September is Childhood Cancer Awareness Month and Jess and her partner Tim are blogging and speaking out in the media about their son Luke’s cancer journey to raise awareness of our Better Care for Young Cancer patients campaign.
Here in her own words, Jess shares their story.
In September 2013 our two-year-old son Luke complained that it hurt when he peed. We took him to our GP and they said it was probably thrush or an infection and he was given antibiotics. After he peed out a lump my partner Tim and I went back, but there wasn’t enough to test, and the GP didn’t think it was serious enough to refer him on at that point.
The pain went away, but it came back a month later, and our GP referred him to a consultant. But the appointment was four whole weeks away, which seemed like an eternity to us, and things got worse.
It got to the point to where he couldn’t empty his bladder, and was straining until he was red in the face, veins popping out of his neck and screaming in agony on and off all day and all night. Me and my partner Tim were at our wits end, as our younger son Euan was only a few months old, and we ended up going to A&E a number of times to try and get help for Luke sooner.
But at A&E the doctors we saw seemed really dismissive and acted like we were wasting their time. They thought it was constipation and they questioned his diet. Then they said it was a urine infection, and gave us more antibiotics. Me and Tim didn’t feel listened to.
There was a government campaign going on at the time on the TV about blood in pee and poo and how even ‘if it was only just one time’ that you should get help. We began to suspect that Luke might have cancer. But the doctors we saw said that cancer in children is really rare, that it was really unlikely.
By this point Luke was pooing 20 to 30 times a day when trying to empty his bladder. On our last visit to A&E with Luke, all that one doctor seemed concerned about was his red bum (caused by the straining) and she implied that Tim and I weren’t caring for him properly or changing his nappies enough.
That’s when we refused to leave until we got a follow up appointment.
I stood in the middle of A&E and said: “look he’s in massive pain - and you need to listen to me…what is going to happen when these antibiotics don’t work? Where do I go then?”
We got a follow-up appointment and when they saw him passing urine they booked an ultra sound for later that day. During the ultrasound even we could see the absolutely enormous cancerous tumour on the screen, which had been growing in Luke’s bladder the whole time.
We had the most horrendous time with the treatment. He went through so much and watching your child be so upset and in pain is heart-breaking. We got a huge amount of help from the people at CLIC Sargent, a support charity for children and young people with cancer and their families too. They helped us get through it.
Luke’s one of the lucky ones. He’s been in remission for one year and is back to being his bouncing bubbly self.
September is Childhood Cancer Awareness Month and we're working with CLIC Sargent to raise awareness of childhood cancers and supporting their new campaign to improve care for young cancer patients.
Right now they are investigating what is causing delays in diagnosing cancer in children and young people and how the NHS can make sure cancer is spotted at the earliest opportunity.
I think that if just one of the health professionals we saw had taken us more seriously or had specialist training that Luke’s cancer could have been caught earlier.
I’ve heard about much longer delays in diagnosis from other parents we’ve met during Luke’s treatment. And new research from CLIC Sargent found that almost a third of GPs polled said that not being aware of the symptoms of childhood cancer was one of their top three barriers to identifying cancer, which is incredibly worrying.
We try not to look back too much now as it makes us too angry but many GPs themselves have told CLIC Sargent that they want more training and awareness regarding the rarer cancers. They might only see one case in their whole careers. But just because it's rare, doesn't mean it won't happen and they need to know what to look for.