Monday, May 28, 2012

away

No cell service,

No Internet,

No worries......

This is how the boys and I spent our holiday.

In a cabin,

In the woods,

Atop the mountain......

The smell of a wood burning stove and fresh mountain air, clearing all worry from our minds.

Sometimes, a cool breeze and a bunch of trees........

is just what you need. 


Wednesday, May 23, 2012

Feeling the weight.......

My shoulders have felt heavy. 

I feel like I am gasping for air.

When it comes to Parklen..........I feel overwhelmed. 

Denver has been back and forth with me, still with no certain plan.

A couple of years ago, I was given a meeting with the BMT (Bone marrow transplant) team.  It was one of the hardest things I have done to date.  I was told that often, as a last resort, children with ALPS are given a transplant, It takes months of living in Denver for Preperation and months after the transplant for recovery.....I was also told that with a child like Parklen, survival rates were only 60%  meaning that 40% don't survive.  After the meeting, I did my best to push all of this to the very back corner of my mind.  Since then, I have thought about that meeting only a few times, each time feeling sick and forcing myself to forget again.

When I spoke to Denver on Monday, the Dr. said to me, "We are not quite convinced that its the right time for a transplant."  I was in shock.  Never in a million years did I think we were even close to this point.  NEVER.  I could not believe that this was even in the minds of his team.  I knew that he was worse, but I suppose I didn't think he was this bad.  I was sitting on the phone, thinking about all of his doctors sitting in a room, weighing the options.....my mouth hanging open and tears filling my eyes.

I told the doc, to go ahead and stop thinking of the transplant at all.  Its not happening....not now, and hopefully not ever.   They agree that right now, isnt the right time.....however, it was brought up....It was considered. 

We have to travel down for Parklen's oral surgery in a couple weeks, I am having a meeting with his main doc then......Its so hard that there isn't a plan.  No one knows what to do for sure. 

I haven't been sleeping, instead laying awake thinking, or jolting awake from a bad dream.  I just hate the unknown.  I hate it.  I hate that I am the person in charge of Parklen's medical decisions.  I hate that.....in some way, I hold his future.  I hate that I cant see that future. 

There is a research hospital in Maryland.  They do studies on ALPS, I have been working up the pros and cons of taking Parklen there.....the cons, much more present than the pros.  They aren't offering any different treatments than Denver at the moment......I don't know what the right move is. 

Many of you have been more encouraging to me than you will ever know, the response from this blog is overwhelming....I thank you, and I ask that you would continue to pray. Pray for Parklen, for our family and please pray for me. 

Saturday, May 19, 2012

Graduation......

The past two weeks have been a blur.....There has been so much going on and so quickly.

It feels like it was only yesterday....I took my two year old Paysen to his first day of preschool.  That entire year, every Tuesday and Thursday the teacher's would have to pry a screaming Paysen from my leg.  He never wanted to be away from me......By the time I would pick him up a couple hours later, he was done crying....But it was the same every time.   Now, he is five. 

He graduated from Pre-school thursday.  He is growing so fast. So fast.  He is ready for Kindergarten.  I am not ready for him to go. I want to hold him here, where I am his most favorite person, where his hugs and kisses come freely.....where we are.  I know that helping him grow up is my job, I just cannot believe how quickly it goes by.

This is how he sees himself....pretty cute!


I am so proud of this little dude. He is so smart, so sweet and so much my baby.  I am proud that he declared, in front of everyone at graduation, that the things he is most thankful for are, "The world and Jesus." 

Here he goes.....Past pre-school, and into his summer before Kindergarten. I cannot believe it!

Wednesday, May 16, 2012

no fear

I have been on the phone too much with Denver.  I keep calling, only to hear that they have no new information for me yet.  This annoys me, although I know there is nothing I, or they, can do to change it.  Waiting on test results takes time.......it just takes more time than I like. 

I don't find myself worrying much about the results....instead more about what the next plan will be. Our whole perspective has been changed.....Its crazy how quickly that can happen. What the doctors and us had thought....wasn't the truth.  Although we were sure he was improving......it was quite the opposite.  I keep staring at the pictures...of his lungs, of his stomach and his colon......I cant stop myself.  Like, maybe if I look long enough the disease will melt away......it wont. 

So, what will we do?!!?!?!?  Who knows......even with all my guesses.....I'm not sure. 

After church on Sunday, our pastor and his wife prayed with me......this couple means the world to Devan and I....our mentors.....our friends.  His words have been ringing in my ears this whole week... "Nothing will happen to Parklen that God doesn't already know about."  And although life is scary and sad things happen....this thought brings me comfort.  God knows what he is doing......I may never understand why....but I understand that HE knows why and that's enough for me. 

Paysen had his last day of pre-school today.....how is that possible?!?!?  Tomorrow is his graduation....I wonder if I could cram a few more emotional events into these two weeks!?!?  Ive been stuffing my face with food since I got home from picking him up for the last time........I think I will write about this later.....I just cant do it right now.

Monday, May 14, 2012

Mama's and Anniversary

What a week it has been......I have been walking around in a strange haze since last Thursday. Unable to really feel anything...

  I have two days in a row of celebration this year.....Both honoring one of the best days in my life.  Becoming a mother, and becoming a wife.



Yesterday.....mothers day......was a nice.  My boys spoiled me, I got to spend some time with my mama and sister and I EVEN got a two hour nap......  can't beat it. 


Today is mine and Devan's anniversary......seven years of marriage...SEVEN! It feels so good....not only being married for seven years but being married for seven, very hard years.  So many obstacles have shot our way......and with God's help, we have overcome.  We have stayed married through more difficulties than many people divorce for......and THAT is something to celebrate.  I love Devan....not because of butterflies in my stomach (although he still gives me those) I love him because every morning I wake up and CHOOSE to love him.  And, I have to brag that we have a really good time together......we are both equally nerdy.....and compliment one another perfectly.


I will have a date with my husband tonight.....and truthfully I would be happy just sitting and staring at each other......but I think dinner and a movie sound nice too.......:)

Parklen came home on oxygen....he has to use it every time he sleeps.  Looking at him, in his own bed....attached to an oxygen tank, breaks my heart.  I hate it.  I have fought it for years, I never wanted his home to remind him of the hospital......Things are moving quickly in the wrong direction.....I am trying my hardest to remain positive....but I am finding, that its easier to feel nothing.  I don't have much of an appetite.....not much of any sort of drive either.  It will be a few days until I hear about the biopsies......a few days too long. 

Every time I get home from Denver.....I have to "re-set" my relationship with Paysen......The other night we were having our secret time (where we hide out, away from everyone and talk.)  I asked Paysen what he worried about most in life, he explained how much he hated Parklen being on oxygen....how he hated him being sick.....and then his words cut straight through my heart....."I just don't want Parky to die."  I hate that he thinks about this......hate it.

For today, I will celebrate......My relationship with Devan.......I will strive to not think of "what ifs" and I will continue to pray. 

Thursday, May 10, 2012

A hospital mom

Ok, so I know......Three blog posts in just a few days is NUTS.....but I'm sorry, writing this stuff out makes me feel a whole lot better about everything.....when I'm stressed, I write......

Being a "hospital mom" has taught me many things......about hospitals, about insomnia, about medicine, about doctors, nurses and so much more.

When we are in the hospital (I say "we" because I stay with Parklen, pretty much the whole time) I have a few routines I follow, always.........

No matter how hard the night is.....and they are hard, containing continual wake ups for meds and vitals and check ups..... I always set my alarm for very early.  I get up and take a shower and get dressed like I have some place to go, even if that place is NOWHERE.  I do this at home too....dressing up.  It makes me feel so much better than wearing sweats and greasy hair.  I have to wake up early in the hospital so I can get a jump on the day......Doctors start arriving early in the morning and if you are in the bathroom or out of the room you are out of luck till tomorrow.....if you miss them, they don't usually come back. 

I take notes and remember everything that any doctor or nurse says to me....There are always multiple teams working with Parklen and the only constant in the room..........is me.  I ask a billion questions every day, and don't let anyone do anything with out telling me what and why it is there doing it.  I have prevented a lot of unneeded things because of this.  I treat everyone that comes in the room the same.....they may be top of their field, but I am top of the Parklen field, and no matter how smart or important they are....they are not doing a thing with out explanation. 

I have been practicing assertiveness with kindness for a few years now....Ive about mastered it.  I try to remember that everyone here is just doing their job, so I try to never insult someone by telling them to do it differently.  I use kindness and persuasion to get whats best for Parklen.  There have been a few moments that I completely lost it.....but they are few and far between.  I usually save my frustration for Devan, and vent to him over the phone.....not too fair for him, I know....but I think he gets it. 

I have learned to be careful with information I pass on about Parklen's care- treatments and plans change by the hour......and its so hard to explain to someone that doesn't understand the fundamentals of a hospital.  I will flat out ignore a call or text message until I know that its safe to pass on the info..... 

I have learned that even the best doctors in the world aren't perfect. I was told over three years ago, by Parklen's main Dr. down here, "There is only one God, and we aren't him.....all we can do is the best we can."  I always think of that statement when I'm down here.

I was told today, by one of the operating doctors, that I was really good at being a hospital mom.....to this I say, Shine where you are.  If this is where I have to be, If I have to be the mom of an ill child...then I am going to be the best one I can be. 

Nothing went as it was supposed to today......this is nothing new.  Plans change, schedules change and that's just the way it is.  Parklen went under anesthesia today for a lot of testing......The doctors were looking to see how far he has come in treatment since last year.  All of us had high hopes, that after this long of the treatments he would have tremendous progress.....  I wasn't even worried while I waited during surgery.

The GI doc was the first to break the news......I saw it in his face as he headed my way.  There is a thing about pediatric docs....they deal with sensitive situations, so they try the sugar coating method a lot of the time.  I hate sugar coating....I don't want to live in la la land....I want reality.  As he showed me the pictures of Parklen's colon and stomach I went numb.  Its worse....not even slightly better, worse.  When I asked for honesty he gave it to me.... "I don't know if it will ever get better."  His lung doc was next....same story.  The nodules that he has in his lungs are so bad that they are clustering together....and trapping fluid and secretions in his lungs....they could hardly get through them for pictures.    

This is devastating to me. The progress we've made, it seems doesn't last.  Maybe he just needs years more of treatments before we see progress....maybe we need to try something new.....I don't know.  His main doc is out of town until tomorrow.........so I will speak with him then. 

Parklen had trouble breathing today during surgery.....so we are here another night. 

I know God has big plans for this kid.....I know it.  Sometimes I just wish I could see the big picture. See past this pain........past this pain.   But, I cant....I just have to trust that the one who can, knows exactly what He is doing.



Wednesday, May 9, 2012

ALPS

It has occurred to me, after explaining Parklen's disease to yet another nurse.....that maybe many of you don't actually understand whats going on with my baby......

As I sit here watching him sleep in this hospital room , I thought I should take a few minutes to explain his condition to you......I am always asked, "whats wrong with Parklen?" and Many people have the understanding that he is just sick a lot.  Not the case.

Parklen was healthy up until he was six months old......at that point he developed chronic fevers....coming every day, him being my second child, I knew that this wasn't normal and picked up on the fact that "something" was wrong.  He suddenly had golf ball sized lymph nodes in his neck, this led to him being hospitalized in our home town, there, he was misdiagnosed with Kawasaki's Disease and treated.  We were released from the hospital and just a day later Parklen was much worse.  Our pediatrician instantly felt the urgency to get him to Denver as soon as possible.

I can still remember that day like it was yesterday........Parklen was laying in his bouncer in our living room as we rushed around packing our bags.  He was almost lifeless, his lymph nodes had grown more in size and his eyes left no doubt of how seriously bad he was feeling.  Our doctor had given us less than a half an hour to prepare for the trip.....knowing that at that time Parklen had no insurance, he said we could drive ourselves down instead of an ambulance so long as we left quickly.  The drive down was torture....I remember doing a lot of crying.  I remember the sinking feeling of the unknown.

Once in the Children's Hospital, the teams acted quickly to try and figure out what was going on inside the body of our now 7 month old son.  A CT scan showed that Parklen had an abscess between his spinal cord and his airway....it was so large that, given another day, it would have stopped his breathing.  They prepared for emergency surgery. 

We had brought Paysen along and because of his age, Devan was forced to leave the hospital at that time due to Visiting hour restrictions. 

Here I sat, in the waiting room......my son in surgery, no idea what was going on......in a huge hospital, after normal hours.....sitting, alone.  I cant remember being that scared before that point in my life.  After what seemed like an eternity, the surgery completed and a Dr explained that Parklen had some major complications during surgery.....they were unable to remove the breathing tube and he was in a drug induced coma.  The nurse escorted me to his ICU room.....as I walked in, the breath was literally taken from my chest, there he lay, a million tubes coming from every direction, my small baby...swollen beyond recognition.....about 7 or so Dr's, nurses and technicians rushing around him.  My legs went numb, and a nurse helped me to a chair.

Parklen was in the ICU for a week, with no known cause of his abscess, no understanding of his condition.  There were teams of Doctors in and out every day....puzzled and trying to "figure" Parklen out. 

After being released from the ICU, it wasn't a full day before the abscess returned, another surgery......another coma, another week in the ICU.  These weeks were torture...we were unable to hold Parklen, he was unable to communicate with us...he lay lifeless.....and the doctors didn't even feel comfortable telling us he would be ok, because they didn't know.

It was explained to us that the medicine given for Kawasakis Disease completely alters your immune system and affects any and all blood cultures and tests.  If there was something really wrong with our baby, it was unknown.....We were sent home after a month, and Parklen's first Christmas spent in the hospital,  with a decision of "bad luck" as to the reason for his mishap.

We were home for almost five months before he had another bad scare.  I took him to the Dr. for what I can only describe as a "wheezing" sound he was making.....almost gurgling with each breath.  A chest x-ray showed what appeared to be an enlarged heart.  Again our pediatrician sent us south.  It took only a couple of hours before they declared that the sack around Parklen's heart was filled with fluid....it was spilling out, into his liver and lungs.....in essence drowning him slowly.  He went in for emergency surgery.  Again, Devan with Paysen and me alone....with only my fear and my thoughts.

Parklen went a few months before his next hospitalization.......and a little over a year after his first hospitalization, we found ourselves in Denver again.  Parklen was having his tonsils and adenoids removed.....should have been cut and dry.  We were at a different hospital than Children's....the wait was too long for the surgery and his primary care physicians thought it was super important to remove them as soon as possible.  After the surgery, Parklen was having issues breathing.....they did a CT scan and found his entire abdomen was covered with what looked like tumors.  After praying and following my gut, I asked to be transferred to Children's hospital......The oncology and Hematology teams went into action.  Parklen went into surgery....they took samples of his lungs, gut, bone marrow and even taking a lymph node.  It took over a week of testing and waiting.....then the results.  Parklen was diagnosed with ALPS (Autoimmune lymphoproliferative Syndrome)  The doctor held my shoulder, squeezing tightly as he gave me the news.  I felt numb, it was strange to be so excited about this.  But finally....15 months of Parklen being in and out of the hospital....no one able to explain....we had an answer.  I knew that knowing WHAT, would make it easier to deal with it and move forward.  Devan had started college at this point and so I was alone with the news....staring at Parklen, looking at the doctor and I just began to cry.....

ALPS is a very rare autoimmune disease....the known cases are just a few hundred....ever.  Here's what it does....  Everyone has "T" and "B" cells...when we get sick, these cells go and attack the sickness...after which, they tell themselves to die.  Parklen's cells never get the message to die.  They continue to reproduce and eventually begin attacking Parklen's body through his lymph system.  ALPS affects everyone differently...Parklens disease manifests mostly in his lungs and GI tract.  The inside of these organs looks like cobble stone....he, in turn, suffers from a chronic cough, breathing problems, constant stomach aches, and chronic diarrhea.  Every day he takes a medication that they would give someone who receives and organ transplant....this is to try and slow down the attacks on Parklen's being.  In conjunction with this medication and many other taken daily, he receives IV treatments of Steroids to further slow down these attacks.

There is no cure for ALPS....just managing the symptoms.....There are a good portion of ALPS patients that eventually develop lymphoma.  If at some point, Parklen's quality of life were to plummet below "acceptable"   the doctors would want to do a bone marrow transplant.  This is not something I think about often.....the survival rate it less than 60% in patients like Parklen.  His main doctors have said that there is no doubt that Parklen doesn't know what it feels like to feel "good" and the pain is his norm. 

So there you have a brief (not really.....) explanation of Parklen's health.  There is so much more that has happened and that we deal with, but this is the meat and potatoes. 

Tuesday, May 8, 2012


I have attempted to write this post more than a few times......each time ending with tears on my keyboard and puffy eyes.

Sometimes I find the words so hard to find.....The words that can capture my feelings just right.  I love being a mother, It is all I ever wanted and more......I just didn't imagine the "kind" of mother I would actually be...................

Parklen turned four on Saturday.....this is a fact that I have avoided saying out loud and even thinking.  Its so crazy to me.  Crazy because four is pretty old.....crazy because at one point we didn't know if he would make it to one....crazy because the past four years have been the toughest IN. MY. LIFE.  Parklen's birthday marks a lot of things for me.  Not only do I celebrate the very existence of my tiny miracle......I also reflect on the mountains and valleys that God has brought us through.

My emotions have been a roller coaster the past couple of weeks.....and not a good kind of roller coaster, instead, the kind that makes you barf..... :0)

I am struggling with feelings of failure, the time I have spent dedicated to Parklen's illness is time I have spent unfocused on Paysen.  Paysen has but one week of Pre school left......he is going to start kindergarten in just a few short months and I just cant help but feel like he has been left out, more than he should have been....and I feel like my time with him is slipping away.  My days of being at home with him are numbered and my guilt rises in my throat if I think of this for too long. 

I am struggling with mental and physical exhaustion......God is the only reason I am able to even wake each morning......I am just pooped. 

But for this week, I am struggling most with Parklen.  He is four.  He is growing up.  I am so proud of the success he has had and the trials he has conquered.  He is an inspiration to many.  As we head to Denver this afternoon, for yet another procedure....I am choosing to ignore (for the moment) that there is no end in sight.....for treatments, for procedures, for sickness.  Instead I am going to focus on the very blessing of this human life. 

Parklen, a boy who has been through more than he should have been.....
A boy who is so stubborn,
A boy who loves so hard,
A boy who cries, because its all he can do,
A boy who captures hearts of all who meet him,
A boy who holds a great chunk of my heart in his tiny, maple syrup covered fingers.
A boy who is four.
A boy who is older than some thought he would ever be.

Thank you God for this child.....for the lessons learned through his "being"  for the joy to call him my son.........For the strength you continually give me, to love and care for him beyond all that I see possible.


Parklen loves bugs....I often find him digging in dirt to capture a creature...once even finding him and his brother trying to catch a BLACK WIDOW.  So "bugs" was a natural choice for his Party.

 Here is the "spread" Lots of bug goodies.....




We Ate...played some bug games, opened his gifts and the day ended in just playing!!
Just like any mother would wish, Parklen had a blast on his birthday.....He held tough till that night when he became too sick for fun.  He has been feeling yucky ever since, but God gave him that window just when he needed.....For a while, Parklen was just the "Birthday boy" and not the "sick one"