Shifting the Goalposts
It all began unremarkably. A couple of small flecks of a weird rash, 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 in himself; 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. As I held him close to me and sang into his ear to calm his screams, doctors pinned needles into his skin, frantically looking for veins to take blood 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 an autoimmune reaction to a virus. 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 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, but I wasn’t surprised. Later that evening, a paediatric oncologist and a sympathetic-looking nurse called us into the playroom with bright lights. A box of tissues had been placed on the table.
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 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, including when nurses had to shine a torch in his eyes every hour, after he split his eyelid open falling into bars of his cot. But now, his sleep needed to be interrupted urgently – anaesthetists needed to go back on the hunt for accessible veins.
Before waking him, I held him, with his head rested on my shoulder, blissfully asleep and unaware of the discussions we’d just had – of the tears, the dread in my mind; unaware of the road we faced, of the treatment he’d have to bear, of the pain, the duration, the 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 overwhelm 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. My job as their mother is to shield both my children – because they process their understanding of the world through the expressions on my face. I swore that there would be no tears in front of them – there would only ever be joy. My three year old will never see hospitals as places that house sickness and disease, but as places where patients go to get better.
People have told me I showed strength – but none of it came from me; it all came from him. Despite the pain, the needles, the medication, the enforced broken sleep – he still smiled, and laughed, and learned new things, and showed us those new things so proudly. I have learned that our children are our biggest teachers.
As I watched my pallid son sleep in the back of the ambulance on the way to Great Ormond Street Hospital, I thought about how one’s goalposts shift in the light of bad news. Of how there’s always a positive that needs to be found and clung to. I thought about the gratitude I felt that his young age means he has the time to undergo treatment and still make it to 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 three 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 – there are people who know.
When we arrived at Great Ormond Street, I was hit by the mallet of reality – Elephant Ward is our new ‘home’; I must 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.
It is so hard not to elevate these people 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.
The reality that many of the nurses who provide us all with such diligent care, are being forced out of their jobs by relentless government cuts is a national disgrace. Overworked doctors struggle with mental health issues and suicide rates rank high in comparison to other professional groups. They suffer because of what they are exposed to, they suffer because of the stoicism required to conduct their roles, they suffer because of the elevated superhuman status we give them. All the doctors we came across have since met lots more sick children, they have since had more victories, and more ‘failures’. The imprint they leave on their patients’ lives is colossal.
I was disgusted the day that Brexit campaigners used the NHS as a bartering tool in their lying propaganda, it disgusts me even more now. To all those who talk about the ‘benefits’ of privatising the NHS, about ‘casually’ paying a tenner to see your GP – please, stop and think about what that really means. Because cancer does not discriminate – and when illness does, it’s against those with the least to spare. And to James Cleverly, who this week said there have been no NHS cuts: STOP LYING.
They decided to fit a Hickman line 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. The Hickman line was going in because they expected to start chemotherapy within days. They would also take a bone marrow aspirate: the final piece in the diagnostic puzzle to determine his type of leukaemia.
That night, as I listened to his sound of him sleeping, I thought about so many potential outcomes. About how I needed to be a mother to both my children, irrespective of my youngest son’s illness. I wondered how the hell I would be able to do that. I thought about how my eldest son needed to have parents who didn’t just take shifts between home and hospital – who would both be able to be there for him at the same time. I thought about how many marriages and relationships struggle to survive a test like this. I questioned how I would cope. I wondered how single parents and families who lack support networks are able to face such an ordeal.
I tried to anticipate what his treatment plan would entail, but the anxiety of what he would have to go through was 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 blood, taken all that was malignant from his body and put it into mine. The fear prompted a memory I’d hidden, of my dad walking alone down the aisle of a small chapel, carrying my baby brother’s body in a tiny white coffin, on a cold November morning. My 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 get to ring the End of Treatment Bell that sits by the nurses’ desk. I decided that all I had to arm myself with was positivity and pragmatism.
I don’t know the answers to any of my questions that night, because this did not happen to me…
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, 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. She then revealed that the bone marrow results had come back negative – that, to their complete surprise, there is no malignancy, nor is he any more likely to develop blood cancer than any other healthy child. She told us she’d had a happy morning – they so very rarely get to give such good news so far down the line of a leukaemia diagnosis.
So we moved out of our room, with a result that we would not have dared to dream. A few days later, a family moved into the room we’d vacated. As cruel coincidence would have it, the mother is a woman I used to work with. Her son got to ring the bell, he’d gone into remission. But he has since relapsed. Her’s is not my story to tell, but the gratitude and shock – and the feeling that I will never take life for granted again feels inextricably mixed with the sad and unanswerable question of why? Why do some get lucky? Why can’t all children be told that it is going to be ok?
Some people have asked whether I’m angry at having been put through an avoidable situation. But how could I possibly be angry? I stood at the edge and stared down at the unknown, at a nightmare that families are living through every day. My family got a free pass. To us adults, life must be seen as nothing short of a privilege. 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 still have time to apply for a box of ribbons to sell in your workplace. Do it for the children who are looking cancer square in the eyes, for the ones whose fight is resuming, for those whose battles were too hard to overcome.
Thank you x
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