“Yay! Ben! We don’t have to come back here for an entire YEAR!!!” I grabbed his small hand in mine as we walked down the hall away from the room where he had just completed his MIBG scan. It had been six months since his prior scan and report of “no evidence of disease”. Dr. Greffe told us at our semi-annual appointment that if these scans came back clean that we would move to annual scans. My system heaved a huge sigh of relief as we moved further away from the world of neuroblastoma.
A whole year, Ben! We don’t have to come back here for an entire year. I smiled as I held that little hand in mine, all but skipping with joy down the hall. Ben, being a newly minted eight-year-old, didn’t really seem to care about the news I was basking in. He had nearly forgotten about Â the chemo, surgeries, radiation, bone marrow transplant, and the months of painful antibodies and huge horse pills he learned to swallow at the tender age of three. This grueling therapy had robbed him of being a toddler but it had kept him in remission for four years. Dr. Greffe said that it was uncommon to relapse this far out. Dr. Greffe said that we’d be moving to annual scans. Dr. Greffe said…
Dr. Greffe said he’d call later with results.
I was laying on my stomach on the bed, letting “scanxiety” release from my body. This is a phenomenon I can’t explain, this “scanxiety”. Those in our “position” know that scan time is something that is inevitable and you always breathe a sigh of relief when it’s over and everything’s clean, but there’s always that anxiety that flows through the patient, the caregiver, family and friends that there might be something lurking. Something set on destruction and completely willing to explode and ruin life as you know it. I always worry during scan time. It can’t be helped. This is my baby we’re talking about, after all. My precious, wonderful, sweet son who was fighting with his sister downstairs as I released my “scanxiety” in the best way I knew how: by doing absolutely nothing.
Becky in radiology said that his scan looked good. Becky loves all the neuroblastoma kids. She has a bulletin board filled with pictures of neuroblastoma kiddos she’s known over the years, and Ben’s kindergarten and first grade picture were posted up there on her “board of fame”. Ben was the kid she pointed out to other neuroblastoma families as they dealt with their own “scanxiety”. I never heard her say it, but I can only imagine her words, “See this boy here? Four years he’s been clean. There is hope. Kids do survive this horrible disease and Ben is one of them.” Becky said his scan looked clean. She knows how we as parents suffer through scan time. She told us with as much authority as she had that his MIBG scan looked good. Becky said “See you next year, Ben!”. Becky said….
The phone rang shaking me out of my attempt to clear my mind. Caller ID said it was Dr. Greffe. I picked up the phone despite the cacophony of the ongoing battle between Ben and Madeline downstairs. I expected that the phone call would be very short. All he was going to say was that everything looked good and that he’d see us in a year. Right? But Dr. Greffe said…
“Sarah, the CT scan shows that Ben has a mass behind his heart.”
That metallic taste that goes hand in hand with a rush of adrenaline overpowered my mouth. Stunting my ability to speak. Stunning every sense I have. My mind swirled with question after question. It reached and tried to grab hold of all the positive things that Dr. Greffe had said. That Becky had said. That statistics had said. What had they said? What was he saying? Are you telling me that Ben’s cancer is back? BUT YOU SAID…!
I heard what he was saying. Behind Ben’s beautiful, wonderful, kind heart, there was a mass. Something growing. Something that didn’t belong there. Something trying to destroy my son. Wait. What are you saying?
Without fully realizing what I was doing, Matt came up behind me and put his hand on my back. I guess I hadn’t said anything at all since my answer of “hello”. Matt must have realized that I was speaking with the hospital. While I hadn’t made any audible statements my actions said it all. I had sprung up out of bed, stumbled to the railing of the stairs and was holding on for dear life. I was doubled over. I can only imagine what my facial expression was.
“What are they saying?” he whispered. He took the phone from me and turned on the speaker. Since I couldn’t say anything, Matt announced that he had switched the phone to speaker and needed him to start the conversation over again.
Dr. Greffe said. He said. He said that there was a mass behind Ben’s heart. He had already taken the liberty of scheduling an emergency biopsy for the following day. While they couldn’t confirm that the mass was definitely neuroblastoma, they knew it was something that needed to come out right away. Matt and I sat on the floor in Madeline’s room. Surrounded by pink walls. A fluffy canopy bed. Bright. Girly. Pretty. We faced each other. The phone was laying on its back spewing terrible awful hideous information at us in the midst of Madeline’s sugary sweet room.
We remained silent as we listened to Dr. Greffe give us details of what needed to happen the next day. No eating after midnight. Check in at 0:00 hours. Surgeon will go in through Ben’s back. Plan to stay overnight. We’ll do everything we can. I’m sorry.
Dr. Greffe said he was sorry.
The ice cream cake we got as a celebratory “clean scan” reward sat melting on the counter as I went downstairs to do what had to come next.
I said, “Ben, please come to me.” I sat down on the couch and motioned for Ben to come over. Ben thought he was in trouble for fighting with Madeline. He started to defend his actions as I enclosed him in my arms. Holding him. Hugging him. Getting ready to prepare him for what was coming next.
I said. My God. What do I say? How do I tell this wonderful, sweet boy about what comes tomorrow? After all, I just finished telling him that we didn’t have to go back to that hospital for a whole year. I’m his mom! He trusted me! Dr. Greffe said. Becky said. I said.
What do I say?
“Ben. The hospital just called. They said your scans showed a mass behind your heart.” My arms encircled the small frame of his body. His weight a slight 40 pounds on my lap. My eyes staring into his big brown ones as I told him of what was going to come next. I watched as his brow furrowed. I could see the questions swirling in his head as he processed the news of what I was telling him. More pain. More scars. More yuck. But I wasn’t prepared for what he asked. What Ben said.
“Mom, am I going to die?”
And as my mind scrambled for what to say to my beautiful eight-year-old son, my mouth took over.
“Ben, I sure hope not. We don’t know what’s going to happen but I can promise you that we’ll fight with all we have and go wherever we need to go and do all we need to do to get you through this. I will never leave your side.”
That’s what I said.
And one year later, here we are. We’re still fighting. We’re going where we need to go. And I’m never leaving his side.
We’ll get through this kiddo. And that’s all I have to say.