Relapse

For two seconds, I forgot. Forgot about the horrible words I heard yesterday. Forgot that yet another doctor had broken my heart. I woke up from a blissfully dreamless sleep starting to think about what was on today’s agenda until I remembered that my son’s cancer had returned. I think my swollen eyes gave it away. I can barely open them. If I hadn’t cried so much yesterday maybe I would have had three full seconds of forgetfulness. One extra second to be in denial about what is about to come our way for a third time.

The study that Ben has been on for the past 10 months in Kansas City came to an abrupt end yesterday. As many of you know, Ben and I were in the land of BBQ for his three month scans. He had technically shown no evidence of disease since having an affected rib removed in 2010, so despite my usual scanxiety, we were all feeling pretty good about where Ben was medically. I was getting used to the thought that my Ben was cured. Silly girl. Neuroblastoma doesn’t get along with that word. Cured isn’t in it’s vocabulary. It sure showed me.

So, when Dr. Neville came in yesterday to give Ben an exam, she was pretty quiet. I was talking to Sara, our nurse practitioner, about paper of all things. I have a giant addiction to paper. It makes me feel good. I buy it and think about all the pretty things I can make with it but then never do. And, in Kansas City, there is a wonderful store called “Paper Source” that has amazing paper. It’s not really a scrapbook store, per se, it’s a stuff store. And it makes me happy. Ben and I had taken a cab from the hospital to the store the day before just so I could browse. While I was there, I bought two books. One that is like a journal for Madeline… all the things that I “think” I’ve learned during my lifetime and the lessons I want to pass on to her. The other book was a daily journal with 365 questions to ask my children. This book has space enough for three years of their answers. I thought it was the coolest thing ever. The first question was “What seems dangerous to you and why?” Ben’s answer revolved around people who smoke and how that might be not only affecting them, but him too. Madeline’s answer was sledding down a steep hill and getting hurt.

Sara was getting teary as I was sharing these books with her. She told me I was a really good mom and then made a hasty retreat because Dr. Neville was finished with her exam on Ben. Ben had his earphones on and was watching something on YouTube as Dr. Neville sat on one of those rolling stools and moved in very close to me. I was still holding the 365 days of questions book. She presented me with a paper that showed Ben’s blood counts as being very strong. Good news first, right? Then she said, “Unfortunately, his scans weren’t what we hoped.” My grip on the book tightened as she flipped to a second page that showed his small, sweet frame in scan mode. Right below his precious collarbone there was a spot circled with black ballpoint pen. A small spot. A spot she told me was cancer. I have no idea what I physically looked like but every cell on the inside tightened. I felt my entire body start to buzz as she kept pointing at that damn spot and explaining that we were now in chronic disease mode. It’s going to keep coming back unless a cure is found. Or a miracle occurs. Or a meteor comes down to earth and smashes us all to bits. Honestly, right now, I’d be fine with any of those scenarios.

Ben continued to watch YouTube as my body slumped. Dr. Neville held me as the uncontrollable sobs took over. I think my first words were “I can’t. I can’t. I can’t tell him again.” She said that she would do it, but it was too late. Ben had taken off his headphones to ask what was wrong. Dr. Neville explained that mommy was sad because she loved her son so much and we had just gotten some news that was tough to take. I continued to sob as she explained that the cancer had come back. He didn’t cry at first. His first action was to console me. He said right away that he felt okay. That he’d fought it before and would fight it again. And that’s when I started crying harder.

The surgeries. The chemo. The radiation. Again? AGAIN? HE’S BEEN THROUGH ENOUGH! And here he is, willing to man up and do it again. Because that’s what it’s going to take. He accepted it. Just like that. Dr. Neville said some other stuff that I didn’t really hear. Basically, there’s no plan right now but we do have options. We might have to travel. We might not. I’ll go to the ends of the earth to take care of my son. Unless that meteor wants to come now and put us all out of our misery.

I called a few people and texted some others just to let them know that it hadn’t gone as hoped. Ben wasn’t NED. And then I called my girlfriend, Dawna, to come pick us up. Actually, I didn’t say anything. I was just crying on the phone. And she said, “I’ll be right there.” I walked Ben out to the front. Actually, I fell to my knees in the elevator first. I’ve passed out before but I was able to stop myself before completely blacking out. I willed myself to pull it together. To shut the hell up. To MAN UP and deal with it. I have no choice. Cancer is holding us captive through its attempt to destroy my son.

For the rest of the day, I cried. I figured that the entire day was a “freebie” to be an absolute mess. Somehow we got through security at the airport. My mind was in a thick fog and I continued to cry on the entire flight home as Ben slept peacefully on my lap. The man beside me read his bible the entire flight but never once reached out to console me. Maybe he was secretly praying for my suffering to subside. I don’t know. But I’ve learned along the way that there are few people who actually do anything in situations like these. They say they’re with you and that they’re praying but what it comes down to is that we’re alone. We get to be that train wreck you can’t look away from. And people thank God that they aren’t us. It’s our own hellish reality show. If you’re with us, tell me. I need to know. I don’t want your empty words. I need to know who my peeps are. Who I can depend on. Who I can turn to. If you’re not, that’s fine too. You simply cannot break my heart anymore than it broke yesterday.

I don’t know what else to say other than we’re back at it. And Ben is ready to fight so I’m getting out my battle gear, too. It’s a little dusty and I might be missing a piece or two, but I’m sure in the next few weeks I’ll find the missing pieces of my armor and help my son to kick some cancer ass.

Meanwhile, I’ll keep asking my children the 365 days of questions and hoping that we get to finish those three years of answers. But you have to know that I’m scared to pieces that he won’t get to.

And that’s a reality I just cannot accept.

 

35 thoughts on “Relapse”

  1. It comes across like I’m feeling sorry for myself. I’m sure I am. But I’m putting it out there that I NEED SUPPORT. I’m NOT near my family. Most of my friends are in Ohio. I’m divorced and fairly alone here in Colorado. I’m going to need people to rally around me. I need all the strength I can to get Ben and Madeline through this. I think this kind of thing scares people off. They don’t know what to do or say because they’re afraid. Or think that they can’t help. Or something.

    1. You are a member of a club that nobody wants to join, but there you are. However, you are also a member of the club that we are all grateful to be members of- Motherhood. Your pain is felt by any mother that reads your story. Your fear is ours. You are not alone. Again, I don’t know you, but will do whatever I can to help. It takes an immensely strong person to admit to weakness. You ARE stronger than you think, and when you aren’t, there will be others who will rally to hold you up, even when you can’t hold it together.

  2. Sarah. The title of your blog says it all! You ARE stronger than you look. This absolutely sucks but I know you and you can WILL do this and anything else you’re “asked” to do for your children. When I saw the news yesterday I cried. I just want to wrap my arms around you and hold you hopefully you felt it. I AM WITH you even though we’re states away. I’d love to talk (if ud like) but I don’t want to butt in. I love you and your family and were praying HARD! The asteroid sounds good to me too some days. (You’re too funny even despite it all).

  3. Sarah. Can I share with our Knk moms. I’m sure most are plugged into FB but don’t know that all are and I just want everyone to be praying and reaching out. I have an idea…move back to Ohio and in with the leverings. We have a finished basement and nch is not far. You’d be surrounded by friends. Truly. It’s an option. Think about it!!!

  4. Sarah. Can I share with our Knk moms. I’m sure most are plugged into FB but don’t know that all are and I just want everyone to be praying and reaching out. I have an idea…move back to Ohio and in with the leverings. We have a finished basement and nch is not far. You’d be surrounded by friends. Truly. It’s an option. Think about it!!!

  5. Sarah you are the strongest woman I know. One that has gone through more than any one person should have to. Let yourself feel sorry, be mad, and cry. We are all here holding you up and sending prayers. Can you share your address so we can start sending cards etc to you and the kids? We can start a chain reaction and kick caner’s ass once and for all! XO

  6. Sarah you are the strongest woman I know. One that has gone through more than any one person should have to. Let yourself feel sorry, be mad, and cry. We are all here holding you up and sending prayers. Can you share your address so we can start sending cards etc to you and the kids? We can start a chain reaction and kick caner’s ass once and for all! XO

  7. Hi Sarah – I am not sure if you know who I am, but you may know my sister Michelle. I graduated WMHS in 1992. This post is so honest and inspiring. I wanted you to know that I am standing with you and Ben.

  8. I’m down the road in Colorado Springs. We fought the NB beast few times ourselves. Our ending is not a happy one but I just wanted to tell you that you have a fellow NB mom pulling for you and Ben nearby who understands a little of what you are going through.

  9. I’m a friend of Natalie Rooney’s and, as such, I followed your story when you were in Ohio. I would give anything right now to teleport myself to Colorado and give you a big hug (I’m rather large, so it would be a big, soft hug).

  10. Sarah,
    My heart hurts so much for all of you right now. Sending you lots of love and prayers. If you ever need anything, please don’t hesitate to ask. I love you guys. Hug Ben and Madeline for me, and I’m sending an extra big hug for you.

  11. We are here for you, your friends, ready to “do battle” with you. Much love and many prayers to you, Ben and Madeline.

  12. Oh Sarah – There are no words. I hope you feel the love and support of all of us KNK moms – I love you, Ben and Maddy soooo much! Will keep following your story, and if life brings you closer to Columbus, maybe a real, in the flesh visit is in the future! In the meantime, try to feel my arms around you and your beautiful kids, even though we are miles apart.

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