National Childhood Cancer Awareness Month

I was wearing a pink turtleneck and tan pants on the day that my world was ripped out from under me.

It was February 19, 2004. A Thursday. I was at work doing what I like to call “employee relations”, which was really just a lengthy run of “cube-hopping” to chat with my co-workers (one of the few joys of being in Human Resources). People kept asking about my two-and-a-half year old son, Ben, because he had been through the wringer recently with a variety of bugs. We also chatted about the very soon-to-be-born child I was carrying. There was speculation as to if my baby was a boy or a girl since I was not one to find out the gender before birth. I like surprises. At least “good” surprises.

I remember walking back to the office and being greeted with “you need to call Matt right away”. I knew immediately that something was wrong with Ben. We had been averaging two visits a week to Urgent Care or to his pediatrician for the past several months with no real answers. He had been misdiagnosed repeatedly with everything from a simple virus to constipation to a hip infection. In their defense, he was exhibiting very basic symptoms like a runny nose, chronic low grade fever, and general lethargy. He was two-and-a-half. His vocabulary wasn’t much beyond “owie” and “mommy”. He couldn’t exactly tell us what was going on.

When we were at church the previous Sunday, Ben was running around with some other children. They were running up the steps to the stage. Ben stopped at the bottom of the steps and collapsed. His little legs just stopped working. Matt and I saw the entire thing play out. We looked at each other and we both knew that something was really wrong.

The next week was spent seeking out specialists. Matt took Ben to a bone specialist near Children’s Hospital that Thursday morning. The bone specialist told Matt to take Ben to the emergency room at Children’s right away. That’s when Matt called me. Unfortunately, I was out cube-hopping. And when I was greeted with “call Matt right away”, it was like someone scratched a needle across a record. Everything stopped. My world was silent. I grabbed my bag and coat as the tears started to fall. I walked through the lobby of my workplace knowing that I would never be returning as an employee. I just knew in my heart that it was over. I knew that the next phase of my life was going to be horrendous.

My hands gripped the wheel of my beloved blue Subaru as I drove toward the hospital downtown. I had stopped off at the house to grab some clothes, diapers and toys. I assumed we’d be staying overnight but since Ben hadn’t been formally seen by an ER doc yet I didn’t know what to expect. My mind kept drifting toward my Ben dying. I begged it not to go there. I tried drowning out my thoughts to mind-numbing loud music but nothing helped. I kept seeing my son. So small. So sweet. His beautiful red hair against a white silk pillow. Everything so quiet. A toy train placed in his hands that were folded across his chest. Dressed in pajamas as if he were just going to sleep. Saying goodnight to him as the funeral director closed the lid on my son’s life. On my life. He doesn’t like the dark! He doesn’t like to sleep alone! You can’t take him away from me!

I couldn’t stop until I walked into the emergency room and saw him lying on Matt’s chest. So small. So sweet. His broken fever surrounding him in a large circle of sweat on Matt’s shirt. He’s okay. For now, he’s okay. I all but ran to him. Scooping my sleeping baby off Matt’s chest and snuggling him against my pink turtleneck. Holding him. Kissing him. Praying that he was going to make it through whatever this craziness was.

We were in that terribly crowded waiting room for hours. We watched as children with broken bones were fixed and kids with gashes were stitched. Then the rest of us were helped. The children with fevers and coughs were finally called into triage rooms. We told the intake nurse of all of his current issues. The leg issue was the most pressing, we thought. Of course, when the doctor came to visit us Ben was not limping at all. In fact, he was quite chipper by that point. And while I was glad to see him responding well and not in obvious pain, I was concerned that they were just going to send us home again.

More time passed. The one benefit of being stuck in that triage room was having our own personal tv. And Thursday night meant “The Apprentice”. It was the first (and best) season, after all. That Omarosa was one evil troll! Matt and I delved into watching the cat fights on tv as Ben played with his toy trains.

Hours later, a radiology tech came for us. They were going to do an ultrasound on Ben’s pelvis to see if there was something going on that would be causing him to limp. We tried to cope with the stress of the testing – even going as far as to ask if she could tell us the gender of the baby. She wasn’t really up for jokes. We had no idea at the time, but what she was seeing on Ben’s ultrasound was very disturbing. She couldn’t tell us since she didn’t have the authority, but she must have known that the two ding-dongs who were trying to make jokes with her were getting ready to receive the shock of their lives.

Ben was admitted right away. They placed him on the infectious disease unit, which gave me cause to think it was still some sort of bone infection. I was feeling a bit more secure since I was able to see Ben laugh and play with his toys. When we got to our room, a nurse instructed me to put him in a little yellow hospital gown and place him in this gigantic cage that they considered to be a “crib”. It wasn’t like any crib I’d ever seen. I understand the high metal bars were for safety reasons, but it was a hideous looking contraption. I was reluctant to place him in this gizmo, and he wasn’t too happy to be in it himself. The nurses started an IV on him, which broke my heart. He cried and screamed at being poked and there was nothing I could do to stop the pain. They placed a splint on his arm to keep him from ripping the IV out and then left the room. Once I got Ben to calm down a bit, I placed him in the “crib” and started to change into my night gown. Right as I was stripping off my pink turtleneck, a doctor burst into the room and started asking questions. I tried desperately to cover my eight-month-pregnant self as he began his barrage of questions, apparently oblivious to my 1/2 dressed state. As I pulled my nightgown over my head, I answered his questions. I asked some of my own. It appeared that Ben had some slight bruising on his eyelids that I had never noticed before. The doctor made note of it in his chart. Then he asked, “How long has he been this pale?” I was stupefied. See, we are redheads. Freckles and everything. We burst into flames when we’re out in the sun. I stammered a bit and told him “He’s always been this pale. We’re pale people.” Is paleness some exotic disease? I had no idea. I would have totally used that excuse to skip school had I known that it was a symptom of something terrible. He noted “pale” in Ben’s chart and left the room.

So, Ben and I were left to fend for ourselves in our plastic lined room on the infectious disease unit. I walked over to check on my sleeping baby in the giant cage and noticed that he was surrounded by a pool of blood. I frantically pressed the nurses button screaming that there was blood everywhere and within seconds a team of nurses were surrounding his bed. His IV had come out and blood had leaked everywhere. It was a terrifying sight. After they reinserted his IV I scooped him up and held him close. The nurses changed his sheets and then motioned that I could place Ben back in the crib. I refused. I sat in a chair holding Ben all night long as he tried to sleep between the all-too frequent blood draws and blood pressure checks they kept inflicting on him. It was a long night.

I can’t even begin to tell you how many tests were run on my son over the next couple of days. When I saw Ben’s pediatrician in the hallway at the hospital I knew we were about to get some terrible news. I had no idea just how bad it was going to be.

It was very official. They came in and sat down. Matt and I were standing. My parents were in the room, too. My mom was holding Ben. He was asleep in her arms. Then they told us. Horrible. Hateful. Evil words.

Neuroblastoma. Stage IV. Unfavorable tumor. High risk for relapse. Disease has invaded every bit of his body. It was in his bones. In his bone marrow. In his skull. His little pelvis had holes in it from where the cancer had eaten through. We finally had the answer as to why he was having trouble walking.

Then the doctors told us that we’d be moving to the oncology floor later that day. Ben would start chemo very soon. He’d have six rounds of high dose chemo, surgeries to remove his primary tumor, a bone marrow transplant, 12 rounds of radiation therapy, and six months of oral chemo/antibody therapy. The next fifteen months of our lives were written out for us. We were on a mission to save our Ben from the beast named Neuroblastoma.

I’ve heard people ask a couple of times if doing all of that to him was worth it. Should we put him through all that we’ve been putting him through? Shouldn’t we let him go and give him to God? Well, call me selfish, but I kinda want to keep my son. He made it through that first leg of treatment and, yes, unfortunately he relapsed last year, so we’re back in the fight. But there is no way in hell that I’m giving up. There is hope. I have hope. Ben has hope. Yes, we are tired. But I believe that fighting for his life is the right thing to do. So, there.

Along the way we’ve met so many others. All of them battled. Some won. Others didn’t. But they have all changed our lives in some way. I hate cancer. I especially hate how it has tried to destroy my son’s life. Twice. But while I truly hate this disease it has made me a better person. A stronger person. A compassionate friend. And one heck of a mother.

I do wish that cancer would get cancer and die. But since that doesn’t seem to be on cancer’s “to-do” list any time soon, I’m asking you to wear a gold ribbon this month in support of all the brave kiddos who have battled cancer. And please pray that my Bean wins his fight.

3 thoughts on “National Childhood Cancer Awareness Month”

  1. Please know that I think about you guys all the time and I am praying for all of you.

    Sarah,
    You definitely need to write that book that you said you would write some day. You are such a great writer 🙂

    I miss you.

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