From the dust

I don’t really know what to write here. My last post was over a year ago, and a lot has happened. Most people reading this will know all about it, but telling the story helps.

On Tuesday 30 December 2025, Timothy died.

Even as I type those words, my brain kicks immediately into action, wrapping me in cotton wool, to protect me from feeling them. Maybe it’s too early to write about him. But I have a desire to create, to use words to communicate something of my experience, our experience as a family, even while I remain on leave from work and my usual ways of expressing truth, belief and beauty – pastoral conversations and Sunday services – are currently beyond my reach.

A gentle warning – this post could upset you, and if you don’t need that right now just move on, it’s okay.

Just over a year ago we heard the scary news that Timothy’s leukaemia had relapsed. It had happened before, several times, over the nine years since his first diagnosis. But there was always a resolution, an answer to prayer, that saw him move into remission – ie, no more nasties in his blood or bone marrow – and then gradual recovery of health and strength. He experienced a near-catastrophic pulmonary embolism at the end of December 2023, which really unsettled him and brought great anxiety to his daily life for much of 2024, so he was determined to not let a wee thing like another relapse derail his life again in 2025, although it did spell the end of his academic journey – A-levels were not his top priority!

He needed regular transfusions of blood and platelets in the Spring of 2025, initially weekly but sometimes twice a week as his bone marrow continued to fail. An extreme anaphylactic reaction to one particular platelets transfusion was an eventful interlude to these routine clinic appointments. Gradually the blast count started to rise, and there were no more options left. We tried going back to the treatment he’d been receiving pre-relapse, and were encouraged (/astonished) when it was effective again. The blast count reduced, the transfusions stopped, and he was back in remission.

Timothy spent the next six months getting out and about as much as possible, visiting friends, attending events, participating in Exodus Lisburn programmes, as well as working his way through Netflix series and playing FC25. He passed his driving test and got a wee red car through Motability, putting over 8000 miles on the clock. He auditioned for and was accepted into the IMYC Events Band, singing at Soul Mates and Autumn Soul. His newly-acquired adult status led him to taking control of most aspects of his life, quickly becoming an independent young man who made some mistakes along the way, learned from them, resisted parental control or wisdom but was quick to apologise, and always came home at night to tell us he loved us. Timothy’s friends were his life, but his family was his launching-pad, and times with his brothers at Castlewellan Holiday Week, the Big Church Festival, daily dinners, watching movies and Marvel at home, and visits to grandparents, uncles, aunties and cousins were deeply significant to him.

Everything was going so well. I think in all our heads, and particularly in his, Timothy’s story was going to be one of medical challenges frequently overcome, of new treatments and eventually a cure becoming available, one step at a time. So at the end of November, it was a scary evening when one side of his body became numb for a while, leading to an overnight trip to the Emergency Department with Kathryn to rule out a stroke. But I didn’t panic, wasn’t it just another episode of ‘all’s okay in the end’? However, the week that followed saw headaches develop, a growing sensitivity to light and a quieter Timothy resting in the living room in the dark.

When the pain increased and became persistent it was time to return to the hospital with Kathryn, and later he and I became residents of the Children’s Cancer Unit once more. His symptoms worsened, tests were undertaken and after a few days the crushing news arrived that the leukaemia had found its way into his Central Nervous System, with blast cells in his spinal fluid and lesions on his brain. His eyes were under pressure and in danger. Our prayer movement kicked into gear again, and my calm-loving mind hoped all would be well. Lumbar punctures and injections of chemotherapy directly into his spinal fluid brought some relief and, we rejoiced, cleared the blast cells to near zero! The symptoms pulled back a bit. We got home.

But the headaches continued. His appetite was suppressed. His coordination was a bit off. Energy was low. Nausea was overwhelming at times. Though fear niggled at us, we hoped it was side effects of the chemo and the several new drugs that were introduced to help counteract one thing or another. Timothy heard a voice say, “the verse of the day” in the middle of the night when he was awake and frightened; the Bible app ‘verse of the day’ was Luke 2:8-12 in The Message version, the shepherds’ dramatic encounter with the angel of the Lord announcing Jesus’ birth. I prayed it over him. Christmas Eve brought vomiting and a return to the ward. We woke on Christmas morning to an unexpected Santa sack in the hospital room but he wasn’t especially excited. I went home to preach on that passage:

“You might feel terrified at the moment, but God’s message is, “Don’t be afraid. There is good news. Jesus is here.” In the middle of our dark and desperate moments, Jesus is here. In our pain, Jesus is here. In our grief and loss, Jesus is here. In our pride, Jesus is here. In our helplessness and despair, Jesus is here. A Saviour has been born, who is Messiah and Master… Jesus is here.”

In truth, I was preaching to myself. Timothy’s condition was unnerving and upsetting and I needed to be reminded of God’s presence in the middle of it. He got out of the ward for a few hours on Christmas night and Boxing Day, and then home overnight on the 27th. That evening, the six of us sat together in the tree-lit living room, the dog and cat present too, watching a Christmas movie, eating snacks, the fire blazing. However, the next morning Timothy was awoken by vomiting again and we returned quickly to the ward.

That Sunday was different. His strength was spent, the room was quiet as he slept during the day. He needed to be lifted from bed to wheelchair. Kathryn came in for the evening. When she left, he said his usual, “Night night, love you, see you in the morning” – his last words to her. He was fasting the next morning for the routine Monday lumbar puncture (in paediatrics done under general anaesthetic), not that he noticed the lack of food. We went together up to theatres, and when it was time for the procedure I held his hand as the gas and air began – unlike the normal routine, there was no singing to see how far through a song he could get before he succumbed – and he looked into my eyes as he fell asleep with the usual trust that we’d see each other again shortly.

I went back to the ward, had a late lunch, watched some TV, wrote in my journal. The wait seemed longer than usual. And then some news – Timothy wasn’t waking from his anaesthetic, and the team was becoming concerned. I should call Kathryn to come immediately. He was brought to have a CT scan and then to PICU (Paediatric Intensive Care Unit). I sent a brief, worried message to our prayer warriors. And then the worst conversation of our lives. The lesions on his brain had grown dramatically, and deep. The pressure in his head had become too much and all brain activity had stopped. He was still intubated post-procedure, as in, a small pump was keeping him breathing. We could spend as much time as we wanted with him, but he wasn’t going to wake up.

And everything within me said, “It can’t be true. This is the last great test. We will pray, and there will be a miracle, and Timothy will wake up.” And my gut said, “This is different. He’s gone.”

I called our parents, our brother and sisters, our closest friends, our minister. Over the hours that followed, they came to say goodbye, to hold his hand, to whisper, “In the name of Jesus, rise up and walk!” Kathryn and I sat with him through the wee hours of the night, telling him of our love, our remorse, assuring him of God’s presence, commanding even then his resurrection. But this time, the prayer was not answered the way we wanted. Several different people in the days to come would tell us that they were woken that night to pray for Timothy and us, and that they had images of warrior angels standing guard over him, ready to take him home.

Tuesday morning, Timothy was brought back to the Cancer ward, to a room specially prepared on the east side of the unit. The sun streamed through the window onto his face. We invited the staff team to join us, and we stood together in silence. I cut the ribbon holding his breathing tube in place, just as I had cut his umbilical cord nearly nineteen years earlier. A short while later, he was at rest, calm, peaceful.

…

On Tuesday 30 December 2025, Timothy died.

…

I don’t know why he had to deal with so many challenges in his life, why God brought him through so much and prolonged his life for so long, but for it to end now. Having said that, even at the end God was kind. It wasn’t the routine procedure that caused his death, it was the trauma that happened in his head, and if he hadn’t been under anaesthetic he would have left us very suddenly and without those beautiful moments in PICU and on the ward. The nurses and doctors who were with us gave him the most dignified and compassionate treatment. And Timothy didn’t die in the dark, which he was scared of, but in glorious sunlight.

As I write, it’s Ash Wednesday – the beginning of Lent, a time for lament and solemn reflection. This year, I bring Jesus my broken heart, and remember that death is an inescapable part of life, and sit in the tension of an unwanted ending with the hope of resurrection, and experience the reality of the beatitude as our loving, wide community surrounds us: blessed are those who mourn, for they will be comforted.

From the dust we came
To the dust we shall return
God everlasting, age unto age the same
We are a moment, then like a breath we fade

From the dust we came
To the dust we shall return
God everlasting, we are cut down as grass
Seeds in the morning, then by the night we pass

O Lord have mercy
O Lord have mercy
O Lord have mercy

_{Written by Paul Zach, Kate Bluett; Performed by Paul Zach and The Sing Team}