Fighter Jake set to celebrate ninth birthday with family

CALL More supports for families needed - Mum

Little Jake Smith will “always have cancer” explains his mum Andrea. His heartbroken family were informed of that fact in the early stages of his diagnosis. “We were informed we’d be lucky to get him to his first birthday. But he’s a real little fighter.”

Jake turns nine next month, November 20, and though the prognosis will at some stage prove tragic, his family live each day with “positivity”, thankful for every moment together.

However, speaking ahead of International Brain Tumour Awareness Week (October 28 to November 4), Andrea says there are very few supports available in the community for families of children living with, and recovering from brain tumours.

Jake was just four weeks old when doctors first discovered a grade four brain tumour, the size of a grown man’s fist, on Christmas Eve 2016, and every year until now has been a map of operations or interventions and unfortunate medical complications.

His medical file, says Andrea, is now spilling over into its fourth large folder.

Most recently it documents how Jake endured near fatal organ failure caused by years of oncology treatment on his fragile body. However he recovered to make his First Holy Communion last summer.

“His poor little body from being on continuous oncology medication, he just went into acute organ failure. He had liver and kidney failure. He was transported by ambulance to Crumlin, this was the middle to tail end of Covid, and we were told they’d have to contact England to see about a possible transplant. But we only had a six-hour window.

“The family were informed, his siblings told we wouldn’t be coming home from hospital. That was tough.”

Jake was put on life support in the hospital’s ICU, and by some manner of miracle Andrea says: “His own little body healed itself. Stubborn or tenacious would be words to describe him health wise. He’s not going until he’s ready to go.”

Jake attends Cootehill’s Holy Family School and loves nothing more than going on walks in Virginia forest or playing with his siblings. Next month, along with celebrating his birthday, Jake will undergo another CT scan to check for any potentially abnormal tumour growth. The scans are done twice a year.

Andrea and husband Padraic are among those sharing their family’s story ahead of International Brain Tumour Awareness Week, speaking openly about how their son’s diagnosis has affected both them and their family dramatically.

After the discovery of a small, soft cranial lump, Jake underwent a number of surgeries, including two craniotomies and surgeries for an external ventricular brain drain and shunt.

He was also treated with chemotherapy and oral inhibitor medication.

There is, shares Andrea, nothing more tragic than seeing a once occupied hospital bed at Crumlin hospital being dressed down and lockers cleared out knowing the worst outcome has just occurred.

“There have been kids who’ve come in with Jake, diagnosed around same time, been cured and gone home but have come back again because the cancer has recurred.

“Kids are given a favourable outcome and everything just goes against them, and the parents get that message no one wants to hear, that ‘active treatment is no longer an option’. It’s sad.”

Andrea says her family too have had to come to terms with the dread of “knowing” that day awaits them further down the road.

“Jake was diagnosed at four weeks and it’s just followed him around for so long. We’re just so aware of things, aware he’ll never get married.”

The cancer, a rare and aggressive form of glioblastoma multiforme, has grown near to the centre of Jake’s brain, close to the top of his spinal column. While doctors have operated as best they can, to probe further risks damaging a critical area of the brain and impacting “what makes Jake Jake”.

It is often isolating being the family of a child so ill. “I’m not saying anyone has a normal family life or childhood but it does change the family unit where his older siblings [Aoibhín (15) and Joseph (13)] are aware we may need to stop everything at the drop of a hat because Jake needs to go to hospital, and we need to be in with him. We always have to make sure there is a back up there.”

A lack of community services - speech and language therapy, occupational therapy and physiotherapy - doesn’t help either, and this is something Andrea believes needs to change.

On the flip side Andrea says she and her family live for the good moments even more.

This summer the Smiths enjoyed a family holiday in Dunfanahy in North Donegal.

“You realise very quickly what’s important in life being the parent of a sick child, and what some people may think are big problems really aren’t at all. It simplifies life. We don’t know where we’re going to be next month or next year. You tend to very much live in the moment.

“It can be great, but it means you can never look too far ahead. But we are so thankful for the time we have together.”