“Cancer Rhymes With Answer”

I’m learning the greatest gift is his childhood, his innocence. His view of life. His understanding that evil only lives in TV shows (and the White house…sorry dad). And of course there are superheroes to save the day. Good always win. Evil just makes a good story line. Without it there is no exciting battles. He likes the battles.

We told Jacob he has cancer.

It has been recommended to us by our doctors and the incredible child life specialist team. Their reasoning: Jacob will be surrounded by other children at Sloan with cancer and he will hear this word from every corner of the room. Let’s be honest, he already has. When he loses his hair, people will point and whisper “cancer.” He will know. Of course he will know. Jacob soaks in all. Jacob is aware. He is the one who has the three tubes sticking out of him. He is the one who walks into sterile rooms with his parents behind double doors and lays down in front of machines We must control the narrative. So we told him.

“You know that bump that they found in your belly like daddy had in chest, they found out what its called. Do you want to know what it is called?”

Jacob: (silent nod)

US: “Cancer”

Jacob: “Cancer rhymes with answer.”

I was taken aback from his response. This is not a Jacob thing. On occasion he will make up silly songs using rhymes, but it wasn’t a song, it was just a statement. “Cancer rhymes with answer.”

It hung there for a bit. I mean cancer is the PROBLEM, not the answer.

I live in world of problems/ questions.

  • Why did my husband get cancer?
  • Why did my child get cancer?
  • Why when I accepted the cancer and just prayed that it hadn’t traveled north, did he light up like a Christmas tree on his scan, including the bones in his skull?
  • Why is this happening to my family?

I could go on and on…I have a list going. I’m on page 6. Pages of questions, but no answers. I’m looking for answers.

Jacob just said “cancer rhymes with answer.” Looking for meaning here. Looking to understand really anything right now. And as we know, Jacob only speaks truth.

Maybe its a simple as a child being a child. The clever nonsense that comes out of their mouths. Like just now when he explained to me the difference between a “statue” and “sculpture.” “Statues hold things. Statues are stronger. It’s not the sculpture of liberty mom. Its the statue of liberty.”

Or maybe its more.

Maybe its more concrete. Cancer was the answer to his belly pain. That is the answer. That is what caused it. We started this journey due to his constipation. Yep. You heard that. Constipation is what brought us in.

Or maybe there is an answer I don’t yet know. Maybe there is meaning that I can’t see yet.

I have walked this path before. By NO MEANS is it similar. Steve’s cancer feels like nothing now, a blip, a rained out game. But walking away from almost losing Steve this last October, we changed our lives and I found meaning in the pain. We decided that life was short and we wanted to live “our best life.” We became one with the sea. I started a business to make sure no one felt the way I felt; unprepared and unqualified for the day to day realities of independent living. I founded Mind the Gap. It brought answers to problems in education that needed to be solved. I was going to help millions! I saw such good.

I hope that to be true now. However, it just seems unfathomable. I see my son suffering. I see how unfair the world is. How unfair it is to me, Steve, Benno and Jacob. To my extended family. And to all of you who need to bear witness.

But its true answer does rhyme with cancer. I can’t deny that.

Nightwing

My five-year-old Jacob can name every single superhero with great detail. He can even tell you if they are from Marvel or DC. He can tell you if they are human or superhuman. He can name what planet they came from and who is their greatest enemy. He can name every Star Wars character and tell in great detail their journeys. I know that may seem not very impressive, don’t all little boys love superheroes and Star Wars? But that just isn’t true. Our eldest, Benno (8), never mentions such things and we aren’t the superhero type of family: We spend our time talking about boats or 3-D printers. Superhero chatter doesn’t make it to our dining room table AND we don’t really watch any of the movies.

So how does Jacob know all the intricate details? When I ask he lists a friend as the source or a game played on the roof at school, and yes, YouTube. He just picked it up along the way, as he does with everything in life: Picking things up, soaking in all that the world has to offer and especially factoids that have capes!

That’s my Jacob. He knows everything. And unlike his brother who THINKS he knows everything, Jacob speaks only truth. He is a natural observer who soaks in all that life can offer.

Sadly, life doesn’t always offer good. Life includes unexpected sorrow and heartbreaking hurt and, suddenly (and often lately) in my family’s case, cancer. Just like everything else Jacob does he soaked cancer. He soaked it in all over his little body.

He is officially diagnosed with Neuroblastoma, stage 4. And now my little Jacob knows another adult vocabulary word: Cancer. He hears it all day long as people in white coats buzz around him poking, prodding, and taking vitals. 

But more on that later…unfortunately, a LOT more on that later.

Back to Nightwing.

I recently learned that Jacob’s favorite superhero of ALL the options (geez there are a lot of them?! Have they created more in recent years?) is Nightwing. I found that odd. I had never even heard of Nightwing. I’ve heard of Wolverine and even an AntMan, but Nightwing was a new one. How could he beat Spiderman? Or what about Thor? Who is Nightwing?

I have been Googling (God I do too much of that recently), mostly words that have too many vowels and sound like aliens from Jacob’s superhero shows, rather they’re medical terms that hold my child’s life in their syllables. But, when I googled Nightwing I learned that he is Robin as in Batman’s Robin, but when he is Nightwing he is working on his own or next to Batman (opposed to being Batman’s sidekick). ‘Ahhh’, I thought. ‘Yes. This makes sense’. Of course, Jacob’s favorite superhero is Nightwing.

Benno is Batman. It’s not that Benno has claimed to be Batman. He has zero interest in it. Jacob doesn’t HAVE to be Robin by any means. He chooses to be Robin, because that is the kind of kid he is. Thoughtful. Adoring of those closest to him and there to help. BUT he isn’t just  a sidekick either. He’s Nightwing. So, I’m naming this blog Nightwing. And that is my intro to this journey of heartache and (I hope) strength. 

I Googled “how to write a blog” and you are supposed to “introduce yourself or your topic.” I’ve never been a “blogger” before. I actually think blogging is ridiculous. Who wants to read about the intricacies of someone else’s life (at least I didn’t). To be crude, who the fuck cares, but clearly, it’s a thing and now that so many of you have expressed such interest (sincerely, thank you), here I am, being a hypocrite and now…I’m blogging.

About me (rule #1 of blogging): I’m a worker. I don’t stop. I work day and night. I have spent my life dedicated to children, learning how to serve them best. This is going to sound cheesy, but anyone who knows me knows I mean it, I really want to help make the world a better place through education. Wanna chat about curriculum and schools and the state of education today, grab a cup of coffee (I’d rather grab a pastry or fro yo), I’m your girl. I can’t sit still and watch the world burn. I taught for 12 years, helped design and build a school that would create best practices to share with the world. I worked from 6am-8pm for years and only left my last job to start a business when I felt I could help more people.

I mean bloggers (🙋) were a joke to me. Get a real job people! Who has time for reading all about your “feelings”?!  But,now all I do is hunt for first person experiences that can help me comprehend the personal and navigate the clinical – I desperately need the voices of the bloggers who have traveled the road I’m about to walk. This is my most difficult and scary job to date. This one is 24/7. This one has no “end of day,” no “end of school year” and no other option but to plow across the finish line and win.

I look for people’s stories so I can learn. Thank you for those who have shared so that mom’s like me have some direction to point what feels like a sinking ship. And, unlike all the times I’ve read product reviews and been grateful for the time someone put into sharing their lessons, but would never be bothered to give back my own, in this moment of hell I’m going to find solace giving to that mom who inevitably is trailing me by a few days, months or years. I hope someone leans on my words the same I have others. 

But, to my audience of one (assuming at least my mom is reading this)…I have NO IDEA what I’m doing. I’m so freaking scared. It has been less than a week since we just thought Jacob had a stomach ache and he’s already had two surgeries, a blood transfusion, and from what I gather, we haven’t even crossed the ‘start’ line yet.. We just have a diagnosis. A sheet of paper and statistics in medical journals. We have a long road to physical recovery and an even longer to emotional healing. The real game-plan does not fit on one 8×11 sheet of paper. It has no map with every curve delineated. I can’t predict it. I can only know this, we will get there. My job is to figure out how to do that for Jacob.

I’m his mother. I’m supposed to protect him.

I’m going to have to learn from the best, Jacob, he’s been playing this roll his whole life. I need to not just be Jacob’s Robin, but be stronger than that, I need to be his Nightwing.

Maybe I need a cape. My mom thinks I need my roots done. I think I’ll do both.

Thank you for joining me, us, him, on this journey.