It has been many years now, since the loss of my two sons, almost fifteen years to be precise, and my journey still continues. Our first son Luke, was diagnosed at just thirteen months of age with Neuroblastoma a childhood cancer. He was treated at a local public hospital here in Adelaide, and underwent chemotherapy, surgery, a stem cell transplant and finally radiotherapy. He spent over twelve months in and out of hospital receiving treatment as well as regular blood tests and scans.
During his treatment I fell pregnant, and we were looking forward to expanding our family. Months passed and finally Luke was given the all clear, and we managed a holiday to Queensland. When we returned things seemed to go back to normal. Our lives were on hold during Luke’s treatment and it was hard to make any plans as his chemo was continuous, and involved him staying as an in-patient in hospital, where either my husband, our mother’s or myself needed to be with him.
Luke was a beautiful, blonde haired blue-eyed boy, and quickly gained a reputation around the hospital ward as being cheeky. One nurse would call him ‘Spooky Luke’. As a toddler he was really just learning to speak and his treatment set him back in many ways.
In September of 1998 Luke was undergoing some routine tests, when I mentioned to his nurses that I had not felt the baby move for some days, they arranged for me to have an ultrasound. I remember that day vividly as my mother was with me, we went down to the Emergency Department of the hospital where it was detected that the baby had no heart beat. I could not believe the news, my mother and I were in shock. At 26 weeks I had suffered a stillbirth.
My husband was called as he was at work and he drove to the hospital immediately. The nurse spoke to us and then a doctor came in to explain that the baby was dead, as there was no heart beat. After some discussion about what would happen we went back up to Luke’s room in the hospital and waited until my Obstetrician arrived. I would need to deliver the baby and would be induced. I remember the waiting was horrible, I felt so numb, and an empty feeling overcame me.
Some hours later that night I went into labour after being induced and our son, which we named Cody Alan was delivered. Cody was wrapped in a blanket and a bonnet placed on his head by the midwife. She took some photos of him and we were given these to keep.
The next day we left the hospital, and it was one of the worst feelings I have ever felt. I expected to be walking out of the hospital some months later with a baby, not empty-handed. It was an incredibly emotional time, as we still had a sick son recovering from cancer to care for. A small private funeral was conducted days later where our son was laid to rest.
Some months later in November, Luke started to become unwell, he wasn’t eating, and appeared jaundiced and unsettled again. We arranged to go back to the hospital and tests were carried out. Sadly we were told that Luke’s cancer had spread to his liver, lungs and spine and we were given the horrible news that basically nothing more could be done for him. We could continue chemo which would prolong his life by weeks, or take him home to die.
We chose the latter, and with support organised by the hospital, Luke came home to die. He had spent enough time in hospital, and we felt we needed to spend some important, quality time as a family.
Luke received amazing support from a beautiful nurse called Sara, who also happened to be a nurse in the oncology ward at the hospital. She came and visited along with Luke’s oncologist and a palliative care doctor. Initially he was holding his own, but within weeks his body became weaker, losing weight and his organs were shutting down. Morphine was given through a portable pain control pump. He was now just drinking fluids, and sleeping much of the day. Our son was wasting away before our eyes and there was nothing more we could do, except love and pray for a miracle.
On Sunday September 20th 1998, Luke James Barreau left this earth, his pain and suffering now over, and he slipped over to ‘the other side’. Within days we were again back at the same cemetary paying tribute to our other beloved son. The chapel was at full capacity, as family and friends payed their condolences to our son and our respective families.
Life wasn’t the same without him, and it was incredibly quiet at home. I guess I was just waiting for him to appear. The weeks and months passed, the grief became so intense, my chest felt like it had a gapping hole, this ache that just would not go away! I struggled, I mean really struggled with his death, I could not even mention his name without crying, this was gut-wrenching stuff.
I felt distant, and numb, and so empty inside…how could this happen not once but twice and within three months! Luke’s room was a source of comfort and I spent a lot of time just sitting on his bed and talking to him. His room had this aroma, his scent I guess that I could still smell on his clothes. I would constantly look through his cupboards and just hold them to my face, trying to feel a connection to him. Our nursery on the other hand was empty, apart from a cot, and some furniture, there was no baby to comfort or care for.
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