Tuesday, October 29, 2013

{zero}

Today will go down in the books as the longest day ever........

Day Zero.
Transplant day.
The new beginning.

We started the festivities this morning at 4:00 AM......After just going to bed a couple of hours earlier, this was pretty early!!!!

Paysen and I headed down to check in for his surgery....you could see the nerves on his face, I could feel them in his tiny hand that I held with in mine..
He had been looking toward this surgery for over a month.
There had been so many delays, I can only imagine the things that were going on in My big boy's head......

He mustered the strength to show a brave face, however difficult.

We checked him in and headed up.
He took comfort in having both parents present for him.
He listened as the "Sleep doctor" told of what she would do.....
as we watched him we could see the clock ticking, he was growing more nervous.

Paysen had a traumatic event in the operating room.
It was the worst thing I have witnessed before a surgery EVER.
I have witnessed quite a few surgeries....always walking Parky back and staying there until he fell asleep......I know what it looks like, I know the right procedure, I know a good thing when I see it.
I also know a bad one.....
I am choosing not to talk more about this right now, mostly because I want to focus on the amazing things that happened today.........I don't want to think about it anymore and I don't want it to be the story I tell.......

Once back in surgery, Paysen did wonderful.  They were able to collect enough marrow for the job, with minimal incisions.....It was what we had prayed for.

Recovery for our Hero went smooth......after a three or so hour surgery, he did much better than expected.

He was sore but smiling.

Not long after making it up to his room he got sick.......
He snoozed for a while and woke up a mellow version of our big P.



All the while that Paysen was being prepped and operated on and taken care of in recovery, Parklen was being looked after by one of his favorite nurses.......they were just waiting. 

The moment that Paysen was wheeled into Parklen's room will live on in the memories I carry with me.....forever.
It was such a sweet moment and such an overpowering of emotion.
There were very few words spoken, mostly just looks.
Paysen took a seat next to Parklen's bed in order to watch as his gift was given to his brother.


As Parklen noticed the pain that Paysen was in, as he studied his brother's IV, as he realized that Paysen had actually just gotten surgery, he leaned in close.  His words came to me in a whisper.... "Mom can we please pray for Paysen to feel better?"  and so we did.

There were many glances shared as we sat and waited for the marrow to come up from the lab.
Everyone was excited and nervous.
There wasn't a lot of talking.

I have lived with fear and anticipation of this day for so long.

I have watched my youngest boy endure so much pain.
I have watched in complete helplessness as he has suffered......helpless in every way, except my ability to pray.
I have watched with nothing to offer him besides a comforting touch and faith.

Today I watched as my eldest child, my special and crazy wonderful son gave a piece of himself for his little brother.

As I think back over the past five years, I can see every moment like a movie trailer....they all flash by quickly but oh so vividly.....the tears cannot be stopped when I think about Parklen's life up until now.

What hurts the most comes later..... 
When I take the same images that I see,
when I put those images on and imagine them through the eyes of a two year old, a three year old, a four, five, six and now seven year old.....
To think about how awful things have been to me as Parklen's mother, and then realize the horror that the past five years have undoubtedly been for Paysen.

He has watched Parklen every step of the way.
He was just barely two years old when we started this journey.....can you even imagine?
The things he has witnessed.
The pain he has seen.
All happening to his little brother.
The best friend that was born after him.
The tiny boy that he knew he was supposed to watch out for and protect....and he has never been able to stop any of this.

Today, Paysen made more a difference in Parklen's life than he may ever realize.
He made a huge difference in mine.

Often times things end up being all about us.
It is hard to focus on anything past the tip of our noses.....
We get caught up in our every day problems.

How amazing is it that my seven year old donated life to his brother.
Gave himself away so selflessly.



Finally, I watched as the cooler arrived....followed by a handful of nurses and the doctors overseeing Parklen's care.

I swear it felt as though my heart stopped. 
It was time.

The problem with Bone Marrow Transplant is that it is quite anticlimactic.
You do this horrible preparation and testing all to sit in a bed and have it pushed in through your line with out feeling a thing.  There is no BAMM....there is just a simple and nice infusion.

We all watched as they started the infusion.
The room was full.
Us, doctors, nurses......
we watched.

It went perfectly.
Smooth.
and then, it was done.


A friend brought Parklen his request of Pumpkin pie, and the boys celebrated with a slice.......a slice to a new life.

Paysen is sucking up the attention.....and he deserves every second of it.
He deserves so much recognition.
He has surpassed all the expectations that I ever had long ago, of my future children.
One day, I have faith that the boys will look back on this day.....look through the hundreds of pictures I took and remember.....they share a bond like no other.

Paysen gave a gift that no one else on this earth could have given.
A matching sibling donation of his bone marrow.
A small bag filled with life.

What a blessed day.
What a day filled with miracles.
What a wonderful gift I have received as the mother of two of the world's greatest super hero's.




My boys are finally both tucked in.
Each in their own hospital room.
Right next door to one another.
Neighbors.
Brothers.
Best friends.
Blessings.

Monday, October 28, 2013

{-1}

Today is the last day before the transplant..............

It was a very strange day...........

I felt like I was walking through a haze.
I am sure it was my minds way of dealing with the anticipation.

We sure have come a long way since his first hospitalization..........
It is strange to think that he was the exact age that Phin is right now when he first showed symptoms......



He was so small.
He still is.
Such a brave boy.
Such an inspiration.
Full of courage.

I had a chance to do something today.
An amazing opportunity,

They usually have to give the donors a pint of blood after surgery, because of all that they take out.
I was able to donate a pint of blood myself,
for them to give to Paysen.


I really cant explain the feeling it gave me....
I felt like I was actually doing something for my child.
It was a chance to physically give of myself.

I could have just let them give him blood from the bank.....
Parklen gets it all the time,
It is safe.

But they gave me the option and I was so excited to take it.

Fast forward to the actual donation................
Piece of cake,
until I tried to get up.
I almost passed out,

My blood pressure had dropped too low.
They wouldn't let me leave.
I had to sit and sip Orange Juice for close to an hour as they continued to check my blood pressure.....
I was embarrassed.
I spent a lot of time trying to defend myself.....
Making sure they knew I was no wuss.....
that they knew I had given birth three times drug free.....
They insisted it was the added stress of the situation that caused me to become faint....

Either way,
I made it through.
I gave of myself for Paysen.

Paysen is more nervous about things than Parklen.
he has to check in at 5:30 tomorrow morning.....his surgery is scheduled for 7:30.

What I hero I have raised....
a boy who, although so afraid, is willing to give a piece of himself to his brother.....

His main comment has been..... "I hope Parklen doesn't take ALL of my sweet dance moves."

Parklen will recieve the marrow sometime tomorrow afternoon.....
When it is finished being processed.
He will just recieve it through his central line....
will be awake the entire time and Paysen will be able to come in and watch as it happens...


And so.....through a hazy fog we close the curtains on this day.
Shut the blinds on this portion of our life....
We, as a family....look forward to tomorrow.
Forward to a new day.
Forward to the beginning of Parklen's new life.

God be with Parklen, with Paysen....with us all.




If you are interested..............a whole group of people are dressing in super hero clothes tomorrow to support the big day.....If we aren't friends on Facebook you can snap a picture of yourself and email it to me here. Include your location with your picture and I will share them with the boys!!!!  I know we are receiving prayer from all over!!!


Sunday, October 27, 2013

{-2}

Lately it has felt as though we were not going to have many great days for a while......

Today was, by Henderson standards, a great day.

Parklen felt overall, very well today. (They have informed me that the chemo makes the kiddos really sick about a week after it has begun and this is the honeymoon period.)

There were a lot of smiles,
a lot of giggles.....
some naps......
a dad....
a brother and sister....
There were games.....
lots of food eaten.....

Lots of talking about Parklen's future........decsions made on places he will go.......

My heart skips a beat when I think about the short time that stands between us and day zero....
We have been waiting with anticipation,
Praying for the time to come....
Looking.
It is almost here.

Parklen doesn't hate his baths any more......
I suppose the million that he was forced to take kind of broke him in.......

Tomorrow is another day of anti rejection drugs.....
another day of prep.....
another negative day....the last one....

What a wonderful thing it will be to use a plus sign before the days.....

Did you have a great day today??
By what standards do you measure?
by smiles and giggles?
or trials and hills?

Saturday, October 26, 2013

{-3}

Day -3.

It was a day of highs and lows......

Parklen did better than expected through out the tough drug that finished up today.
He had reactions,
but they were prepared for the worst....
the worst never came.

This evening he received his last dose of actual Chemotherapy.
Ever.
That is a high.
Tomorrow he starts an anti rejection drug.....used to help prepare his body to accept his brother's marrow.

He feels bad.
Sad.
Angry.
Frustrated.
Sick.
Cold.
Hot.
Hungry.
Unable to eat much.

and then he feels...
Happy.
Excited.
Giggly.

He is riding a roller coaster of which he has no control......
and neither do I.

I can only do my best to meet his needs and find him comfort.
Most of the time, my efforts fall short.


He mostly just wants ME.
There is something to be said about being someones everything.....
Just holding him in my arms seem to calm his spirit.

Because of the coming transplant and the hardships of chemo being in the past,
the doctor suggested that I get out of the hospital a few times a day and sometimes overnight....
Can you imagine?
I have spent 5 years with this being my load to carry.....
Five years of rarely leaving his sight....
I have never spent more than a couple nights away from his bed side in that entire time......
and only if he were well taken care of.

His reasoning is sound.
If I run out of gas,
he will not feel comfortable releasing him to me when he is ready to leave the hospital.
It doesn't make it any easier.
There are a few nurses that I trust so much....
enough that I consider them friends......
When one of those nurses are working,
I am able to force myself out of the door....
Handing the baton over to my mother.....
I honestly do not sleep.....
I mostly just worry....
but I will admit that the very change of scenery is enough to refresh me a bit.
I am away tonight....
It was hard to leave Parklen, who did not want me to go....but I had to choose whats best for the long run.
I am here at the apartment with Paysen, Phinlynn and Devan.
Feeling the ever present tug at my heart for my boy who lays in the hospital.......
looking forward to the morning....
to the future....
to health,
to more smiles and less tears.....

Today is Saturday...
Transplant is Tuesday....
The time is drawing near.....

Friday, October 25, 2013

{-4}

Today was better than yesterday in many ways.
Harder in some.

Parklen had a very emotional day.
The drugs are beginning to effect his mood.....

Parklen has done better than expected with the chemo......
I'm counting that fact as prayers answered.......

He had a skin reaction to the Chemo drug that caused so much fuss yesterday.....
this is something they were expecting....something that happens to most patients on this particular drug.



He spent most of his time crying, yelling, sleeping, and...................crying.
 All while having spots..........

Four days until day zero......
It seems like time is standing still and moving forward at rapid speeds......

Devan will be here tomorrow,
We cannot wait.

I am not sure if its just because he is so nice to look at,
or because he is crazy enough to make me laugh at the most inappropriate times,
or the simple fact that he is my best friend.....
but having him hear makes everything a little easier.

........heres to tomorrow.

Thursday, October 24, 2013

{-5}




Today is day -5.
Today was rough.

There is five days left until transplant......
five days.....

The new med that they started today was hard....
We're talking, the nurse didn't hardly leave the room for the entire shift.....
He had ups and downs...
Mostly downs.....

There was a point today where Parklen's breathing caused enough alarm for the nurse to push the help button.  I watched as the entire floor worth of nurses and doctors ran down the hall towards my baby's room.

He was ok.

 But he scared us.

There was another point today where he was shaking horribly bad......
couldn't stop if he tried....

The doctors were close by for the entire day.
My stomach was in my throat for just as long....

Chemo.
Poison.

Paysen has lost his cool.
Today I watched as he tried to tackle the Chaplin.
Later, he layed down in the middle of the halway, refusing to walk...throwing a fit.
He is becoming more unlike himself every day.
He broke down and expressed his fear for his brother....
     "I dont want to see him sick anymore."
     "What if he never gets better?"
     "What if my bone marrow cannot fix him?"


I don't have much else to say....
mostly just that today will go down in the books as day -5......and also as a day I don't want to remember.

He isn't out of the woods yet.
This new drug runs again for the next two days.
He could still show some signs of distress yet this evening....

keep on praying....
Lift Parklen up.
Pray for his mama, who is growing so tired.

Pray for a miracle....
and for Parklen to surpass all expectations.
Pray for Paysen, who is too small to be so worried.....
Pray for Devan, who fights a hundred battles himself.......
Pray for a renewing of my strength.....and abounding grace to carry this load.....




Wednesday, October 23, 2013

{-6}

Get ready for a whole lot of blogging.............Isnt this number two just TODAY?!?!?  ummm yes, yes it is.

It is my favorite way to communicate the happenings with Parklen and everyone else.......





Today was day -6.
It was a tough day.
Not a bite of food has passed through Parklen's lips.
He felt sick almost the entire day.
Slept a whole lot.
Cried some too.

The around the clock baths have continued....
Each one gets a little harder for my boy....
and for his mom.

It breaks my heart each time I must put on gloves just to touch him.
It hurts his too.....

Of all of the days of Chemo....
They say tomorrow will be the toughest.....
After today, I am trying to prepare.

None of this is easy......
Quite the opposite......
It is hard on us all.....

Each time Parklen falls asleep he wakes up to ask if he has lost all of his hair....
He is not looking forward to that part.....
The cutting of all of our hair has lost its shine.....
The delays we have had have rendered longer locks on us all.....

Today he started two new drugs....
Lots of blood draws...
Lots of nausea......

Because of Parklen's existing stomach issues, they have predicted that he will suffer more severe nausea....

Tomorrow is going to be hard......
He will start another new drug....
One that they aren't sure how he will respond to.
They wont be going far from his room tomorrow just in case something arises.....



Six months.......

 I always dreamed of having a daughter...............
 I never dreamed that having one would change my life so much..............


Half a year spent as this baby's mother..........



 I thought that having another baby was going to make life more difficult.......
That the timing was not right......
Instead it has made the life we had full.......
and wonderful...........


 Phinlynn Jace, you are the unforeseen blessing that I will be forever thankful for...........
God's timing is never wrong......
You have brought light to so many difficult things in your short time on this earth.........
 You are my best little buddy.......
The gal who can melt my heart with one smile....
The tiny human that keeps me from sleep but makes me happy to be awake with you.........

 You bring smiles to each and every person who sees you.....
Strangers cannot pass with out commenting on your beauty and your smile......
I will never know what we did before we had your tiny light shining in our family.......
I cannot believe that you are 6 months old......
It has gone by so quickly and yet......
as I think back it feels as though you have always been in my arms.......

Tuesday, October 22, 2013

{-7}

Today was day negative 7.....that means 7 days until transplant..
Today began Parklen's new journey, his journey towards health.
Today was the first day of Chemo.....

If I could explain the nerves I experienced in the days leading up,
If I could really make you understand what has been going through my mind....
If there were a way to show you EXACTLY what I felt in anticipation of today,
I am sure that you too would feel nauseous, sick, and afraid.

All of the hype....
lead to a pretty uneventful day.
He received his first dose of Chemo as planned.....
he will get his second this evening.....

He began with a drug that is excreted through your skin....
Because of its toxicity he cannot have any tape on his skin....he had to get rid of the feeding tube for a few days, and he cannot have tape over his central line.....So he is trying to drink extra shakes for nutrition and using a netting around his chest to hold a sterile gauze over his site.....we call that his tube top. :)

Because of the excretion, he is required to take a bath every six hours on the dot....around the clock.
Do you know Parklen?
Do you know that he hates to bathe??
So, we assumed that this would be no easy task....
The first bath today went with out a hitch....and even a couple of smiles....
of course, having Batman present for the scrubbing doesn't hurt a bit.
Lets hope that the Dark Knight can make the late night and early morning baths just as great.....
I mean what could be hard about waking a five year old up at 10 pm and 4 in the morning....
forcing that sleepy child into a tub and scrubbing down their already sore skin.....sounds fun eh?
After every bath, the nurse must clean his line and re-dress the site....it must remain sterile


Another fun fact about Chemotherapy and bone marrow transplant is mouth care.....
Mouth sores are very common in kids going through this process and so they do all that they can to try and prevent them.
Parklen has mouth care three times a day....this consists of brushing, using an anti fungal, a mouth wash and chap stick......the entire mouth care routine takes a little over 40 minutes.....
Did you know Parklen hates brushing his teeth????
His mouth has always been sore and brushing has always been a fight.....a necessary but awful fight...
Parklen did wonderful with his mouth care today.

Tomorrow Parklen will start two more chemo drugs......with different side effects.
Tomorrow will worry about itself....
I am choosing to smile this evening....
Smile because there is not a doubt in my mind that God is at work....
Smile because the many prayers being said for Parklen have been shown....
Smile because that's exactly what Parky did up until the moment he just fell asleep......
Smile because the fear of the future is too heavy.....
it feels better to smile than to cry.....
Smile, Smile, Smile.
Think you have troubles???
I know that I often do,
but when I think of Parklen.....the things he has gone through, even just today.....
when I think about his little grin,
its hard to concentrate on anything but blessings.