+23
Today is day +23.
Can you believe that?
Parklen is doing amazing.......
he really is.
He is rocking this so hard.........
I wish it were possible to actually explain how amazing he is doing.
His surgery earlier this week to remove his lines went great and he recovered so well.
He is getting by for now with just the PICC line in his arm and there aren't any signs of infection anymore.
Today he threw up another feeding tube, that stinks.
However, he is doing well enough that if he can eat on his own they will leave it out.
He has a couple of days to show what he can do!!!
Can I tell you that a lot of the kids who go through Bone marrow transplant get nutrition through an IV.....or a feeding tube.
Most of these kids feel sick.
at least at some point.
Parklen's counts are rising.....
quicker than anticipated.
They are on the fast track to where they need to be.
We are so pleased.
It never gets old to watch the doctors enter the room and smile.
It never gets old to have talks that last just a few moments.
I am so used to having a doctor come in,
spending the entire time listening to things that are happening and trying to come up with a plan to get him better.
They don't have much to say past "he looks good."
Its hard to explain how unnerving it is to have calm.
Of course it is what we have always wanted.....
you just get into this pattern of distress...
always just surviving.
Parklen is not surviving............
he is thriving.
I am not watching him wither away,
I am watching him gain strength.
He isn't getting endless treatments every day just to breathe.....
he is losing breath from so much laughter.
He is not stuck in his bed.......
he is up, crazy and enjoying his life.
Can you imagine what he will be like when he can venture outside of the four walls of his hospital room?
Believing that he is going to continue on this path becomes easier every day.
This birthday week so far has been amazing.
I didn't get to see the boys last weekend, but they will be here tomorrow!
I have been blessed to receive people's messages about random acts of kindness on my behalf.
It is so inspiring.
It feels amazing to see people doing things for others!
Keep it up!
I have spent my week reflecting on what I have.
I have so much.
I can tell you I have amazing friends.
Really.
I have a friend who steps in as Paysen's support while I am here.
She takes him to school almost every day.
Picks him up too.
She works with him on homework,
she feeds him dinner.
She spends time making sure he is doing well in school.
She treats him like one of her own children.
Having her in his corner eases so much stress being this far away.
I have a friend who sends Parklen videos of her children and her family...
just talking to him like they were sitting in the same room.
They make him smile.
I have a friend who travels this way about once a week.
After working a long day.
Just to be a friendly face.
Just to make me smile.
I have a friend who is like a sister to me.
She sends me one million text messages every single day to make sure she knows how to pray for me.
To ask how I am doing.
To give me some girl talk.
I have friends who work in the hospital.
They come to see Parklen,
They come to see me.
They bring him pie and smarties.....
They bring him smiles.
They come to hold Phin.....
I have a friend who left her home yesterday before the sun came out.
She drove away from her husband and her four kids.
She came down to give me a mental health day.
She came down to give me a hug.
She arrived with a smile.
She arrived with gifts of food, chocolate, and so much more.
She gave me a wreath for my birthday, constructed out of words from my blog.
She gave me a nap...........
I woke up to find sticky notes all over the apartment.....encouraging words.
She gave me a break from all of the seriousness that comes with the hospital.
Just because.
I have a friend who calls me babe.
The guy I married.
The one who calls and my heart skips a beat.
The person who makes me feel my best.
I have friends that I barely know.
The ones who pray for me.
The ones who care about my family, although we have never met.
I have too many friends to name one by one.....
I am blessed.
As I was sitting with Parklen today my heart was so full.
I was giving him kisses on his cheeks and for the first time in such a long time, I couldn't feel his cheek bones.....I was giving smooches to a chubby little cheek.
I was looking at a boy.
A boy with no hair, sparse eyebrows and hardly any lashes.
I was looking at a boy who was smiling.......
not just with his mouth but with his whole self.
A happy boy.
I was looking at a boy who is loved not only by me, but by all who know him.
Loved by the people who take care of him there.
Loved by the people who have never met him face to face.
I was looking down at a boy that is proving the work of God.
He is smashing barriers.
He is leaping over hurdles.
He is showing people that faith is bigger than medicine.
Getting so excited for the next chapter.
For Parklen,
For my family,
and for me.
Can you believe that?
Parklen is doing amazing.......
he really is.
He is rocking this so hard.........
I wish it were possible to actually explain how amazing he is doing.
His surgery earlier this week to remove his lines went great and he recovered so well.
He is getting by for now with just the PICC line in his arm and there aren't any signs of infection anymore.
Today he threw up another feeding tube, that stinks.
However, he is doing well enough that if he can eat on his own they will leave it out.
He has a couple of days to show what he can do!!!
Can I tell you that a lot of the kids who go through Bone marrow transplant get nutrition through an IV.....or a feeding tube.
Most of these kids feel sick.
at least at some point.
Parklen's counts are rising.....
quicker than anticipated.
They are on the fast track to where they need to be.
We are so pleased.
It never gets old to watch the doctors enter the room and smile.
It never gets old to have talks that last just a few moments.
I am so used to having a doctor come in,
spending the entire time listening to things that are happening and trying to come up with a plan to get him better.
They don't have much to say past "he looks good."
Its hard to explain how unnerving it is to have calm.
Of course it is what we have always wanted.....
you just get into this pattern of distress...
always just surviving.
Parklen is not surviving............
he is thriving.
I am not watching him wither away,
I am watching him gain strength.
He isn't getting endless treatments every day just to breathe.....
he is losing breath from so much laughter.
He is not stuck in his bed.......
he is up, crazy and enjoying his life.
Can you imagine what he will be like when he can venture outside of the four walls of his hospital room?
Believing that he is going to continue on this path becomes easier every day.
This birthday week so far has been amazing.
I didn't get to see the boys last weekend, but they will be here tomorrow!
I have been blessed to receive people's messages about random acts of kindness on my behalf.
It is so inspiring.
It feels amazing to see people doing things for others!
Keep it up!
I have spent my week reflecting on what I have.
I have so much.
I can tell you I have amazing friends.
Really.
I have a friend who steps in as Paysen's support while I am here.
She takes him to school almost every day.
Picks him up too.
She works with him on homework,
she feeds him dinner.
She spends time making sure he is doing well in school.
She treats him like one of her own children.
Having her in his corner eases so much stress being this far away.
I have a friend who sends Parklen videos of her children and her family...
just talking to him like they were sitting in the same room.
They make him smile.
I have a friend who travels this way about once a week.
After working a long day.
Just to be a friendly face.
Just to make me smile.
I have a friend who is like a sister to me.
She sends me one million text messages every single day to make sure she knows how to pray for me.
To ask how I am doing.
To give me some girl talk.
I have friends who work in the hospital.
They come to see Parklen,
They come to see me.
They bring him pie and smarties.....
They bring him smiles.
They come to hold Phin.....
I have a friend who left her home yesterday before the sun came out.
She drove away from her husband and her four kids.
She came down to give me a mental health day.
She came down to give me a hug.
She arrived with a smile.
She arrived with gifts of food, chocolate, and so much more.
She gave me a wreath for my birthday, constructed out of words from my blog.
I woke up to find sticky notes all over the apartment.....encouraging words.
She gave me a break from all of the seriousness that comes with the hospital.
Just because.
I have a friend who calls me babe.
The guy I married.
The one who calls and my heart skips a beat.
The person who makes me feel my best.
I have friends that I barely know.
The ones who pray for me.
The ones who care about my family, although we have never met.
I have too many friends to name one by one.....
I am blessed.
I was giving him kisses on his cheeks and for the first time in such a long time, I couldn't feel his cheek bones.....I was giving smooches to a chubby little cheek.
I was looking at a boy.
A boy with no hair, sparse eyebrows and hardly any lashes.
I was looking at a boy who was smiling.......
not just with his mouth but with his whole self.
A happy boy.
I was looking at a boy who is loved not only by me, but by all who know him.
Loved by the people who take care of him there.
Loved by the people who have never met him face to face.
I was looking down at a boy that is proving the work of God.
He is smashing barriers.
He is leaping over hurdles.
He is showing people that faith is bigger than medicine.
Getting so excited for the next chapter.
For Parklen,
For my family,
and for me.
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