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Zac’s story

Zac’s story

A toddler’s 3½ year battle for his own existence

Leanne and Garth knew something was wrong – for three consecutive nights, their middle child, Zachary (3½), woke in the early hours of the morning screaming with pain and vomiting, each night seemingly worse than the last. Zac had a long-standing history of vomiting that doctors could not diagnose, but this was different. The family GP contacted a paediatrician who immediately referred Zac for a CT scan without even seeing him. The results of that scan changed family life forever; it was the start of a 3½-year battle for Zac’s future.

30 September, 2009

Taken just two weeks before Zac was diagnosed

The family had only been home for 15 minutes when they received a call: doctors had found something; how quickly could Zac get to hospital? Leanne started to say, “Well, firstly I’ve got to feed my baby daughter and then pick up my eldest son from school …” when the doctor interrupted: “You’ve got to come now! We’ve found a brain tumour and it’s large.”

A good friend rushed to care for their other children, grandparents were notified, and Leanne, Garth and Zac left for hospital where management was waiting for them. Leanne found it overwhelming: usually there’s an admissions process – you don’t have a welcoming committee!

Leanne and Garth spent the next few hours learning the devastating extent of Zachary’s condition: “We’ve found a brain tumour: it is very dramatic. It’s one of the largest we’ve seen in Queensland in anyone.” The scans were confronting: the tumour had caused significant damage – it had blocked the pathway for fluid to drain from his ventricles and it had even eroded areas of Zac’s skull. It all seemed so surreal, as they watched their son jumping around, laughing and having fun. The neurosurgeon was puzzled: “I don’t know how Zachary is as well as he is! At the very least he should have had several serious strokes.” A leading Queensland ophthalmologist later told them he was surprised that Zachary didn’t have any permanent damage to his optic nerves.

About to undergo his first craniotomy, Zac gives mum Leanne a kiss before surgery

Zac and his parents, all gowned up and ready for surgery

20 October 2009 — following his first surgery, Zac in ICU

Leanne recalled one particular afternoon, a year earlier, when two Bible verses caught her attention. Psalm 108:13 NKJV: Through God we will do valiantly, for it is He who shall tread down our enemies and Isaiah 54:17 NKJV: No weapon formed against you shall prosper. She knew from these verses there was an enemy, but chose to trust that God was faithful to His Word and put her faith in Him. Leanne had no idea the enemy would take the form of a brain tumour. Standing in the hospital room, listening to the doctors’ amazement, Leanne realised that God had indeed been faithful, keeping the tumour from destroying their son, and beyond that, He was promising a good outcome. The medical prognosis might be negative, but God’s word told them otherwise and they were going to trust God to bring Zac through.

Normally, they would have operated immediately; however, the tumour had caused such extensive damage to Zac’s brain that surgery was delayed for five days to reduce the swelling through medication. Garth and Leanne asked their church, friends and family to pray, and were overwhelmed by their support. Meals were delivered daily to their home and the hospital. Churches throughout Australia and abroad were faithfully praying.

30 October 2009

Zachary’s head bundle comes off to reveal the extent of his wounds

October 2009 – the day for surgery came. After a seven-hour surgery the neurosurgeon, with his scrubs covered in Zac’s blood, came out to advise them that although he had removed a lot of tumour, he’d had to stop, as things became very dangerous the deeper he went due to profuse bleeding. Zac’s brain had also collapsed, he’d lost most of his cerebro-spinal fluid (CSF) and he’d already received several blood transfusions.

Zachary was transferred to ICU – seeing their son semi-conscious, with tubes and drains connected into his skull was horrifying. As the hours passed, the family were relieved that he could swallow, blink, talk, move and remember – they knew God had worked miracles! The next few weeks became a daily battle for Zac’s life. There were many emergencies: MRIs, life-threatening seizures, adverse reactions to medications and emergency surgeries. In the midst of all this, broken and exhausted, Leanne and Garth chose to put their trust in God and believe that Zachary had a future and a hope.

1 November 2009 — Zachary immobilised due to an external ventricular drain (EVD) — God bless the Wii!!

The pathology of the tumour mystified the medical fraternity; there was no name for what it was or protocol on how to treat it. It was unique. Leanne and Garth were strongly advised to begin chemotherapy even though there was no evidence the tumour would respond. Seeking God’s wisdom, they chose not to pursue chemotherapy and had to withstand criticism and pressure from the oncologist. A year later, that same doctor admitted: “In hindsight it was absolutely the right decision”. Their monitoring of the remaining tumour had shown that it would not have responded to chemotherapy.

Zachary had the very best doctors tasked with his care and received great favour from all the nursing staff, but it wasn’t enough. Garth and Leanne constantly saw the medical fraternity pushed to their limits with Zac’s case: “We stood on every promise of God for our son”, recalls Leanne – “Jeremiah 29:11 in particular.”

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

Jeremiah 29:11 (NLT)

October 2011: Zachary underwent further surgery in an attempt to remove the remaining tumour. Initial reports indicated the surgery had been successful; however, scans later revealed that none of the tumour had actually been removed. Everyone was devastated. Pathologists were perplexed: what doctors had removed was something that had never been seen before – a custom-built support for the remaining brain. This was miraculous!

October 2011 — Zachary recovering from his second craniotomy

October 2011 — Zac’s first day home after his second craniotomy, hugging his much loved dog Samson

Zac’s neurosurgeon recognised that he couldn’t remove the remaining tumour; his case had been discussed with some of the top neurosurgeons and oncologists in Australia, and abroad, and no one could help. Garth and Leanne were encouraged to investigate two options – one in Melbourne, the other in Sydney. The latest MRI scan showed that the tumour had grown; although God had prepared them for this, the stakes had just gone up, significantly! After an unsuccessful trip to Melbourne, the only option left to explore was with the Sydney neurosurgeon.

On hearing the name of the Sydney neurosurgeon Leanne was stunned. She recalled a day, two years earlier, when she was asking God for wisdom – something she had to do everyday. That same morning she read about a Sydney neurosurgeon who had saved a patient after all others had given up. Later that day a friend called: “I just needed to ring you about a surgeon down in Sydney … .” It was the same doctor! That night at a ladies’ meeting at church – this doctor’s name was mentioned again. Three times in one day; Leanne knew it wasn’t a coincidence and prayed about what to do. The answer came very clearly: “Nothing! Write it down but do nothing,” so that’s what she did … she wrote the events of the day down and waited.

19 April, 2012 — Zachary and his Nan, Christine, leaving hospital a few days after his final craniotomy

4 August, 2012 — learning to ride a bike, 4 months after his final surgery

July 2014 — Zac loves to run in the nearby park
Photo: Meryl McCay

They arrived at the Sydney neurosurgeon’s rooms just in time to see the doctor hand over eight long white boxes to excited theatre staff, then Zac’s name was called. The doctor looked through the scans: “I think I can get this out.” Leanne challenged him, reminding him of the risks they faced, but the doctor said, “Did you see those white boxes? They contain instrumentation that I have purposefully developed to control bleeding during surgery in a case specifically like Zachary’s. How about surgery tomorrow!” Garth and Leanne couldn’t believe their ears! This neurosurgeon had committed to what was an idea years ago, to fund and design through to completion the much-needed instrumentation, only to have the instrumentation engineered in Germany and arrive on Australian soil 6:30am that very morning where he personally took delivery of it at Sydney airport. Garth and Leanne were in awe of God’s timing and faithfulness. They further marvelled when they later learnt the surgeon had also developed a new hybrid theatre with robotic technology that would also prove integral to removing Zachary’s remaining tumour.

April 2011 — Zachary caught a fish, 2 days after his 5th birthday

July 2014 — the family today — left to right: Abigail, Zachary, Leanne, Joshua, Garth
Photo: Meryl McCay

Philippians 1:28 NLT was God’s promise to them: Do not be intimidated in any way by your enemies for this will be a sign to them that they will be destroyed, but that you will be saved by God Himself. A week later, Leanne carried Zac into theatre – a theatre unlike any she had seen before! Then, she and Garth, joined by Leanne’s mother Christine, began to pray – it was an intense time. Leanne suddenly felt peace after 5½ hours and knew that the battle had been won. Finally, 7½ hours later, staff came and insisted: “You’ve got to come into Recovery, quickly.” There was Zac, sitting up in bed, eating an iceblock and yelling at the staff because he hated the flavour! Garth, Leanne and Christine stood with tears in their eyes and joy in their hearts, full of gratitude for such an incredible outcome.

Medical staff explained that the surgery had been far more complex than initially thought; at many points during the surgery they weren’t sure how to proceed, but then a solution would suddenly present itself.

Zac was moved from Recovery to ICU – not because he needed it, but because it was protocol – and was released within days. He ran out of the hospital, singing and dancing. Leanne says, “It was surreal!” MRI scans had confirmed that Zac was completely tumour free! God is faithful! He had kept his promises to them; they had experienced many miracles – some supernatural, others where He had used the gifts and talents He had given to people. Garth and Leanne give glory to God for them all.

October 2009 — MRI scan showing the large tumour and complications with fluid build-up

October 2013 — MRI scan shows where the tumour used to be

That was April, 2012. Zachary is now 8 and enjoying life. He has missed quite a bit of school over the years, and although ready for Year 2 this year, Leanne felt the Lord ask her to teach him. She knew the Lord was faithful and so enrolled him in distance education this year. Doctors say that Zac has a brain injury, from the number and extent of his surgeries, but God has given her a promise:

Where once there were thorns, cypress trees will grow.
Where nettles grew, myrtles will sprout up.
These events will bring great honour to the Lord’s name;
they will be an everlasting sign of his power and love.

Isaiah 55:13 (NLT) 

July 2014 — Zachary today — testimony to God’s power and faithfulness

Photo: Meryl McCay

Photos: © Leanne and Garth Spenceley

Update

Zachary is now 12 and lives with his family in Brisbane, Queensland. An avid supporter of his much-loved Brisbane Broncos, he also enjoys new adventures and spending quality time with his family. And, like most boys his age, Zachary loves playing on his PS4!

Since Zachary’s final surgery in 2012, he’s had a lot to catch up on. Distance education has played a pivotal role in allowing him to make make progress in bridging the gap in his development and education. Initially a number of years behind his peers, he has been making steady progress.

Zachary still has some medical challenges ahead, and although he and his family faithfully continue the journey through the aftermath of adversity, Zac’s days are now filled with the joy of living life. In his own words, “I get to play now, and have fun!”

About The Author

Meryl McCay

Meryl is a seasoned Information Professional with over 25 years’ experience. Currently based in Canberra, her day job involves working on large government websites, using content management systems such as Drupal and Squiz Matrix, and administering SharePoint-based intranets. Possessing a wide range of ICT skills, including certification as a Microsoft Office Master, she also develops websites for small business and the not-for-profit sector on the WordPress platform.

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