My name is Marie and I’m the mother and carer of my son Jordan, who has an inoperable brain tumour.
When he was 11, one night he complained of a massive migraine and when he started vomiting I knew we had to take him to the hospital. It was a regional hospital and because the weather was so bad there was hardly any one waiting to be seen. We had an excellent emergency doctor who decided, after seeing Jordan, that just to be safe Jordan should have a cat scan. When they told me Jordan was having a “little bleed on the brain ” I told myself to remain calm and it was the best advice I could have given myself.
They hooked Jordan up to all kinds of machines and put him on a ventilator and we were taken to the ICU waiting room. The weather was so bad they couldn’t get a helicopter to take him to the city and a general surgeon was going to do brain surgery on my son. There was no time to wait because Jordan had suffered a stroke and his brain had started to “cone” which meant it had started to slip down his spinal column. My son was given a three per cent chance to survive. As you could imagine the shock was indescribable. My baby was healthy and now they saying he was going to die.
The waiting for Jordan to come through the surgery felt like a lifetime and I remember a conversation I had with God. I never asked him to save my boy, I simply stated that Jordan wanted to stay with us. God listened, and Jordan stayed with the people that loved him. We took him to the hospital at 9.30 at night and at 5.00am the next morning they put him in an intensive care ambulance and took him to the Children’s Hospital. He was in an induced coma for 2 weeks and stayed in hospital for 3 months and there were many ups and downs during his stay.
He had a drainage tube coming out of his brain draining blood and caught a staph infection in his brain fluid during this time and he couldn’t move any of the right side of his body. He never “woke up” from his coma, but it was more like a gradual awareness except he didn’t talk for quite a while. He learnt to walk again and amazed every one with his determination. The doctors could not find the cause of the bleed but we were so grateful our boy was alive. We learnt that Jordan was now Vision Impaired and had cognitive impairment (short term memory loss), he also had multiple pituitary illness but the fact he was doing as well as he was was incredible.
It took nearly 12 months to find his brain tumour, which then took another 5 years to find out the exact location, in both optic nerves and chiasm. He has gone through failed chemotherapy, radiation and a trial drug. They tried to debulk the tumour, during his craniotomy, but he had a bleed on the table because the tumour is so friable. We moved to the city after that surgery so Jordan could be closer to the hospital and it proved to be a wise move.
He went to a school which had a vision impaired unit in Special Ed and discovered tandem biking. He was able to get a Seeing Eye Dog “Ekka” and learnt to be very independent with public transport. We were getting on with life when in October 2014 Jordan had 2 more bleeds. I couldn’t believe he had to go through this again and I can’t describe the fear I was feeling. 4 months later he was home again, but this time he developed narcolepsy and more pituitary illness. He lost all sight in his left eye and now he’s reliant on a small amount in his right eye.
As a mother so many emotions go through your head. Fear, anger, sadness, despair but for me there was always hope. Sometimes it was only a glimmer but it never left my side, it actually drives you to advocate for your child and that hope pushed me to convince the doctor to try the same trial drug that didn’t work three years, again. We had to try again as it was Jordans only chance for a life and after a few months the doctor was able to get permission to use it again, with incredible results.
Over 10 months using the trial drug Jordan’s tumour shrunk by 60 per cent. We had our miracle, and now we wait anxiously every 3 months for the MRIs to tell us what the tumour is doing. Our little family is closer than ever now because we have gotten through this together. I’m trying to live in the moment, something that isn’t coming easy to me but I’m determined to achieve. Jordan is trying to be a Paralympian, so maybe one day you will see him competing for Australia on his tandem bike. I have no idea what the future holds but there will always be hope guiding us through.