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'When a sick baby with partial facial paralysis smiles, it’s golden. Especially if it’s my baby'

Actor Rob Delaney has written a powerful essay about the death of his two-year-old son.

US ACTOR ROB Delaney has shared a powerful essay about his son’s death from a brain tumour. 

His two-year-old son Henry died earlier this year after he was diagnosed with the cancer before his first birthday. The toddler had undergone surgery to remove the tumuor but the cancer returned and he died in January

In the post published today on Medium, Delaney concentrates on the months surrounding his child’s initial diagnosis and how he, his wife and his two other boys helped Henry deal with his treatment. 

PastedImage-80844 Source: Twitter/robdelaney

The Catastrophe star explains that doctors were at first clueless about why Henry kept vomiting and losing weight as a result. 

“His vomit became the most precious substance in the world to me and I would often start crying whenever he threw up,” Delaney writes.

I would try not to cry in front of his older brothers and fail and they’d ask why, and I would say it was because I was scared.The gastroenterologist prescribed a drug that’s supposed to make you not puke. He puked anyway. By this point we knew we were going to get some kind of bad news, we just prayed it would be coeliac disease or a twist in his gut that could be surgically fixed or something.

Delaney goes on to write about how Henry was eventually diagnosed with a particularly aggressive tumour, called an ependymoma, that was wrapped around several important nerves in his face. 

“A real cunt of a tumour, ” as Delaney describes it.

He continues:

Henry’s was on his posterior fossa, wrapped snugly around several important cranial nerves. To get them out, his surgeon, Dr. Mallick had to damage these cranial nerves. Thus, the Bell’s palsy and the lazy left eye. The cranial nerve that serves the left ear was severed, so he’s deaf in that ear now.

Delaney goes on to say that his son needed a tracheotomy tube to prevent saliva from entering his longs and that this also stopped him speaking.

“My wife recently walked in on me crying and listening to recordings of him babbling, from before his diagnosis and surgery,” he says.

Delaney says in the essay that most of the writing was completed after his son’s surgery but before the cancer returned. It was destined to be part of a book for parents in similar circumstances but that these plans were shelved when his son died. 

“The reason I’m putting this out there now is that the intended audience for this book was to be my fellow parents of very sick children,” he writes.

They were always so tired and sad, like ghosts, walking the halls of the hospitals, and I wanted them to know someone understood and cared. I’d still like them to know that, so here these few pages are, for them. Or for you.

“But I can’t write that book anymore because our family’s story has a different ending than I’d hoped for. Maybe I’ll write a different book in the future, but now my responsibility is to my family and myself as we grieve our beautiful Henry.”

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About the author:

Rónán Duffy

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