Our little boy and his fight against cancer
CELEBRATION OF RORY HALL
For those of you who couldn’t make Rory’s Celebration of Life, or for any who did come but wanted to revisit any bit of the story again, we thought we’d put some of the text up here. Stuff in italics is to fill in any gaps, and asterisks signal where we showed a projected photo, the odd one of which we’ve included here. To see a copy of the order of service, please click here.
We found the writing process really cathartic and healing and forgive us for splurging it all here again, but we hope that it's helpful for those around us to share and understand. And spend a moment thinking of our little boy.
We had a private ceremony in the morning just with family at Westerleigh Crematorium, so Rory didn't actually attend the Celebration - in body anyway!
To set the scene: we were in the Glass Studio at St George’s Bristol – a gorgeous, airy room full of light. An amazing team of friends had assembled there in the morning to set up tech for us and decorate the room. This included hanging approx. 650 photos of Rory on the walls…
Matt and I found the entire day completely overwhelming, but we were particularly overwhelmed by the generosity of those who’d decorated, baked, arranged flowers, written words and generally done so much behind-the-scenes work to make Rory’s day so special.
More people than we ever expected to join us arrived (apologies for the lack of chairs – we were somewhat taken aback!) and so we began to celebrate Rory.
Our lovely celebrant, Clare Bennett, welcomed us to the memorial service and gave a quick introduction to our family. And then Matt and I took to the mic…
Amy:
I can’t decide whether more people have seen me cry in the last three months, or seen my boobs. It’s a fairly safe bet which you’re more likely to see today, but that depends, to some extent, on how many gins I’m bought later…
As some of you may know, Rory wasn’t entirely expected. We knew, of course, that we were lucky, but Matt and I found ourselves thrown abruptly into a world of antenatal classes and birth plans that we really weren’t sure we were ready for. We weren’t even sure if we were the right people for the job at all.
If only someone could have told us that we needn’t have had any fear, because waiting just inside me here was the coolest cucumber of them all, the wisest of all owls: Rory William Hall.
From day 1 of pregnancy, Rory was determined and knew exactly what he was doing. He spent a very chilled, uneventful 9 months in utero and emerged at St Michael’s Hospital, only two days early, just as suavely as he intended to carry on*. Although we’d been admitted to the Central Delivery Suite for extra monitoring, the midwife looking after us said that Rory’s trace was one of the calmest she’d ever seen in labour. My waters also never broke - Rory was born in the amniotic sac, which is supposedly lucky, but take from that what you will…
We spent two nights in hospital - for my benefit, not Rory’s - and a lot of time staring in wonder and disbelief at our beautiful baby boy*. And asking various midwives whether we’d put a nappy on correctly. Rory also breastfed almost perfectly straightaway - again, it was him that was in charge, and I was the clueless one catching up. Matt and I said from day one that Rory was always the expert in the room.
Matt, Rory and I spent a glorious two weeks together in a little family bubble while Matt was on Paternity Leave. As I’m sure many new parents can attest to, there was no structure, no day and night, just endless hours within which to meet this new, glorious, demanding, confusing, wonderful human that we’d created. We named Rory 9 days after he was born. Rory, because we liked it and he was our little king (albeit not red-haired), and William after my dad. While this was obviously his official name, Matt and I had referred to Rory throughout pregnancy and the first 8 days as “The Bean”, which was inevitably what we carried on calling him. Our perfect little Bean*.
We learnt so much, as any new parent must. We experienced all the fluids - snot, vomit*, all kinds of poo, wee (and how important it is to be prepared and wary when changing a boy’s nappy) - you name it, we had laughed about it and cleaned it up. We spent hours just watching our little Bean, marvelling at just how much hair* he was born with and enjoying every new facial expression, including a fleeting, gorgeous glimpse of what might one day soon be his smile*. We also, occasionally, witnessed what it looked like when Rory* wasn’t quite so chilled… We passed him proudly back and forth between his doting grandparents, aunt and uncle, but selfishly enjoyed, more than anything, having him to ourselves. His happiest place was firmly* snuggled on me or dad’s chest.
We tried to get out into the world with him every day, gradually conquering our “new parent” fear. Matt and Rory, ever the pair, were consistently much more relaxed about this than I was. I was just about OK with the harbourside* and North Street, Leigh Woods was manageable*, but our week-old-baby trip to IKEA* was possibly the most stressed I had ever been.
We invited Rory’s Uncle Jim up to share some words about Rory and watching us as new parents. Then we played our first piece of music, Only Wanna Be With You by Samm Henshaw, which you can listen to here:
Matt:
Needless to say that song quickly became “Only wanna be with Bean”
When you’re expecting a baby, lots of experienced parents fill you with horror stories - and tell you how you’ll amaze yourself at the ability to function on such little sleep - well - Rory generally woke up because we did, or if he woke any earlier, he’d wait for something else to break the silence which was often my alarm.
After a few weeks old he was sleeping solid in his characteristic arms above his head sleeping position, and I was more likely to be tired at work because we’d all overslept than had a restless night.
But then Rory needed a good night's sleep as he had a busy schedule - always someone to meet or a group to be handed round, because of course, we wanted to show him off. In our disbelief we’d made this amazing, beautiful, charming little human and all our nervousness about parenthood was being lifted by this amazing boy.
He had a knack of being an adoring baby for a while as he’s handed round people eager to meet him and then when he’d had enough - he’d demand some boob and bury his head into Amy or my shoulders. This was one of the many new discoveries of parenthood that I hadn’t even thought about before having Rory. All the tiny little nuances a baby does that make you feel electric inside.
We made our first trip to the Lake District, where I grew up, when he was 5 weeks old, initially daunted by the journey and then realising we had the most laid back baby in the world so it would be fine, and it was. We visited a festival my Mum used to help organise and started to teach Rory about the Grandmother he wouldn’t get to meet.* I don’t think he took much of it in, but enjoyed a day being bounced around in a sling!
It was our first trip away as parents - I couldn’t have been prouder walking round with Rory strapped to my chest.
We have so many magical and silly memories together; Amy got a mixing bowl for her birthday, we decided we should see how it fit Rory*, after we discovered that he did, we had gorgeous picnic in the park* just the three of us and then in the evening Amy went to a gig on the harbourside so me and Rory went to the other side of the harbour* and watched it from there - the two of us, first father and son gig, we took him to WOMAD, a world music festival where he kept his ear defenders* on just long enough for a photo, and on a return trip to the lakes, I decided to introduce him to paddle boarding*, which he clearly loved.
A group of us took part in a mighty hike walk raising money for Macmillan when Rory was 7-weeks old. Amy was determined to take part, obviously having not long since giving birth - so we made a plan - a support truck with my Dad (Grandpa) and one of Rory’s many surrogate Grandma’s, Gill, would follow us round the course with a hungry bean - picking us up for feeds every couple of hours.
And, as we are now unsurprised by, Rory didn’t care - quite happy being entertained by the scenery, while he waits for his rather busty mother in need of an offload - and then off again for a few hours.
I got wind that word had got round the event that some amazing woman was breastfeeding the cutest of all baby’s on the course - how proud was I?
At about 8 weeks old something really magical happened - we got a glimpse of the heart melting thing that would be Rory Hall’s smile* - his look was completed, now added to his super cool persona, a smile that could get him anything.
Amy and I spent so long just staring at him! The thing we’d made - was beautiful.
Amy:
The end of Rory’s first summer was just as full of new joy, new faces and new places as the beginning had been. He saw plenty of his home town, accompanied friends on many a stroll around the harbour and began swimming lessons (not in the harbour - I might add) which we knew would be a success, as he loved baths so much*. He may also have been the only Bristolian to not be disappointed by 2019’s International Balloon Fiesta*. (Please be assured that this photo was purely for effect, we were entirely responsible parents.)
He grew beautifully and graduated from pram to pushchair*, and from moses basket to cot. Being one of the first babies in our friendship group, and the first grandchild to our parents, Rory was particularly showered with gifts. One of these was Terry, his little red triceratops* from Aunty Becky, which became his mascot and which kept him company right until the end. Another favourite was his musical fox, which came with his play mat from his Great Uncle Andrew. It plays some “wake up” tunes and some “goodnight” tunes, and we often used the “goodnight” tunes, one of which is the Chopin listed in your orders of service, to tell Rory it was time to go to sleep. Hold that thought in your minds for later...
He went up the country a bit and did a good tour of local theatres, entertaining his Granny Manda while I taught at Chipping Norton Theatre, and making his stage debut at The Loft theatre in Leamington* while his dad set up some AV. He did a poo (standard) on stage at the Bear Pit in Stratford-upon-Avon and visited his Grampy at work at Longborough Festival Opera*. Given his farming roots, it was important that Rory make acquaintance as early as possible with various tractors*, various sheep*, more tractors*, hay* and... more tractors* at Moreton-in-Marsh Show. And for the sake of consistency, he also got back into the mixing bowl*.
We went back to the Lakes, and further even, on Rory’s first of two Scottish adventures. We went on Rory’s first train ride*, which clearly I was more excited about than he was, and he and I spent a very happy day wandering the streets and galleries of Glasgow while Matt was at work there. I even gave him the chance to embrace his Scottish heritage when we passed a bagpiper busking on Buchanan Street, which you can see he was really impressed by*.
All of the fear that Matt and I had imagined when travelling with a new baby was dispelled by Rory’s ever-chilled outlook. Yes, he let us know in no uncertain terms when he was hungry, and yes, he did many a spectacular poo at Strensham services, but he could not have been a dreamier little travel companion. And the joy that he brought friends and family on every trip up and down the country was tangible. We discovered that we were pregnant with Rory just two months after we lost Matt’s mum, Pam. He was a real glimmer of hope to emerge at the end of a dark, heartbreaking summer and the happiness that his new life brought to so many people was, and always will be, magical.
In early Autumn, we took Rory on his only trip to London, to see my Godmother Elaine, with whom I used to live. Her wisdom and generosity has been invaluable to me throughout my life and it was important to me that Rory should value her guidance just as equally. We are lucky that Elaine saw Rory at many stages of his life, including in hospital, so we wanted to invite her to share some words with us now.
My Godmother Elaine came up and spoke about all the different stages of life that she’d seen Rory in and about how cruel it is that we never expect those younger than us to pass away. She finished with the following quote from Albert Camus:
“ ‘In the depths of winter I finally learned that within me there lay an invincible summer.’ May that be true for you.”
Matt:
It would probably be forgivable for us to have regrets now, or have wished we’d done more with the time.
We're fortunate that we don’t have a single regret and don’t wish we’d done anything differently.
Rory had made life so enjoyable for us that we wanted to spend all the time we could with him, and make the most of the time because we wanted to, not because we felt we needed to - and given what we know now that’s a blessing.
Some of the best time we spent, was together on our only proper family holiday which was to Mull and Iona in Scotland.
It was exactly what we needed at the time, and looking back now it seems such a haven of happiness for us all. I felt that the three of us were just so excited for our lives together, for our family and for all the time and fun we could have together.
I look now at photos of Rory and I think it’s the most genuinely happy we ever saw him. *He loved the ferry, or the hat, we were never sure which. *Exploring. The views. Makeshift baths. The most stylish of scottish cafes.
Wind battered on a beach - it was a new sense that he’d not experienced, and he clearly liked it. He was so smiley, giggly and cuddly and without a thought of anything that was to come - and would rock our little world. In those moments nothing else mattered.
While Amy was pregnant we came to a concert by Karine Polwart in the venue next door here at St Georges, her music became a bit of the calm part of Rory’s soundtrack through pregnancy, life and in hospital. Amy often sang to Rory, and this song, Follow the Heron, was one they both knew well.
And this is where the service turned to more sad events. Our celebrant, Clare, introduced the next chapter of Rory’s life thus:
“On 19th October, Rory was admitted to the Bristol Royal Hospital for Children and diagnosed with a brain tumour. While the family endeavoured to continue with as much positivity and normality as possible, it is inevitable that Rory’s life was divided into two halves - before diagnosis and after diagnosis. Matt and Amy will now tell you more about Rory’s life in hospital after his diagnosis.”
Amy:
There are no words to describe how it feels when your child is diagnosed with something as life-changing as a brain tumour. Everything you thought you knew about your world is turned upside down and suddenly your horizon switches from dreams of playgroups, birthdays, family trips and future imaginings to right here, right now and getting through the next 24 hours. But Rory had no idea that anything was different - he just soldiered on cheerily and heroically, and so we tried to follow suit.
Rory had no obvious symptoms that would ring any alarm bells, apart from his right eye, which had begun to wander inwards at the end of September, as Elaine said. We assumed it was a squint or a lazy eye, so we went to the GP, who referred us to the eye hospital, who told us not to panic, but they were referring us up the hill to the Children’s Hospital in order that Rory could have an urgent MRI scan. It was only when somebody mentioned head circumference in A&E that the penny began to drop. (Just FYI, his particularly large head had nothing to do with his tumour - take a look at my forehead or his Uncle Jim’s head size for genetic reference…)
We spent 3 weeks in and out of Bluebell Ward (the Neurosurgical Ward), where we were gradually prepared for the enormity of Rory’s brain stem surgery. Almost all the clinicians we met were quite certain that, from what they could see on the scan, Rory’s tumour displayed all the signs of being a pilocytic astrocytoma: a benign tumour. There were, of course, a scarily long list of risks associated with the surgery, but high-tech monitoring was in place to minimize these. We knew that we’d have the best support from the hospital with regards to Rory’s recovery and we were, as parents, so ready to take on any developmental challenge, just as long as Rory made it out of surgery alive.
Which he did! We took Rory in early on Friday 8th November, kissed him a teary goodbye in the anaesthetic room, and left to walk the streets of Bristol for 10 hours (stopping only for me to come in and express valuable milk). The anaesthetist called us at about 4pm to say that all was going as well as he could possibly have hoped for and Rory would be out in a few hours and on his way to the High Dependency Unit. The amazing neurosurgery team had gone into Rory’s brain stem, partially resected a tumour, come out again and we didn’t know it yet, but of all the catastrophic side effects he could have been left with, Rory had only slight paralysis down the right side of his face. Which, if anything, just made him cuter.
Unfortunately, a partial resection was the best that the surgeons could do in the circumstances. They had been able, crucially, to biopsy the tissue, but there was definitely a bit of tumour left behind, however small. But, “no matter!”, we all thought. “Rory’s tumour is benign! We’ll get on top of whatever’s left - or maybe it can just stay there harmlessly for the rest of his life!”
Five days after surgery, we were told that the initial biopsy results had come back and it wasn’t quite what we’d all expected. Back we went to the Quiet Room of Doom, as we had, by then, christened it, to be told that Rory’s tumour wasn’t benign after all. It was cancerous: a type of brain tumour called medulloblastoma. And because of his age, and the fact that it was impossible to remove everything during surgery, he was classified as ‘high risk’, which meant that he would start an intensive chemotherapy regime as soon as possible, in this case, two weeks after surgery.
While Matt and I were reeling, devastated by this news, as ever, Rory remained the most chilled baby of all, ploughing determinedly on with his speedy recovery. One of his neurosurgeons told us that Rory had been “as cool as a cucumber” throughout surgery, at which we just gave a wry smile. Rory spent a mere 4 days in HDU and we were home within a week of him coming out of theatre. Apart from his palsy, the only obvious sign that he’d had brain surgery at all was a fantastic scar* all the way down the back of his head. He’d also been denied breastfeeds since his brain surgery, just in case the cranial nerves in control of his swallowing mechanism had been affected - it was too much of a choking risk initially and he was fed for five days using an naso-gastric tube. On the sixth day, we pushed really hard to try breastfeeding again, as we knew how much Rory loved it and we really thought it would aid his recovery. With the help of a speech and language therapist I tentatively offered Rory the boob. Well, evidently Rory had no feeding problems at all*. He latched on for possibly his longest feed ever, glaring at me throughout (as you can see) as if to say “Mum! What have you been doing for six days?!”
Two Fridays after his operation we returned to the children’s hospital, this time to Ocean Unit, the oncology day ward, in order for Rory to go back into theatre and have his Hickman line inserted*, along with a lumbar puncture, which would determine whether or not the cancerous cells had already spread. They hadn’t, which was good news, and all was in line to begin his chemotherapy after the weekend.
We then showed a a brief video (see below) which compiled some of the footage we took of Rory before he was admitted to Intensive Care. This was underscored by The Sun’s Comin’ Over the Hill by Karine Polwart, which we played to Rory in his last few days and then beyond, in the hospital’s Rainbow Room.
Matt:
On the top floor of the children’s hospital sits Starlight ward. There are many parts of the children’s hospital that just shouldn’t exist in this world, but this has to be pretty much at the top of the list. It’s a ward for children, under 11, who have cancer.
Walking into Starlight for the first time is kind of humbling - each room has a child braver than you could imagine and having done nothing in this world that could possibly warrant their illness - invariably taking it in their stride.
There’s a really cruel possibility that cancer chooses the people that can handle it the best, but then deserve it the least - it certainly felt like that with Rory.
Starlight’s a place you see on the news around Christmas or on charity adverts, but never a world you hope to associate yourself with. Unfortunately we were increasingly finding ourselves in places we didn’t belong, places that other people go.
Seeing our son’s name on the board of 15 children being treated, was a sinking feeling of reality that we were very firmly planted in that world, followed by a huge pride that our son is one of those brave heroic children. And at that point I’d look down at Rory in his pram, and he’d smile at me in a way to say - ‘I know what you’re thinking Dad, but we’ve got stuff to do’ - and I’d realise there’s nothing in the world that’s going to get between us, trying to fight this bastard cancer.
Rory’s chemo treatment was intense, it had to be - his diagnosis was a bad one and its location hard to treat, so he was given “the domestos treatment” (which is actually technically called ‘Headstart 2’), a cocktail of 5 chemotherapy drugs given over 4 days, alongside a combination of other drugs and fluids to support his body through its poisoning.
Hopefully we’d be home within 10 days or so, and ready to start the next cycle another 10 days later. The list of side effects and complications was extensive and unknown, and various blood tests along the way would dictate when he was recovered enough to go home and well enough to start the next cycle. It’s very hard not to hang your emotions on these blood tests and become obsessed by the results - and it wasn’t long before we were congratulating Rory on his neutrophil count and remorsing over a decline in platelets!
Apart from feeling totally under the weather* and generally fed-up, Rory took his first cycle of chemo well and perfectly in his stride, charming nurses at every opportunity and taking a keen interest in any new pipe or tube that he might be able to play with as soon as they’ve left the room.
One of the drugs, Methotrexate, needs to be flushed through his body. This turned his wee to acid and consequently his first experience of nappy rash, pretty extreme!* Sudacrem didn’t cut it for very long and we’re now well trained, and stocked to deal with any nappy rash situation!
One of the other side effects of chemotherapy is neutropenia, which is when you don’t have enough white blood cells to maintain an immune system and fight infections - and right enough, just as Rory was recovering from the immediate sickness of the chemotherapy and his white blood cells were at their lowest, Norovirus hit, and there wasn’t an anti-sickness drug strong enough to keep that down!
Again, in true Rory style, he just took it in his stride and spent a lot of time gazing into sick bowls - which actually made us realise they’re pretty boring* and so we started decorating them.
There was only so long Amy and I could hold out and as Jim alluded to earlier, soon enough Amy is quickly and violently displaying all the signs of Norovirus too! If it isn’t nasty enough having Norovirus, she was also banished from the hospital for 48 hours - the longest she’d ever spent away from Rory.
Having barely left Rory’s side since diagnosis - this was pretty traumatic news - Amy sang to Rory over FaceTime as we saw in the video, she and I met briefly outside every few hours to exchange an empty milk bottle with a full one and Uncle Jim and Aunty Lucy kept both parties sane, mediating their time between us.
Rory and I had a great time together for a couple of days but we were sure happy to see Amy 47 hours and 59 minutes after she left us.
With all of this, Rory’s next cycle was approaching fast and we still hadn’t been home yet, but on Friday 13th December the doctors came round with a plan to get us home over the weekend, popping in to do a few blood tests in preparation for the next cycle the following week.
Those few days at home were incredible, *we’d gone into hospital expecting to be there for a week and staying nearly three. But it felt like we could handle chemo. We knew what to expect, Rory took it well and bounced straight back - more happy and chatty than ever before. We felt like we really had a fighting chance of getting through this and our little unit was strong, positive and full off silliness.
We were going to be ok.
What we didn’t realise, was that everything was not going to be ok and that in fact these were the last days that Rory would ever spend at home.
Clare prefaced Matt’s explanation of how Rory’s second cycle of chemotherapy went horribly wrong and in the early hours of Boxing Day, the decision was taken to admit him to the Paediatric Intensive Care Unit. She explained that while Rory was sedated in PICU, Matt and Amy played him lots of music and read to him often, and more often than not their book of choice was A. A. Milne’s ‘The House at Pooh Corner’.
We invited up Rory’s Granny, Amanda, to share some thoughts about Rory and some words from Winnie the Pooh. This quote that she read was the last thing that we read to Rory on Saturday 11th January: “wherever they go, and whatever happens to them on the way, in that enchanted place on the top of the Forest, a little boy and his Bear will always be playing.”
Matt:
On the 17th December, we went back to hospital to start Rory’s second cycle of chemo.
Those familiar with the children’s hospital will know the lifts are great fun… for a while.*
I don’t think Rory was ever going to like Wallace and Gromit after this.
Having taken the first chemo cycle well, we were feeling pretty confident, and having been so unlucky to have had the whole Norovirus thing, our luck was surely in for a plain sailing round of chemo, timely recovery and out of hospital just in time for our first Christmas together as a family. I think the fact we’re all in this room today tells us that didn’t go to plan, on any level, and I’m afraid I get to tell the bit of the story where it all went wrong.
But it’s a part of the story where Rory’s heroism hit whole other levels and our pride for him did too. It’s a part of the story that we feel is important to tell so I hope you’ll allow us this moment.
The start of his second cycle actually went quite well, slightly better than the first in some ways. We seemed to have mastered the chemo-nappy-rash situation, and Amy and I had got into a rhythm that meant these long-term hospital stays were becoming quite bearable.
Rory was certainly taking it in his stride and seemed to know what to expect - looking at him sitting there with 5 tubes coming out of him, knowing it’s going to make him sick and he’s got a feeling of - ‘it’s no big deal Dad’ - about him.
In the run up to Christmas a pretty under the weather and fluid overloaded Rory had a stream of visitors bringing presents, playing music, making origami, giving Reiki, doing crafts. These included local sports celebrities that neither Amy or I knew of, or recognised, and of course, the main man, Santa* - who Rory didn’t think much of if we’re honest.
Slowly the room started to fill with presents as every day a few more charities came with a few more gifts, for which we knew Rory would enjoy the wrapping paper for a few seconds, before moving back to playing with some medical equipment.
As Christmas approached, so too started the wait for the all-clear blood tests that mean we can be discharged in time for our plan-B family Christmas in the forest of dean. Of course though, this waiting time comes neutropenia, which inevitably brings a temperature spike or two. A course of antibiotics is ordered and so is our NHS Christmas dinner.
On Christmas Day Rory’s room was filled with Christmas music, Rory had some milk, Amy and I had our smoked salmon and scrambled eggs for breakfast (thanks Dad), very shortly followed by our NHS Christmas Dinner* and readied for a day of visitors and festive pleasantries.
Rory however had other ideas, or at least his body did,* his fluid overload had become extreme and was more prominent in his abdomen than it had been. The other thing that we couldn’t help notice the prominence of, was the consultant, and the doctor, and Rory’s nurse who seemingly now had no other patients to look after. It was clear that they were suddenly quite worried about Rory and so were we.
His blood tests were all over the place, he was struggling to breathe due to the pressure in his abdomen and this was also affecting his ability to feed. A long string of investigation ensued to try and work out what was going on and to check the stability of some of his vital organs, this included a lot of X-rays, reviews, blood tests and an ECG trace taken by a female nurse in full elf outfit - including knitted beard!
Rory was given some help with breathing and a lot of drugs, electrolyte support and blood products while he remained under the watchful eye of the critical care nurses and host of other medical staff. Incidentally, during his stay Rory needed over 75 blood products, of various sorts including platelets, plasma, cryo and whole blood.
In a very Rory Hall way, as if he knew what was coming, he decided at this point he wanted to make sure there was something we could see before it was too late - and in the midst of all the chaos that this day brought, so did it - his first tooth!
Having cut short Amy’s family’s visit and cancelled mine we’d written Christmas off and as we settled down for the evening there was little improvement in Rory’s condition, so it’s decided that he should be moved into intensive care, so they can add more drug access lines to try and tackle the balance of drugs and blood products.
So, in the early hours of Boxing Day we nervously trundle down to intensive care with our little baby boy.
The Paediatric intensive care unit, PICU for short, is, much like Starlight, a ward that shouldn’t exist and no-one wants to visit, unlike starlight though and unsurprisingly given its name, it’s intense! You walk through a slightly darkened open ward of 20 beds each with nurse stationed beside, working an impressive array of high tech equipment surrounding what is invariably a tiny patient dwarfed by everything around them, and then at the end of this ward - was Rory’s room.
With a calm diligence a team of nurses and doctors hook Rory up to the towers of equipment while Amy and I just watch on. They manage to insert the additional access required and plan overnight to get on top of his electrolytes and diuretic him hard to try and get him to wee out the fluid, which is seemingly causing so much problem. Parents can’t sleep on PICU, and you wouldn’t get much if you tried, so Amy and I head up to Rory’s room on starlight - a room with a very obvious hole in it where a cot once was.
This was the first night of his life that Rory slept without one of us by his side.
When we went down early the next morning it was clear he was a very sick boy* (and this is the last photo we’ll show). He was dug-in and fighting, working hard to stay alive and you could see in his eyes that he desperately wanted to, that he was trying his best. Breathing, the most basic human instinct we all do every day, was suddenly the biggest challenge for our little bean and every breath felt like a tiring workout.
He was still reaching for our faces for some comfort. Feeling his hands explore my face was the most heart-jolting parental feeling I just didn’t know existed before Rory and in those moments of terrifying unknown these comforts are all we have.
It wasn’t long before the decision was made to intubate him - by putting a tube down his throat they could take over his breathing for him - this was a big step, and admission to how sick he was - you have to be very ill to be on a ventilator, and coming off them again is hard work. Someone as Ill as Rory carries a lot of risk in the procedure itself, above all of this though - he’d be sedated while on the ventilator so our interaction with our little boy would be suddenly switched off. But it was clearly necessary and after a tense hour or so while he was being intubated, Rory suddenly felt much calmer again.
In the background many tests were still being undertaken to try and work out why Rory was in this condition. After much deliberation, repeat scans and gathering of many intelligent minds, it was decided that from his chemotherapy treatment he had contracted veno-occlusive disease. VOD is a condition that clogs tiny vessels and stops an organ working correctly, or at all. This is common in certain types of therapy associated with bone marrow transplant but never on a child receiving Rory’s course of treatment.
Rory had severe VOD in his liver - it was barely functioning at all and it’s an organ that’s very hard to support and does a lot of work. All that can be done is to give drugs to help clear the VOD and support the rest of the body while it does. This included a filter to take over the work of his kidneys and try to remove the fluid, which had built up adding an additional 40% to his body weight. This filter used two drinking straw sized catheters that went down the side of Rory’s head and into his jugular vein and was the latest addition to the host of other lines and holes now piercing his tiny bloated body.
Throughout this process Amy and I have tried to grapple with the medicine and science best we can - we’ve had to be Rory’s voice, have deep conversations and make decisions on his behalf. Always one to lighten the mood, Rory’s new-found ability to say the words ‘blah blah blah’ - loudly - often underscored (and somewhat undermined) the most senior of doctors delivering the most serious of news.
As a new parent we knew we’d have to make decisions that would affect Rory, but I thought this would be what school he might go to or what colour balance bike to buy him at Christmas.
Jim mentioned HLH. It stands for Hemophagocytic Lymphohistiocytosis - anybody medical in the room who knows what that is will know that it’s not something a new parent should have to learn about, or wonder if their child is symptomatic of it, but that was it - Rory’s illness had become more complicated and deep-rooted, and the longer he relied on intensive care intervention the harder it would be to recover.
We spent 2 and half weeks in intensive care. A rollercoaster of small gains and improvements in some areas and deterioration in others.
He was trialled off the ventilator and filter for a short while - as his body was showing signs it might be able to cope, but within hours he’d deteriorated quickly again and this time further, back on the filter, and re-intubated, Amy and I knew this was turning very, very dark. He looked much sicker, weaker and less himself and our eagerness to understand meant that we could interpret his monitor screens and ventilator values, notice the drug doses and understand blood test results, we knew ourselves that his reliance on the support was increasing, considerably.
One of the nurses hatched a plan to move Rory from the cot he had been in - to a full size bed so that we could be closer to him. This took both Amy and I, 6 nurses, a doctor and a consultant peering nervously through the window while we rose him up, with all his pipes and lines still connected, like some sacred ritual, while the beds were swapped underneath him.
As soon as his skin hit the sheets Amy was straight in the bed to get close to her baby - the closest she’d been for so long. She read to him, sang to him and just lay there - soaking up some precious mother-son bonds that had been all too missing over the past few weeks. I couldn’t help but look on and see the most amazing mother that had put everything into her amazing boy still looking fondly at the hero she’d created, and as I often felt, I was so proud that I’d had some part in bringing this family together and so proud that we were able to fight such a horribly cruel disease together bravely as a unit.
We continued to take over Room 9 on PICU and Rory’s room was filled with a selection of incense, mood lighting and music - some of it used today. There was a very calm and serene mood in the room and it became a hiding place for medical staff that just wanted to come have a chat and be chilled for 10 minutes before heading back out onto the ward!
We always said we would keep fighting as long as Rory could and on the 11th of January he started telling us he couldn’t any more. His ventilator was at 100% oxygen and the pressures had doubled, the drugs supporting his heart had more than doubled and there were signs that he was bleeding from his stomach, bladder and god knows where else. On top of this his VOD was showing no signs of improving and his kidneys were barely functioning.
Later that day an X-ray showed that air had escaped from his lungs and collected around his heart. The options for draining this were too risky, and it was unlikely to be an isolated incident.
We’d come to the point where we had run out of options to support him more, and the risk to him having a traumatic arrest of some kind was incredibly prominent. He was in there waving his hands around going ‘guys, I can’t do this anymore.’
We had some of the hardest, darkest and most horrific conversations which I hope no parent has to endure, and decided we needed to make the one decision for Rory that he needed us to the most.
With the help of Rory’s top PICU team, we went back to make him comfortable and spend a bit more time with him, before at around 10pm, just as the fox had told him it was time to sleep every night, we played this song and he fell beautifully, peacefully asleep.
Amy:
TO RORY
My child.
My heart.
There we were, expecting unexpectedly.
What can I possibly give you?
I can give you 9 months of warmth and stability.
Your father’s arms - that voice which you had heard so often, yet never met.
I can give you stories, imagination,
A voice,
A cry, a laugh.
I can give you nourishment, unlimited.
I can show you my world, follow you round every corner as you lead the way.
I can give you my heart.
I can give you pure love, unquantifiable.
I can give you life, another 230 days of it.
But I cannot stop that life from being taken away.
And what have you given me?
Gifts immeasurable.
Your wide-eyed wisdom and your fearless charm
The confidence to trust in those who love without condition
The knowledge that if I lift my arms in need, those I love will pick me up
Your smile, even in the face of the utmost adversity.
You have taught me more than I can ever teach
That to piece together a full, broken heart is so much more rewarding an endeavour than to conceal an empty one.
That life is for living and loving,
For laughing whenever you can
And crying whenever you need to.
I could dwell on the unfathomable loss,
The indescribable pain.
The injustice of this world and the fragility of health
On all the things I’ll never show you,
On all the things I could not give you.
Or I could dwell on every tiny gift,
Every time we made you laugh,
Every ounce of strength you showed us,
Every second that your eyes held mine.
Every night in which I lay awake and watched you breathing.
Your hands on my face,
Your dimples.
The immense pride I have felt for no other.
Without you I have nothing.
Without you I have everything.
And even as your dust begins to settle
Dust to dust
I know that with my breath I’ll pick you up, spin you around, make you dance.
You’ll catch in every shaft of light, on leaves of plants,
On my eyelashes, those loose ones that I wished upon in vain to save your life.
On tabletops, on window sills, on everything I touch.
I’ll find you everywhere
I’ll keep you constant
I’ll love you always.
After the poem, we shared a moment of silence, and then we played Karine Polwart’s The Whole of the Moon.
Matt:
I’ve really struggled to know what to write for this bit, or how on earth to follow Amy’s beautiful poem!
Our world is broken and I just have no way of quantifying the effect of losing Rory on our lives.
I thought I knew how to deal with grief, but the utterly cavernous void that Rory leaves behind means that any talk about “dealing with it” can merely be grappling our way up the sides and I don’t imagine we ever will.
It was only 10 months before Rory’s birth that I spoke at my Mum’s funeral in front of a crowd much like this and joked flippantly about being a parent - little did we all know what was to come and little did I know that I wanted to be a parent.
I was utterly terrified about being a parent, I didn’t feel even vaguely prepared, I had absolutely no idea what to do, but of all the many, many things Rory taught me, it was that I want to be a parent A LOT.
And he helped me through it. The expert in the room. Held my hand and showed me the ropes, reassured me when I looked at the criss-cross arrangement of buttons on his baby grow and made the whole journey the most incredibly overwhelmingly rewarding time - and on top of that he taught me that I want to be a parent to Amy’s children. Because if we’re going to celebrate the short life of this amazing child, we should take a moment at least to appreciate the amazing woman that made him, entirely nourished him, gave him all the patience and love in the world and made him the truly awesome human we’ve been celebrating today.
Thank you Rory for being the most amazing little Bean and bringing us so, so much love and joy - you did everything that was ever asked of you and I’m just so sorry the world let you down.
I am so proud of Rory, so proud of Amy, so proud of myself and I am so overwhelmingly proud to be Rory’s Dad - but I was only just getting started.
Amy:
There are too many words to fit in here about everything Rory gifted us, but I hope, in some small way, that the poem captured at least some of that magnitude.
Nothing will ever fill the void that Rory has left in our lives, nor would we want it to. He has made the most powerful imprint on our hearts, which will stay with us forever and he has been the single, most wonderful thing I have ever, and will ever, do with my life. I am more proud of him than I will ever be of myself. I knew, of course, that whatever our doubts, Matt would be the most natural, brilliant father, but Rory has only cemented that certainty and I could not be more proud of him either. My boys*. Our arms feel painfully empty, and Rory has taught us, as Matt said, that we want, more than anything else in the world, to be parents*. And if you’d told us that 18 months ago, we would have laughed hysterically and run for the hills.
Matt:
For all the devastation and sorrow, Rory has also opened our eyes to an extreme, wonderful display of humanity. Just up the hill over there is a phenomenal building full of phenomenal people, who have welcomed us with open arms, learnt everything they can about Rory and his family, tried everything they possibly could to save his life and made moments of despair that bit easier - even making us smile along the way. A building full of people we wish we’d never had to meet, but are so glad we did.
And outside of that building we have found that right here in front of us is a similarly phenomenal support network of friends and family. To everyone who has sent us a supportive text, dropped off a microwaveable meal, folded our laundry or simply wished some good vibes our way, thank you - we are so lucky to have you. And thank you for being here today. We are overwhelmed. And all because of Rory. He has fundamentally changed the way we look at the world.
Amy:
A dear friend, after I had told him that Rory had passed away, messaged me these words, “He was loved his whole life and that is rare”. I truly believe there could not have been more love in Rory’s life - if love could heal, he would be the healthiest child on the planet. From the moment he entered this world, Rory was surrounded by an aura of unconditional love from so many people, beyond just his immediate family. And that is the most important thing.
If you take anything away from today, please keep hold of that love in Rory’s name. Wrap your own families and friends in it - let them know that it’s there.
We invited everyone to take away any of the hundreds of photographs of Rory that the photo team had hung up. We really wanted people to take them home, enjoy them and remember him with happiness.
We played the end of Follow the Heron, and Clare finished the celebration by thanking everyone for coming and inviting them to go forth and raise a glass to Rory.
And if you’ve read this all the way through, that’s what you should do now. Find a drink – boozy or not – and toast our little hero, Rory Hall.
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