‘We wanted his final months to be happy’
Actor Rob Delaney began writing about his son’s tumour battle to help other parents. Tragically, it wasn’t the ending he and his wife hoped for
I’m on the bus to go see my son Henry at the hospital. I have to take him in a taxi to another hospital for some specialist doctor appointments they don’t do at the hospital at which he lives. I don’t want to take him on the bus to the other hospital because I don’t want to have to jostle with other curious passengers when I have to turn on his suction machine to suck out the saliva and mucus that collects in his tracheotomy tube.
He would love to go on the bus, though. He’s two. Despite the physical disabilities he has from the surgery to remove his brain tumour, he’s very sharp mentally and gets as excited about a big red double-decker bus as any other little boy.
I’m so f------ tired. The front of my head feels like it’s stuffed with hot trash. My chest and throat feel constricted and I’m reminded that while my life is and will remain stressful for the foreseeable future, I could at least lose some weight to reduce my heart’s workload, so a cardiac event doesn’t take me out before I turn 50.
My biggest fear had always been that I wind up somehow being conscious for eternity. Like that I die, wind up in heaven or hell or wherever and just never shut off and have to endure being conscious and aware, and nothing is wonderful enough or horrible enough to engage me for that long, ie eternity.
That fear went away when my wife and I had kids. The fear went away because I realised I could now do eternity and be OK. I could just call to mind the image of one of my sons, or the smell of their heads, or the feel of one of their little feet in my hand and I’d be happy. Give me a Polaroid of one of them to hold on to and I could do two eternities.
I may wish Henry wasn’t in the hospital and it may make me sick that my kids haven’t lived under the same roof for over a year. But I’m always, always happy to enter the hospital every morning and see him. It’s exciting every day to walk into his room and see him and see him see me. The surgery to remove his tumour left him with Bell’s palsy on the left side of his face, so it’s slack and droops. His left eye is turned inward, too, due to nerve damage. But the right side of his face is incredibly expressive, and that side brightens right up when I walk into the room.
There’s no doubt about what kind of mood he’s in, ever. It’s particularly precious when he’s angry, because seeing the contrast between a toddler’s naked rage in one half of his face and an utterly placid chubby-chipmunk cheek and wandering eye in the other is shocking in a way that makes me and my wife laugh every time. And when he smiles, forget about it. A regular baby’s smile is wonderful enough. When a sick baby with partial facial paralysis smiles, it’s golden. Especially if it’s my baby.
Biggest fear: Rob Delaney and Henry, who started being sick at 11 months
A little over a year ago Henry vomited at his oldest brother’s fifth birthday party. No big deal; he was our third kid and we’d cleaned up enough puke not to be fazed. I’d been feeding him blueberries. Did I feed him too many? Had I done something wrong? He was 11 months old. Was I being a lazy parent and had I just let him keep eating them because it kept him quiet?
He was our third; I’m pretty sure I let him eat chorizo before he was nine months old. It’s not like your first kid where you bug out over every little thing that goes into their mouth. Want some chorizo? Go nuts, little man. Chorizo’s good, why wouldn’t you want some?
I’m glad I gave it to him, too, because he hasn’t eaten anything via his mouth for a year now. Now he’s fed through a tube in his stomach. Some s--- called Pediasure Peptide. One nurse I know hates it because it smells the same when kids vomit it up as it does fresh out of the bottle. And kids on chemo vomit a lot. So she feels like she’s feeding kids vomit.
After Henry vomited that first time, we cleaned it up and kept on partying. The next day he vomited a couple more times so my wife called a nurse who said to bring him into Accident and Emergency. She wanted to make sure he didn’t get dehydrated.
For some reason at the A&E they got the idea he might have a urinary tract infection. Since he couldn’t really keep fluids down very well, they asked me to feed him five mils of some electrolyte juice through a syringe every five minutes and hold a little cup next to his penis to catch any urine he might produce so they could see if it was a UTI. I couldn’t look at my phone or watch Finding Nemo on the A&E TV, lest I miss a drop of that precious pee. He finally made a little pee and I gave it to them and we left with some antibiotics.
He continued to vomit, but it tapered off a bit and it seemed like he was at least taking in more calories than he’d bring back up on to the floor from time to time. So we brought him to our local general practitioner. A doctor examined him and while we were there, Henry vomited all over the floor. I was glad. I wanted to point at the vomit on the floor and say, “See, that’s vomit all right. Now what are you going to do about it?” What he did was give us an appointment to see a gastroenterologist. That made sense, since up to that point in my life, vomit-related issues generally centred in the stomach.
The vomiting plateaued a bit and we decided to keep the plans we’d had to visit the United States for Easter. Henry turned one. Then the vomiting intensified. While visiting my mum in Massachusetts, we took Henry to hospital. For a $500 deposit, they did an ultrasound on his kidneys to see if they were infected. They didn’t seem to be. They put him on different antibiotics.
We returned to London and started
When a sick baby with partial facial paralysis smiles, it’s golden. Especially if it’s my baby
to get scared. Henry was losing weight. Every time he vomited I would freak out. I would feed him so gently, so slowly, and assume I’d done something wrong when he vomited.
Why, if I’d been able to feed Henry’s ravenous, feral older brothers, couldn’t I feed him? My baby was getting smaller. The total amount he weighed was less than the amount of weight I should lose. Henry didn’t have any weight to lose! His vomit became the most precious substance in the world to me and I would often start crying whenever he threw up. 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.
My friend Brian, whose kids are older than ours, recommended we go see their family paediatrician who’d helped them solve a medical mystery with their son a few years ago. It was worth a shot.
Like every other appointment, I took Henry to
Dr Anson myself. My wife is a magnificent mum and would have happily taken Henry but, for whatever reason, I’d taken him to the first appointment so we just kind of stuck with that and he became my little project. My wife stayed with our older boys, who were five and three and were, frankly, usually the more difficult job posting.
Dr Anson checked out Henry and was as alarmed to see the loose skin on his inner thighs. He asked some routine questions but then he asked one that stuck out from the others: “Is his vomiting effortless?” “Effortless.” “Yes, does he retch, or seem distressed when he vomits? Or does it just come up and out?”
“Hmm, huh, um, it is effortless, yeah. He’s not troubled at all.”
“OK, I think we should schedule an MRI. Of his head.”
“OK, why?”
“Just to make sure there’s nothing in there that shouldn’t be. Pressing on his emetic centre, making him vomit.” “What, like a tumour?”
He paused.
“I’m glad you said it.”
Henry just turned two. We didn’t dare assume he’d have a second birthday with the prognosis he received after they took out the tumour and confirmed what kind it was. An ependymoma they call it. Ependymomas kill most babies who get them. If I’d had one when I was Henry’s age in the Seventies, I would’ve almost certainly died. They still kill people today, but if they can remove the entire thing surgically, your chances improve.
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. All those things are awful, but they’re really nothing compared to the tracheotomy. The nerves that handle swallowing and gagging were damaged, so Henry can’t prevent saliva from getting into his lungs. You and I swallow about a litre and a half of saliva every day. Lose your swallow and you’d get pneumonia pretty quickly, and pneumonia kills people as dead as cancer does. Henry’s tracheotomy tube prevents him from speaking, so I haven’t heard him make a peep for over a year. My wife recently walked in on me crying and listening to recordings of him babbling, from before his diagnosis. I’d recorded his brothers doing Alan Partridge impressions and Henry was in the background, just talking to himself, in fluent baby. Oh my God, I want to hear him again. Now he has a foam-cuffed tracheotomy tube in his beautiful throat, rendering him mute.
The other day I had to hold him down on a hospital bed while a nurse and a doctor took out his tracheotomy tube, which had broken. It bled like hell, so I suctioned the blood out of the hole in his throat, while they got ready to put in the replacement tube. It was awful, and Henry was terrified, begging me to pick him up and take him away. But I didn’t. I held him down. The hole in his throat is about the same circumference as a bullet hole.
I’ve gotten to know his tracheotomy nurse rather well. She was a captain in the British Territorial Army and served in Iraq and Afghanistan. She also helped turn Great Ormond Street Hospital for Children into a triage unit for adults on the day of the bombings in London on July 7 2005, which killed 52 people. So even though I hate what she’s taught me to do, I’m grateful to have her around to talk me back to sanity afterwards.
I’m aware this ends somewhat abruptly. The above was part of a book proposal I put together before Henry’s tumour came back and we learned that he would die. My wife and his brothers and I just wanted to be with him around the clock and make sure his final months were happy. And they were.
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. 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 any more because our family’s story has a different ending than I’d hoped. 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.
Note: I wrote all of this except the last paragraph in April or May of 2017. I changed names as well, except for Henry’s.
Henry was terrified, begging me to pick him up and take him away. But I didn’t