CHRISTMAS 2012

Liliana had a school friend over yesterday and this friend must’ve told her mother that we didn’t have a Christmas tree and that our home was, apart from paper snowflakes the children made, bereft of any Christmas decorations, because we came home from a friend’s house to find a tiny Christmas tree by the door of our garage.

Christmas this year is less something that is celebrated and more something that must be endured; it is a project; a term paper due in a day and the only thing written is the reminder that it is due.  This tree is symbolic of the notion that, although it can be ignored, it cannot be forgotten.  This tree stands as a symbol of the community that continues to rise from unexpected places to help us stand during this, our worst of all, Christmases, and remember that there is still love and hope in this world.  Even for a grumpy, angry, and depressed old man and his scarred but still perfect family.

There is an unwillingness to accept that there is still hope and still a future yet I continue to seek, reach out for, and drink of, the random charitable offerings.  I look at this tree and I feel two opposing views as to what it can represent.  There is the thought that this tree pales in comparison to our trees of the past, to the happiness of other Christmases, and proves more as an irritating reminder that this Christmas is horribly painful and a weak attempt at happiness.  With very little effort, however, I force myself to live inside the caring thoughts of a little girl who saw our emptiness and felt the need to fill our void.  This is how I shall look at this tree.

****** THANK YOUs ******

Thank you to Liliana’s classmate.  We are thankful that your Christmas spirit is big enough to share for we have none.

Thank you to whomever left a living Christmas tree, beautifully decorated with origami, on our doorstep this morning.  Thank you for caring and putting smiles on my children’s faces.  

Willem the Keystone

Happy Willem Memory:

Around 2006, I imagine, Willem and I were walking through the woods of a nearby park. He was wearing my Desert Storm boonie cap and I was teaching him how to move tactically through the woods – identifying danger areas, how to signal to me that there were people and how many, how to crouch, when to move and when not to, etcetera.  Before long, we just explored and pretended to be deep into an unknown wilderness. He loved the woods. He was five.

____________________

Our family dynamic is terribly fractured by the loss of Willem.  It’s as though Willem were a keystone in an arch, our arch; an arch that included mommy, daddy, Wyatt, Lili, and Em and Ba.  We have a broken arch that’s trying to hold up broken pieces of the rest of us and failing – we’re just crumbling and falling as the weight of the holidays crushes and as time steals resolve. 

Apart from the paper snowflakes that Lili and Wyatt made, our home is bereft of any Christmas decorations. Lili and Wyatt deserve decorations and to enjoy Christmas in all its splendor but it’s just not Christmas without Willem and I’m not entirely sure it ever will be again.  We tried to make a stocking for Willem last night but the project failed (the details of which are a tragedy in itself) and the ruined stocking was relegated to the trash.  Lili began the chorus of tears and Wyatt simply went numb, quiet, and left the room.  We are not sure whether to take it as a sign to stop – we’re just not sure what to do. We feel guilt in not having some physical representation of Willem in our (celebration?) of the holiday. We’re just terribly empty and hurt.

My father brought over a book for me to read: Taming the Tiger Within: Meditations on Transforming Difficult Emotions.  I must give my father some credit: He knows I am angry but he remains calm, in the periphery, and keeps trying.

***** THANK YOUs *****

Thank you to my brother Michael who continues to hold me up and shield me with his intellect and much needed wisdom when those who would oppose me sling their arrows.

Tim and Sheila.  Thank you for your generous gift.

Thank you to those that are still reading and caring.  

Joy

Happy Willem memory:

One of our first walks together...  A simple walk on the sidewalk, holding hands, he was at a walking age but not quite talking age, just walking, both of us quiet.  Willem broke the silence with some form of a baby-like "whoa" as he bent down to pick up and marvel at a decayed leaf in the sidewalk; my first memory of his love of nature.

_____________________________

Someone very dear to me asked me this evening if I find any joy in my life (still).  At first I was a little surprised that this person didn't already know the answer and then I thought that maybe he did know and was simply trying to get me to reflect to make sure that I know.  He's tricky that way.

So... Yes... I do still find joy in my life - every day - and when the joy happens I attempt to store it for future use; for when the darkness comes.  When I fall to the bottom of the well, I always seem to fall with a little bit of Liliana's beautiful smile and a few of Wyatt's snuggles and reminders of Erin's strength; all of which conspire to form a way back -- a way out of the well.

There is, as should be expected, darkness and sadness all around me and I have failed to inform the reader that I still walk with light and tidbits of joy with me.  For example: Liliana and I played a little art game last night whereby I would draw a random object (in this instance, a circle) and would, then, hand the paper to Liliana to expand upon.  We took turns drawing objects and, without communication, turned our nothings into somethings -- somethings that became familiar. I made a rule that we had to have a pretzel rod in our mouths to draw.  Don't ask me why.  Random silliness I suppose.  This moment of joy will go in my pocket and I will use it whenever I need it.  I have a trailmix of joy in my pocket.

Yes... Yes I am sad, angry, depressed, disputatious, confrontational, and many other things, but I still find joy.  I still smile.  I still laugh.  My previous post is nothing more than the result of pressure, time, and a lack of proper maintenance causing a break and the resulting release.  It is me screaming at the bottom of the well, to the slippery walls, to the nothingness at the top of the well, screaming that I am still here and I am still in an immeasurable amount of pain and I want out of the well.

So rest assured that when I see your face I find joy.  Know this.  Your face brings me joy.  You ask me how I am doing and I tell you that I am "okay" and you know that I am not but your face, and the fact that you are there, the fact that you still bravely ask me how I am doing (because you care), brings me joy.  Dangerous thoughts linger but they are no threat -- they are just thoughts and they must be normal because I am normal.  And I hurt.  I am strong, reader, strong enough to endure this, and every setback (even the darkness), because I am fortunate to have many positive people and situations swimming very near to tell me that it's going to be okay.

Becoming Friends With Dangerous Thoughts

Struggling to find positive images. Struggling.  Being overwhelmed of late by anger, by guilt, and the pain that comes with both drag me nearer to a "permanent solution."  I care less and less for the world around me.

No longer do I view those that have given up in the face of adversity as quitters for I have come to know unbearable pain.  The holidays have cut at me too deep -- sadness and despair stand close by to twist every smile and warp every brief moment of happiness into guilt.

My parents, too young and unprepared, in their lust and haste, created me too early, accidentally, alone, and without a sibling.  Shortly after, they left each other, and, in my mind, abandoned me too.  They didn't leave me to my own devices -- they just became absent. Delinquent. Deficient.

I wanted so badly to offset this neglect by creating a larger family; A close family. A family where husband and wife stayed together... A family where the oldest guided the younger.  My oldest, Willem, my clone... my better me... who had everything I didn't, died, and just about all of me with him.  My dear son.  My first-born.  I ache.  I ache so terribly, so immeasurably, and feel myself slipping deeper into the abyss where reason fades with the light and then dies.

A glass of water and a blend of leftover sleep and anxiety aids lay untouched and promising.  Few would understand.  Many would curse the cowardice of leaving behind a wife and children and at one point in my life I would have done the same.  But now I have lost, and now I understand the absence of reason, and the magnitude of loss.  Understand now how color, sound, and taste no longer captivate as they once had.  Understand now how wonder wains, and how nothing holds as much splendor anymore.  Understand now how absolutely pointless it all is...

I am now in a battle for my life: A battle I must fight every morning. Every day. Every evening.  A fight to find purpose every day.  To remember why I must keep fighting to live.  Tonight I don't want to but tomorrow I might want to live just a little longer and I try so hard to remember that there are good days.  I fear, however, that darkness is winning.

Unable to Write

Obviously I have not been able to write.  In fact, I have not been able to much of anything actually.  The air is thick and it's difficult to breath.  Walking through life... I might as well be trudging through mud.  Nearly seven months have passed and I can see it in their eyes and in their actions; I can hear it in their voices... The world has moved on and grown weary of my misery.

I can't write about Willem in the way that I had promised.  No power. No will.

I press my face in to the cold glass and hold it there; I kiss it.  Eyes wet, I lift my face and stare at his photo.  I miss him so much.

Convergence

One year ago today Willem began feeling ill.  He went to bed complaining of muscle aches and we shrugged it off -- reasoning that it was a result of the running around he did during the family day at my unit.  But alas; it was not... It was the beginning of our family's hell.

As I have mentioned, I am committing myself (as much as I can, and, at least for the now) to continuing this blog.  I also mentioned that I was going to attempt to begin a new story; a story of Willem's life and what it was that made him so special to us all.  I cannot now promise that I will ultimately achieve this goal yet I can promise you this: you will come to know Willem if you so choose.

To begin my movement toward this goal, I have decided that the best time to tell the story of Willem's beginning is this very day: at the one year anniversary of the very moment I feel his health began to decline and ultimately take his precious life.

I feel it necessary to throw in a disclaimer here:  From this moment forward this is now my journal and my thoughts and feelings, however inappropriate they may be perceived, will pour out.  Uncensored.

Touching and So Very Sad

Liliana wanted to know what was was in the box that looks like a book.  We told her that the box contains Willem's ashes.  Not long after, and the house very quiet, I encountered this touching and very sad moment.  Through trembling hands and blinding tears, I endeavored to capture this image.

This is my attempt to continue the blog but speak less of our pain and daily unbearable suffering and more of Willem's good days and what it was that made him so special to us all.

I have been told, by those who love and know me, to keep writing.  I will try.

FIRST DREAM

Willem's dying body lay in my arms and I find joy in running my fingers through his hair and he speaks to me.  I smile and find an immeasurable amount of joy in realizing that, hey, Willem isn't dying after all; he's got long hair where once he had none. He's getting better!  There's hope again and my boy will be fine!

And then I awaken.  I awaken with the taste of joy still fresh on my tongue and the horribly bitter taste of reality quickly follows.

One deep sigh and a small tear in its wake.

Monday, May 21, 2012... I want so badly for my heart to fail -- anything -- I do not wish to live.


But I have to.  I have to.

Wrung

There is a pain involved with giving away some of Willem's possessions:  The pain is usually offset, somewhat, by the joy in the faces of the children receiving the item.  I was walking down our street with three pillow pets in my arms when three neighbor children yelled, "hi" to me from behind a fence.  I, on a whim, asked if they wanted a pillow pet -- they screamed in delight as they ran toward me; one saying that she's never had a pillow pet.  I asked only that they take good care of them.

The effect of of giving away that which is part of Willem, to those who are brought such great joy by the gift, is much like that of a soaked cloth being wrung dry; one effect nearly negates the other. Nearly.  

I feel a tremendous amount of guilt in reallocating Willem's possessions but I hope - I hope so very much - that Willem is somewhere, watching me, saying, "Nicely done daddy.  Nicely done."

HUMBLED

Humbled.  Truly, and, unequivocally, humbled.  These are the words I have for the Celebrating Willem fundraiser held on April 19, 2012.  There is much that need be said, and many that need be thanked. I do not wish to make light of the fact that money had been raised by saying that so much more than money was raised -- yet the fact remains that so much more was accomplished than just raising money.

I will have much more to say on this subject, perhaps, in future writings for much is happening; transformations are taking place; ideologies are changing; "...friends shaking hands..."

It is my understanding that there is much desire to know how much money was raised via the fundraiser, and I completely understand that it is because of the shear magnitude of the event -- I get that, and I would wish to know as well.

Well... The numbers are still being tallied, quite frankly, and the exact amount is not yet known.  I can tell you this, however, the number of people (I was told) that showed up was around 800 (600 adults and 200 children) -- it boggles the imagination.  It boggles my imagination.  I can also tell you this:  the goal was to raise $10,000.00 and the fundraiser far exceeded this amount; quite possibly tripled it. One donor agreed to match the amount made by the fundraiser up to $5,000.00.  It has been decided that this amount will be donated to P.O.R.T. and to Child Life Services -- Willem's favorite people at Helen DeVos Children's Hospital. There will also be a sizable sum donated to an HLH research foundation.

I feel it important to inform the reader that, apart from being the parents of Willem, neither I or Erin, were involved in the fundraiser -- we were kept out of the loop and had absolutely zero involvement in its planning or design.  Only now am I being brought up to speed.  What an amazing feat and what an amazing event.

So, on that note, I am still deliberating on whether it is prudent to divulge the exact numbers when they are given to me.

There will also be a separate post of much needed thank yous.

One Month Later

Willem passed away one month ago yesterday -- it still seems like yesterday.  I relive the sounds, the smells, and the visions over and over every single day.  The events conspire to lie on my chest and hold me horizontal to the bed.  I acquiesce.

It had been mentioned to me that I should post my words to the attendees during the ceremony -- for those that could not attend.  One month later, I am able to do this.  Here is what I said:

God give me strength.  


Willem Grey Radosevich is my son.  


I have been told that I am a great writer yet I have struggled to find the words to give this celebration all it deserves -- all that Willem deserves.  I can only say this thus far:  


I was supposed to be Willem's teacher; his guide; his mentor; his spiritual leader, and his hero.  I was supposed to be all of these things.  Instead, Willem became all of these things to me.  


Willem is a warrior and he is my hero.


The Radosevich family has a tradition:  My grandfather said it to my father before he went to Vietnam and my father said it to me before I was supposed to go to Afghanistan: We do not say 'goodbye;' we say 'see you later.'  


See you later son.  Mummy and daddy love you and we'll miss you so terribly much.


These were my words.  These words came to me fifteen minutes before the ceremony and my hands trembled and I cried as I wrote them.  It was difficult to see the words through my tears.

Willem's ceremony was the most beautiful ceremony I have ever had the privilege to witness.  It began with Willem's scout troop conducting a flag ceremony. My brother spoke to the attendees and posited this question, and I am paraphrasing here:

...What can we do for Thomas and Erin?... Here's the answer: They've received an enormous outpouring of support recently and I want to challenge you to bottle your urge to give all of it today; bottle it up, and instead of pouring it out all at once, pour it out over time.  Erin and Thomas will need you just as much in the weeks, months, and years ahead... 


Syd, "Ba," Willem's grandpa, gave an amazing account of Willem's life and expressed how wonderful Willem was (is): he was inquisitive, intense, intelligent, loved life...  Syd did an amazing job of summarizing the love Willem received from family and friends and the quality of life that Willem was able to give all of us during his too too short time on this planet.  Willem did more living in his ten years than most are able to do in a lifetime.

It was a beautiful celebration of Willem's life.  My favorite parts were the flag ceremony, the monument to Willem that had his Webelos hat and scarf (which made me cry intensely) next to a large photo of my smiling child, and the branch with all of the colored oregami that was made by the students of Meadow Brook Elementary.

I could not possibly capture the splendor of the event in words; one would really have to have been there.

No, it DOESN'T make any sense

"No... It doesn't make any sense.  It will never make any sense.  He was loved; he was special; everybody loved him... He was only ten.  It doesn't make any sense -- and it never will.  Period."

-- Erin Weston.  Willem's mother.  My wife.  My strength.

Lament for a Son

"If sympathy for the world's wounds is not enlarged by our anguish, if love for those around us is not expanded, if gratitude for what is good does not flame up, if insight is not deepened, if commitment to what is important is not strengthened, if aching for a new day is not intensified , if hope is weakened and faith diminished, if from the experience of death comes nothing good, then death has won.  Then death, be proud."                

                                                         -- Nicholas Wolterstorff (from Lament for a Son)

The pain is settling in

Liliana (Willem's six year old sister) is suffering this evening.  Many tears.  She was looking at the yearbook that was in her back pack and when she came to Willem's class photo, she began crying.  She just now said that she's going to hold on to his blankie until she's very old.

Wyatt wants to visit the hospital.  When I asked him why, he said, "I want to see Willem's room."  He made himself cry... If you know Wyatt, you would know that this is somewhat of a milestone.

Many tears for all of us today.  So hard.  So painful.

DAWN

I miss my boy.  And I miss writing in this blog about my boy.  The sun still rises and sets as it has done so for nearly five billion years.  But I don't care.  At one time in my life I wanted to live forever. Now I do not.

***************************

THANK YOUs

***************************

The gravity on planet Earth has increased so much - for some reason - that it takes every muscle fiber of my being to get out of bed... Yet I have (with the help of Erin) managed, finally, to open most of the cards we've received.  I have managed to open every email.  I cannot, however, manage to thank each and every one of you as much as you deserve.

Thank you everyone who came by to the viewing and to the service.  Thank you all.  I am left with empty feelings for those of whom I wished to hold longer and whom I wished to speak more.  Thank you all.  Your faces and your presence brought me much strength and joy.

Thank you to my teammates and the managers from my work who made the trip to see us: it meant a great deal to me to see your faces and to know that you were there.  Thank you... Thank you.

Thank you to the faces from my past who closed the time and distance gap to re enter our lives.  Thank you.  I hope you know who you are.

Thank you to the many donors to Willem's cause.  Thank you to the ones I've never met and thank you to the ones I haven't seen since 1986.  Thank you all.

Thank you to ones who have fed us when all of our strength and will to prepare food had vanished.

Thank you to all the students, staff, mothers and fathers of Meadow Brook Elementary for everything that you have done and are still doing.

Thank you to that little girl in Willem's class that looked at me with such caring in her eyes and said, "Hi Thomas."  You made me cry but it was such a good cry.  What a wonderful little person you are.

Thank you to my Military family. Thank you.

Thank you to my friends -- I do not deserve any of you.  Thank you to Erin's friends  -- I do not deserve you either.  Love you all.

Thank you father.

Thank you to the friends and acquaintances of Syd and Mary Baxter who deserve more thanks than I (we) are able to give.  Thank you so much for your condolences and contributions.   

Thank you nurses and doctors.  Thank you 9th floor.  Thank you Hospice.  Thank you Reese.  Thank you to infinity.

Thank you to my family.  Thank you cousins.  Thank you aunts and uncles.

Syd...  Syd...  My teammate and my guide. Thank you.

And most of all.  Thank you Willem.  Thank you for being the great son that you are.  Thank you for giving me life where I had none.  Thank you for teaching me.  Thank you for being everything that I've always wanted to be.  I love you and miss you so much.

CELEBRATING WILLEM THURSDAY APRIL 19

First of all  the family and I would like to thank you all for the heartfelt incredible outpouring and sharing of Love and affection. It is very much appreciated and quite humbling. The sheer volume is incredible. Thank You!

I know Willem has been restored and is whole again- hair and infectious smile in tact. We all will be reunited and that brings at least some comfort.

CELEBRATING WILLEM-  THURSDAY 19TH 6:30-9:00  KEYSTONE CC 655 SPAULDING AVE (just south of Ada Dr.)   COME EARLY AS WE HAVE A LOT OF AUCTION ITEMS!!!

Desserts, chocolate fountain, cookies, coffee bar,  silent and live auction, photo booth, Fun for all and More! Free movie and popcorn for the kids with complimentary day care. (cookies too!)

Come Celebrate the all too short life of our little Hero. He loved people and loved to Do Things- SO, come and Do Things for and with Willem. We know he will be there in Spirit.  

FUNDRAISER STILL ON

The fundraiser is still on for April 19th.  It is now called, "Celebrating Willem"

VISITATION AND SERVICE

Went to the the funeral home this morning with Syd (thank the powers that be for him!) and I have to tell ya... I hated the whole business of it.  Were it up to me I would have carried Willem out of the house last night and driven him to Lake Charlevoix.  I would have built a funeral pyre at the Goo Beach and set him aflame -- I would have given him a warrior's funeral.  A warrior's funeral for all to attend.  There would be food and drink and we would celebrate his life. This funeral crap is so very mediocre and stupid and Willem deserves so much more.

Nonetheless... I will -- I WILL welcome all who attend and I will cry with all of you.  Or not cry.  I don't know.

******* CASUAL DRESS CASUAL DRESS ********

VISITATION:  Thursday, March 22 from 4pm to 7pm
METCALF & JONKHOFF
Funeral Services
4291 Cascade Road
Grand Rapids, MI 49546

SERVICE: Friday March 23 at 11:00am
KEYSTONE COMMUNITY CHURCH
655 Spaulding Road
Ada, MI 49301

Willlem Grey Radosevich: 08/14/2001-03/19/2012

We moved Willem from the hospice bed to Em and Ba's king-size bed because I wanted Erin and I to be able to lie next to him while he passed.  Willem passed at 9pm - right after his favorite cartoon had finished.  Lili, Wyatt, mommy, and daddy were all lying in bed with him. Mommy asked for a glass of wine and daddy asked for a beer.  The light in the bathroom flickered and I looked at Willem's chest and could see that his heart had stopped beating and that he was no longer struggling for air.

Willem waited to die until we were all comfortable and with him.

Rest in peace my son.  My first born. We will miss you terribly.

Willem is "Home"

Willem was delivered by ambulance to Em and Ba's house.  His bed is next to a window and he has a great view.  The doctor extubated him and he is breathing on his own with effort.  More to tell but I just cannot bear it right now.

I will, however, close with this for now:  I have so many to thank and cannot, possibly, thank you all.  I do have to thank the PICU doctor who rode with Willem to the house to personally take care of Willem and monitor him for a while.  Thank you to all the nurses and all who came to say goodbye to him.  Thank you for taking such good care of him.

Where to Die

We were making plans to take Willem up north so that he could be at the "Goo Beach" at Lake Charlevoix one last time before passing on.  We were then going to have him spend his last days at the condo in Boyne City over looking Lake Charlevoix.  No pediatric hospice is available in Boyne City so it quickly became not an option.

Willem will spend his final days at Em and Ba's house and we thought this a good idea as well because it will be easier for friends and family to come and say goodbye to him.  Willem would have wanted to be able to say goodbye to his friends.  Erin, the kids, and I will be living there to be with him as well.  We will be able to lie next to him and snuggle.

Hospice is coming to the hospital now to talk with us about the logistics.

We are so sad.

We are so Angry.

Biopsy Results

Willem had biopsies done on both sides of his brain yesterday afternoon -- it was done to confirm the findings of the MRI and to assist us in the decision we must make very soon.  I hope that I do not have to explain what I mean by decision.  The neurologist said that there was a lot of necrotic tissue on the right side of the brain and found more on the left.  Had the disease not attacked the left, there was still some hope.

Willem's head is partially shaved.  We were handed a vile of the hair that they cut off.  It was a horrible feeling.  We still have the hair from his first haircut.

"Unrelenting pain and anguish unlike anything ever felt before."  Syd said this last night and the words look like they should describe the feelings we are having but they are still inadequate. There are no words.  We are in a tormenting fog that is so unbelievably painful.  Guilt for not having done the things that Willem wanted to do; guilt for the times we've gotten angry; torturing ourselves with all that Willem was to become... I wrote a letter once, at the request of his school a few years back, for Willem to read on the day of his high school graduation.  I cried while writing that letter but in it I told him how proud we are of him for becoming the man we knew he had become.  There was no doubt in our minds how well he was going to do personally and academically. The letter sits in a sealed box in the basement and it torments me -- I've not seen it since I wrote it yet I know it's there.

Liliana has a fever and Wyatt wants lunch.  Erin is at the hospital and I am at home with the children.

Sorrow

Dread.  Unimaginable dread.

We are losing our son.  Our son is dying.

More Issues

MRI revealed that there are compression fractures on Willem's spine. Nurse stated that when one is on steroids, for as long as Willem has been, it weakens the bones. The full body CT scan revealed more "nodules;" now they're in the kidneys. Still awaiting biopsy results from the skin lesions.

I have been unable to find any "acceptance" of late and, apart from brief moments of delusion, feel only despare. I just can't believe this is happening.

Skin Lesion

It was later noticed that there was a skin lesion on Willem's arm.  It was a grayish-white pustule that rather reminded me of the pustule that formed on my fellow soldiers' arms in Mississippi after being vaccinated for small pox. Very similar.

Not much change from yesterday -- still all a mystery.  Rounds revealed results from yesterday's tests -- which were negative for this-and-that -- and added more tests: Full body CT scan and biopsies of the newly found nodules on Willem's body.  It was mentioned more than once that Willem is an anomaly on so many levels.

Today was the full body CT scan to look for other possible pockets of infection; spinal MRI; and nodule biopsy.  Tomorrow will be brain MRI.  Friday will be the brain biopsy if all other tests fail to reveal the information needed.

Nodules

Nodules forming. One on leg and one on back. About the size of a marble. Don't know what they are yet. Willem is responsive to touch but won't open his eyes or grip my fingers. He is, however, trying to pull out his breathing tube. MRI on back scheduled for this afternoon and MRI on head on Friday -- but this could change. Rounds in five min.

Holding off on Biopsy

Willem's white blood cell count low so holding off on biopsy.  Neurologist doing biopsy wanted to wait for other tests to come back as well -- doesn't feel that there's an urgency.  Added that Willem's current state of unresponsiveness is due to a combination of meds and the previous seizures.

ID added that it could take two months to rid the brain of the infections.

He was laughing only days ago.

This is pure agony.

Brain Byopsy

Wow.  A lot of information -- I needed a camera and sound crew.  It's really quite amazing to watch nineteen doctors collaborating over Willem's case.  There is a lot of uncertainty amongst them all but do not confuse this with a lack of direction.  Fascinating to watch them brainstorm.  I attempted to describe it but my words quickly became chaos so I will just update you as to what is happening next:

There will be a brain biopsy in an effort to determine what the abscesses are; i.e. whether they are fungal or bacterial. I am being told that the biopsy may not reveal anything. Infectious diseases (ID) feels it's HLH and all others feel it's bacterial.  The supporting information seems to suggest that it's bacterial. ID has indicated that they would prefer some less invasive tests done first before doing the brain biopsy.  A simple eye exam, for example, can detect evidence of toxoplasmosis.

There will possibly be a scope of his sinuses to see if there was any sign of a mold infection. There will be tests for several molds common to Michigan -- Grand Rapids Township in particular.

Neurology will be having further tests done on the Cerebral Spinal Fluid (CSF).  They will test for lymphoma, John Cunningham (JC) virus, and toxoplasmosis -- something associated with cat feces and under cooked meats.  We don't have cats and he hasn't had any under cooked meats. There will also be an MRI done on the spine.  HDCH PICU does not mess around.  Neurology has positive things to say about Willem's condition.  HEMOC docs look very glum.

Overwhelming and fascinating at the same time.  More Overwhelming than fascinating.  I don't want to feel anymore.

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THANK YOUs

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Many thank yous are owed to so many people...  Again, I will miss some of you to be sure and I'm not so sure I can keep up anymore.

Thank you Baxters for your donation to Willem's cause.  Thank you very very much.

Thank you to Jennifer Kolster -- you're pretty darn amazing.  Thank you.

Thank you again to the Meadow Brook staff and all you awesome people behind the scenes doing stuff that I'm not completely aware of but have been informed is wonderful.

Neurology

Neurologist just said that they will keep him on anti-seizure meds (Keppra) until infection and swelling goes away which will be around four to six weeks "...at the very least."  Neurologist stating that the brain wave activitity is indicative of infection and swelling in the areas showing on MRI.  Scar tissue around the abscesses indicate that the infection has been going on for weeks. Neurologist surprised that Willem had not displayed any signs of issues, such as vision, over the past few weeks.

03/12/2012 1:05PM: Electrodes

EEG tech. putting electrodes on Willem's head now to monitor brain activity.  I do not equate this image with anything positive yet I do not feel despair.  And, at the same time, I do not feel hopeful.

I don't know what it is that I should be feeling right now... I don't know what it is that I am feeling -- I feel as though I need something but I don't know what it is that I need.

Many readers would find a correlation between my typing these words just as the hospital's chaplain walked in the room. I do not.

Erin says she feels tired.

I feel like either going to a bar and drinking myself into oblivion (not something I ever want to do - ever) or going to play racquetball.  And since I don't have a racquetball court...

03/12/2012: 10:30AM Abscesses on the Brain

MRI revealing abscesses on the brain.  Going to do a spinal tap now.  Abscesses formed maybe because of some type of infection that could be bacterial or fungal.  Unknown at this point. Willem will remain in ICU and intubated for an undetermined amount of time. Doctors at a loss at the moment.

Some talk that Willem aspirated again a few days ago but we were not made aware of this until today. Not sure if it even happened and cannot get a clear answer.

Mommy is petting Willem's head and telling him she loves him.  In my mind he hears her.

ICU Again

7:15am- breathing issues followed by seizures. In ICU now and intubated. Doctors not sure what is going wrong; just ideas. Going into MRI now.

03/09/2012:

• Willem's bilirubin levels are up and he's starting to get jaundiced again.  Ultrasound revealed a liver that's slightly enlarged -- possibly (probably) due, in part, to the TPN. 
• Explained my stand on nutrition to Willem's nurse -- especially my dissatisfaction with the nutrition nurse recommending Froot Loops.  Left the hospital for a little bit and, upon my return, found two empty boxes of Froot Loops in the wastebasket.  Nurse didn't seem to care what I thought. 
• Made a fresh fruit smoothie with Shakeology protein powder for Willem to keep in the hospital refrigerator. Left instructions to have him drink it with every meal and for a snack.
• Brought a box of Kashi and some fresh fruit for Willem to have in his room for snacks.
• Erin and I mentioned to the doctors that we thought it would be a good idea to just keep Willem in the hospital until he was BMT ready and then proceed with the BMT.  This may just be what will happen.

03/10/2012:

• Bilirubin levels down.
• Willem called my cell phone at 7am requesting my special pancakes (organic kamut w/real maple syrup) and some scrambled eggs.  And to tell me that the hospital gave him French toast for breakfast.  So I got up and made the items and brought them to the hospital.  Willem wanted them when I arrived and ate one pancake and half the scrambled eggs.  The leftovers are in the hospital's fridge.
• Cousin Brenda visited from Ohio and brought Willem some board games. Sequence.  Thank you cousin!!  Great seeing you and thanks for visiting.  Good fun.
• Willem doing better today.  Adding more things to his med tree but at least he's eating now, and, hopefully, absorbing nutrients.  It's a fight getting nutritional food in him but Willem's on board (he's calling us whenever he gets food and tells us what is on his tray -- his idea.  What an awesome little boy he is).  He's not supposed to have leafy greens (docotor's orders) so he called to report that he got leafy greens on his tray.  
• Willem is getting some treats of course.  

HDCH is an excellent hospital and the doctors and staff are doing what they do and they're doing it very well.  As with any team, however, there will be challenges and some members will even have to be picked up from a fall, carried, and re-motivated.  I think everyone is on the same page now.

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THANK YOUs 

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Thank you Hertl family for your donation to Willem's cause.  Thank you very much and thank you for keeping us in your prayers.

Thank you Brenda for coming to visit.  What great fun.

Getting Admitted into the Hospital Again

We've been having some sustenance issues of late whereby we have TPN going and we've nixed the formula in favor of regular foods but something is not working out very well.  Willem's bloating is in part a result of not enough sustenance going through Willem's GI and part TPN negatively affecting bilirubin levels.  Experienced readers will remember bilirubin and how closely we monitored the levels.

In short, and in lieu of alarming the reader, Willem will be re-admitted in to the hospital to get a firm grasp on his nutrition and get all members of his team on board with his nutrition.

We're still in chemo and awaiting word on when he'll be admitted -- 'will keep you posted.

***UPDATE:  Admitted.  Asked for chocolate chip cookie dough and mint chocolate chip ice cream.  He got both.

REGISTRATRION FOR FUNDRAISER

Off to the right, above the DONATE button, is a link to the registration website. Please register.

Nothing Significant To Report

Apart from the behind-the-scenes hell, there really isn't anything significant to report; we're in another holding pattern.  Still no sign of the tell-tale "gravel" from the lithotripsy and we have appointments on Friday to see how Willem's lung has responded to treatment.

Willem is eating and holding down more foods and we're easing in variety and texture with an adherence to  natural foods as much as possible.  Juicing (carrots and apple).

The medication Willem is on has bloated his face to such an extreme that it is difficult to...  It is difficult to recognize him.  I find myself closing my eyes to embrace the sound of his voice.

Every day seems more difficult to deal with than the last.

Wyatt and Liliana are now suffering from some form of a cold: Wyatt seems to have conjunctivitis and a sinus infection and Liliana now has a sore throat.  And I continue to theorize that the house we live in is contaminated with an anomalous mold. Sleep deprivation induced paranoia no doubt.

Kidney Stones

Unfortunately no time to elaborate but the Extracorporeal shock wave lithotripsy (SWL) to blast his kidney stones went fine.  Recovery was a little sketchy: BP was very high and pulse was too low but all is fine now.  Sleeping a lot today.  Medicines, calls from medical supply, tube changes, end cap changes, and administrative issues occupying our time today.  Grrr....

He could barely say the words but he requested his DS when he came around.  And then promptly fell asleep while playing it:

***** TEAM UP FOR WILLEM FUNDRAISER *****

There has been a community of people that have gotten together to create a fundraiser for Willem.  A few members of said community have requested that I post something about the fundraiser.  Here is a portion of their flyer:

SAVE THE DATE

Please join us at a Team Willem Fundraiser

on Thursday, April 19, 2012

6:30-9pm 

at Keystone Community Church

655 Spaulding Ave

Ada, MI 49301

SILENT AUCTION  KIDS' MOVIE (7pm)  POPCORN  HORS D'OEUVRES  DESSERTS

plus lots of surprises and fun!

OTHER WAYS TO HELP

• Please donate items or services for the silent auction. Some examples already include an Amway Grand Plaza certificate, the use of a convertible for one day, a weekend use of a condo (that overlooks lake Charlevoix) "Up North" and golf packages. Contact Nancy Schroeder at (616) 940-9811 or nancy-chris@comcast.net
• Donate directly on this website or by mailing a check made out to Willem Radosevich, to Fifth Third Bank 4460 Cascade Rd SE, Grand Rapids, MI 49546

Thank you for supporting the Radosevich family

To the Floor

Willem finally made it to school today and I went with him in hopes of spending some quality time with him.  When we arrived, it was "specials" time whereby they are either in music, art, gym, etc; his class was in gym.  We attempted gym with his class and his gym teacher gave him an exercise band for us to work with but it was a wee bit stronger than the bands we use at home so we tried exercising with a milk crate that had an orange cone in it... Willem lifted it for maybe three repetitions, ground to chest, and then Willem screamed in agony. His legs gave out as though they disappeared completely, and he collapsed to the floor -- screaming and in more pain than I have ever witnessed him in.  I knew the answer but asked him what was hurting anyway:  Willem said that it was his back, which meant to me that it was his kidney stone and that it probably had moved again.

Luckily Syd was still there and was exiting the building as I carried Willem to the office.  I asked the gym teacher to run and get Syd.

As Willem lay in pain in the office, Syd sat by Willem's side and comforted him while I called the kidney doctor's office. I spoke with a nurse and she suggested that we immerse him in a warm bath -- I told her to pull up his medical file and added, with as much patience I could muster, that Willem has a bunch of tubes sticking out of his body and cannot be immersed in water.  She looked at his file then promised to inform the doctor then recommended that we apply heat and give Tylenol and suggested to bring him to the ER only if the pain does not go away and he becomes nauseous.

Willem is now resting comfortably on the sofa; heating pad on the back and wrapped in a warm blanket.  My precious little man.

He desperately wants to be in school and it's just not working out for him.

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THANK YOUs

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Thank you again Theresa for the juicer.  Your donation to the cause is curing insides. Thank you.

Thank you Zuke family for your generous donation.  Thank you.

Thank you teachers -- you know who you are -- for continuously making diners for our family.  Erin came into the kitchen yesterday and said, "Ugh... I'm getting fat from all this good food."  Thank you.

Thank You Bosco's Pizza Company

Thank you Bosco's Pizza

A few days ago, while getting his chemo therapy, Willem asked the nurse for his usual favorite condiment packets.  The nurse brought him some A1 and catsup packets.  She also brought a little container of Bosco's pizza sauce that came in a convenient container with a peel-away top.  Willem tried it and his eyes lit up -- he loved it.  Being so limited on what he can eat, I decided that I had to find out how to get some of this pizza sauce.

I promptly looked up Bosco's Pizza Sauce and sent an email to see if it were possible to purchase some for Willem.  I received an immediate email response from Jamie, their marketing and customer service manager, informing me that I could buy their sauce at Gordon Foods but then added that she would just send us some.  Jamie sent two cases of pizza sauce for Willem!  She also sent him two t-shirts, a baseball cap, a stocking cap, a back pack, and mouse pads. Willem was so excited to get mail.  He then asked if he could wear one of his new t-shirts to school the next day.  Of course we said yes but, unfortunately, he has not been able to go to school recently because of doctors appointments.

Thank you again Jamie at Bosco's Pizza!  That was very very cool of you.

Juice

Thank you Theresa for the juicer!!!

Made Willem a juice comprised of spinach, parsley, carrots, apple, cucumber, celery, and ginger. Apart from overdoing it on the ginger it was actually really good.  I made four cups of juice that nobody would drink -- Willem had two sips and then gagged.  Oops.  I will try again today but will flavor to taste with the ginger instead of throwing it in all willy nilly like.

The GI nurse said that Willem could have something to eat by mouth twice a day so I decided to treat Willem's food as a medicine.  After we administer Willem's medicine, we have to clamp him so that the medicine doesn't drain out of his stomach tube so, I figured, why not do the same for the healthy food he's eating.

Here's something exciting:  Willem asked to have some of my cereal this morning...  I eat Kashi! So he got some Kashi with blueberries, strawberries, and banana.

KAIBOSH

The same doctor that told Willem he could have a taco has now changed directions.  The GI doctors do not want us to keep Willem clamped because they're afraid that real food will cause another stricture, or worsen the strictures he already has.  I get that but don't you dare tell my 10 year old, to his face, that he can have a taco and then have your nurse call the house to tell us that he cannot.  I thought it was a stupid idea anyway and there was no way in Hades that I was going to let him have a taco but c'mon...  GI docs don't like my idea of natural foods going the natural way through his system so I'll do what they say.  He is allowed 2 feedings by mouth of things that aren't too aggressive.  Some examples I was given by the nurse were Saltines and Froot Loops.  That's awesome: bleached over processed crackers and chemically colored and flavored cereal.

Hold Please

Something in the universe told everyone to call our house and our cell phones between 9:15am and 9:30am today.  Erin's cell phone rang but she didn't want to get it so I answered it; it was Lincare, Willem's medical products supplier.  As soon as I answered Erin's cell phone, our land line rang; it was the GI doctor's office calling to tell us to unclamp Willem -- to which Erin replied, "no."  While I was on Erin's phone with Lincare, my cell phone rang -- it was a Master Sergeant calling to inform me of a job opportunity (I had to tell her that I will have to call her back).  I had to tell a Master Sergeant that I would call her back.  Not good.  So... Hung up the phone with Master Sergeant, continued my call with Lindcare, and then came another call on Erin's phone while I was on Erin's phone (the hospital).  I didn't answer it.  While not answering the call from the hospital, and while attempting to continue my conversation with Lindcare,  my cell phone rang again. Sorry Syd -- didn't mean to hang up on you.

I cannot believe my heart didn't explode.  Very stressful.  Looking back on it it is somewhat comical.

Thank you Syd for calling the Rays for me.  Thank you Rays for taking Wyatt and Liliana.

Poop update:  There's poop.  And some more poop.  It's pretty alien-looking poop but it's poop.

Pancake Breakfast

Willem had a banana-strawberry-blueberry-yogurt smoothie this morning and an organic kamut pancake with pure maple syrup.  So far everything is staying down and going through.

Willem did wake up at 1:30 this morning and told me that he was hungry.  I attempted to make a vegan protein shake with a pinch of spirulina but the consistency and flavor were... um... undesirable.  This will take some experimenting.

Whirlwind Days

So much news for you today and I don't know where to begin.

I shall start with the not-so-good news first:
Willem has a spot on his lung that could be just about anything at this moment; the doctors do not know.  The major concern is that it might be a fungal infection which would be bad.  We will be meeting with the Infectious Diseases doctors tomorrow and they are going to try and figure out what it is.  The other not-so-good news is that Willem now has kidney stones.  Less of an issue but more on our plate.  His surgery to remove the kidney stones is already scheduled.

Okay... Now the cautiously-optimistic-good news:
Erin screwed up last night and forgot to unclamp Willem's drainage tube so nothing drained from his stomach throughout the whole morning; i.e. it stayed in his stomach.  Under all other circumstances this causes him to throw up because nothing gets through the stricture.  Well, thus far, it seems that Willem is the recipient of a small miracle:  Food seems to be passing through his entire GI system with no throwing up.  Thank you Erin for the goof.

I decided to keep him clamped this morning and test his gut by giving him some tomato soup. When the soup stayed down and in, I gave him a few bites of banana.  Willem then had a bowel movement (an excellent indicator that everything passed through the system).  During Willem's chemo therapy clinic today, I gave him some more tomato soup, 1/3 of a banana, 1/2 of a Saltine, and 5 froot loops.  It is now nearly 5 hours after the last go at solid food and it's still all staying in. Oh... He also had another bowel movement during clinic.  So what I'm looking for now is another bowel movement with different colors and smells.  Gross, yes, but I'm so excited.  His next meal will be a small vegan protein shake with fresh fruit, two small leaves of spinach, and 1/4 teaspoon of spirulina.  Very blended.  If all this stays down through the night, we've got progress -- we can take him off of the formula feedings and the TPN feedings (yes, he's doing both now).

After the agonizingly stressful and frustrating day of yesterday we really need this.  Willem needs this...  He needs this so bad.  To give you an example of how anguished he is about not being able to eat: I over heard him talking in his sleep about how his little sister ate his pancakes.  He can't even get any of his favorite food in his dreams.

If he lasts the night without throwing up, I'm going to make him pancakes in the morning.  And nobody else can have any.

BMT Rescheduled

Willem's BMT pushed back a week.  Some concern that there's an infection in his lungs.

Puting the J-Tube Back In: 2nd Attempt

Doctors found that Willem's strictures opened up a little bit -- enough to attempt to put the J-Tube back in and allow him to go back on the formula feeds.  The formula feeds are better for the liver and, well, better all around.  Erin and I are a little nervous about them putting Willem out for the surgery because the last time they put him out he ended up in ICU.

One of the transplant doctors called to inform Erin that they wanted to get a chest x-ray because the CT scan revealed that there may still be some issue with his lung from when it collapsed after last attempt to put in the J-Tube.

Willem is still working on his food list and has since added a supplemental list for the doctors to have that informs them of foods that he is begging to be able to eat.

Reality Setting In

The 21st of February begins the first of many long days for Willem, Liliana, and the rest of our family. Many tests and much paperwork.  As we draw nearer to the day Willem gets admitted to the hospital for zero-minus-nine to bone marrow transplant, I find myself falling farther away from acceptance and I struggle to deal with the reality of his illness. I struggle to deal with everything.

Willem has spent the better part of his day making lists of all his favorite foods.  Erin took Willem to the store earlier today and they went up and down each food isle so Willem could look at all the food and write down his favorite items -- items that he hopes to be able to eat after his BMT.  I stare at his list and I hope.

Super Hero Bound

Willem was a little upset about life and got into that why-me mode so I explained to him that we don't always know why certain things happen to us and added that it is important to focus on the positives.  It was then that I let him in on a little secret:  I said, "Willem, I'm going to let you in on a little secret. Can you keep a secret?"  He said "Yes."  "Willem, when all of this is over with, you're probably going to end up becoming a super hero."  I went on to explain that I thought this because every super hero endures unimaginable suffering before their powers become completely realized. I explained that many have to endure, on top of the suffering, an internal struggle with themselves over right; wrong; and they struggle to persevere. The ones that win this internal battle become super heroes. "So Willem... You're probably going to have some super powers when this is all said and done."

Valentine's Day

Valentine's Day at school was a spot of a challenge for Willem today.  For a boy who is not allowed to ingest anything but liquids, today was absolute torture.  He knows that he is forbidden to eat anything that has to be chewed yet he ate a cracker and some chocolate.  Daddy got a little terse with him and simply laid life and things on the line by explaining the possible consequences of his actions.

We received word from the hospital today that they --tentatively -- wish to admit Willem on the 27th of February. The 20th of February will be a 24hr urine collection which will have to be kept in the refrigerator (far away from the apple juice).  Apart from the 24th, and 25th, nothing but appointments and "conditioning" thereafter.  BMT is scheduled for March the seventh.

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This blog has been evolving and what has begun as a means to expedite news about Willem has now morphed into a story about a father's love for his son and his family's struggles.  It is now an amalgamation of abrupt facts - plainly delivered - and sometimes passionate expression of Willem's and my feelings. Once this blog gained an audience that reached beyond a comfortable sphere I began to feel a concern for content and a fear of criticism.  It was at that time that I made a promise to myself that, lest I stop writing all together, I would continue to write with an adherence to fact and without regard for exposure; without fear of criticism.

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THANK YOUS

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Many thanks are owed to the staff at Meadow Brook Elementary.  Many a night has gone by without Erin or I having to cook a meal for ourselves and the children.  Thank you for the great amount of rest it affords us.

As mentioned before, I try to provide a certain amount of anonymity to Willem's donors because I guess that it's the correct thing to do -- I'm not even sure that people want to be mentioned yet I feel it necessary to publicly express our gratitude:

Thank you to the wireless company that sent a very generous donation via mail for Willem's recovery.  Thank you.

Thank you all from whom I received beautiful smiles today at my childrens' Valentine's celebration.  Your encouragement was visible and unmistakable.

Thank you Landmans

Thank you Gawrychs

Thank you Mrs. Klotz

Thank you Mrs. Kemperman

Thank you Mrs. Freyling.

I am missing a few people to be sure -- Please know that you have filled our hearts and my inability to remember is by no means a dismissal.

PT

Willem and I have been working out together in the mornings.  We've worked up to 30 second planks and now we're using my old PT bands to work the back, triceps, biceps and chest.  Did 10 Calf raises. Using the stairs to... um... do stairs.  Even did a little yoga.  I think more yoga would do wonders for him.  When we did the planks together, I put my head on his and tried to send him some lovey-type energy. 

I'm Leaking

The home care nurse arrived at 6pm last night and managed to overwhelm us with equipment and medications but with good notes and practice we'll get the hang of it.  After the nurse left, I hitched up the sled dogs, faced the blizzard, and went back to HDCH to pick up Willem's medications; a whole grocery bag full of 'em.  Erin and I got Willem comfortably in bed and administered his medications and managed to get ourselves in bed shortly before midnight.

At 4:30 this morning we were awakened by "Mommy, I'm leaking."  Willem still has a stomach drain that drains into a bag but the connections are from different manufacturers and do not stay connected without copious amounts of tape -- which eventually loses it's hold.  So... there was a mess to clean up this morning.  Borrowing an idea from a clever nurse at HDCH, I splinted the connections with a plastic spoon and taped each section of the tube to each end of the spoon. It holds but I had to take it apart again to administer meds at 6am.

Thinking again how amazing my wife is to have managed Willem's care in my absence; the time involved; the lack of sleep; the uncertainties...  Hopefully I can do the 7am battery of meds without waking her for assistance.

Outpatient

The news right at this very moment is that Willem will be leaving the hospital today.  Much to do now: have to get meds together; classes for home care.  Many staff visitors -- can't write.

Possible This And Possible That

Might come home on February 10 or might be February 13.  Home care will be a chore but it will be so nice having him home again.

We're still awaiting the results of the MUNC gene test out of Cincinnati but should have that by the end of the month. Once the results come in the BMT will begin. Doctors are saying they will begin "conditioning" Willem at the end of this month or the beginning of March.  Conditioning is a euphemism for what they will be doing to prepare him for his transplant; i.e. high-dose radiation and chemotherapy.  "Conditioning."  Hmph.

I am not sure how Willem is going to physically and mentally respond to the whole process (I don't know how Erin and I are going to respond) but I do know that we're going to need some help and we will be doing our best to reach out to you.  For me, I know I'm going to need a lot of moral support: I'm going to go absolutely nutso watching both my boy and my little baby girl suffer.  Nutso.

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THANK YOUs

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Thank you Mrs. Rentz for giving me a little tap to remind me that you're there.  Keep reminding me 'cause we're going to need you I'm sure.

Attempting Structure

Arrived to find Willem walking around the 9th floor, all by himself, sans IV tower -- big smile on his face.  He waved to me as I exited the elevator, said "Hi Daddy" and then added, "I already did a page of math."  Y'see...We began a new study regimen today that involves less video games and less television:  In lieu of turning on the television or playing video games in the morning, Willem is to do homework from 8:00am to noon.  In an effort to be a part of it, my job is to wake up; rush down to the hospital; do homework with Willem; do fun stuff with Willem; go home; shower; go to work; come home; sleep; repeat.  I will be moved to 3rd shift pretty soon so the routine will be a little different.

Willem has a knack for relaying a story that he has just read about.  And it's looking like we don't have to do four straight hours of homework...  He's way better at math than I am.  Smart kid.  So far Willem and I have agreed that he will do homework from 8am to 10:30am for now and then have some form of "recess" that has to do with activity (right now it's wii sports) -- preferably, PT on the 7th floor.  Reese is coming in with some poster paper and Willem and I are going to try and put a schedule together and see if the hospital will be able to work with us on getting a regimen going whereby we're working the mind and body instead of the thumbs and eyeballs; i.e. video games and television.  I'd really like to see some structure in his day.

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THANK YOUs

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Thank you Betsy for going to the store for us yesterday -- that was a HUGE relief.  The children thank you for your gifts to them as well.  Thank you!

APPROVED

Our insurance company has approved the bone marrow transplant (BMT).  We are not sure when the whole BMT process will start (3 to 4 weeks?) but we shall keep you posted.  

Erin and I have requested surgical notes regarding the most recent surgeries and have been met with some opposition through delay and omission -- especially for the most recent surgery where Willem aspirated and his lung collapsed; causing him to go to ICU.  We've requested the notes for our personal understanding and because it was recommended by a medical professional we respect.  Not being able to acquire the most recent surgery notes is beginning to make us think that there is something to hide.

Physical Therapy: Fun for the whole family

Willem did 10 minutes on the treadmill.  Liliana's Wii-dancing, and Wyatt is... um... watching.

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THANK YOUs

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Thank you uncle Greg for EVERYTHING.  Thank you for driving up from Chicago just to be here for us.  Thank you for the Pokemon cards for Willem.  Thank you for translating the medical-speak. Thank you for taking Erin out to lunch.  Thank you; thank you; thank you.

Thank you Tyler and Lisa for the gift card.

Thank you HDCH and Ba & Em for the Legos.  Legos are appearing from everywhere.

Stressful Morning / Day

What we really need is two of Erin and Two of me...  I have to go grocery shopping and take care of administrative crap at home and Erin is going to the hospital to be with Willem.  I don't want to go grocery store!  I want to go see Willem!  Erin is tired of going to the hospital -- she wants Willem home!

We've surpassed our psychological capabilities I think.

"Home"

We have been hearing that Willem would be allowed to come home soon but one of the doctors stated today that Willem wouldn't be allowed to come home for a while.  Said doctor added that it would be about three weeks (perhaps more) before Willem would begin the transplantation process.

There are two insurance providers for Willem:  TRICARE (the primary provider) and the State of Michigan (the secondary).  The State of Michigan has approved the bone marrow transplant (BMT) but TRICARE is still not communicating.

Willem received a pass to leave the hospital for a while today -- about four hours.  All he wants to do these days is go to the store to buy more Legos but, as much as we feel he deserves whatever he wants, whenever he wants, we are limiting trips to the store.  Heartbreaking... Especially since he has learned that his illness and misery has great power over us.  With much pain in our hearts, we denied him yesterday and made him do a lot of homework today.  If you could have seen his face yesterday when denied that second box of Legos... He has mastered that look that says "Everything that I have has been taken from me and I have nothing. I no longer have any hope. I no longer have any desires. I am defeated and crushed"  Willem's face relaxes and his eyes become blank  Empty. I challenge you to stand in my place, in the isle at Walmart, ambushed, and deny him a box of Legos.

In lieu of shopping today, Willem came home on his pass from the hospital.  Unfortunately, Wyatt and Liliana were in ski/snowboard school at Pando with Ba today so Willem was home alone with mommy (I was at work). Willem spent his time in the basement playing with his Legos.  At some point he said to Erin, with heavy sigh, "When I finish this, you can just take me home."  To which Erin replied, "Honey, you are home."  It absolutely breaks my heart to think that Willem has now equated the hospital with home.  It is time for this disease to leave him alone.

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THANK YOUS

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Thank yous owed are now out of control and some very deserving people will be missed but I will do my best to get everyone.  For those of you that I have missed... Please forgive me.

Again, I am truly amazed and extremely humbled by the community that has come together to help Willem and to help my family.  I would love, one day, to gather us all, in one place, and see each and every one of your faces and to shake every one of your hands.  I would love to personally thank you.  I would love, even more, to have Willem there to see the crowd of people that have united just for him.

Thank you Trish and family for the food I found, quite accidentally, on the front porch: Divine intervention if ever I have seen it.  Thank you so much for the Meijer gift card as well.  It has been so good to know you and your family and I thank you for thinking of us.  We are blessed.

Thank you  Gary and Betsy for picking up the tab.

Thank you to an old classmate of mine from Forest Hills Northern high:  Thank you Joe.  Thank you again and thank you a hundred times more for your generous donation.

Thank you auntie Jane & uncle Bill for the hospital food card thingy:  It's perfect!  We have to eat there so often as we practically live there.

Thank you Karey KH for your donation.  We are truly grateful.

Thank you Despina W for your donation.  Thank you. Thank you. Thank you.

Thank you Christopher K. for your donation.  Erin speaks so highly of you -- and always with a smile and stories that bring laughter in her voice.  She has the best taste in friends. Actually... She appears to have the best taste in just about everything.

Thank you to my place of employment, Amway Grand Plaza Hotel. Special thank you to my friends and colleagues for making the transition from soldier to civilian a little bit easier.

Thank you Magda.

Thank you Tracy B.  Thank you for being you.

Thank you Nancy S.  for being that take-life-by-the-balls, no BS, ass-kicking kind of woman that moves mountains with ease.  Note to reader:  Nancy is hell bent on putting together the end-all-be-all benefit for Willem and... Well... I have lost my train of thought. I am richer for knowing you Nancy S.  And that's richer in the best way possible: It ain't got nothin' to do with money.

Thank you to Meadow Brook Elementary for everything.  Thank you Meadow Brook teachers for the food and thank you for the coupon book.  Thank you Monica.

Thank you Ted Graves at Mid Michigan Car and Truck. Best mechanic in the world: Trustworthy and generous.

Thank you Samantha P. What an amazing friend I have found in you. Beautiful; smart; and loving. Thank you friend.

Thank you RJ Z.

Thank you Paul M.

**** More to come ****

Thank Yous Pending

Our family has had a proverbial deluge of donations, food drops, and... well... a lot.  I am amazed by the community that has risen up around us.  I have so many to thank and the list grows daily, exponentially, it almost seems.  I want to thank you all right now but I need to assemble the perfect words for the graciousness.... ...

Hand me the bowl please daddy -- I can feed myself.

Arrived to find Willem in his room with mommy and Em and Ba and mommy was feeding him cream of mushroom soup.  Surprised to hear that he liked it.  Erin left shortly after I arrived and I began to feed Willem.  Not too long into the feeding Willem asked for the bowl so he could feed himself.  It was a pleasant thing to see and hear.

I did not get to see much of Willem today because of some administrative things that had to be taken care of but the few precious minutes were delightful: Got some cheek lovin' and got to see him walk, unassisted, to the elevators to play on the 11th floor.

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Thank Yous

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There are many thank yous that must go out and I will post them in the next posting.  You all know who you are and you need to know that we are extremely grateful.

Out of PICU

Willem was moved back to his old room on the Hem/Onc floor last night.  he is doing and looking 100% better.

Still waiting for genetic tests results from Cincinnati and still in the appeals process (appeal 1) with TRICARE insurance regarding payment of Willem's pending BMT.

For those of you who have been asking what you can do to help:  If TRICARE denies the appeal, we may need your assistance in lobbying our insurance company -- or whatever else it takes. Become ready with ideas and await the battle cry.

Prozac by Proxy

I was speaking with Willem's psychiatrist this morning who recommended that he still be on suicide watch given he stated clearly that, while he is in pain, he feels like he wants to die.  He was also very clear that he didn't want to die at this moment in time.  FYI: His wanting to die is not necessarily a function of pain, however -- varying degrees of pain, combined with situational psychological trauma (in our last instance it was lack of being allowed to sleep) bring about his wanting to die.  Which makes sense to the psychiatrist and myself.  She did add, however, that when Willem was talking about  the movie Homeward Bound, and, puppies - and how he wants a puppy - he got weepy. Because of this, the psychiatrist wants to continue the suicide watch regimen and also up his Prozac dosage.

In an effort to argue against the necessity for a suicide watch regimen, and, in an attempt to defend Willem's mindset, I interjected that I thought perhaps Willem was genetically predisposed to being weepy during potentially sensitive situations (or conversations) and offered myself as an example:  I told her a story of when, while watching TV and, while clicking through channels, I landed on figure skating and while noting the beauty of the routine began to get weepy.  I don't know why -- I was in a perfectly equable mood -- but I just started crying.  To which she replied, "I have no doubt it's genetic... and I'm going to up his [Prozac] dosage."  Now wait a minute... That's not the point I was trying to make...  The psychiatrist just diagnosed me as needing Prozac by proxy.

Inclined Plane

Willem is putting together a lego car (Thank you Jessica and Curtis!) as mommy is handing him the pieces.  He will describe the piece he needs and mommy will hand it to him.  He just asked for "...a piece that looks like an inclined plane."  His request made me think metaphorically for a moment.

Okay...  Willem is still in PICU and is off the oxygen mask now and breathing room air.  His oxygen saturation is good.  BP still a little high and RR will get up into the 50s when laying on his back. Sitting up gives us a RR in the low 30s.  Which is good.  Staff will discuss now when he can go back to the 9th floor; i.e. out of PICU and back on track for BMT.

Willem was moved to a different room on the PICU (for no other reason than convenience for the medical staff) and now has a sick view of the helipad! Willem is in good spirits but still in some pain. He promised that if I let him rest a little bit he will give us an anniversary present of walking -- actual walking -- around the PICU.  I shall call it the "PICU Loop."

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THANK YOUs

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Thank you Chachulski family for the food!  It was so nice not having to cook given the day I had yesterday.  And momma Chachulski I do so love that apple thingy you make.  In fact, I love it too much.  No more of that y'hear?

Thank you friend for the phone call from Afghanistan!  My eyes got wet from hearing your voice and with the realization that I missed the call.  I was only feet away giving "cheek love (we rub cheeks)" to Willem and missed your call because my phone was on vibrate.  Thank you so much for thinking of us and calling.  I will listen to your voicemail over and over.

Thank you Jessica and Curtis.

Thank you Mrs. Melzter for your donation.  Thank you very much.

Thank you Jody for the hug.  Hugs are always appreciated and very therapeutic.

Wants to Die

Willem continues to speak of wanting to die.  As morbid as it may seem to the reader (in fact it seems odd to me, the author, now that I look back upon it) I took the opportunity to discuss the particulars of what he wanted done with his body.  Willem stated that he did not want to be buried and wishes instead to be, as he put it, "burned."  When asked what we shall do with his ashes, he did not know.  I recommended that his ashes be spread at the "goo beach" at lake Charlevoix and he agreed that it was a good idea.  I asked if I could join him and he said yes and added that we could die together.  In the tired and depressed state I find myself of late, the notion doesn't seem all too terrible to me: to be walking hand-in-hand for eternity, with my son, on the beaches of Lake Charlevoix.  Forever catching tadpoles and frogs.

But alas...  "We both are destined to live" I tell him and add "You and I will suffer through this together and enjoy the goo beach once again as livers and lovers of life."

Erin is with Willem at the hospital -- still in PICU -- and informed me that he is doing better, physically, but stated that he did speak of funerals.  Because of this, Willem will now be getting a permanent sitter to be bedside to watch over him.

Willem did manage a ride around the 8th floor in his wheelchair today.  Which he complained about.

Staying in PICU

X-Rays this morning reveal that the right lung is worse. Doctors not sure if the x-ray is showing atelectasis (lung collapse) or inflammation. Willem will be staying in PICU.

Administering more pain meds then respiratory therapy.

PICU: 31 Jan 2012 05:30AM

Respiratory nurse and Willem's nurse took my laying down as a sign that it was time to speak loudly. Harrumph.  Respiratory nurse tried a device called an acapella that Willem used with some reluctance.  He said this too caused him pain -- pain in his chest in particular.  Respiratory nurse seems timid... Keeps asking me what we should do.  I want to say "Go get a friggin' candle and have him blow it out!?  I dunno... You're the expert!"  My take is to keep trying; go slightly past the point of comfort and to keep trying.

How did they mess this up?!

Now he's sporting a fever.  They're also administering antibiotics as a preventative measure because of the stomach contents that went into his lungs.

Vitals pretty much the same as before.

PICU: 31 Jan 2012 04:15AM

No change.  Resting. Going to try and get a little sleep myself.

PICU: 31 Jan 2012 02:15AM

Respiratory nurse woke Willem up to give him a back massage with a pneumatic vibrating massager.  Willem hated it; said it caused him great pain but he powered through it nonetheless. Like a champ.  Very tired boy -- hates this floor of the hospital the most and everyone on it as well. But... His breathing is a little better but still working for it.

I fear a possible intubation yet try to acknowledge the fear and then ignore it and enjoy the present.  I think that is what all this acceptance hubbub is all about: touch him; love him; comfort him; accept and enjoy that I have him.

BPM: 101
Ox: 98
RR: 45
BP: 104/62

Forgot to mention that he was given morphine a while before the respiratory therapy.  Or did I mention that?  Daddy getting sleepy...

PICU: 31 Jan 2012 12:15AM

Willem awakened by the respiratory nurse to massage his back and work on breathing.  Willem complained of intense pain in his back -- 'said he is at a ten on the pain scale; where ten is the highest. And that was the end of his respiratory therapy for the now.

BPM went as high as 150
Ox 96
RR  between 50 and 60
BP 104/66

Administering Loratab (like extra strength Vicoden I am being told) for pain.

Some talk of his bladder being full because he hasn't urinated since 3pm yesterday which could be the reason for the intense pain in his back and, to some extent, increased respiratory rate.

I told the nurse to get us a urinal and we'll make him pee.  He peed. He peed a good 300ml.  No change in RR yet: 50 to 58
BP 123/74

Would like to see his RR back in the 30s again.

Coughed a little bit.

PICU: 30 Jan 2012 10:15PM

Resting.  Occasional moans with no apparent correlation with changes in vitals.  Probably in a little pain. Now adding potassium as he is a little dehydrated.  Respiratory will be coming in to do cough assist and deep breathing to get his lungs to open up more.  In looking at him, I see a boy that's having a difficult time breathing.  It pains me.

Willem was supposed to have a friend from school visit him around five today but we had to call and cancel given the circumstances.  We hadn't the opportunity to tell Willem yet and while he was being wheeled up to PICU he wanted us to make sure to tell his friend that he was going to be in a different room.  He was crushed to learn that he would not be able to see his friend.  At this time I wish to thank Willem's friends who come to visit and play with him -- it means so much to him and to us as well.  Thank you for helping Willem be the boy that he is and for being a crucial part of his recovery.

PICU: 30 Jan 2012 8:15PM

Mission tonight is to get him to cough.  Giving him Albuterol but it may have made him throw up so holding off on that.  Coughing a little bit on his own.

BPM 113
Ox 95
RR 37
BP 91/44

Being given oxygen through a mask but just switched to a... I forgot what it was called... It's a mask that allows for 50% pure oxygen and mixes it with air -- 50/50.  So next step is no mask as his oxygen saturation is good.

Man what a tough kid.

Willem asked if someone could spend the night with him and I raised my hand and jumped up and down exclaiming, "Oooh! Oooh! Pick me!  Pick me!"

He did.

Score.

ACCEPTANCE: PICU after Broviac

This word, "acceptance" -- and phrases and words like acceptance -- have been pushed on me of late by more than one person and from many different angles.  Reading, talking, trying, and crying my way ever so closer to this allusive state of being and I am now being tested -- all when I think I just might give my interpretation of acceptance a try:

Willem's surgery to put in his broviac was successful but he is having trouble breathing and his oxygen saturation levels are dropping.  He is currently in post op fighting any attempt to give him oxygen...
We told the doctor to let us go back there and help Willem and they finally agreed.  We arrived to find our boy struggling.  Struggling for air and struggling against attempts to give him air.

To make a long story short... They just needed mommy and daddy in there to do some tough love. He  kept the mask on after we got in the room.  We also did some visualization techniques and worked as a team.  Willem agreed to leave his mask on for x time to get y time in breaks -- even agreed to hold the mask so I could rest my arm. My ruse.

Heart Rate (HR)150 BPM; Oxygen Saturation (Ox) 80; and Respiratory Rate (RR) at 60+ means he goes to PICU.  Docs talked of ventilating and I got a little upset and said to give it some time because he started to get better with mommy and daddy in with him.

7PM
Where he's at now:  HR 119; Ox 98; RR 35-52; BP 93/20  (all good stuff)  RR needs to drop and stay dropped or he goes on the ventilator.

Check for MUNC Then Forward

Willem is ready for his bone marrow transplant (BMT) but transplant doctors want to check Liliana's and Willem's blood for the MUNC gene mutation before proceeding. The MUNC gene mutation is where HLH has affected the GI system -- like Willem's. There are five cases where HLH has affected the GI system and they're all in Pakistan. The genetic test will be done in Cincinnati -- which is good because  they still have Lili's and Willem's blood on file.  Time frame?  Not sure yet but we've just now been informed that the gene test is priority in Cincinnati.  When (if) the results come back that Liliana does not have the MUNC mutation, Willem will begin his BMT.

We got a brief lesson in BMTs:  Day zero is the transplant day, so days before are "day minus 7" and the days after day 0 are "day plus x." (where x = is the variable for the unknown number of days to engraftment).  The hardest days for Willem will be days minus 7 to whenever engraftment (incorporation of grafted tissue into the body of the host) takes place (somewhere between 0 and 30 is a number I got of the internet).  "Toughest days for Willem will be day -7 to day +16 (ish)" -- Dr. Foley. 

There is a possibility that we may get to  take Willem home - even though he's on TPN and lipids - before transplant.  More home care.

A1 Sauce

We lay awake in our beds and we dream of infinite possibilities; we fantasize and we wish for things.  Willem's overriding wish these two days past has only been for a taste of something with flavor. Anything. He begged and he pleaded. It was a day and a half struggle but we finally got approval for a spoonful or two of A1 sauce; Willem's favorite and the closest he will get to a steak for a long time.  Pray that it is only a long time and not forever.  I fear terribly for my boy but hope is not lost.

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Thank Yous
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Thank you Scott Barcheski for the unexpected and delightful visit yesterday.
Thank you Pam and mom Weston
Thank Bill Vreeke for the awesome party last night -- a necessary diversion.

On decadron and VP 16.  Ultimately doing the transplant sooner.  IO2 receptors lower and ferritin levels still high.  HLH in the duodenum and Willem not adequately responding to the treatment. There will be a transplant conference on Monday and the consensus is that there's no reason to wait because the surgical anastomosis is healed.

Willem is very hungry and crying a lot -- exclaiming that he just wants something with flavor.  Angry that the doctors cannot seem to make up their minds and that they need to hurry up and do something.  It was a fight to get authority to allow him to have sips of water.

Fall

An attempt was made to put a feeding tube into Willem's intestines, through his stomach but the HLH has caused a new stricture which is why he had been throwing up. The last bit of hope I had for his recovery went with this news.  All we have left to hang on to now is that the bone marrow transplant actually happens and then that it works.  I am feeling numb and hopeless.

Downward

Threw up 450 ml without having had food or drink so back to the abdominal drainage bag.  Add now TPN and lipids to his tower of bags.  He will also be getting a broviac.  Again.  More bags.  More tubes. I don't know if I feel like keeping this blog up anymore...