His name was Eli. The little boy who lost his life here early Wednesday morning. We didn’t know him. We had never met him. But we were here. Here at the hospital where he died. In the same area where he had received treatment. Where he had cried out in pain. Where his parents held him through his suffering.

All I knew on Wednesday was that a child had died. As I mentioned in my prior post it was clear that the staff were struggling with something tragic. The air was heavy. People were moving as if they were existing in a surreal state. I didn’t ask any questions but I heard enough throughout the day to garner an idea of what had happened.

As Ben slept through his treatment I sobbed. Even though I didn’t know this child or his family, I felt so many intense emotions. I imagine it’s like how many of you feel for Ben. A lot of you don’t really know him. But you rejoice when he does well and your heart is heavy when he struggles. Personally, I’m grateful for that. I love that Ben has so many supporters. I adore all of you who are pulling for him, praying for him, rallying around him. It’s made the journey easier.  And I’m happy to say that our journey continues. We’re still going strong and Ben has an excellent prognosis.

But not Eli. His earthly life is over.

When Ben and I got back to the Ronald, we went downstairs to the playroom to meet up with Justin. Ben immediately took off to play video games with his buddy. Justin’s mom, Lori, was hanging out with two moms I hadn’t met before. She introduced me to Sara(h) and Chris and I just kind of listened in to what they were talking about. All three of them are in different stages of a new treatment protocol for their kiddos. They’ve all done the 3F8 protocol (been there, done that) and now they are on to yet another treatment plan. I can’t imagine the exhaustion they must be feeling. But worse yet, they all knew Eli and his family. They filled me in a little bit about what had happened.

Apparently, Eli’s therapy had intensified over the last few months and they had been in NYC quite often. I can’t remember where they’re originally from – I want to say some mid-western state. Anyway, there’s a younger sibling involved, so the mom left to go back home on Monday to care for the younger child. Dad stayed here in NYC with his son.

Eli was not expected to pass away.

So, when Sara(h) found out that Eli had passed away on Wednesday morning, she bolted over to the hospital to support Eli’s dad. He met her outside of the room and explained that Eli was still in there. She hugged the dad and then said that she was going in to hug Eli, too. She told us that this was the second time she’d had this experience. Two times that she’s held a kiddo who had passed away. I could not imagine how overwhelming this would be. How tragic. How beautiful. How painful. How monumental.

Sara(h) said that Eli’s dad was well taken care of. Someone had swooped in and was there for him for the aftermath of losing his son. He had a place to go other than back to the Ronald where all the painful reminders of losing his precious son would be staring him in the face. The average person might not realize this, but when you stay at the Ronald, your kiddo is inundated with “stuff”. You get a toy when you check in. Usually, each night, someone hosts a dinner at the house and often times there are “goodies” that come with that… more toys or balloon animals or treats of some sort. You almost always come away with more than you came with. It’s hazardous to that pesky 50 pound weight limit the airlines put on luggage.

But this time, when Eli’s dad goes to the airport, he’ll just have himself to get through security. He won’t have to be stopped and asked to open every single bottle of liquid medicine required to get your kiddo through cancer therapy. He won’t be lugging the 50 extra pounds of goodies that his kiddo picked up at the Ronald. He won’t have to keep that watchful eye out for his son while in the airport. He won’t have to do all the things he might have originally found to be a nuisance but is oh-so-longing to do now that his son is gone.

And his mom. She left here on Monday most likely NOT expecting that she would never see her son alive again. To not be with her son in his final moments. To not hold him as he drew his last breaths. To not cuddle him and sing to him and just simply be with him as she watched the life leave his body. I just cannot stand it. It makes no sense. This has to stop. I’m furious. Heartbroken. Crying. Exhausted.

But we’ll keep going. Despite the loss and the heartache and the pain and misery, we just keep going. Because there are silver linings. There are stories of survival. There are beautiful moments interspersed between the ridiculous. We find ways to cope with the tragedies and push the rest of the bullshit away.

Life is so short, friends. Unfortunately, we’re reminded of this simple fact all the time because cancer keeps death so close in this world of pediatric cancer. But every single one of us is in the same boat. Life is precious. And we need to make the most out of it. If you can’t stop wasting it and start living it, you’re only cheating yourself.

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  1. Tears are shed often as I read your blog. Oh Sarah, I’m so sorry you and your family are going through all this. No one should have to watch a child endure so much. I love reading your blog…I’m so grateful that we all have you, you put things into a clear perspective! Thank you for all you do. I hope that we live to see a cure for this horrid disease. God bless you dear lady! Hugs for both of you!


  2. Oh Sarah, I sobbed when I read your blog about Eli. Just had breakfast with my 28 year old Laura, diagnosed with neuroblastoma one week before her first birthday. Now an inner city middle school music teacher, traveling to Korea over spring break to visit her college roommate, and loving life. But never a day goes by without me soooo grateful for our/her outcome. The location of her tumor was on her spine, and we were told her parapalegia was to be permanent – yet she beat that also, and has always marched in marching bands, and volunteers with the blind school marching band. Sometimes I feel survivor’s guilt – ‘Why were we so lucky?’ – but most times I just pray for Ben and the others to have an outcome like Laura’s, and cry when I hear about Eli and the others who must walk a different path. Thanks for sharing. I hope that knowing how many others love and care about you and Ben helps ease the horror when the days are so hard.


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