Shifting the Goalposts

It all began unremarkably. A couple of small flecks of a weird rash, and a quick trip to A&E. Just due diligence in the expectation that they’d tell me that everything was fine, that my youngest son was well. Perhaps something to do with teething, or because of the cold he had the other day…

But this rash was peculiar. Little bleeds under his skin that were quickly spreading. Every time his skin was touched, a bruise would mark its trace. I held him close to me and sang into his ear to calm his cries. Doctors pinned needles into his skin, frantically looking for veins to take blood samples and to fit a cannula. Every needle left a huge black bruise. By the time we moved into our small isolation room, his body was covered in failed attempts.

We’ve all heard the stories. Parents scrutinise their children’s rashes, ever vigilant for those tell-tale signs of those big, bad diseases. When I saw that bruising, when his platelet results came back so low – my mind flicked through those scary illnesses. I couldn’t shake that word I dreaded to hear: leukaemia.

That night, I set up my bed next to his wrought iron cot, and he was woken hourly for observations. After three nights, they reassured me: this was a self-limiting, autoimmune reaction to a virus. We could be discharged. On the morning of our scheduled discharge, final medications were administered, a blood count was taken, and the cannula that they had so determinedly rooted around to fit, was removed. I packed our things and we waited, gazing hopefully through the small window in the door to our little room.

But as the hours passed, it became apparent that going home was not going to be an option. When the doctor told us about the drop in his white blood cells, the pit of my stomach ached. Later that evening, a paediatric oncologist and a sympathetic-looking nurse called us into the playroom with the bright lights. A box of tissues had been placed on the table. They told us that his white blood cells had depleted alarmingly. Leukaemia has to start from somewhere, and once it kicks off, significant changes can be visible in days. They suspected that it had first attacked his platelets and now it was attacking his white blood cells. Haematologists and oncologists across two hospitals and in Great Ormond Street were all in agreement: leukemic blast cells were visible in his blood.

As human beings, we are built to adapt. By now, my son was able to sleep through his observations. But now, his sleep needed to be interrupted urgently. Anaesthetists had to go back on the hunt for accessible veins before sending us off to Great Ormond Street to complete the cancer diagnosis.

Before waking him, I held him. His head rested on my shoulder, blissfully asleep and unaware of the discussions we’d just had. Of the tears, and the dread. Unaware of the road we faced, of the treatment he’d have to bear, of the pain, the duration, the terrifying unknown. All I could feel as I held him was the steady beat of his heart against my own, and I told myself to always remember how that feels. He came from me, he is a part of me. When he was born, I already knew him.

Unsuccessful needle puncture after unsuccessful needle puncture – the last remaining vein that was visible, that hadn’t been tampered with, bruised or broken, was in his head. As the panicked thoughts of what his little body would have to go through threatened to engulf me, I swore to myself that as I couldn’t take his physical pain from him, I would instead take all the anxieties that he doesn’t yet have the ability to process, and I would make them mine. I swore that my kids would never see hospitals as places that house sickness and disease, but as places where patients go to get better.

Meanwhile, despite being so poorly, despite the pain, the needles, the medication, the enforced broken sleep – my kid still found moments to smile, to laugh, and to learn new things, and to show us those new things so proudly. I have learned that our children are our biggest teachers.

While my pallid son slept in the back of the ambulance on the way to Great Ormond Street, I thought about how one’s goalposts shift in the light of bad news. Of how, until you run out of options, there’s always a positive that can be found and clung to. I thought about the gratitude I felt that his young age meant that he would have time to undergo treatment and still make his first day of school. I thought about what the anguish must be like for a parent having to rationalise the procedures of cancer treatment to a four year old, who needs things to be explained, but who is still too young to really understand. I thought about what it must be like for an older child undergoing cancer treatment, who has the capacity to fathom their own mortality. I could but imagine these scenarios – unfortunately, there are people who know.

Arriving at Great Ormond Street, I was hit by the mallet of reality. Elephant Ward was our new ‘home’. I must now come to terms with the phrase: my child has cancer. As I felt I might keel over from my unyielding thoughts, we were greeted by nurses who smiled, who blew bubbles for my son to delight in, who administered transfusions, medications and cups of tea, who held our hands through the nightmare of this dawning reality. A Hickman line was  fit into my son’s jugular vein. The doctors were very clear – they all knew where this diagnosis was heading, and we needed to fully understand that. Chemotherapy would start within days. They just needed to take a bone marrow aspirate; final piece in the diagnostic puzzle to determine his type of leukaemia. They would tell us the results in the morning. For now, time to rest.

It is hard not to elevate NHS workers to demigod status. I will never know the name of the anaesthetist who worked with a simple ultrasound machine to fit a needle into a millimetre of vein, so that the protruding cannula from his head could be removed. And I’ll never forget the kind eyes of the masked surgeon who asked me if I was OK, as my son was swept unconscious from my arms and onto the operating table. All the doctors we came across have since met lots more sick children. The imprint they leave on their patients’ lives is colossal. This government’s use of the NHS as a Brexit bartering tool, the way in which it underfunds, and cuts, and flirts with the idea of privatisation is a national disgrace. The NHS is the best thing we’ve got. 

That night, as I listened to the sound of my baby sleeping, so many questions overwhelmed me. How can I be a good mother to both my children, in the light of my youngest son’s illness? How will I take care of them both between home and hospital? Will my marriage survive this? The anxiety of what his treatment plan would entail hit me with such a visceral pain that it took my breath away.

So many clichés felt so true. I would have given him every ounce of my own blood. I’d have taken all that was malignant from his body and put it into mine. I remembered being a kid and seeing my dad walking alone down the aisle of a small chapel, on a cold November morning, carrying my baby brother’s body in a tiny white coffin in his arms. The pain on the face of a parent who had lost their child. Spending any time thinking about my own child dying could not be an option. So I let the oncologist’s words infiltrate the darkest rooms of my mind: “We expect children to get through this”. I told myself that those words would be my song until the day he’d be free from this. All I had to arm myself with was positivity and pragmatism.

The following morning the consultant came in with a nurse by her side. I told myself to breathe, that we’d already heard the worst, that this was simply to find out how to overcome this monster. In a measured tone, the doctor relayed the events that had brought us to this point.

Then, she smiled.

The bone marrow results had come back negative. To their utter surprise, there was no malignancy. No cancer. He is a healthy child. She told us that she’d had a happy morning. She’d never before given such good news so far down the line of a leukaemia diagnosis as this.

Hours later we moved out of our room, with a result that we would not have dared to dream.

As cruel coincidence would have it, I knew the family who moved into our room just days after we left. An ex-colleague of mine was facing the devastation of coming back to Great Ormond Street with her son after his cancer had returned. Hers is not my story to tell. But the gratitude and shock of the lifeline we were given is inextricably mixed with the sad and unanswerable question of why? Why did we get lucky? Why can’t all children be told that it is going to be ok? I stood at the edge and stared down at the unknown, at a nightmare that families are living through every single day.

To us adults, life must be seen as nothing short of a privilege. But a child should be entitled to every day of their future.

September is Childhood Cancer Awareness Month. So, from one mother who has no idea of what it feels like to stand by and support their child with cancer, this is a plea to anyone who reads this to please donate to this cause.

Children with Cancer UK works without any government funding. There is still much to be done when it comes to diagnosing childhood cancers, in finding kinder treatments and more cures, in raising awareness and in raising funds to support the families of children with cancer.

You can also spread the word by putting gold ribbons on your social media photos and by sharing their TV appeal. You also still have time to apply for a box of ribbons to sell in your workplace.

Do it for the children who are staring cancer square in the eyes for the first time. Do it for the ones who are preparing to face it all over again. And do it in memory of those who are missed by their families each and every day. 

Thank you x

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