Darran
Roger Freestone
What a story for a Sunday morning. 
âThe heaviest pain in the worldâ â Rob Delaney on his sonâs death
At the height of his success, the Catastrophe star learnt that his toddler, Henry, was dying of a brain tumour. He tells his familyâs devastating story
The first year of my son Henryâs life was a tornado. His brothers, Eugene and Oscar, were four and two, so we had three boys under five. I say âweâ, but it was mostly my wife, Leah, by a long shot. Catastrophe, the TV series I wrote and starred in alongside Sharon Horgan, got picked up for a second series before the first one even aired, and it didnât occur to me to take a break before beginning work on the second one. We just dived right in, and in my work fever I let my family simmer unattended on a back burner.
Of course, there were moments of beauty and togetherness, and Eugene and Oscar were loving and proud brothers to Henry, who smiled and babbled at them and was just generally a delightful and smooth little nugget we all loved to kiss and squeeze and make laugh. A house with three boys can seem like a ramshackle zoo on the edge of town: loud, dangerous and terrifying to the observer. Henry sensed that being the smallest animal in the zoo, heâd have to employ alternative tactics to get noticed. And he did. He was impossibly sweet and calm and lovely, so you were just drawn to him. It was a smart approach, and it worked.
I think about my son Henry as a little baby, and I think about him as a toddler. I think about the expressions he used to make, and his hands and feet and legs. Itâs wonderful and it hurts. I think about Henryâs hair every single day. Despite my own full-body coat of fur, Leah and I exclusively produce bald babies. And just as he started to grow hair, they found the tumour in his head.
Henry got sick when he was 11 months old. When he vomited at Eugeneâs fifth birthday party, we didnât think anything of it; he was our third kid and weâd cleaned up enough gallons of puke not to be fazed. Iâd been feeding him blueberries, so there were maybe 15 or 20 recognisable blueberries in there. A few too many blueberries â whatâs the big deal? Party on.
When Henry vomited two more times the next day, we started worrying and I took him into A&E. The doctor got the idea Henry might have a urinary tract infection. We left with some antibiotics, on the understanding that theyâd call us and tell us if a UTI was the culprit. It wasnât.
Over the next couple of weeks Henry kept vomiting so we brought him to our local GP, where he promptly vomited on the floor. He gave us an appointment to see a gastroenterologist. That doctor gave Henry an antiemetic and told us to monitor him for a while and come back if things got worse.
Henryâs vomiting intensified. My baby was getting smaller, and I would start crying whenever he threw up. I would try not to cry in front of his older brothers and fail, and theyâd ask why, and I would say it was because I was scared. 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.
On April 26, 2016, Sharon and I won the Bafta for comedy writing and the very day after that, a doctor told us Henry might have a brain tumour, and scheduled the MRI that would confirm it. That conversation, understandably, is seared in my mind. And yet so many of the days, months and years that followed are obscured by a fog. Grief drove a bus through the part of my brain where memories are stored. After the MRI, Dr Anson confirmed that Henry had a large tumour in the back of his head, near his brain stem. He delivered the news calmly, and ended by saying a paediatric brain surgeon would come to see us within a few hours. We sank inside ourselves. The heaviest pain in the world. I felt like I had suddenly quadrupled in weight, and an oily, black whirlpool began to swirl where my heart had been.
Dr Anson said we could go and see Henry, so we left his office and headed down a flight or two of stairs. Along a corridor, Leah found an unoccupied breastfeeding room and went inside and started screaming. I held her.
When we were able, we left that room and walked out of the building and across the street to the one Henry was in. Henry was just waking up, and Leah tenderly hugged and kissed him. I wrapped myself around Leah and Henry. He looked at us, tired and confused. He had turned one less than two weeks before. Sitting with him in those hours after his MRI, after we found out about the tumour, we werenât thinking about the next year of his life; we could only think about the next few days.
Eventually a brain surgeon from Great Ormond Street Hospital came to the private hospital and introduced himself to us. He was a nice, calm, quiet guy named Mr Elsawi. He said we were going to get to know each other well, which was both comforting and upsetting. He told us that Henry had a tumour the size of an apple near his brain stem and that he would open Henryâs head in a few days and try to remove the tumour. We digested that news and a little while later, Henry and Leah and I were taken to Great Ormond Street Hospital.
Upon our arrival, Henry was admitted and given a bed in their brain and neurology ward. We were shown to a shower room where all three of us could fit in, and Leah showered with Henry, holding him. I took their picture and in it, beautiful naked Leah is cradling beautiful naked Henry under the warm water and the expression on his face is one of pain and fatigue you would normally associate with an old man.
In those first few hours at the hospital, we met doctors and nurses whoâd seen Henryâs type of tumour before. They were calm, purposeful. We were disorientated and in shock. We held him and loved him and got ready for the big surgery a few days later.
We spent the four days leading up to Henryâs surgery in terrified anticipation. The surgery would take all day, so Leah and I got a hotel room close to the hospital. At the hotel we were so crazy and scared and holding each other so tight, we actually wound up having sex, twice, a few hours apart.
I realise it sounds insane to say that we had sex twice while our one-year-old had brain surgery across the street. I would normally omit that very personal fact, which might horrify some people, but I am sharing it primarily for the benefit of other parents who might have been through something similar and were terrified and crying and nearly hyperventilating with anxiety. I guess we were just so scared and wanted to be so close, and the horror of what was happening around the block didnât erase the fact that we loved each other, and sometimes that love manifests as sex, even in the absolute worst of times.
After 13 hours we were told the surgery was done and we could see our beautiful baby boy. We kissed him and told him we loved him. Elsawi said that he had removed all the tumour he could find. Henry had a vast number of tubes and wires attached to him and going in and out of orifices, and cannulas going into various veins. A few days after the surgery, we were allowed to carefully hold Henry on a pillow. Heâd have to be gingerly lifted out of his bed by two or three people, making sure none of his lines and ventilation got tangled, but we could hold our baby boy again.
The weight of him in my arms was heaven. The ability to kiss him, to put my lips on his tummy and his shoulders. His ears werenât yet freed from the bandages, but I would get to kiss and nibble gently on those soon too. He was quite knocked out from the surgery. He did start to wiggle about and respond definitively to all our stimuli, however, and was very awake and alert after a week. Things like crawling or cruising, however, were gone for a long time, and would need to be relearnt.
The big motherf***er was that he had lost the ability to swallow. They told us he might regain it in time. In the days following Henryâs surgery, Leah and I moved into housing next to the hospital that is provided for parents whose kids are in the paediatric ICU, or âPICUâ.
It often felt like we were falling down a flight of stairs in slow motion with each successive piece of bad news we got. One day, we were going through the notes on Henryâs surgery and learnt that the nerve that allowed him to hear with his left ear had been severed, and the nerve that went to his right ear was damaged.
Discovering weeks into hospital life that, on top of everything else, he was deaf in one ear and hard of hearing in the other was emblematic of the whole vicious experience; a terrible knock-on development with massive consequences that was buried among everything else to the point where weâd almost missed it.
After two months in the ICU, Henry moved into one of the hospitalâs cancer wards. He was getting chemo for several months, going through cycles of treatment and recovery that left him by turns sick, exhausted and desperate to play games like any other one-year-old.
Henryâs first hairs fell out and he was bald again, and I would hold his head and kiss it and feel the warmth of it. It was such a pleasure to do that. When he grew hair after the chemo, we didnât cut it and, oh my God, it was so beautiful. I loved to put my fingers through it and comb it behind his ear and just ⊠I get mad when I think about how beautiful he was. His hair, his face, his eyes that were such a bright blue. It makes me angry that people wonât get to look at them. Those eyes were two of the most glorious things Iâve ever seen and it offends me that theyâre not there for people to gaze into.
Once the nightmare of his diagnosis and surgery and disability and chemo and all that entailed became our norm, we did our best to be a family that was spread over two hospitals and our home.
Leah and I made an active decision to protect our marriage, day in, day out, throughout Henryâs illness. The way this manifested was simple. Leah and I would go on a date once a week, even when Henry was in the ICU. It didnât have to be a fancy restaurant with a tablecloth. It could be a walk around a park, holding hands. It could be breakfast near the hospital. But we had to look at each other and touch each other and check in and see how the other one was doing. Then we carried that communication through the rest of the day, touching, speaking, just listening to each otherâs voices.
I hesitate to give advice, but I have to say that if youâre ever in a situation like the one in which my family found ourselves, do not forget to love, touch and look into the eyes of every other family member regularly. Early during our time in hospital, I started to think of us as five fingers of the same hand. Every finger is important, even the crooked and/or hairy ones. There is a temptation to only pay attention to the patient, especially if theyâre a young child, but you ignore other family members at your peril. I canât speak for my Henry, but Iâm willing to bet he was happy that Leah and I took good care of the brothers he loved so much, and each other.
After seven months in Great Ormond Street Hospital and seven months in Whittington, we were desperate to get Henry home. He had just turned two. We hadnât dared assume heâd have a second birthday with the prognosis heâd received, but that day came.
When he moved home in June 2017, he exploded even more furiously into life. It meant seeing him interact with us in a way he hadnât for so long. Playing with the toys his brothers played with, lying in our bed with us, flying around the flat on the little scooter heâd mastered. He loved going to the park and playing catch with dogs, dancing wildly to Sia and Justin Bieber with his mom, and playing with his brothers, whom he was crazy about, and who cared for him so lovingly. Henry smiled all the time. And if he opened his mouth when he was smiling and showed you some teeth, thatâs when you really knew you had him.
Having Henry at home was terrifying at first. We had to turn his bedroom into a specialised hospital room with some sizeable machines, including an oxygen concentrator, feed pump and assorted monitors. The first couple of weeks felt like running a half-marathon. But we did it. And after the initial fear subsided, we loved it. We were home together, under one roof. We could spend the whole day together, from waking until sleeping, as a family. It felt good and it felt right.
In September 2017 he had another MRI to see if any cancer had returned. The big boys didnât have school that day, so we brought Eugene and Oscar along with Henry and his carer, Angela, when we went into Great Ormond Street to get the results. I remember walking into the room and thinking it had more people in it than normal. Rather than launch into the results, his main oncologist, Dr Mitchell, asked how Henry was doing. We said he was doing great. Really progressing with physical therapy. Cruising beautifully and crawling quickly upstairs, leading us to believe that walking might not be far off. He was very happy to be at home.
âWow,â said Dr Mitchell. âWell, I asked because I am sorry to say that the MRI showed that the cancer has started to return.â Henry played obliviously, beautifully, on the floor. My stomach filled with stones. They told us they felt there were options, like more surgery and radiation, but we could talk more about that after weâd digested the bad news. I donât remember anything else about the meeting. We shuffled out of the room to the area where Angela was waiting with the two big boys. Our eyes met hers, and she knew. We all cried.
Leah understood before I did that there could be no more treatment. I am so grateful that she is so smart and so strong. We decided to stop Henryâs treatment. We were told we could expect him to live for three to six more months.
We told Eugene and Oscar, who were four and six, that Henryâs cancer had come back and that there was nothing more that could be done. They asked if he was going to die. We said yes. We were in our back garden, where the three of them played together. The three boys, whose health and vitality I used to consciously marvel at and be grateful for before Henry got sick.
One night, soon after, I told one of Henryâs night carers, Rachel, that his cancer had returned and that he was going to die. She yelled, âOh no! Oh, Henry! Oh, Jesus Christ, no!â She recoiled from the news like Iâd hit her. âNo, no, no,â she continued. âYes, yes,â I thought. Her response was like water in the desert to me. Rachel was from Nigeria and a mom and a devout Christian. Maybe one or more of those factors explained her response, I donât know. But it beat the hell out of a lot of the responses Leah and I were getting from people when they heard the news. Many people are afraid of you when your child is dying. I preach sympathy in lots of situations, but not this one. Perhaps because my sympathy wouldnât do anything. Life, and death, will kick their own door down soon enough; I donât really know that a lecture from me on how theyâre a coward would help. So, Rachel, thank you for gasping in pain and sadness when you learnt Henry would die. In the years since, I think of it often as the absolute best response I received. It helped me, Rachel. Yes, scream it from the rooftops. My beautiful baby boy is going to die.
It was so f***ing confusing seeing him bound around so happily, functioning at the highest level of his life, physically and mentally, knowing he was going to die. I felt absolutely insane. We went to the park all the time. I signed on to do a fourth and final series of Catastrophe in the future, so I knew Iâd make money again at some point. Henry played with his brothers and little buddies. Weâd cry with our friends and family and his carers.
We had a guy who did animal birthday parties come over and bring tarantulas and turtles and weird little mammals. Henry was overjoyed. We took baths and the five of us routinely crowded our tiny shower and laughed, played and splashed. He glowed with joy, and so did we.
And so 2018 arrived. It was on the morning of about January 9 that Henry didnât seem to totally wake up. He seemed sluggish and he held his head at an angle, indicating pain. We called the palliative care team at Great Ormond Street and they came to our house. The doctor confirmed that his sluggishness and discomfort probably meant that the tumour was growing and creating the problems that a large foreign object in a childâs head is known to do.
She prescribed morphine and gabapentin to help with his pain. The morphine was a bright red powder that I would mix with water and then load into a syringe, which Iâd then attach to his feeding tube to administer. Iâm glad it was bright red. The thing you put into your dying child to dull his pain should be bright red, like a flag or a flare or a fire truck racing to a disaster.
Morphine and gabapentin work, so he would relax and we would hold him. He got slower each day, as though a dial was being turned down. A big Lego Duplo ice-cream cone became very important to him, and he liked to hold it in his hand all day. Rather than wait until he seemed to be in pain we were told we could give him his medication on a schedule, so there would be little or no pain any more. I dissolved the bright red powder in water and gave it to him, day and night. I lay with him, and Leah held him and danced with him. His brothers read to him and played with him.
Henry began to open his eyes less and less. He held his little ice-cream cone. He was dying.
He was unconscious. I made sure to keep up with the red powder. Our moms took the boys to dinner and some sort of winter light show in a nearby square so we could be with Henry.
Sending them out the door was excruciating, as we didnât know if Henry would be alive when they returned. We told our night carer not to come in that night. We lay on either side of Henry on the couch. We carried Henry out to the back garden so he could be under the stars and in the night air one more time before he died. Leah took a bath with him, and I sat on the floor next to him. He was so beautiful and so smooth and so perfect. His hair was pretty long, as we never cut it once it grew back after chemo.
Our boys returned and Henry was still alive. Then it was just the five of us in the house. Five people who loved each other and needed each other. Henry opened his eyes and looked into Leahâs eyes around five the next morning. Then he died.
I am so happy Henry died at home. I am so happy that he did so in the arms of his beautiful mother, who loved him desperately. I am so happy that he lay between us afterward and we could kiss and hold him and stroke his beautiful long, sandy-blond hair. I am so happy that shortly afterward, his brothers Eugene and Oscar came up and cuddled with him and kissed him and were not afraid, because they had been so intimately involved in his care over the last two years, in the hospitals and then at home. Henry knew happiness and curiosity and love and brotherly squabbles every day that he was home. And that absolutely included his final days. His death was good. We kept Henryâs body at home for most of the day. They were some very precious hours.
People who loved him visited. A doctor came by to confirm and record his death. Oh Christ, he was beautiful in death. In his little pyjamas. We kept the windows open so he could stay cold. I told the loud builders next door that my son was lying dead on our bed and we had to keep the windows open, so please stop work for the day. They did.
When youâre a parent and your child gets hurt or sick, not only do you try to help them get better, but youâre also animated by the general belief that you can help them get better. It might not be the wound-cleaning you personally administer or the medicine you yourself pour into their mouth â you might have to get them to a nurse or a doctor who has the right equipment and skill set â but you believe that itâs you who will get them to the right place, via car or taxi or, God forbid, ambulance, and that, once there, youâll sit by their side or maybe hold them in your lap and theyâll get what they need. Add a little time to mend, heal, rest, and youâll soon have an exciting story to tell. Thatâs not always the case, though. Sometimes, the nurses and the doctors canât fix whatâs wrong. Sometimes, children die. Whateverâs wrong with your child gets worse and they suffer and then they die.
After they die, their body begins to decompose and later itâs zipped into a black bag and taken away by an undertaker in a black van. A few days later, your child is buried in a hole in the ground or cremated in a furnace that incinerates their body into ashes, which you take back to your house and put on a shelf. You wish you could take a kitchen knife and stick it into yourself near one of your shoulders and pull it down and across to the hip on the opposite side of your torso. Then youâd tear apart skin, fat, muscle and viscera, and pull your child out of you again and kiss them and hold them and try frantically to fix what you couldnât fix the first time. But that wouldnât work. So you sit there like a decaying disused train station while freight train after freight train overloaded with pain roars through you. Maybe one will derail and explode, destroying the station and killing you, and you can go and be with your child. Would that be so bad?
Why do I feel compelled to talk about it, to write about it, to disseminate information designed to make people feel something like what I feel? What my wife feels? What my other sons feel? Done properly, it will hurt them. Why do I want to hurt people? (And I do.) Did my sonâs death turn me into a monster? Thatâs certainly possible. It doesnât sanctify you. Things get broken. Maybe itâs because I write and perform for a living that I canât help but try to share or communicate the biggest, most seismic event that has happened to me. The truth is, despite the death of my son, I still love people. And I genuinely believe, whether itâs true or not, that if people felt a fraction of what my family felt and still feels, they would know what this life and this world are really about.
© Rob Delaney 2022. Extracted from A Heart That Works, to be published by Coronet on Thursday at £16.99. Rob Delaney will be speaking this week in Cheltenham, Manchester, London and Edinburgh.
âThe heaviest pain in the worldâ â Rob Delaney on his sonâs death
At the height of his success, the Catastrophe star learnt that his toddler, Henry, was dying of a brain tumour. He tells his familyâs devastating story
The first year of my son Henryâs life was a tornado. His brothers, Eugene and Oscar, were four and two, so we had three boys under five. I say âweâ, but it was mostly my wife, Leah, by a long shot. Catastrophe, the TV series I wrote and starred in alongside Sharon Horgan, got picked up for a second series before the first one even aired, and it didnât occur to me to take a break before beginning work on the second one. We just dived right in, and in my work fever I let my family simmer unattended on a back burner.
Of course, there were moments of beauty and togetherness, and Eugene and Oscar were loving and proud brothers to Henry, who smiled and babbled at them and was just generally a delightful and smooth little nugget we all loved to kiss and squeeze and make laugh. A house with three boys can seem like a ramshackle zoo on the edge of town: loud, dangerous and terrifying to the observer. Henry sensed that being the smallest animal in the zoo, heâd have to employ alternative tactics to get noticed. And he did. He was impossibly sweet and calm and lovely, so you were just drawn to him. It was a smart approach, and it worked.
I think about my son Henry as a little baby, and I think about him as a toddler. I think about the expressions he used to make, and his hands and feet and legs. Itâs wonderful and it hurts. I think about Henryâs hair every single day. Despite my own full-body coat of fur, Leah and I exclusively produce bald babies. And just as he started to grow hair, they found the tumour in his head.
Henry got sick when he was 11 months old. When he vomited at Eugeneâs fifth birthday party, we didnât think anything of it; he was our third kid and weâd cleaned up enough gallons of puke not to be fazed. Iâd been feeding him blueberries, so there were maybe 15 or 20 recognisable blueberries in there. A few too many blueberries â whatâs the big deal? Party on.
When Henry vomited two more times the next day, we started worrying and I took him into A&E. The doctor got the idea Henry might have a urinary tract infection. We left with some antibiotics, on the understanding that theyâd call us and tell us if a UTI was the culprit. It wasnât.
Over the next couple of weeks Henry kept vomiting so we brought him to our local GP, where he promptly vomited on the floor. He gave us an appointment to see a gastroenterologist. That doctor gave Henry an antiemetic and told us to monitor him for a while and come back if things got worse.
Henryâs vomiting intensified. My baby was getting smaller, and I would start crying whenever he threw up. I would try not to cry in front of his older brothers and fail, and theyâd ask why, and I would say it was because I was scared. 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.
On April 26, 2016, Sharon and I won the Bafta for comedy writing and the very day after that, a doctor told us Henry might have a brain tumour, and scheduled the MRI that would confirm it. That conversation, understandably, is seared in my mind. And yet so many of the days, months and years that followed are obscured by a fog. Grief drove a bus through the part of my brain where memories are stored. After the MRI, Dr Anson confirmed that Henry had a large tumour in the back of his head, near his brain stem. He delivered the news calmly, and ended by saying a paediatric brain surgeon would come to see us within a few hours. We sank inside ourselves. The heaviest pain in the world. I felt like I had suddenly quadrupled in weight, and an oily, black whirlpool began to swirl where my heart had been.
Dr Anson said we could go and see Henry, so we left his office and headed down a flight or two of stairs. Along a corridor, Leah found an unoccupied breastfeeding room and went inside and started screaming. I held her.
When we were able, we left that room and walked out of the building and across the street to the one Henry was in. Henry was just waking up, and Leah tenderly hugged and kissed him. I wrapped myself around Leah and Henry. He looked at us, tired and confused. He had turned one less than two weeks before. Sitting with him in those hours after his MRI, after we found out about the tumour, we werenât thinking about the next year of his life; we could only think about the next few days.
Eventually a brain surgeon from Great Ormond Street Hospital came to the private hospital and introduced himself to us. He was a nice, calm, quiet guy named Mr Elsawi. He said we were going to get to know each other well, which was both comforting and upsetting. He told us that Henry had a tumour the size of an apple near his brain stem and that he would open Henryâs head in a few days and try to remove the tumour. We digested that news and a little while later, Henry and Leah and I were taken to Great Ormond Street Hospital.
Upon our arrival, Henry was admitted and given a bed in their brain and neurology ward. We were shown to a shower room where all three of us could fit in, and Leah showered with Henry, holding him. I took their picture and in it, beautiful naked Leah is cradling beautiful naked Henry under the warm water and the expression on his face is one of pain and fatigue you would normally associate with an old man.
In those first few hours at the hospital, we met doctors and nurses whoâd seen Henryâs type of tumour before. They were calm, purposeful. We were disorientated and in shock. We held him and loved him and got ready for the big surgery a few days later.
We spent the four days leading up to Henryâs surgery in terrified anticipation. The surgery would take all day, so Leah and I got a hotel room close to the hospital. At the hotel we were so crazy and scared and holding each other so tight, we actually wound up having sex, twice, a few hours apart.
I realise it sounds insane to say that we had sex twice while our one-year-old had brain surgery across the street. I would normally omit that very personal fact, which might horrify some people, but I am sharing it primarily for the benefit of other parents who might have been through something similar and were terrified and crying and nearly hyperventilating with anxiety. I guess we were just so scared and wanted to be so close, and the horror of what was happening around the block didnât erase the fact that we loved each other, and sometimes that love manifests as sex, even in the absolute worst of times.
After 13 hours we were told the surgery was done and we could see our beautiful baby boy. We kissed him and told him we loved him. Elsawi said that he had removed all the tumour he could find. Henry had a vast number of tubes and wires attached to him and going in and out of orifices, and cannulas going into various veins. A few days after the surgery, we were allowed to carefully hold Henry on a pillow. Heâd have to be gingerly lifted out of his bed by two or three people, making sure none of his lines and ventilation got tangled, but we could hold our baby boy again.
The weight of him in my arms was heaven. The ability to kiss him, to put my lips on his tummy and his shoulders. His ears werenât yet freed from the bandages, but I would get to kiss and nibble gently on those soon too. He was quite knocked out from the surgery. He did start to wiggle about and respond definitively to all our stimuli, however, and was very awake and alert after a week. Things like crawling or cruising, however, were gone for a long time, and would need to be relearnt.
The big motherf***er was that he had lost the ability to swallow. They told us he might regain it in time. In the days following Henryâs surgery, Leah and I moved into housing next to the hospital that is provided for parents whose kids are in the paediatric ICU, or âPICUâ.
It often felt like we were falling down a flight of stairs in slow motion with each successive piece of bad news we got. One day, we were going through the notes on Henryâs surgery and learnt that the nerve that allowed him to hear with his left ear had been severed, and the nerve that went to his right ear was damaged.
Discovering weeks into hospital life that, on top of everything else, he was deaf in one ear and hard of hearing in the other was emblematic of the whole vicious experience; a terrible knock-on development with massive consequences that was buried among everything else to the point where weâd almost missed it.
After two months in the ICU, Henry moved into one of the hospitalâs cancer wards. He was getting chemo for several months, going through cycles of treatment and recovery that left him by turns sick, exhausted and desperate to play games like any other one-year-old.
Henryâs first hairs fell out and he was bald again, and I would hold his head and kiss it and feel the warmth of it. It was such a pleasure to do that. When he grew hair after the chemo, we didnât cut it and, oh my God, it was so beautiful. I loved to put my fingers through it and comb it behind his ear and just ⊠I get mad when I think about how beautiful he was. His hair, his face, his eyes that were such a bright blue. It makes me angry that people wonât get to look at them. Those eyes were two of the most glorious things Iâve ever seen and it offends me that theyâre not there for people to gaze into.
Once the nightmare of his diagnosis and surgery and disability and chemo and all that entailed became our norm, we did our best to be a family that was spread over two hospitals and our home.
Leah and I made an active decision to protect our marriage, day in, day out, throughout Henryâs illness. The way this manifested was simple. Leah and I would go on a date once a week, even when Henry was in the ICU. It didnât have to be a fancy restaurant with a tablecloth. It could be a walk around a park, holding hands. It could be breakfast near the hospital. But we had to look at each other and touch each other and check in and see how the other one was doing. Then we carried that communication through the rest of the day, touching, speaking, just listening to each otherâs voices.
I hesitate to give advice, but I have to say that if youâre ever in a situation like the one in which my family found ourselves, do not forget to love, touch and look into the eyes of every other family member regularly. Early during our time in hospital, I started to think of us as five fingers of the same hand. Every finger is important, even the crooked and/or hairy ones. There is a temptation to only pay attention to the patient, especially if theyâre a young child, but you ignore other family members at your peril. I canât speak for my Henry, but Iâm willing to bet he was happy that Leah and I took good care of the brothers he loved so much, and each other.
After seven months in Great Ormond Street Hospital and seven months in Whittington, we were desperate to get Henry home. He had just turned two. We hadnât dared assume heâd have a second birthday with the prognosis heâd received, but that day came.
When he moved home in June 2017, he exploded even more furiously into life. It meant seeing him interact with us in a way he hadnât for so long. Playing with the toys his brothers played with, lying in our bed with us, flying around the flat on the little scooter heâd mastered. He loved going to the park and playing catch with dogs, dancing wildly to Sia and Justin Bieber with his mom, and playing with his brothers, whom he was crazy about, and who cared for him so lovingly. Henry smiled all the time. And if he opened his mouth when he was smiling and showed you some teeth, thatâs when you really knew you had him.
Having Henry at home was terrifying at first. We had to turn his bedroom into a specialised hospital room with some sizeable machines, including an oxygen concentrator, feed pump and assorted monitors. The first couple of weeks felt like running a half-marathon. But we did it. And after the initial fear subsided, we loved it. We were home together, under one roof. We could spend the whole day together, from waking until sleeping, as a family. It felt good and it felt right.
In September 2017 he had another MRI to see if any cancer had returned. The big boys didnât have school that day, so we brought Eugene and Oscar along with Henry and his carer, Angela, when we went into Great Ormond Street to get the results. I remember walking into the room and thinking it had more people in it than normal. Rather than launch into the results, his main oncologist, Dr Mitchell, asked how Henry was doing. We said he was doing great. Really progressing with physical therapy. Cruising beautifully and crawling quickly upstairs, leading us to believe that walking might not be far off. He was very happy to be at home.
âWow,â said Dr Mitchell. âWell, I asked because I am sorry to say that the MRI showed that the cancer has started to return.â Henry played obliviously, beautifully, on the floor. My stomach filled with stones. They told us they felt there were options, like more surgery and radiation, but we could talk more about that after weâd digested the bad news. I donât remember anything else about the meeting. We shuffled out of the room to the area where Angela was waiting with the two big boys. Our eyes met hers, and she knew. We all cried.
Leah understood before I did that there could be no more treatment. I am so grateful that she is so smart and so strong. We decided to stop Henryâs treatment. We were told we could expect him to live for three to six more months.
We told Eugene and Oscar, who were four and six, that Henryâs cancer had come back and that there was nothing more that could be done. They asked if he was going to die. We said yes. We were in our back garden, where the three of them played together. The three boys, whose health and vitality I used to consciously marvel at and be grateful for before Henry got sick.
One night, soon after, I told one of Henryâs night carers, Rachel, that his cancer had returned and that he was going to die. She yelled, âOh no! Oh, Henry! Oh, Jesus Christ, no!â She recoiled from the news like Iâd hit her. âNo, no, no,â she continued. âYes, yes,â I thought. Her response was like water in the desert to me. Rachel was from Nigeria and a mom and a devout Christian. Maybe one or more of those factors explained her response, I donât know. But it beat the hell out of a lot of the responses Leah and I were getting from people when they heard the news. Many people are afraid of you when your child is dying. I preach sympathy in lots of situations, but not this one. Perhaps because my sympathy wouldnât do anything. Life, and death, will kick their own door down soon enough; I donât really know that a lecture from me on how theyâre a coward would help. So, Rachel, thank you for gasping in pain and sadness when you learnt Henry would die. In the years since, I think of it often as the absolute best response I received. It helped me, Rachel. Yes, scream it from the rooftops. My beautiful baby boy is going to die.
It was so f***ing confusing seeing him bound around so happily, functioning at the highest level of his life, physically and mentally, knowing he was going to die. I felt absolutely insane. We went to the park all the time. I signed on to do a fourth and final series of Catastrophe in the future, so I knew Iâd make money again at some point. Henry played with his brothers and little buddies. Weâd cry with our friends and family and his carers.
We had a guy who did animal birthday parties come over and bring tarantulas and turtles and weird little mammals. Henry was overjoyed. We took baths and the five of us routinely crowded our tiny shower and laughed, played and splashed. He glowed with joy, and so did we.
And so 2018 arrived. It was on the morning of about January 9 that Henry didnât seem to totally wake up. He seemed sluggish and he held his head at an angle, indicating pain. We called the palliative care team at Great Ormond Street and they came to our house. The doctor confirmed that his sluggishness and discomfort probably meant that the tumour was growing and creating the problems that a large foreign object in a childâs head is known to do.
She prescribed morphine and gabapentin to help with his pain. The morphine was a bright red powder that I would mix with water and then load into a syringe, which Iâd then attach to his feeding tube to administer. Iâm glad it was bright red. The thing you put into your dying child to dull his pain should be bright red, like a flag or a flare or a fire truck racing to a disaster.
Morphine and gabapentin work, so he would relax and we would hold him. He got slower each day, as though a dial was being turned down. A big Lego Duplo ice-cream cone became very important to him, and he liked to hold it in his hand all day. Rather than wait until he seemed to be in pain we were told we could give him his medication on a schedule, so there would be little or no pain any more. I dissolved the bright red powder in water and gave it to him, day and night. I lay with him, and Leah held him and danced with him. His brothers read to him and played with him.
Henry began to open his eyes less and less. He held his little ice-cream cone. He was dying.
He was unconscious. I made sure to keep up with the red powder. Our moms took the boys to dinner and some sort of winter light show in a nearby square so we could be with Henry.
Sending them out the door was excruciating, as we didnât know if Henry would be alive when they returned. We told our night carer not to come in that night. We lay on either side of Henry on the couch. We carried Henry out to the back garden so he could be under the stars and in the night air one more time before he died. Leah took a bath with him, and I sat on the floor next to him. He was so beautiful and so smooth and so perfect. His hair was pretty long, as we never cut it once it grew back after chemo.
Our boys returned and Henry was still alive. Then it was just the five of us in the house. Five people who loved each other and needed each other. Henry opened his eyes and looked into Leahâs eyes around five the next morning. Then he died.
I am so happy Henry died at home. I am so happy that he did so in the arms of his beautiful mother, who loved him desperately. I am so happy that he lay between us afterward and we could kiss and hold him and stroke his beautiful long, sandy-blond hair. I am so happy that shortly afterward, his brothers Eugene and Oscar came up and cuddled with him and kissed him and were not afraid, because they had been so intimately involved in his care over the last two years, in the hospitals and then at home. Henry knew happiness and curiosity and love and brotherly squabbles every day that he was home. And that absolutely included his final days. His death was good. We kept Henryâs body at home for most of the day. They were some very precious hours.
People who loved him visited. A doctor came by to confirm and record his death. Oh Christ, he was beautiful in death. In his little pyjamas. We kept the windows open so he could stay cold. I told the loud builders next door that my son was lying dead on our bed and we had to keep the windows open, so please stop work for the day. They did.
When youâre a parent and your child gets hurt or sick, not only do you try to help them get better, but youâre also animated by the general belief that you can help them get better. It might not be the wound-cleaning you personally administer or the medicine you yourself pour into their mouth â you might have to get them to a nurse or a doctor who has the right equipment and skill set â but you believe that itâs you who will get them to the right place, via car or taxi or, God forbid, ambulance, and that, once there, youâll sit by their side or maybe hold them in your lap and theyâll get what they need. Add a little time to mend, heal, rest, and youâll soon have an exciting story to tell. Thatâs not always the case, though. Sometimes, the nurses and the doctors canât fix whatâs wrong. Sometimes, children die. Whateverâs wrong with your child gets worse and they suffer and then they die.
After they die, their body begins to decompose and later itâs zipped into a black bag and taken away by an undertaker in a black van. A few days later, your child is buried in a hole in the ground or cremated in a furnace that incinerates their body into ashes, which you take back to your house and put on a shelf. You wish you could take a kitchen knife and stick it into yourself near one of your shoulders and pull it down and across to the hip on the opposite side of your torso. Then youâd tear apart skin, fat, muscle and viscera, and pull your child out of you again and kiss them and hold them and try frantically to fix what you couldnât fix the first time. But that wouldnât work. So you sit there like a decaying disused train station while freight train after freight train overloaded with pain roars through you. Maybe one will derail and explode, destroying the station and killing you, and you can go and be with your child. Would that be so bad?
Why do I feel compelled to talk about it, to write about it, to disseminate information designed to make people feel something like what I feel? What my wife feels? What my other sons feel? Done properly, it will hurt them. Why do I want to hurt people? (And I do.) Did my sonâs death turn me into a monster? Thatâs certainly possible. It doesnât sanctify you. Things get broken. Maybe itâs because I write and perform for a living that I canât help but try to share or communicate the biggest, most seismic event that has happened to me. The truth is, despite the death of my son, I still love people. And I genuinely believe, whether itâs true or not, that if people felt a fraction of what my family felt and still feels, they would know what this life and this world are really about.
© Rob Delaney 2022. Extracted from A Heart That Works, to be published by Coronet on Thursday at £16.99. Rob Delaney will be speaking this week in Cheltenham, Manchester, London and Edinburgh.
