July 2019 started as any other month. Lukas was growing up as a happy and super cheeky three-year-old, going to preschool, playing with all his friends and visiting his nanny and poppy’s house. But suddenly things dramatically changed and Lukas became very unwell; his temperatures were uncontrollable and he was unable to walk. He was in the emergency department in absolute agony. His family felt totally helpless and anxiously waited for a diagnosis. It was late on a Friday afternoon, when they were told that their precious boy had neuroblastoma.

There had been no preceding signs or symptoms that were concerning. There had been a few mild abdominal pains and low-grade fevers which were disregarded by doctors and put down to simple childhood viral infections. Unbeknownst at this time, a 3cm x 2.5cm tumour was growing on Lukas’ right adrenal gland. 

'We were left speechless at first; my first thought was to get up, take Lukas and just run away from this hospital because it couldn’t be true. Then realisation hit and suddenly I had of a lot of questions.' said Lukas' mum, Madison.

The treatment journey begins 

Lukas in treatment Lukas underwent a bone marrow biopsy, MIBG scan (nuclear medicine scan) and a CT scan of his chest, abdomen and pelvis. Whilst there were no other signs of other tumours except the large one on his right adrenal gland, the bone marrow biopsy result meant Lukas was classified as having Stage 4 high risk neuroblastoma. 

Lukas started treatments, known as Rapid COJEC protocol, nearly immediately. Twenty-four hours after his first chemotherapy, Lukas' fever eased and he started to walk again. After 40 days and halfway through his initial treatment, there was no trace of neuroblastoma in his bone marrow test and very little in his bone which provided some relief to Lukas’ family. 

Over the next 12 months, Lukas underwent gruelling, invasive treatment. One hospital admission included a stem cell harvest, where he endured multiple daily injections to stimulate his stem cells needed for his upcoming bone marrow transplant. Then, with the help of a very skilled surgeon, Lukas underwent keyhole surgery to remove the tumour. One month later, he was readmitted for his all-important stem cell transplant, so that stem cells could engraft into his bone marrow. 

A day of “rebirth” 

Transplant was frightening. We took things day by day, sometimes even second by second, hovering over our phones waiting for updates, results and treatment plans that would change, to manage arising symptoms like oral and intestinal mucositis, nausea and vomiting to name a few. 

Many days passed waiting for Lukas’ stem cells to start returning. During this time Lukas was kept alive thanks to multiple infusions of red blood cells, platelets, electrolytes, fluids and antibiotics.

Then on 6 November 2019, Lukas’ family were told the good news they’d been waiting for: “It’s happened! He is engrafting … he’s made his own cells."

"To say that the entire family was jumping for joy really is a complete understatement."

After he was discharged home, Lukas’ bloods still needed monitoring and he needed some additional transfusions until his body was able to maintain his own count. Lukas started to get his appetite back and his nasal-gastric tube was removed. Lukas’ energy started to return.  

In February 2020, his family received the best news possible; that Lukas was in remission. However, Lukas still needed to complete the rest of his treatment to ensure the best chance of cure, so he then endured weeks of radiation therapy as well as painful immunotherapy to complete his treatment. This coincided with the start of the covid-19 pandemic, bringing extra challenges on visitation restrictions and accommodation availability. 

Eventually, just shy of twelve months since his initial diagnosis in July 2019, warrior Lukas completed his treatment. 

What a day this was! Whilst there was no bell ringing ceremony, the cheer squad was very loud and clear in celebrating an amazing effort from Lukas, and his mum and dad.Lukas is now in remission but continues to have checkup scans 

Lukas with little brother“We are so pleased to report that our warrior remains in complete remission. His hair has grown back and he has just received his uniform to start primary school next year. He loves playing with his cousins but best of all, he became the proud big brother of Levi on 01 December 2020.” 

We will be forever indebted to Randwick Children’s Hospital for the management of our warrior throughout his treatment. We are very aware of risks moving forward and that we need to remain highly vigilant. We are so proud of how Lukas has managed to forge his way through each treatment goal. This is why we call you our warrior. You are a warrior Lukas. We are all so proud of you. We love you.Lukas' Aunty Neil  

"Research is so important for any childhood cancer and especially neuroblastoma. With more research we hope to bring up our survival rates, have fewer harsher treatments and less invasive diagnosis testing," said Lukas' mum Madison  

We're sharing Lukas' story as part of our Neuroblastoma Awareness Week.

You can add your well wishes to the Love for Lukas team fundraising at Run2Cure – support their hope for a cure today. 

Support Love for Lukas here

 Lukas with his dad