strong enough
Strong enough

Cause I’m broken
Down to nothing
But I’m still holding on to the one thing
You are God and you are strong

When I am weak
I can do all things
Through Christ who gives me strength
And I don’t have to be
Strong enough
Strong enough

I can do all things
Through Christ who gives me strength
And I don’t have to be
Strong enough
Strong enough

Oh, yeah
I know I’m not strong enough to be
Everything that I’m supposed to be
I give up I’m not stong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
Strong enough
Strong enough
Strong enough

Posted in Inspirational Songs | 1 Comment

Praise You In This Storm lyrics – Casting Crowns

Praise You In This Storm lyrics
Songwriters: Hall, Mark; Herms, Bernie;

I was sure by now
That You would have reached down
And wiped our tears away, stepped in and saved the day
But once again, I say, Amen and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain, “I’m with you”
And as Your mercy falls I raise my hands
And praise the God who gives and takes away

And I’ll praise You in this storm and I will lift my hands
For You are who You are no matter where I am
And every tear I’ve cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry, You raised me up again
But my strength is almost gone
How can I carry on if I can’t find You

As the thunder rolls
I barely hear Your whisper through the rain, “I’m with you”
And as You mercy falls I raise my hands
And praise the God who gives and takes away

And I’ll praise You in this storm and I will lift my hands
For You are who You are no matter where I am
And every tear I’ve cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

And I’ll praise You in this storm and I will lift my hands
For You are who You are no matter where I am
And every tear I’ve cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm
And though my heart is torn
I will praise You in this storm

[From: http://www.elyrics.net/read/c/casting-crowns-lyrics/praise-you-in-this-storm-lyrics.html]

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DAY +117 Clinic appt. today-Skin Rash

Mysticlimber13

Kristy’s Twitter updates: Liam woke up with a rash all over his back & forehead. I’m hoping it is not GVHD but I think it is.

Mysticlimber13

We have an appointment today hopefully we will get the rash figured out. Keep my little warrior in you prayers. 🙁

Mysticlimber13

We have 2 come back n the morning for a skin biopsy It is spreading & they 2 think it is GVHD I just hope the skin is the only effected area.

Mysticlimber13

It’s not fare that any child should have to fight so hard. I often wonder why but I will never get the answer nor will I ever understand.

Posted in Doctors Appointments, Liam's BMT updates | 1 Comment

Liam’s Skin Rash Photos

Liam woke up with this rash this morning……

Click on photos below to enlarge

    

    

    

Kristina Smith
We have 2 come back n the morning for a skin biopsy It is spreading & they 2 think it is GVHD I just hope the skin is the only effected area

@Mysticlimber13 on Twitte

Posted in Liam's BMT updates, Photos | 2 Comments

Prayers for Ashtyn

Seen a FB comment today from a friend her daughter Ashtyn is in need of prayers. She had a Bone Marrow Transplant for HLH. She is now in the hospital.

Please say a Prayer for Ashtyn…

Her story: http://www.cincinnatichildrens.org/health/yh/archives/2010/fall/hlh.htm

 

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