Hand holding

Saturday night was the annual Miracle Party, which honors cancer kids nation wide. It was started here in Denver by a fellow “cancer mom” Stacy. Her daughter, Kennedy, battled cancer a few years ago and it was during that battle that Stacy decided to put together a party for families dealing with this cancer baloney and give them a night to cut loose. Ben was one of the first honorees, and each year we’re invited to get our groove on. It has morphed into an epic event.

The night is filled with music and dancing and games… all sorts of fun stuff for the families. This was the first year that I went solo since Ben and Madeline were with their dad. I debated on whether or not to go at all. People want to see Bean and Mad, not me. But, after procrastinating all day, I finally showered and got my butt in the car. I’m certainly glad I attended in retrospect, but it was really, really difficult without Ben and Madeline there.

I’ve grouped families into three categories: done with that mess and the kiddo survived, still battling (but emotionally done with that mess), or done with that mess with the unthinkable outcome. It doesn’t matter where you are in your cancer journey, I believe that it will always be exhausting. Yes, it makes us stronger and more appreciative and blah, blah, blah. But it wears a person out. And now that Ben has relapsed a second time, I kept seeing the “Oh, I’m so sorry you’re going through this again” face. Those with surviving children don’t want to think that it could happen again to their child. Those still in the trenches are right there with us. And those who have lost don’t want to remind you of what could still happen.

But we try to celebrate the night and forget about all that exhausting nonsense. And when the “Angel Tribute” plays we all come a little closer. It’s much like the montage they play every year at the Oscars of all the actors who have died, but these are children. And there’s always one that catches me off guard. When I’m watching the Oscars, it might play out like “Oh no! I didn’t know that person died! When did that happen?” But I don’t get all emotional and think about it for weeks on end.

This time when the tribute played, I happened to be sitting next to Justin’s mom, Lori. I know I’ve mentioned them before, but here’s a brief update: Justin and Ben both have neuroblastoma. Their diagnoses were exactly the same. Justin is two years younger than Ben but they were both diagnosed as toddlers. Justin is starting on his eighth year of treatment and we’re just finishing our ninth. The major difference is that Justin keeps relapsing. And relapsing. And relapsing. He’s had NB seven times. They’ve tried everything to keep it under control and now they are on their last treatment option. I can’t even begin to wrap my brain around that.

Anyway, I love Lori to pieces. We aren’t really social with each other but we always see one another – at the hospital, at functions, and in NYC for treatment when both kiddos were on studies. The crazy thing is that we live less than five miles apart but we saw each other more often in NYC than we did here in Aurora. Crazy. We have a lot in common. Too much, perhaps.

When the Angel tribute started, I scooted my chair closer to Lori and grabbed her hand. I was already tearing up. And as each sweet angel flashed up on the screen I tried to remember them as they were. There were a few I knew that Lori didn’t, but she knew almost all of them. And we made an estimate that out of the many who had died that probably over 50% of them had Neuroblastoma. It accounts for 15% of all pediatric cancers but has a very high mortality rate. And with each relapse it gets tougher to beat.

Logically, I know this. But emotionally, I flipped out. I held her hand tighter and I swear I could feel her knowing what’s coming. It wasn’t fear. It wasn’t acceptance. It was not defeat. It was pain. And as I rubbed the top of her hand trying to eradicate what was excruciatingly palpable, I felt helpless.

She said to me that she just wants to come to next year’s party with Justin in tow. And dear, sweet Lord, how I want that, too. I simply cannot stand this life sometimes. I don’t want to think about losing Justin. Or Ben. Or any of the children who have already left us. It makes no sense. And it hurts tremendously.

So, I held her hand for as long as she let me. I tried to let her know through my touch that I would always be available to hold her hand. My eyes, still teary, let her know that I understood the pain to some degree. I wish I had answers. I wish I could make it stop. But as I watched Justin run around as if he were a perfectly healthy 10-year-old, I realized that he’s making the most out of his “right now.”

I’ll hold that lesson in my heart forever.

Thanks for the party, Stacy. Thanks for the love, friends. Thanks for letting me hold your hand, Lori. Thanks for teaching me how it’s all done, Justin.

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10 Comments

  1. Holding her her hand, as you did, was the best thing you could have done. The fear and worry could quite easily overtake you, her, and the other parents who are dealing with watching and waiting. The HOPE is what…it seems to me, keeps you going.

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