It was late at night when he was wheeled onto the unit – a boy of eleven – with a full head of hair (a rarity on this particular floor.) It was 2004 and I was walking an infant Madeline around the unit, one of our favorite nighttime activities. Ben was in his room, sleeping off his painkiller-induced state. If I remember correctly, I’m pretty sure my three-year-old Ben was in a good place in his therapy, responding very well to treatment, so we were actually breathing a bit normally. But I’ll never forget that boy sitting in his wheelchair, steered by a staff member from the emergency room, with his family (clearly in shock) following behind.
Two nurses were whispering to each other before they caught sight of me standing there. I heard them say “relapse” and hug each other. It was late at night, after all, they were allowed to show their non-stoic side. My brow furrowed as I bounced Madeline against my shoulder – this kid was a night owl like me – but it gave me reason to stall at the nurses station. I admit, I’m a Nosy Nelly at times, but it’s only because I care. I don’t want the information simply to be a know-it-all. I sincerely believe that I have an overabundance of care and compassion flowing through my veins. I truly want to help. And I would find out eventually, anyway. We were a floor of know-it-alls when it came right down to it. We lived together. We rarely left the halls that housed 28 rooms of sick and dying children. We kinda knew everything about our neighbors.
But the nurse was forthcoming despite it not being her place to share: “Relapse. Neuroblastoma.” My shock forced me to take another look at this family. I saw the back of the boy’s head… so full of beautiful hair… as his father slowly closed the door, barring me from their private pain.
Frick. It was every parent of a Neuroblastoma child’s nightmare. Historically speaking, Neuroblastoma is a pretty freaking horrible disease. However, the “experts” say that if your child makes it through induction therapy AND doesn’t relapse, then there will be a point that the child will most likely live disease-free – and have a fairly normal life. This was the option I wisely chose for my son, regardless of knowing that his initial diagnosis included the phrase “high risk for relapse.” Yeah, that wasn’t going to happen to my kid. I wasn’t going to look like those parents following behind their son, knowing that a relapse of Neuroblastoma – at least 10 years ago – pretty much guaranteed that your child would die.
This boy, the one who came in late at night in 2004, did die shortly thereafter. As did Sophia. Eden. Kathryn. Stevie. Nick. Christy. Jack. Mason. Dominique. And our precious Justin. This list of names is just the tip of the iceberg of children that this nasty beast has taken from us. Children we’ve known. Families we’ve loved. Forever changed by a freaking horrible cancer. I’m not saying there’s a “good cancer,” but Neuroblastoma is particularly evil. Where giant strides have been made in leukemias and other cancers, Neuroblastoma remains one of the trickier cancers to treat – and nearly impossible to beat.
We had four years of no fighting. I honestly thought that it had read my report, the one where I circled “NO RELAPSE and LIVE HAPPILY EVER AFTER.” That’s the option I chose. I was banking on it. Then, in 2009, you know what happened. Relapse. Ben’s New York team actually used the term “curable” when referring to my sweet Ben. I ate it up. Lived on it. Until 2013. When a second relapse had the doctor saying “Chronic Disease.” Quite a departure from “curable.”
What that means is that Ben will always be fighting this in some way, shape or form. Until something kills him. Pneumonia. Heart Failure. Some other Organ Failure. A Secondary Cancer. Or, simply, the Original Beast itself: Neuroblastoma. And while my head understands it, I just can’t get my heart to accept it. I’m not being fatalistic. I’m being realistic. The chances of Ben’s long term survival decreases with each relapse. He was given a 20-30% chance of survival when he was initially diagnosed. So, if that goes down each time he relapses, the odds of his survival are pretty darn low at this point.
And given the fact that we lost our sweet friend just days ago makes me question every single ache and pain Ben has. I’m terrified. I don’t want to wake up to rediscover that my son is no longer there. I don’t want to gingerly touch his belongings wondering if he has plenty of things to play with in heaven. I don’t want to ache whenever I see a Lego or watch a funny YouTube video, remembering that my Ben loved these things. I don’t want to be a typical Neuroblastoma, Stage IV, high risk for relapse, unfavorable tumor kind of mom. I DON’T WANT THIS FOR MY SON! I don’t want this for any of us. But Neuroblastoma doesn’t care.
So, a few nights ago, I took food to Lori’s house. I chatted with her daughter, Kayla, for a while. She had been cleaning while her mom was out visiting Justin’s gravesite. Kayla was just trying to keep busy to avoid dealing with the pain of losing her brother. But the evidence of Justin was everywhere. Legos. Pictures he had created. Pictures of him. Paraphernalia from the various charities for which he was a spokesperson. Flowers from his service. He was everywhere. I was there to offer support, not be a crybaby nuisance. So, after dropping off the food and hugging the hooey out of Kayla, I left. Unfortunately, when I got out to my car, it wouldn’t start. It had started to snow. Heavily. And my dogs were in the car. So, I called AAA and was told I’d have a 90 minute wait. I have small, yippy dogs. They are not made for Colorado weather. So, I called my ex-husband to see if he’d be willing to help me get them back to my apartment. Fortunately, he was.
Matt ended up driving me back and forth to Lori’s a couple of times while AAA tried in vain to start my inherited 1999 Mercedes E320. I tried to stay on the “down low” because, well, I was trying to be helpful, not add more stress to Lori’s life by being stranded out in front of her house. After a couple of hours of a AAA service guy not being able to figure out what was wrong with “Mary Pat,” a tow truck was called. Now, my dad gave me “Mary Pat,” which was my mother’s beloved car, after my mom passed away. I adore this car but would be hard pressed to have anything serious go wrong with it, especially since Matt had recently lost his job. No job=No alimony=Totally screwed. When it rains, it pours, right? And we’ve been in Tsunami conditions for a long time now. So, hanging my head low like Charlie Brown getting rejected yet again, Matt drove me home. AAA would come get my car and I would learn of the damage the next day. On the way home, I asked how Matt was doing. He admitted that he was stressed out over losing Justin and losing his job as well as health insurance for him and the kids. Yeah. Super Sucky. Then, somehow, we segued into a topic that neither one of us wants to recognize: the potential loss of our son. We actually agreed on some things that we would want to do. And this was more of a relief than I realized. Not that I’m okay with discussing what I consider to be utter nonsense, but to be able to get painful topics out of the way before they have to be faced head-on, well, it brought me to tears. Pain-filled AND utter relief. I didn’t know that they could co-exist.
It was one of the hardest things I’ve ever had to talk about in my entire life. Matt offered to let me come home with him so I could hang out with the kids just to ease my pain. I declined because I was a crying mess and didn’t want to put the kids through any more stress. I went inside my apartment and hyperventilated for a while until the AAA tow truck guy called. I cringed as I spoke with him, waiting for him to tell me that I was totally screwed and that Mary Pat was officially deceased. Quite the opposite occurred, however. He said, “Sarah, you left your car in DRIVE and that’s why it wouldn’t start. Your car is absolutely fine. I won’t tell anybody what you did.”
I laughed. Hysterically. I think I scared the poor fella. I briefly explained to “Bob” what had happened and that my brain was completely full from the current stressful events in my life. We ended up having a 10 minute therapy session where he confessed that six months ago he had contemplated ending his life. I expressed gratitude that he hadn’t because if it weren’t for him, who on earth would have figured out Mary Pat’s issue? Well, not her issue, but her owner’s issue. We had a great conversation. He wished me luck with everything I’ve been dealing with and told me he’d leave the key under the mat.
Matt brought the kids with him when he came to pick me up. It ended up being okay. Mary Pat was fine. My kids were fine. I would eventually be okay despite having to continue fighting for my son’s life. Yeah, my son has cancer. My daughter is scared. I’m scared. Matt’s scared. We’re broke and unemployed. This life is very, very difficult. But I can wake up tomorrow and sneak a listen to Ben’s beating heart while he’s still sleeping. I can laugh at Madeline’s antics as she tries so hard to bring levity to our scary world. I can appreciate the gifts I have before me, right now, knowing that it can change in a moment’s notice.
It can for any of us. At any time.
Again, not being fatalistic, just being realistic. But still filled with hope that it will all be okay despite the scary diagnosis.
Just like Mary Pat.