This is a condensed version about our first-born son Luke, from the time he was born in August of 1996, to just prior to his diagnosis in 1997…he was our ‘Thursday’s Child.’
Luke James Barreau arrived late on the 08/08/1996, but he didn’t come into this world without a fight. After an intensive labor, and a bit of elbow grease, my female obstetrician needed help as the position of Luke’s shoulders were preventing him from making a safe exit. So as luck would have it another capable obstetrician was on hand, a big brute of a man. After pushing Luke back, and turning him (as well as almost sending me through the roof in the process) he finally arrived into this world, or more importantly “our world.”
Luke met his milestones, and continued growing and doing the normal things babies did. He fed, he slept and he pooped! He did have a good head start in life, as he weighed 9 lb.
Months later he became difficult to settle, and would cry, so we employed “control crying.” I am not sure that it really helped long-term, more so in the short-term. Several trips to the GP, and Phenergan was prescribed to help him settle at night.
Little did we know, or more so I, as a mum realize, that Luke was sweating at night and that was a clue to his impending illness…
Around the end of September of the following year (1997) my mother in law was celebrating her birthday, and she made a comment that Luke looked quite jaundiced! He also had quite a pot belly, like the African children that are facing poverty and severely malnourished. I suppose we thought that was normal, we had been back to the GP prior, and they said Luke was “teething” and did not seem to be too concerned.
So my husband and my mother took Luke into see our local GP the following morning. After an examination, he noticed that yes, Luke was indeed jaundiced, and his large, protruding stomach was a concern!
An X-Ray was ordered at the local hospital, and my husband and mother took Luke down there that afternoon, as I was working. Another follow-up appointment was made with the GP that afternoon for the results…it was certainly not what we expected!
The X-Ray showed an enlarged liver, quite possibly hepatitis, and so without a proper diagnosis, we were referred onto the Women’s and Children’s Hospital here in Adelaide, SA for further investigation.
We arrived at the hospital late that afternoon, and went immediately to the Emergency Dept, where we were ushered through by a nurse to take Luke’s obs. Questions were asked about Luke’s symptoms, and we told them what we could.
Some time later, a blood test was required and so my husband David carried Luke into a treatment room, where several nurses were standing…I waited outside.Luke was placed on the bed, where the nurses were preparing to take his blood.
David needed to restrain Luke from wriggling and thrashing about, and it wasn’t long before his screams echoed down the corridor. I peered through the door, and caught a glimpse of David and the nurses holding Luke down. Our poor little boy was terrified and so were we! As they made their way out of the room, Luke was bathed in sweat, and tears were streaming down his face, and also ours.
From there we were taken to a room, where a ward clerk spoke to us and mentioned having to spend the night in hospital, possibly a week or two while tests were carried out. I spent that first night with Luke; we were sent to a ward for contagious diseases, as it was initially thought he may have contracted hepatitis.
It was a noisy place, nurses talking and laughing loudly, babies were crying…not the sort of place you get a good night’s sleep. Luke eventually settled, apart from the nurse coming in to check his obs and administer Panadol and check his blood pressure.
The next day we were greeted with more nurses, doctors, interns and medical students who came and went. Luke was the centre of attention, as his stomach was examined repeatedly by the doctors, all eager to give their medical opinion based on his symptoms.
By mid-morning most of our family had assembled in our room, gathered around Luke’s cot, waiting for a verdict! Two male doctors entered the room, and greeted us. One was quite old, but exuded authority, the other perhaps in his early forties. They introduced themselves and proceeded to talk about Luke’s condition and their initial diagnosis.
It was highly likely our son had a tumour, they were not sure exactly as a biopsy would need to be performed, but they had mentioned two types of cancer: wilm’s tumour or neuroblastoma.
Once the biopsy was carried out they could then give us a more informed diagnosis, along with the blood test, so until then we had to sit tight! I was in shock, and so was my husband. Tears streamed down our faces.
The biopsy was scheduled for the next day, and so many calls were made to family and friends over the coming days, as visitors came and went. Luke needed to fast for the procedure, and he was anaesthetized under a general anaesthetic.
It was then confirmed within days, that Luke had neuroblastoma. We were then moved to the oncology ward called “Brookman” where Luke would receive his chemo as an in-patient for the next 12 months.
For more information on neuroblastoma: