No good weapons to fight his war against cancer

Imagine…

…you and your wife are expecting a baby, your second child, on your way to having the family you’ve always wanted. Now your 3 year old boy will have a little brother to play with and to look after. You are so excited to watch the two of them grow up together. You can’t wait to see if your new baby boy will resemble his big brother or be completely the opposite. It is an awesome, exciting, and blessed time.

Now imagine your new baby crying all the time – I mean all the time. Something is not right. His big brother was nothing like this. He hardly breast feeds without screaming and crying. At the most, he sleeps about 1 hour at a time by himself. The only way you can get him to sleep is to prop him up in your arm as you sleep sitting up on the couch. This is a nightly ritual. You go back and forth to the doctor’s office and they find nothing wrong. You think it could be colic or acid reflux but the doctor dismisses those ideas. Finally the doctor believes he has a cold with some sinus congestion, so you take him home and if he isn’t better in a week they want you to return. The next week while giving him a bath you and your spouse notice odd, olive-shaped bruises around his trunk area where you pick him up, that have appeared out of nowhere. You fear the worst, but are in denial. Maybe it is a virus of some sort? You don’t know what to think as you read through the “Baby 411” book, you read the word “cancer”, but quickly gloss over that because he is just a baby, plus he isn’t acting any different at the time you discover these bruises. So you and your spouse plan on taking him to the doctor’s first thing in the morning to get checked out.

That was the last day of my old life. My new life began the next day. My wife and I planned on meeting up at the doctor’s office as I was running a little behind. While, on the drive over your wife calls and says to “hurry up and get over here” as you hear panic and worry in her voice. You immediately feel the pit in your throat as it settles down in your belly on the drive over to the doctor’s office. Right before you pull into the doctor’s office the office calls and directs you to go immediately to the hospital. Your baby has been rushed to the hospital in an ambulance with his mother.

I arrived at the hospital and there was our little Willem held by his mother on a hospital bed with what felt like hundreds of doctors and nurses around them. They were drawing blood for tests to find out what was wrong with him. In just a few short hours we went from giving him a bath to watching him hang on to life. Soon my wife was ill, exhausted and scared. I didn’t know what to do. I couldn’t take care for him or her. I was frozen, lost, and terrified. As I look back I can’t even remember what was actually happening to Willem at the time. It is all a terrible nightmare to me that I have trouble remembering.

I do remember meeting Willem’s primary oncologist that day. At the time I didn’t know that she was an oncologist or what kind of doctor she was. I just remember her sitting us down and starting to talk. I could see and hear her concern by the way her voice quivered as she began to speak. “He has Leukemia” is all that I heard. I lost it. We cried and cried. I couldn’t believe it. What had just happened? What was going to happen? – A two month old with Leukemia? I had never heard of such a thing before.

We went up the elevator with Willem to the PICU, and then we were separated from him for a while. They kept us in the waiting room with our family. It was and still is but a haze, as I try to recall the events of that day. Soon our oncologist and another specialist came in to discuss a procedure called Leukopharesis that would be Willem’s only chance of immediate survival. The Leukopharesis procedure would circulate Willem’s blood out of his body through a machine and remove all of the cancer cells (white blood cells) that were clogging Willem’s blood stream and then return the blood to his body. Willem presented with over 300,000 white cell count. We were very lucky we didn’t lose him that day. I’m grateful for the months he did survive. He was true joy and a gift from God.

The last thing I remember about that afternoon was going into the room to see Willem after the procedure had started and things had calmed down slightly. There he was, our little baby, with multiple tubes and wires sticking out of him, and hooked up to a multitude of machines. He was blue, listless and sedated. We sobbed again. Our baby lying there on the verge of dying and we could only stand there. I prayed harder than one could ever pray. We wouldn’t hold him again for weeks as he fought to survive.

I hate the phrase “winning the war on cancer”. No person beats cancer. They either get lucky or there is a treatment that works. Willem never had a chance to “beat” cancer. There was no viable treatment. High dose chemotherapy, total body irradiation, and a bone marrow transplant were his only choices. Those aren’t treatments they are tortures. What Willem had to endure during his short life was terrible. No adult could bear what Willem went through. The doctors actually said that the littlest ones get the highest doses of chemo because they can handle it and adults can’t. The only reason they can handle it is that they can’t tell us how horrible it is. We watched Willem endure various infections, almost dying multiple times. He had severe seizures as a result of high-doses of Methotrexate. We watched him suffer the effects of chemotherapy such as severe Mucositis, including difficulty breathing from the swollen membranes, the sloughed lining, and thick mucus. Also there were painful mouth sores, a persistent and horrific diaper rash, not to mention constant diarrhea, and throwing up. One of the hospital staff said that some kids described Mucositis as feeling like they had razor blades from the inside their mouth all the way through the GI tract.

We had to stand aside as Willem got poked and prodded for countless blood tests and numerous doses of medication. We had to argue with hospital staff, which insisted on forcing more and more formula into his little belly, even though he would just vomit it up. At the time Willem never had more than two ounces of formula or breast milk during one feeding and they tried to force 4 then 6 ounces down him at one time. We battled with those in the hospital that insisted on disruptive physical therapy even though we just wanted our little boy to survive and could care less about whether his head turned one way more than the other, just as long as we had him with us and he was comfortable. We stood by as they stuck GI tubes down his nose, which later on we had to do ourselves. Try sticking a 18 inch tube down your 6 month old baby’s nose, making sure it doesn’t come out back his mouth. Then you had to listen with a stethoscope to be sure the tube was in the right place, or else it could cause serious problems. We had to give him shots in the leg. My wife and I spent tireless hours lathering his butt in diaper cream. We were always trying something different until we found what method or butt cream worked best to protect his little bum. We had to suction the “junk” out of the back of his throat as he suffered through Mucositis. Suctioning the back of his throat is such a brutal task because he always fights against it; thrashing his body and little arms. To an outsider this must have looked like we were torturing our little guy, but we had to do this to keep him from choking and to maintain proper oxygenation. It is amazing what you will do for your child when you need to. We always slept with one eye open, always ready to start the suctioning. We did it. I would keep doing it if I only could.

I remember telling nurses and residents what to do as Willem’s O2 saturation dipped down in the 80s. I remember pleading to the hospital staff to give Willem Lasix because he was having trouble breathing and the extra fluid they were giving him and he was retaining was most likely the cause for the breathing and O2 sat issues.

Whenever Willem felt good, or better I should say, he would smile. His smile was infectious and the nursing staff would line up to get a look if he was doing well. I used to say that his smile was the nursing staff’s drug; they just needed to get a Willem fix. Willem’s resiliency was astounding. The doctors were amazed that he survived for as long as he did. I’m sure that some of them had written him off early, but proved everyone wrong and he and he made it through 3 intense phases of chemo, 1 week of radiation and, 1 bone marrow transplant. These treatments gave him his best and only chance at survival. Yes, 30-year-old technology with a couple of tweaks to the protocol gave him his best chance. Even with a 100% donor match from his big brother’s marrow, Willem didn’t survive. One week after coming home from a 6-week recovery after transplant, Willem relapsed. This time the cancer was back even more aggressive than when it presented the first time and Willem’s counts had just started coming back and were already cancer – we had no more options. We were told this on a Sunday evening and he died 4 days later on October 4th. We had to watch my son die. Keeping him comfortable as best we can, we had to let him go. Just typing these words creates the worst pain and longing for him. I held him as he died and took his last breath. I felt him pass. That feeling is something I will carry the rest of my life. I had to let my son die because there was no cure. We have not even come close to winning a war; so don’t tell me that we have. Don’t tell me about beating cancer because then I feel we lost, or we didn’t try. You better believe we tried and we fought. We would keep fighting, but we didn’t have a choice, we had nothing left to fight with, but our love. Willem had endured so much for us. I miss him more than life itself. Through it all, he had no idea what he was fighting, but he fought. Willem would’ve won his battle if he had the right weapons to fight the battle not out-dated methods because of under funded research.

I lost my child to cancer, so I don’t want to hear about the triumphs of medicine until they are triumph for all. The war on cancer isn’t close to being won until the war is won on all fronts. From breast to pancreatic to lung to blood to childhood, these are the fronts of the war on cancer and shame on anyone who says we are close until we can save babies like my son Willem. Cancer-types that aren’t as well-known as breast or colon are just as important if not more important to research because if we can find cures to the complex genetic mutations involved in these then maybe it will lead to a cure for other well-know types. Look up Infant Leukemia, specifically ALL with the MLL gene rearrangement and then tell me we are close. Yes, there is a lot of great research being done out there, but the principles behind funding research should be equal funding for all cancers, not more bang for the buck!

I miss my little guy. I use to refer to him as “Chill Will”, “Monkey Butt” or “Pickle Butt”, his butt was constantly red and bumpy you know. He never sat up, crawled, ate “real” food, or talked. I never heard him say “daddy”. His big brother Kiernan never got to play ball with his baby brother. My oldest son still talks about Willem. He wanted a little brother. He knows he still has a little brother, but that now he in heaven. When he sees a baby toy he states “he wants to get that for his baby”. Now we have to live the rest of our life wondering what could’ve been. For Kiernan’s sake we push on and have as much fun as possible, but there is always that ache inside ready to explode into crying or anger. Now we look for signs of Willem. Peculiar visits from a mocking bird, an opportune rainbow, or a visit from a lone little bumblebee… those are the kinds of things we look for. We believe they are signs from Willem. Instead of having our two boys together, we have our one angel on earth and our little angel in heaven.

I imagine a world where no more kids have to suffer from cancer and the effects of the barbaric treatments. Until then the war is not over.

Little Bird

I had a visit from a little bird a couple of times at work last week. He kept brushing up against my window and we actually spent about 5 minutes staring at one another. I couldn’t help but think of Willem looking up at me when I used to play with him.


Little Bird

Little bird knocking on my windowpane
You came fluttering by to visit with me
Hop on over on my windowsill
You got my attention, so I will listen to you
Pretty bird gray as the gloomy sky
You tilt your head with benevolent eyes
As you deliver your message from beyond the rain
To help me survive this overwhelming pain
If I could only chirp in your language then you
Could take my message up to your skies of blue
Please sing him a song like I use to do
And tell him I love him and I miss him too

The Conquer Childhood Cancer Act

If you want to help children who are stricken with cancer go to this link (the link is the title of this blog entry) and write a letter to your representative showing your support for this legislation. It only takes a couple of minutes (the letter is filled out for you) to complete and it can help make a big difference. Childhood cancer doesn't receive close to the same amount of funding as adult cancers; these kids need the playing field leveled in order for them to have hope of a cure.

If you want to know why I'm so passionate about this read more of my blog or go to the caringbridge site I maintain in honor of my son Willem.

http://www.caringbridge.org/visit/willembolan

Superbowl Sunday – More Like Super Waste of Time Day

Yes, I said it – the Superbowl is a waste of money and time. The hype behind this game, remember it is a game, is ridiculous. I'm so sick of professional sports, even college athletics. I used to sit down for 2 to 3 hours straight with a bag of chips and a tall glass of soda to watch my favorite team. This time was spent yelling at the T.V., getting frustrated, annoyed, angry and excited at every shot, call, catch, run, penalty, foul, etc. What a waste of time!

Wake up! Those 3 hours could be spent playing with your kids, making dinner for your family, talking to friends, getting stuff done around the house, or just talking and relaxing with your significant other about something more meaningful than a stupid game where all the athletes are drastically overpaid. I don't think any of them should be our kids' heroes because the majority of these athletes are self-centered jerks.

Most (maybe all) of these guys make more money than the President of the United States. Something is really wrong here. The only thing these guys do is play a game – football players, play what 17 games in a season tops?

I admit it, occasionally when the Seahawks (yes I'm a Seahawks fan) are televised I'll watch some of the game. Last time I watched a game it annoyed me so much I turned it off and vowed never to watch a game again.

Our society, puts value in places that just don't deserve it. Entertainers are not saving the world, well unless you are Oprah and you think you are saving the world. Actually, Oprah does a lot of good and has a mountain of money to donate, so I'll leave her alone. The television has demonstrated to me our society is extremely shallow – We just sit there and drool on ourselves everyday letting our brains turn to mush.

Let me be clear about something, I am not claiming that I never watch TV, hell my son is sitting there drooling on himself right now watching Thomas the Train; plus there are a few programs out there that I watch, I just can't turn off Family Guy when it is on. I simply wish people (myself included) would pay less attention to the TV and quit putting all of these athletes on a pedestal then maybe people that really deserve the money could make more of it like social workers, teachers, soldiers, and nurses. Again, as I stated with Oprah, there are some pro athletes that spend a lot of their time and money on charities, and are genuinely good people, but how can they justify making multiple millions of dollars for playing 17 games over the course of 5 months?

So, stand by me and turn off your 50" Plasma TV and have a nice dinner with your family and let those football players play their little game.

2007 – Eight Months with Willem

Two thousand and seven began with the birth of my second son, Willem David Bolan. On January nineteenth, Willem was born. Life seemed to be on track, a great job, a wonderful wife, two boys I adored, a comfortable house in a nice neighborhood, but there was something wrong – Willem was always crying and upset, he hardly ate, he hardly slept, and then he developed what seemed to be a minor cold, with sinus congestion. After numerous trips to the doctor we were frustrated, as he didn’t seem to be getting better. The doctors didn’t have any good answers besides the cold thing. We were at our wit’s end. Finally, after noticing some odd bruising on his side and back, we got an answer, but this answer we didn’t want to hear – “Willem has Leukemia” the doctor said. Our world immediately turned upside down as we were slapped in the face by this harsh reality.

Our train had fallen of the tracks. Never to be fixed. Never to be placed back on the rails. Never to return from where it came. Life had immediately changed – we were given a pill that was impossible to swallow. Life was now unbearable. How were we going to get through this?

Willem was just seven weeks old when first diagnosed. I had hardly gotten to know him or form that fatherly bond with him, but I would soon develop a bond with Willem that would reach to the end of the universe, to the end of time.

The first few weeks in the hospital were a nightmare, he was extremely sick and we battled to keep him alive and we did it. The treatment Willem went through over the next few months was excruciating to watch and for him to endure. Willem was getting stronger and we were getting through everyday, learning how to take care of him. We did things as parents, which no parent should ever have to do to their child, but we gave him his shots, put the feed tube down his nose, and suctioned the secretions from the back of his mouth without a second thought – it had to be done in order for him to survive.

We had been in and out of the hospital since the end of June, Willem was in remission and by the end of August a bone marrow transplant was planned. Everything seemed to be working in our favor, my other son Kiernan was a one hundred percent match and Willem was getting stronger. We thought we were beating the disease, but it proved to be much stronger than the treatments Willem endured. The official diagnosis was Infant Leukemia, specifically pre-B cell ALL with the MLL gene mutation. This is an extremely difficult form of ALL to cure, with less than a twenty percent survival rate. Our beloved Willem didn’t make it. We were home just about a week, after a one-month stay in the transplant unit. His counts were back up and minor morphine withdrawal was our only concern. Maybe we could get the train back on the tracks after all? That wasn’t the case, Willem was getting weaker, and he looked pale and was lethargic. Initial labs showed a higher than expected white blood cell count. The next morning, my wife, Chris, took Willem to clinic to get new labs taken, just in case there was some mix-up, maybe there was an infection brewing, but there wasn’t a mix-up or infection – Willem’s counts had doubled and our worst fear was realized, the Leukemia was back, this time more aggressive than before. Within, one week after we discovered he had relapsed he died.

We loved Willem more than life itself. His smile would light up a room and bring sunshine into your heart. Everyone that met Willem, held Willem, or played with Willem is forever branded by his smile. One little boy, with one beautiful smile, changed hundreds of lives in eight months’ time and changed mine forever. I found strength that I didn’t realize I had. I didn’t know what love was until Willem showed me. Yes, he showed me – not with words, but with his eyes and his smile. I no longer fear death because I have felt it steal away my little boy, ripping out a huge chunk of my soul.

I will forever walk trying to fill Willem’s little shoes. Funny how I say little “shoes” as Willem never got to wear shoes, walk or even crawl? I will live the rest of my days taking care of my family, loving others, helping others and looking for signs that he is with me. Oh how I wish I could see a rainbow today…

What really is important?

What really is important? Is it having a great job? It is it having a healthy family? Is it living a long life and having enough money to live comfortably? What are we all complaining about? Who gives a crap about social security? Who gives a crap about health care? Obviously the government doesn't because they are driving the country into an enormous debt and spending all of our hard-earned money on protecting this country from a potential threat that may or may not kill american lives.

Well, I have news for you, the government is killing its own people. The government is not looking out for us. Health care costs are out of control and the coverage is getting worse and worse every year. Money that can be spent helping treat disease, or promoting research, is being spent fighting wars in other countries. Everyone supports the troops, but to what end? Supporting them until they get killed?

I've lost all confidence in our government. I laugh at both parties, the debates, their stupid politics, their stupid beliefs. Politicians don't believe in anything because they are afraid to say how they truly feel for fear of losing ground in the polls. Where do these polls come from anyhow? What really kills me is how our President doesn't believe in harvesting stem cells from embryos because it destroys human lives. These lives don't have a conscience yet, a brain, a heart. Our commander-in-chief says he is against this, but he somehow has the nerve to send our troops, someone's son or daughter into a war that never had a just reason to start. Where were the WMD's? Wasn't that why we went to war in the first place? Does everyone just want to forget that? He lied and people have died and are still dying. Thousand of Iraqis have died and continue to die. It just doesn't make sense. His pride and pig headedness are the reason we are still there. Does he really think we are that dumb?

My son died this past October from infant Leukemia – the reason he died is because the treatment has been pretty much the same for over thirty years. There have been tweaks to the protocol, but still no really drastic improvements. My son's chances were pathetic, less that 15% survival rate. My son, Willem, was only a baby, 8 months old, when he died. There is no money to be made in treating this type of cancer, Infant ALL; with all of the technological advances that are driven by potential profits, companies, for the most part, just don't care – it's capitalism baby! All about the bottom line.

It sickens me.

People in there extremely large and expensive vehicles sicken me. People in their half a million dollar houses sicken me. People who buy $10,000 TVs sicken me. People that pay for 200 channels of television sicken me. People that spend 300 dollars on a pair of sunglasses sicken me. Yes, I too like to have things. Sometimes I sicken myself when I fall in to the clutches of materialism – but come on now! Where do we draw the line between having a few things that we enjoy to having things we don't even realize we have anymore? Is it really necessary to give your fiancé a 2 carrot diamond ring? Will she not love you if you get her a 1 carrot diamond instead? If she won't then why in the hell marry her?

And… What is all this complaining about? I don't have this and I wish I had more money, blah blah blah. I used to complain all the time, actually I still do and hate when I catch myself bitching and moaning.

Another thought… Christmas really sucks! I think the world would be a better place if we abolished Christmas. Everyone says it is about Jesus and all that, but they don't practice what they preach. They don't help out those that are less fortunate. Hell, I'm guilty of this too. If one more person asks "how was my Christmas?" I will slug them. "Ok, Ted, get over it, Christmas was over 2 weeks ago." I don't know. I'm just sick of people's fascination with having stuff and having money. I wish there was no such thing – but then again I could never live off the land and hunt and gather my own food. I'm a big wuss. I wouldn't know where to start. I guess we need money to live, but at what price?

Capitalism is out of control. There is a product or service for everything. There are "pooper scooper" services for your dogs. I've even created ads (yes I'm guilty as charged, I'm in advertising) for a pet spa and hotel. They're freakin' animals. They drool all over the place, smell really bad, poop wherever, and are full of flees and pests. I love my cats, but I would never send them to a Kitty Hotel!

The Struggle

The past 8 months have been spent taking care of my son who was diagnosed with Acute Lyphoblastic Leukemia when he was just 7 weeks old. I've never shared these poems before, but now that he is gone I want to. It was the hardest thing I've ever done in my life, but I was prepared to fight for years. The cancer was just too difficult to treat. He was so brave and beautiful. I miss him.


Long, Long Ago…

Yesterday – I stood on the sun
I’d be no one – without you

Climb high – to the moon
Leave all the fools – behind you

Long, long ago – before the dinosaur
Before the earth was born – There was you

A million miles away – In a strange galaxy
There’s a brilliant star – A brilliant star – That is you

Tomorrow – I’ll melt in the sun
I will be the one – for you

I’ll paint for you – white mountaintops
Just like you – wanted me to

Journey to a place – center of the earth
Where God gave birth – to your soul

Listen to the sound – reflecting your soul
A panoramic view – surrounding you

Don’t worry ‘bout – The future son
I’ll protect you from – The storm
I’ll carry you up – To the highest point
And wait for the skies to break

We’ll illuminate – the atmosphere
And turn gray skies – to blue
Making all fear – just disappear
Washing to shore – far from here



Untitled

Just lying there with puffy skin
Just lying still, no reaction
Sitting here in a glass room
On display for all to view
Listening for signs of trouble
Praying nothing happens
Every day goes by without answers, no solutions
To the problem God handed to him before he could cry
He can barely open his eyes
When he does there’s pain inside
I’m useless, helpless
fighting without fists
I’ve got nothing to save him
I’m rowing without oars
All I can do is stand by his side
All I can do is hold him at night
If I could only see what the future will bring
Then I might awake from this terrible dream


Untitled

There’s a little door inside my head
that I closed to lock away all feeling to hide away all pain
There’s a windowpane that I painted shut
to keep away the demons to protect me from the cold rain
I can’t find where I put that thing
I can’t remember it’s simple name
I don’t recall what I was doing
or what I was thinking just yesterday
One week ago is gone forever
one week from now are no memories
Two weeks ago I won’t remember
unless I find the thing I locked away
Tomorrow will be different
in fact it always is
a rollercoaster that makes me sick
A week from now I won’t remember
what I was thinking right now
today


Untitled

How did this happen – I didn’t see it coming
The world keeps turning, but time is frozen
The days fly by and they’re all the same
Waiting for life to start up again
I’ll call you back when I get the chance
Right now I’m waiting for time to pass


Untitled

I’m stuck inside – I can’t get out
I’m stuck inside – Far underground
In a prison without walls
Stuck inside fluorescent halls
Miles away from the outside
I can see the trees, but they’re hard to find
I cannot breathe inside these walls
The air is thin – Suffocation halls


Untitled

Walking on a sidewalk stepping on the cracks
Forget superstition it keeps holding you back
Talking of triumphs – forgetting to knock on wood
Keep pushing forward never look back
Everybody must celebrate the good times
And not let the bad ones cloud the fact
That life is short, so breathe and enjoy
Don’t hold back – Don’t forget to laugh


Untitled

Little boy suckin’ on a straw
surrounded by God’s computers
held together by tubes and men
Their pumpin’ life’s solution in your veins
I was prayin’ for the first time I could remember
Wondering why all the words had left my head
It all escaped me but now comes back with regret
You’re stronger than I remember
You’re better than you said
He’s given you a solution to everything you missed
Little boy suckin’ on a straw
You’re stronger than I am
You’re sending me a message
To rise up and be a man
Letting your people stand upon me
To climb up and see your plan


What Happened

What happened to the quiet nights
What happened to the bright lights
What happened to the daytime
What happened to the fine wine

What happened to the lazy days
What happened to the warm rays
What happened to the sunshine
What happened to my old life

What happened to my boat’s oars
What happened to the ocean shore
What happened to the my homeland
What happened to my future plans

What happened to my happy home
What happened to make me alone
What happened to my little boy
What happened to all my joy

How did it happen – This strange thing
Came aboard and captured me
Stole my son and my family
Took me hostage and tortured me


Untitled

It’s all unreal – Everything I feel
Buried inside – Everything’s alright
Lost in a maze – Confused and dazed
Walkin’ a line – Stuck in time
Strugglin’ for life – Cut by a knife
Drifting away until night turns to day
and all my sorrow is taken from me