It is September, Childhood Cancer Awareness month & not for the first time I am reflecting.
I am reflecting on whether there was any other way I could or should have known that Dylan had cancer. I look back at photos up to three & a half months before his diagnosis & I now know that despite there being absolutely nothing to “see”, he did in fact have cancer as early as September 2016.
There are no specific signs & any signs that there are do not always present themselves all at the same time. Children have ailments all of the time, particularly when they first start school. It is far more common for those ailments to be due to some sort of regular childhood illness. Cancer is most certainly not the first, second, third or maybe even fourth thing to spring to mind.
There was a life before cancer, much of it is a distant memory in part because remembering what life was like before is very painful. However, much of it is extremely vivid & that is because the amazing personality that was Dylan before cancer is still with us & still being the same amazing personality.
Dylan was born ten days early & just three days shy of my thirty eighth birthday. The most beautiful early gift anyone could ever wish for.
He was in a real rush to come into this world & at 9pm on the 2nd of November 2010 he literally flew into life weighing 8lbs exactly.
As a newborn he was solid, extremely beautiful & completely unafraid. He puked a lot; he really did puke incessantly but despite this he didn’t lose an ounce in weight & very quickly made his way to the 98th percentile which is where he remains (he’s very tall & has an enormous head)!
As a baby he was simply charming; a natural, relaxed happy go lucky smiler who would cheerfully be passed from one person to the next without batting an eyelid; he was very sociable.
Through toddlerhood he demonstrated precocious linguistic skills, learnt to read & write very early & was mindfully fearless; very little riled him.
He was so different to his brother at the same age, Ruari was born with a hard hat & clipboard; a natural risk assessor.
Dylan on the other hand was one of those kids who was unafraid to walk away from you in the supermarket prompting coded security messages & putting staff on high alert for a two year old in a black caped Batman T shirt (yes, I lost my child in Tesco Extra…it never dawned on me that I could ever be that mother but I had clearly underestimated Dylan’s independence having been so used to Ruari’s cautiousness). It turned out that he just wanted a Hello Kitty magazine, which once he had found he calmly made his way back to the checkout where I eventually found him holding the hand of one of the staff who had been sent out to find him.
Little Dylan Williams; time to go home in the park would often lead to him flatly refusing to come with me & despite bribes, threats & promises I would gradually walk away (foolishly believing that he’d follow me…Ruari would have gone into panic mode if I’d walked two metres from him). I’d get so far away from him because he would just turn on his heel & walk in the opposite direction, determined that he was going back to the playground for one last go on the slide.
Fast forward to his first day at school, by 7am he was standing by the front door in his brand new uniform desperate to get to class & completely unafraid of the unknown. By comparison Ruari had to be peeled off me for weeks when he first started school, they are such different personalities. Dylan barely looked back when we dropped him off, in fact I had to call him back to give him a kiss & tell him that I’d be back later to pick him up…he almost looked disappointed!
However every single day I collected him from school he was the kid with overjoyed enthusiasm, the kid that ran to me like he hadn’t seen me for a month…every single day! That same reaction is something that both of my boys shared & makes me grin from ear to ear just thinking about it!
Reception year was a blast for Dylan, he excelled. His personality suited school life, the social interaction, the love for learning; he was high on life. His teachers always remarked on how incredibly polite he was & how happy he always seemed & that he skipped everywhere.
Year One started, Dylan was five & it quickly became apparent that the boy I described above wasn’t quite feeling it. He had complained of feeling tired, was uncharacteristically tearful & kept asking for me. Then one day he vomited in front of everyone as we were all standing waiting for our children. It was fairly dramatic & I remember catching most of it in my hands & then being lead inside with him to sit down. Of course I kept him off school, believing it to be some sort of new term bug. He wasn’t sick again over the 48 hour isolation period so I sent him back to school. He was sick again a week or so later & we repeated the 48 hour isolation period.
He started to complain of backache, but he was still very mobile, eating like a horse, sleeping well & seemed perfectly “ok”. I took him to the doctor but there was nothing that seemed amiss & we put the sporadic complaints of backache down to a pulled muscle from the climbing frame.
By this point we are in October & Dylan’s still not feeling “right”, he’s had about ten days off school. One morning I notice that Dylan’s cheek is ever so slightly swollen, so subtle that you’d hardly notice it.
As the days continue the swelling seems to increase. I take him to the surgery & see a locum doctor (our usual GP was abroad). The locum tells me it’s mumps. A couple of days later I take Dylan to the dentist because mumps without any pain or a fever seems highly unlikely to me. The dentist suggests a possible abscess or perhaps blocked saliva ducts. Dylan is still going to school & apart from this swollen cheek is behaving pretty normally.
Then one night in November he wakes up crying, his lips are swollen & painful so we rush him to A&E. We are eventually told by the maxillofacial specialist that he has had an allergic reaction to something & so is prescribed steroids & antihistamines, the swelling completely disappears & he seems as right as rain.
In the meantime my GP is back from her travels, she orders a blood test for Dylan & at the same time makes a referral appointment for him at the dental hospital. His cheek stays down for a week or so but slowly starts to swell again, another course of steroids & antihistamines & he’s back in the game.
We are now mid December, his cheek is swollen again. The referral appointment comes around at 9am on Friday 16th December (the last day of the school term) & that marks the day where reflecting on the past becomes a painful reminder of life before cancer.
My reflections make me ask myself over & over again at which point should I have known, which bit of all of that should have made me think “cancer”? As an accumulation perhaps these symptoms are easier to understand. I know that it would appear that childhood cancer figures have risen over the last few decades & I know that is due to an improvement in diagnoses; childhood cancer was not even a recognised illness a few decades ago.
One thing I have realised is that there is no specific childhood cancer test; it is not a case of checking certain parts of your body as with some adult cancers; it is not a case of getting regular health checks to ensure that everything is working as it should be as with some adult cancers; it is not a case of living a healthier lifestyle as it is with some adult cancers; it is not a case of catching it in the nick of time because there is a checklist of symptoms with which we should all educate ourselves as with some adult cancers. I am by no means making a sweeping statement about adult cancers; I know that would be ridiculous as sadly cancer is in itself an anomaly; more often than not there is absolutely no rhyme or reason.
I reflect upon the fact that childhood cancers are currently notoriously difficult to diagnose purely because the carriers are children & as I said before, the normal range of potential childhood illnesses is endless.
I reflect upon why anyone would think cancer before they think sickness bug; why anyone would think cancer before they think abscess. When the carrier is in the main still skipping, eating, sleeping, not losing weight, riding his bike & generally being a typical six year old, why would anyone think cancer at all?
I reflect upon the fact that cancer is the number one killer disease of children (way over & above the combined total of all other major childhood diseases) & then I reflect upon why anyone would not think cancer.
I reflect upon the fact that despite cancer being the number one killer disease of children, in total childhood cancer receives less than four percent of funding for all cancers.
I reflect upon the fact that that just does not make the slightest bit of sense.
I reflect upon Dylan’s past, his captivating personality & the fact that he does not deserve any of this, none of these children do. Surely they deserve more than four percent, you would think that if it was your child wouldn’t you?
I reflect upon the fact that nothing was ever going to stop Dylan from getting cancer; I accept that just six years into his chance at life cancer was sadly his fate.
I reflect upon the difference between a stage I diagnosis in September compared to the stage IV diagnosis he finally received in the middle of December. I reflect upon the fact that he nearly died right in front of me & I reflect upon the possible impact a stage IV diagnosis has on his future & his chances of survival.
I reflect upon the fact that there is no way I should have known he had cancer; but perhaps with a bit more funding, a more open & accepting approach that cancer is taking more children than any other disease combined, perhaps with increased awareness & a better line of action towards diagnosis then I reflect upon the fact that perhaps I could have known.
There is a lot to reflect upon.