There are no words to describe the feeling you get when you hear that word ‘cancer’. A feeling of dread and despair coupled with desperation, fear of the unknown and panic. The room starts spinning, your heart starts racing and you start sweating, you can hear what the doctor is saying but the words are not quite sinking in. It is a confusing and scary time!
Six weeks before, we welcomed a beautiful baby boy into our family. We named him Jordan Ashley. He was a perfect 7lb 9oz with a head full of dark hair and the most gorgeous blue eyes. He did not waste any time entering this world with labour and delivery lasting only 1 ½ hours. Three days later, we brought him home and began life with a newborn. His big brother, Nathanael, was as proud as a big brother could possibly be. We spent every day doting on our new little bundle of joy.
Over the next few weeks I started noticing subtle changes. My ‘mummy’s intuition’ was screaming at me that something was just not right. Jordan stopped feeding properly, he began vomiting, he would not lie down flat without crying and was up all night long crying. We took him back to see our midwives for help and advice, to our GP for routine check up’s and turned to family for help. The feeding problems got so bad that I had to supplement with a bottle as he could not suck for very long. This went on for about 4 weeks until one evening we got so desperate and concerned about his condition that we took him to an emergency after hour’s clinic. I spoke with the doctor about my concerns but was told to stop over reacting, take my baby home and feed him. Well I did, and by morning my husband woke me up (he had the night shift so I could sleep) a little distressed saying that Jordan was refusing formula. I took him and attempted to breastfeed but he vomited immediately after.
We contacted our paediatrician and demanded that he see our baby. I spent that day in the Mater Children’s Hospital ER being watched very closely in a private room. That’s when his cry turned into a high pitched scream and the vomiting continued. He was admitted into the private ward that afternoon. Still to this day I feel so angry that my concerns were dismissed and no one believed us. I know that had he been diagnosed earlier it would not have changed his prognosis but I do think he wouldn’t have suffered as much. The following afternoon, my husband and I ducked home to pick up a few supplies (clean clothes etc) when we got the call. We needed to get back to the hospital ASAP. My heart was racing, I couldn’t stop crying and I was definitely thinking the worst. In the short hour we were gone, our little man was slipping into a coma. He had undergone a CT scan when the nurse discovered his pupils were not dilating properly.
After seeing Jordan for a moment we were ushered into a small room with our paediatrician, a neurosurgeon and a team of nurses. I was made to retell all of his symptoms and the lead-up to that day before we were given the diagnosis. All the while taking every chance to glance at the scan on the wall waiting to be lit up to turn our world upside-down. When I heard the words ‘brain tumour’ I completely fell apart, it felt like the walls were closing in around us. All I could think of was this tiny, perfect little person that was suddenly so fragile and clinging to life.
The bulk of the tumour was in his brain stem but there was also a large mass on his left side that had pushed its way through to the right side, distorting the mid line section of his brain. Basically, it was everywhere! I could see streams of cancer penetrating other areas, it was horrible! Jordan was immediately rushed into surgery to relieve the pressure that had built up in his brain, as the tumour had blocked his ventricles and stopped the fluid from draining naturally. Handing him over to that anaesthetist was by far the hardest thing I have ever had to do. Not knowing if it would be the last time I would hold him alive was heart wrenching. Thankfully he came through that surgery.
An MRI followed shortly after surgery and by the time he was 8 weeks old we were given his prognosis. Any mum loves to hear that her baby is one in a million and unique unless it means that your baby has only three weeks to live. Three precious weeks was all they gave him. The cancer was too aggressive to attempt to treat and given that Jordan was so young there were no treatment options.
We were able to take him home once he had recovered from surgery and were determined to make him feel as loved and secure as possible. I remember taking him out shopping one day and walking past a section of baby clothes I burst into tears because I knew I could not buy the next size. During his time at home, we were visited daily by the blue nurses who were just so beautiful and so dedicated. Unfortunately it wasn’t long before Jordan was readmitted into hospital. When Jordan reached 12 weeks old we gave him a birthday party to celebrate his brave battle to stay with us. I’m sure the nurses thought I was mad, but I didn’t care! My baby was still with me and I was resolved to celebrate that. He had surpassed his doctor’s expectations, my little boy was a fighter.
Jordan’s health declined slowly and his head grew so large that, by the time he was 5 months old, he could not be held upright. He suffered with seizures and pain, but was determined to stay awake to see Santa. He was so very brave! Jordan remained with us until he was 27 weeks old when he lost his battle on the 10 January 2006. He was nestled in our arms as he took his last breath. Jordan had the most amazing little personality and touched the hearts of everyone who met him.
Just after he passed, our nurse turned to me and said ‘you know we loved Jordan as though he were our own, he had 50 mums and dad’s here’. I’ll never forget those words and just how much Jordan was loved by those who cared for him during his short life and I couldn’t be prouder to have had the privilege of being his mummy.