Remembering diagnosis day

Isaac’s end of treatment

It was with much excitement that we celebrated the year anniversary of Isaac’s end of treatment as we looked back on all we did to celebrate last year and marvelled at how far Isaac had come following a full year of no drugs. He rang the End of Treatment bell and was presented with his end of treatment bead to add as the final one to his long chain of Beads of Courage. As a family of runners we used our running throughout Isaac’s journey through treatment as a way of raising money for charities such as Children with Cancer UK who had been such an amazing support to us. So the end of treatment was no different with a massive group of us all taking part in the Rat Race Dirty Weekend including Isaac and a load of friends. I also ran the London 10k the week of Isaac ringing the bell dressed in the Children with Cancer UK End of Treatment Bell fancy dress costume (I can’t think of any better way to run than dressed as the bell on the week he rang it!).

Tinged with sadness

The anniversary of end of treatment was also tinged with sadness though. You can’t help but think of how different our end of treatment celebrations would have been if Isaac had been due to finish treatment this year rather than last. For all those families who’ve had their once in a lifetime wishes cancelled or postponed indefinitely. For those who’ve also looked ahead for over two years to the day they get to ring that bell having to wait and find ways to do it differently. The shielding that would’ve been inevitable and restrictive. But that also leads to thinking about the diagnosis day. We have had over 100 days of lockdown. Every single day in the UK twelve children and young people are diagnosed with cancer. Every single day of lockdown that statistic will remain the same, although some will have also had their diagnosis delayed impacting on the treatment now available. And it’s not just twelve children and young people. Each has parents, grandparents, siblings, relatives, friends, schools etc. That diagnosis day is so hard as it is for the whole community around each child, but to hear those words in this last few months I can’t imagine. It really is unimaginable that in lockdown alone that will have been the reality for more than 1,200 families. So we are full of joy and celebrate. But we also cry out in prayer. For each of those twelve families every single day. For those only just starting their journey. For those whose journey doesn’t end how ours has. For those in fear or despair.

Remembering diagnosis day

Earlier in the year I also wrote about the first out of treatment anniversary of diagnosis day and it seemed fitting to share those words in light of my reflections about how diagnosis day must’ve been all the more harrowing in these times… Isaac had suffered with a pain in his back but carried on life as normally as he could until he spiked a fever and became increasingly ill on 22nd January 2016, when he was admitted to hospital. Simon had to drop me and Isaac at the entrance where I got him a wheelchair as by this stage he was now unable to walk. We didn’t know what PDU (Paediatric Day Unit) was but its name to us suggested a day clinic for all children. But as we walked through those doors that was not what we found. There were posters and leaflets everywhere about childhood cancer and photos of children who had lost their hair. I instantly felt defensive about why they had sent us here when that was only the remotest of possibilities. The fear and a bit of anger burned up inside as I resolved that Isaac would not be one of those children, we would not be part of this world.

Explaining what they had found

But as the evening drew in, the results came back and Dr Amos took us into a private room to explain what they had found. Isaac had acute lymphoblastic leukaemia. The brief overview Dr Amos gave us covered how long treatment would take overall over 3 years, but focused in more detail on the first stage that would start now and be for a month. I’m a person of detail though, I like the full facts, I want to know it as it is, I want the big picture and I want it in all its detail, not just digestible portions of information along the way. The lawyer inside me burst out and commenced a cross-examination into the entirety of treatment, what it would involve, what results were, long term side effects, including nailing down their thoughts were of what Isaac would and wouldn’t be able to do physically in terms of sport throughout each stage, knowing I had a crazy-mad sportsman for a son who’d grieved lack of sport for just 2 weeks of illness. Then came the moment they came with us to Isaac’s bedside as we explained to him what was wrong and what they were going to do to treat him.

Life would not be the same

Our lives as we knew it were turned upside down. As you hear those words all priorities change. Life would not be the same. We were heartbroken, starting a process of grieving for what he would miss, what he would have to endure and the impact such an illness would have on our family life and future plans, on his little brother who looked up to him and was his best friend, on school life and how it might impact his plans for the future. There was also the desperate longing for him to not be ‘the child who has cancer’, for us to not be ‘the family of the boy with cancer’, or the object of others’ pity. But also there was hope in the midst of that devastation. Our faith gave us hope for the future, knowing we will face storms in life, we may walk through the valley of the shadow of death, but we will never be alone. The doctors gave us hope. They were confident, they were clear that there was a treatment plan and we go through and follow it. So that place of not knowing what was to wrong was now replaced with a knowledge of what we were dealing with, leading to an urgency in us to just get on and get started with it. There was to be a little more waiting though as treatment would start on the Thursday to fit with the cycles of that first phase. In life we don’t know what will come. There are dark nights of the soul. There are times of great joy and celebration. Some days are so long and incredibly painful but taking one moment at a time, breathing in and breathing out, we know that as with creation, seasons come and they go, spring bursts through from winter. And that was our diagnosis day.