Inside story battle of the innocent

Jake Smith is battling for his life. Not yet six months old he’s suffering from a rare form of brain cancer, undergone horrific surgery, and is enduring enough chemo to kill an adult. Through this living hell, Jake smiles.

Damian McCarney
In Lavey

“The doctor came in, and another nurse,” recalls Andrea Smith. “I saw them carrying chairs as they came in, and that was it - I actually said it to them: ‘This isn’t good news. I don’t like that you are bringing chairs in to tell me what’s wrong.’
Just hours earlier Andrea and her husband Padraic had brought their newborn baby Jake into Cavan General to have a cyst on his head checked. It was December 23; the visit was simply to put their minds at rest over Christmas. Until the medics arrived with the chairs they had been panicking over last minute shopping. Now, seated facing the doctor, they had genuine cause for panic. There was “a large mass” on Jake’s brain and an ambulance was on its way to rush him to Temple Street. The heartbroken Smiths couldn’t even go with their baby, who by this stage was lying in an incubator. With the medical team in the ambulance there simply was no room.
“He’s lying on the bed cooing and kicking,” says Andrea recalling how incredulous this grim diagnosis seemed, given Jake’s healthy appearance.
Five months later it’s the Celt that’s taking the seat - this time in the Smith’s livingroom - and experiencing an echo of the shock the couple felt. Throughout much of the interview, Jake sits in his rocker and smiles, garbles and charms the Celt. If you can only focus on his inquisitive, ocean blue eyes, or his busy legs hinting he could become a future asset to Lavey GFC then he’s the picture of health.
Sadly there’s also signs of his illness: a shunt burrows a wriggling route under his tightened scalp, his baby hair is reduced to a mere wisp by chemo. A plastic feeding tube snakes from his tiny nose, is taped to his cherubic cheek and hooks into a mechanical device plonked beside him that occasionallyt beeps and whirs.
Distraught and shocked, when the Smiths made their own way up to Temple Street they endured more grim news. An MRI on Christmas Eve led the neurosurgical consultant to conclude the mass was a tumour. Fortunately it was contained within his brain, and hadn’t spread to his spine; which was a real threat.
When shown MRI scans the Smiths mistakenly thought they were looking at one of the hemispheres of Jake’s brain.
“We were saying, ‘Where’s the tumour?’ The tumour compressed that half of his brain, squashed it over,” said Andrea.
A medic estimated that it was “about the size of a man’s fist”.

On Christmas Eve they were permitted to bring their six-week-old Jake home. The couple put on a brave face for their other children Aoibhinn (7) and Joseph (5), and Andrea’s niece Shauna (14) who also lives with them.

“We came home in a daze,” says Andrea. “We had to do Christmas as normal with the other two little kiddies, and keep Christmas upbeat. We did manage to get through the day; we had Christmas dinner, the kids went to bed Christmas night and we fell apart.
“It seemed to be as soon as he was diagnosed he went downhill. Christmas day he was very uncomfortable, his head started to swell noticeably. We had arranged to have him baptised on the 27th when we had heard initially, but we found the local priest and had him baptised on St Stephen’s Day - we were that worried.”

Surgery

The first of what was expected to be a series of surgeries followed on December 30. Glioblastoma multiforme (GBM) is the particular form of cancer Jake has; while not uncommon for adults suffering brain cancer, it is highly unusual in children. Only one other child in Ireland has GBM. Given that such tumours typically have “tentacles” extending into the brain, the consultant warned that the chances of removing it entirely were “slim”.
At last something went their way: “It had quite a smooth edge and was encapsulated within this little sac. So when he opened the skull, it kind of pushed itself out,” says Andrea. “We just started sobbing, we couldn’t believe it.”
A photo taken in the aftermath of surgery displays an enormous track of puckered red stitches tracing the line of a cranial plate on Jake’s tiny head. “It’s like a seam you would see on a sliotar,” Padraic notes, still amazed. The scar tissue has faded to pink now, and given time and hair growth, may no longer be visible. A more significant side effect of the operation has been seizures, caused by blood seeping into his cerebral spinal fluid.
“He goes vacant. His eyes turn to the right and look up. This arm’s rigid,” Andrea says, extending her right arm, “and the wrist turns in. And then his leg goes rigid and the ankle.
“Anything over a minute with a seizure is bad, five minutes is really bad. He was in one seizure for over an hour. For it to go on that long could seriously damage the brain.”
On January 11 one such prolonged seizure caused Jake to stop breathing and CPR was needed to revive him.
“I knew that was one image I would never get out of my head. They did manage to bring him around after two rounds of compressions,” said Andrea. The photo of Jake recovering (above right), sprawled out on blankets with a network of tubes and cables winding from his tiny body remains a harrowing reminder. 

Chemo
Unsightly it may be, but the shunt on Jake’s crown - which regulates the pressure in his head - appears to have brought the seizures under control.
The Smiths’ ‘journey’ started in Cavan on December 23, and the first leg came to a close with his discharge from Temple Street on January 23. Since then chemo has dominated life.
“This is one of the fastest growing and aggressive cancers that there is,” says Andrea. “Although they got the tumour, they didn’t get the multi cells that are causing this, that’s why they have to give the chemo, and it is so intensive.”
“It wasn’t a matter of if he would get another tumour, but when,” adds Padraic.
Jake has had five out of 16 sessions of chemo in St John’s Ward, Crumlin Hospital. The rest will take place in late 2015. The location of Jake’s tumour means he needs a potent cocktail of different types of chemo. “Kids can take way higher doses of chemo than an adult, so a dose of chemo that would kill an adult can be given to a child,” says Andrea.
Children may be able to endure more chemo, but they still suffer side effects. It can irrevocably damage vital organs; and it can even cause leukaemia. For Luke chemo undermines his immune system. He’s suffered mouth ulcers and sores down his throat from one chemo drug. Another caused vocal chord paralysis. As a result he receives nil by mouth, and is instead fed via the nose tube. However, this keeps his sensitive stomach partially open, bringing on frequent bouts of vomiting. When it enters his windpipe it causes lung infections.Hopefully, by the time of reading this he will have a peg fitted to his stomach.
Due to the strength of chemo used, it actually remains hazardous if Jake expels it.
“For days afterwards we have to wear gloves to change his nappy, when he gets sick you have to wash your hand or your clothes straight away,” said Padraic. “It’s poisonous.”

Bad dream

The Celt wonders how they come to terms with Jake having such a rare form of cancer?
“I suppose you don’t. I’m still waiting to wake up for someone to tell me it’s a bad dream,” Andrea replies. “This is your beautiful new baby. You are supposed to be wondering what clothes to buy him and who’s he going to look like and what’s he going to be when he grows up, which sibling is he going to take after. You shouldn’t be worrying when’s his next seizure? Is his tumour growing back? Is he going to be able to have children, because of the chemotherapy?”
“Every so often you  think about all the normal stuff you should be doing,” adds Padraic. “You see the other two kids running outside playing. You wonder if he’s going to be able to do that.”
Andrea adds: “To get him to playschool would be a huge milestone, and that’s not from a neurological point of view, that’s from a survival point of view.
“The life expectancy rate wouldn’t be great - it would be about 10% in adults. The fact that his is congenital, which means he probably had it in utero, gives him a slightly better chance - and there are stories on the Internet of children who have had the same cancer with similar size tumours and they are seven years of age now, going to school, interacting, which does give us great hope. But again we are aware that he is fighting against negative odds.”
“Even at the end of it,” Andrea continues, “if his treatment goes well, we’ll never have a normal life. Ever. But we have a different life now and we just have to make it good. That said, our kids, they will always have a sick brother, because chemotherapy at this age, you don’t come out unscathed from it.”
“At the end of the day, our lives have changed to a degree that we can’t even fathom yet.”