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: