Thursday, June 26, 2014

How's he doing?

Do you know that feeling you get.....
the one inside, where someone asks you a question....
a question that is frequently asked.


Parklen lost his second tooth....and by lost I mean the dude yanked it out!!

A question that seems simple.....
but the answer is anything but.
Instead........
the answer is in layers........like peeling away at an onion.

This question.....
for me.....
is,
How is Parklen doing?

Could be answered quickly...."good."  or maybe, "bad"
but the answer is never simple.
There isn't a single word that could define his status.
Ever.

There is always worry.
There is always fear.
No matter how big or how small......

Devan is so good at saying "Good."
every time he is asked how Parklen is doing.
Maybe its because he is just great at seeing the things that are good.....
maybe its because it is just easier than trying to explain....
but Parklen can be sitting on the couch feeling fine, or laying in the ICU with a breathing tube and chances are, if you ask his dad how he is doing, he will say, "good."

I cannot do it.
I tend to lean towards silence....
not updating on his status.....
ignoring texts or phone calls....
not because I am trying to be a jerk....
but because its sometimes just too complicated.

I spent years of my life looking at and feeling lymph nodes in my son.
I spent years watching as they took over his body....
years being a witness to the nodes take over and destroy his health.
His disease lived there....
I studied scans full of nodes,
and looked at pictures of his organs that had been taken over by them.
I could tell you if one on his neck changed in size from moment to moment....even if it was just a little.
Chemo killed the disease....
and the nodes disappeared.
I have not seen or felt a single lymph node on my boy since then.

A few days ago I was doing my normal and obsessive exam....
as I ran my fingers down his neck.....they suddenly stopped.
There they were, rested on a pronounced ball beneath his skin.
Instantly my eyes filled with tears.
and my heart sank.

My biggest fear.
The thing that drives the car of my worry.....

Was it his disease?
Was it revving up to show its ugly face again?
Would it?

Of course,
healthy children often have lymph nodes.....

A call to Denver and my mind was mildly put at ease.

He is still recovering from the virus he had....
but he is moving forward.

His counts weren't as high as they had hoped at our last appointment....
but we go again next week....

I constantly feel like I am traveling through life on a treadmill...
walking quickly or slowing down.......speeding up to a jog....sprinting forward....
and yet....
barely moving.

Life for Parklen is still so fragile.
We have come so far....
We have so far yet to go....

A single node is enough to throw a reminder of our past in my face.
Where we have been.....
What we have seen...

Last summer in the PICU
A year ago we were living in a small hospital room....
Parklen was unable to breathe on his own...
He had a hole in his abdomen....
There he lay in a bed hooked up to so many things, on the ventilator....
His health was at its worst.

Last summer after his belly surgery

A year before that....
or two or three....
Visions of trials,
machines,
struggle....
It has been so hard.
All of it.
For six years.
Never will I be able to forget.
Nor, do I want to.

a couple years ago on a Denver trip

After one of his 30+ surgeries

This is how Parklen used to have to chill out at home....Oxygen and IV meds

Because where we have been is what makes where we are and where we are heading so amazing.
I never want to forget what it felt like to watch as life hung in the balance....
I don't want to forget the fear.
The fragility of life then.....and now.
Parklen at about age two during one of his hospital stays

We have big things in store.
Huge plans for Parklen.
We will move forward....
and whether Parklen is good, ok, bad or indifferent.....
it changes every moment.
and we will move on.....one moment at a time.
Always remembering where we were....
Always looking to where we will be....
but never forgetting to appreciate where we are right now.
Because thinking back or forward has every ability to steel what you have today.
Remembering the pain for me, opens up a door of gratitude for every small win....
every single solitary second of life.....
every fit thrown,
every mess made,
every smile,
every tear....
they are here....
but they are all a gift.




So,
the feelings I get from the simple question are deep.....
and the answer is complicated.
But, Parklen is alive....
he is smiling....
he is making mountains worth of boy messes....
fighting with his brother....
creating memories,
and he is living.


Sunday, June 8, 2014

better days to come....

The tests came back yesterday from our trip to Denver a few days ago.
It was confirmed that Parklen is infected with a strain of influenza.


 In fact, he is infected with the very flu that we have lived in fear of for the last 10 months.....it was the one they warned us about before transplant....it was the one that we learned of had and has killed many transplant kids.  Yup.....its that one.

Thankfully enough......they think that he is far enough along after transplant and far enough along in the infection that he is going to be fine.

He feels bad.....but not terrible.  He can still play, and giggle.
He looks rough....but not awful.....


But after all of his results came back it was clear that, as the doctor so eloquently put it, "his immunity sucks."  His counts are much lower than than they need to be to be considered as "recovered."  He is fragile.....this infection makes it more so.
If something else came along in the midst of this flu, it could turn into a really big deal....

On Wednesday, we were given a list of privileges that Parklen could finally partake in.....
the test results changed that.
The privileges taken away.
Were back to where we were.

When I hung up the phone with Parklen's doctor I just felt defeated.
All of the effort put in....
the time spent to protect....
the restrictions....
they had failed.
Because the Henderson form of outdoor adventure comes in the form of potty breaks on the side of the road.


It is a hard thing to understand,
even harder to explain.

Living your life mostly at home.....little freedom to go where you please.
To watch the many social media updates about others and their summer fun.....
To watch your six year old boy as he yearns to play in his back yard.....

We have to be careful.
Vigilant.
We have to keep our guard up high.
We have to continue on the path on which we are traveling.

It has been nearly six years that I have lived this way.....
weary of germs,
fearful of crowds.
Walking the line between safety and fun...

I have always been the one to cancel plans last minute because something came up with Parklen.
I have been the one who people stopped calling......
I have been labeled "overprotective."
I have been labeled a snob.
I have been labeled unreliable.
I have been labeled so many things........

Over time I have just come to accept that I cannot be everything to everyone.
Learned to live with the fact that I am going to let people down.....
That not everyone is going to understand.
and that is harder than I can convey.....

Things aren't normal for us just yet.....
but we have come so far.

Parklen's disease is considered to be in remission.
It is not his disease that he fights now.....
Instead, it is time......we fight with time as we wait for his freshly new cells to multiply.
We are waiting.
That is our fight.
He is fragile because of the transplant.


We may not be moving forward as quickly as we may hope.....
but we will get there.
We will keep fighting as we have been.....


There is something about not being everything to everyone....
I may not be present for many things out in the world....
I may miss out on girls nights and I may not be the first on the list for people to call for help....
but tonight, as I rocked my tiniest baby to sleep....as she stroked my arm with her tiny fingers.....and dug her head deeply into my neck.....I breathed in a sigh of relief....because I know that I am everything to someone.....at least 3 some one's.....

and really....
what else matters?

Here is to better days to come........





Monday, June 2, 2014

Memories

The last few weeks have been very tough......
for the kids.....with seemingly endless colds...coughs and fevers....
for Devan.....finishing up his finals....
and for me........just trying to hold myself together.

Often times, I may appear to have it together....
I may look like I have it figured out.
I may smile....
crack a joke.......
But more times than not.....the inside of me is struggling to match the outside....
My thoughts, my feelings....my worries, they are ever present, ever changing....
God is constantly at work within my mind....
It seems that the moment that one worry is removed....another quickly moves in to occupy its place....

As we prepare to leave for Denver tomorrow, I am flooded with emotion.
I find myself concerned....
worried about whats been causing random fevers in Parklen....
worried because the coughing won't stop.....
worried because, no matter how hard I try.....
no matter which precautions I take....
it hasn't been enough.

I have failed.
I have been unable to keep the sickness out.
Something made it's way past...
Past the barrier of Lysol and bleach......
in spite of the cleaning....
straight through the filtered air....

and not only did it get in...
it has failed to leave.
it has lingered.....
whatever it is.....

As I was listening to Parklen cough this evening, my mind went to another time.....

a year ago.
2013.
We had been going to Denver for monthly treatments and check ups....sometimes we were there twice a month.....
it was our routine.
I had watched Parklen quickly fall into a deeper pit of sickness....
I had held him through tears, and treatments....
and, in spite our greatest efforts....our deepest prayers....he was becoming more ill with every passing day.

Last year....
It was the "June" appointment that changed everything.
It was the 6th monthly visit that turned our life upside down.

Parken was struggling to breathe,
he had been for a while.
With each pull he made for air, his eyes filled with despair....
He could go no longer than a couple of minutes without wearing his oxygen....
He was swallowing over 20 pills a day.
He was spending hours a day, doubled up in pain.....
and we head down to hear the same as we always had....
"Stay the course and hope something improves"

Only that is not what we heard....
instead, it was a trip filled with terror.
I left the appointment full of despair....
as we laid down to sleep that night, my hand never left Parklen's chest.
I drifted in and out of sleep....failing to allow my body to relax.
I could just feel it....
something terrible was about to happen.

The plan was to return early for more infusions.....
as the sun began to poke through the clouds....
my world began to shatter.
Parklen sat up in bed and began to vomit......
for no apparent reason....
and from out of nowhere.
Parklen last June

There I was,
alone in a hotel....
with a 2 month old baby.....
and a small boy who was so sick....
I swallowed my fear,
and loaded the baby and the vomiting five year old in the car.
We drove the few blocks to the hospital and I rushed into the ER.
The frustration began to build as I waited for a room for my son.....
No one could see past his shallow breaths and dipping oxygen levels.....
they failed to listen to my concerns over his vomiting.....
I was all but shouting.... "there is something wrong with his stomach..."

Quickly he was admitted into the ICU.
They worked hard to stabilize his breathing.....
Once he was "under control" things seemed to stand still.
Devan headed down that day and stayed with Parklen that night....
I slept on another floor in the hospital with Paysen and Phinlynn....


When i returned to Parklen's side the next morning I was greeted by news that Parklen's abdomen had been growing steadily overnight.
My heart sank because I knew that my feelings had been correct.

Parklen had a hole in his bowel....
poison was leaking throughout his abdomen....
and he was rushed into surgery.

After meeting with the surgeon, my fears were amplified....
they didn't know what would come of the situation.

That "June" Denver trip forever altered our path in this life.....
One thing led to the next and Parklen ended up in the hospital for a month.....
We left the hospital with a child nearly 12 pounds lighter....
an ostomy bag...
a fragile being....
an uncertain future....

I cannot push these memories from my mind.
They are living there....in the forefront.

As we prepare to leave for our June appointment tomorrow.....
they are there.
Thoughts of days passed....
moments of memories so dark....
Visions of meetings with doctors,
frozen in my mind....
I can see Parklen on the ventilator for the 4th time in his short life....
I can picture his desperation.......
I can see it all.
and the pain is fresh...

As I listen to his cough,
as I peer at the thermometer showing the low grade fever....
and I wonder what this trip will bring.

Pray for Parklen, when you think of him.....
Pray for us.
Pray for our trip....