Lil Jake battles on against the odds
At the Smith family home, there’s a plaque on the living room wall that reads ‘Home, where you are always loved’. Home is where Jake Smith is always loved, especially in his hour of need.
He is a little boy suffering from a rare form of brain cancer, whose story we featured in the Celt last year.
A year on and Andrea and Padraic Smith’s little miracle is still fighting valiantly for his survival and undergoing another round of oral Chemotherapy. “Only 10% of people born with this survive longer than a year or two. It’s basically a death sentence,” says mum Andrea.
But continuing to defy the odds, Jake, now aged 18 months, has grown a shiny blond head of hair to cover the scars of multiple surgeries. He is sitting by the TV watching cartoons when I arrive.
“He’s in good form but he’s about six months behind in his development,” mum Andrea informs me. An intensive round of chemotherapy in late 2015 may have been the result of this. He also only learned to sit up by himself in recent days.
Jake’s resilience is what gets everyone through each day. “It does give you hope, considering he’s had four brain surgeries and chemotherapy that he can still be a little baby,” says Andrea emotionally.
Jake’s siblings - Aobhinn (8) and Joseph (6) - have coped remarkably well with everything that has happened over the last year and play with their little brother every morning before they go to school. Yet at such a young age, they know that their brother could die from this dreaded illness. “When you try to explain mortality to them and that somebody younger than them could actually die, it’s scary for them,” confesses Andrea.
Ordinary occurrences in family lives can cause real problems for the Smiths as a result of Jake’s vulnerability.
For example, a child in Joseph’s school recently contracted chicken pox and a note was sent home with each pupil. The chance of Joseph getting chicken pox are almost guaranteed. With that in mind, he now has to stay away from Jake for a fortnight (the incubation period for the pox) so he doesn’t contract it. “Joseph is pretty much in quarantine. We’re trying to keep them separate as much as possible but it’s hard to do in a small house,” Andrea tells me.
Worst nightmare
Christmas of 2014 was the Smiths’ worst nightmare, being told of Jake’s diagnosis merely hours before his first Yule arrived.
Last December though, things were more peaceful. “It was a great celebration and we could appreciate the little things like opening presents and Santa Claus coming,” recalls Andrea.
People often take these occasions for granted. However, the Smiths know that every Christmas and afterwards with Jake is important. “With this, you can only go day by day. The likes of last Christmas, it makes it more special, all the more important when he’s in good form,” adds Padraic.
More recently, Aoibhinn made her First Communion, and the milestone was important for all the family.
“Jake was too sick to make it to the church,” Andrea said. Aoibhinn had been worrying an awful lot about whether Jake would be well enough to attend her big day. He was in the family photo at home after though, which filled her with joy.
Andrea and Padraic know that Jake’s future is uncertain. “One of the hardest things I’ve learned is walking down the corridors in Crumlin, knowing that the chemo is going to make him sick again. If he doesn’t get it, he’ll be worse off,” Pádraic reveals.
He explains that the treatment is slowing down the growth of the brain tumour.
Jake’s home at the moment receiving the latest round of oral chemotherapy. Over the next few days, his parents say he will weaken again as the chemo takes effect on his already purged body.
“The treatment he’s on seems to be keeping it at bay for the minute so they’re happy to continue with two more rounds of chemo and then an MRI at the end of June,” outlines Padraic of the treatment plan.
The Smiths are also hoping that if Jake lives long enough he may be able to take part in a phase two treatment trial, but this is still a long way off.
He’s battling though and will continue to do so with the support of his loving family.