The coast is clear

Whew. Ben’s scans were clear. I can breathe again. Well, until the end of next month when scans will be repeated.

I spent the last week peeking around corners, trying to be as quiet as possible, so we could sneak by cancer. It’s still around… it’s always around, but for now it’s sleeping. It’s like a volcano. It has erupted in the past and we were on super-double-secret lockdown while we rode the storm out. But with each passing day we sneak closer and closer to normalcy, knowing it can erupt at any time and spew its fiery lava into our lives. It’s like a bastardized game of red light-green light. Run like hell until it shuts us down. Covering us with its incendiary ash and freezing us in our tracks, daring us to move so it can catch us again.

Tag. You’re it.

But for now, we’ve found a good hiding place. And as each day passes we become more comfortable. Forgetting the promises and bargains we’ve tried to make with the beast as it leaves us to celebrate the frailty of life. Always understanding that becoming too comfortable will end up surprising us in a way that has the power to destroy us.

This is not a fair way to live.

I know this sounds a bit paranoid, but there are always a few people out there who don’t understand the process. “Ben is NED? Does that mean it’s over?” Unfortunately, the answer is no. It may have been the case for us once upon a time but when he relapsed the first time – despite it being four years post-treatment – we knew that we were up against a new type of beast. There are some children who have neuroblastoma once and finish treatment, never to hear from neuroblastoma again. But when a relapse comes, you find you’re fighting a whole new horror. And with each relapse it gets harder and harder to beat.

Last week before scans, I dropped Ben off at school. I always sit and wait at the curb, my idling car patiently waiting, just to make sure he makes it inside. Or, to rescue him if he decides to make a run for it. He never does the latter, but I want to be there just in case he does. On this particular day as I watched his oversized backpack dwarf his small frame, his arms devoid of its usual pendulous swing, I knew he was tired. I think he likes school okay, but he’s exhausted. Middle school is a whole new ballpark. Switching classes. More homework. New people. Some of them friendly, some of them not. And coupled with this new course of chemo, despite it being a fairly low dose, he’s wiped out. I’ve formed a bond with the school nurse, who is absolutely precious and a cancer survivor herself. She knows the drill. He seems to spend quite a lot of time with her, feeling nauseous, feeling tired, or snagging a soda from her stockpile. I know he’s in a safe place with her.

He did, however, get bullied by a few kids recently. One kid was calling him “tiny Ben.” Ben advocated for himself and told the kid he didn’t like to be called “tiny.” He is particularly sensitive about his size, so this is hurtful to him. I was proud that he asked the kid to stop and when he didn’t, he took it to the next step. I applaud his bravery. But then a couple of girls approached him and his best friend in the cafeteria and asked if they were going to the dance after school on Friday. The boys said they weren’t. Then the girls turned evil. They said that Ben and his friend were the ugliest boys in school and no one would go to the dance with them. When Ben told me this, I went looking for my Edward Scissorhands gloves. Tears immediately sprang to my eyes and I asked Ben how he felt about this. With downcast eyes, he reported that he didn’t care. I mentally called bullshit but I left him alone. I immediately contacted his counselor at school and reported what happened.  She, too, had a very emotional response and said she’d take care of it. Within two days she presented Ben with a handwritten note from both girls, apologizing for being meanies, and promising to amend their behavior. They got in big, fat trouble, both at school and at home. The Edward Scissorhands gloves are back in storage – for now. Ben went to the dance with a group of friends and had a good time, and even danced a bit. I would have loved to see that. 🙂

I so wish we could get a handwritten note from neuroblastoma, saying how sorry it is for torturing Ben and killing so many of his friends. Unfortunately, it doesn’t care. So I have to sit by and watch as it wears on my son – mentally and physically. I can’t tell on it. I can’t stop it. So I sneak around it, praying every day that it doesn’t come for our lunch money.

It’s hard to live in this shadow of fear. But with each clear day, we’ll creep towards normalcy, hoping the bully shrinks into the shadows. We certainly don’t want it to torture anyone else, but we sure would like it to move to a far away and desolate location. Like Detroit.

Scans will happen every other month for now. This study he’s on will take a year. Things are good right now – and we’ll embrace that – but this is far from over. We’re patiently waiting while begging and pleading for the coast to be permanently clear.

 

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15 Comments

  1. Tell Ben that I’ll be his date for the next dance. I don’t dance, as a “Friend” pointed out, as I was laying in the hospital bed, unable to even WALK….let alone DANCE. She said that “I just move my arms”. I will dance w/Ben though….I believe that he will give me the courage to do it!

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  2. I have a beautiful feisty little thing here that would love to show up and show off as Ben’s date for his next dance.
    She is 18, 4 foot plus a little, 90 pounds minus a little…..but she acts 6 foot and bullet proof!
    She was also horribly bullied! But she came through it strong and determined to never stand quiet, when she sees someone else feel that same pain!
    Guarantee heads will turn (in a good way) when Ben and MaKaya walk into the next dance! The only thing us Mommas will have to worry about is remembering to order their matching corsage and boutonnière.
    NEGU!

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  3. First, I love you. Second, I love ben like he’s my own kid and hate that he has to go through all of the crap that goes w/this cancer. Like the cancer itself isn’t bad enough…. Third, I am so pissed at those girls…and glad they were in big fat trouble at school, and especially at home. But I hope that they learned the horror in what they did and didn’t just write the apology because they were told that they had to. I hope they learned and will never do it again. In the meantime, I’m w/my friend Mary who said we should shave their heads and then kick their asses….I think we should shave their heads, and then have Ben take them to Children’s Hosp and show them what life is really like, and how someone who is BRAVE lives, not someone who is cowardly picking on other kids lives…UGH….I love ben so much that i was both REALLY pissed off and in tears when I heard of the bullying…ok…off of the soapbox for now….

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  4. May I add. It’s not just the littles that can be capable of bullying. Our 7 year old Grand-daughter was horribly attacked, mauled and nearly killed by a dog 2 months ago. After 4 hours of Surgery with 2 Surgeons tag teaming it to save her life she is now back into school. She has terrible, disfiguring scars. She has multiple Cosmetic Plastic surgeries in her future. We have had our share of visits to the school because of kids calling her ugly! Edward Scissor Hands would look mild next to who we turned into. But we found going to the store with her could also become a traumatic event for her. Adults staring could make her shrink and hide behind our backs. We told her if she found someone staring, young or old, she should say “Yes, I have a bad owie. I was attacked by a dog. Do you have any questions?” Take the higher road Brylee. But I found myself staring them down with a “I dare you” death stare of my own. When our Bella was going through Treatment and had to wear her mask to the store because of counts, I began to wear one too! She thought it was funny Nana had a mask on. She had no clue I was trying to make a Statement to the rude adults.
    I always read updates on Ben and follow your blogs. Usually I silently support and say Prayers from our corner. But when it comes to the “bully” aspect that makes my blood boil and I cant stay quiet!! Gray tape, a hot glue gun, nor a surgically placed zipper can keep my mouth shut. Our kids are fighting hard enough! You want to add to it? Come through me!
    Seething here…..
    Ben, you are not that far West of us, that our Calvary can’t show up and surround you!!

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  5. We’ve been lucky – Laura’s neuroblastoma never relapsed. But how well I remember the tension leading up to each recheck. The worry NEVER goes away (she’s 30 now!), but for us the worry finally got in the box with all the other, normal worries that go along with being a parent. Worries about car accidents, and finding happiness, and other illnesses, and relapses – all in the same box of things parents worry about. I hope the same for you one day. I love and miss you guys!

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  6. Sarah, My momma’s heart hurts with yours. Kids are so mean. My Luke is small for his age, and very sensitive about it, too. I’m glad Ben stood up for himself. And, what a blessing that the school counselor dealt with the mean girls. Grrr. Thanks for sharing your heart. Hugs to you and Ben both!

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  7. Chris O’Neill….I’m very sorry for what your granddaughter is going through. People staring at you because you look different, or even walk different is a terrible thing to experience. I just said a prayer that she has the strength to overcome the bullies and to walk tall and proud!

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