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.