Our world fell apart when our son Curtis started becoming weak on his right side, he was unable to run and climb like he used to, he was also having problems with swallowing.
Curtis had two major falls where he cut his eye open as he fell off a swing and then fell down onto the coffee table and split his head open. All of this was very unusual for him. It was coming apparent that something was going on. Curtis’ Pre-school teachers had noticed that his eye was turning in and something had changed.
Curtis is our baby boy of the family and was almost 5 at the time, he has two older brothers, Lucas – 14, Isaac – 12, and a twin sister Jasmine who is one minute older. Curtis is a fun loving, typical five year old who enjoys, scooting, swimming, video games, building Lego, playing with his siblings and enjoys going to Pre-school.
I was very worried at this stage and took him to our family GP and he acknowledged that there was some urgency to have him seen to. I’ve never felt so scared and anxious!!! At first we were told he had Bells Palsy, a temporary paralysis of the face that would pass. As a mother I still felt there was something more sinister going on as his walking was weak and he was constantly falling over and still he had trouble with swallowing. I pushed the Doctors for further scanning which thankfully finally happened.
That week Curtis had a CT Scan, which unfortunately showed a tumour in his brain. Later that night, Curtis had an MRI which confirmed everything.
Curtis was diagnosed on 27 April, 2016 with Diffuse Intrinsic Pontine Glioma, (DIPG), the deadliest type of childhood cancer, a highly aggressive and difficult to treat brain tumor that is found on the brainstem, mostly in children 5-10 years of age, with typically less than a year to live.
We as a family were in complete shock that this was happening to us. This is when our nightmare became reality. Our world fell apart and our family was completely devastated.
We fear for ourselves, his two elder brothers and especially his twin sister, Jasmine, who will have to endure the pain of losing their brother and best friend to this monster called DIPG.
Through May and June 2016, he received the only treatment that can be provided in Australia. Curtis bravely endured a 7 week course of radiotherapy. Being so young he was put under a general anesthetic for each of the 33 treatments to ensure he would not move or be scared of the mask used to keep his head still. Beyond this there is no further treatment options. This helped in reducing the size of the tumor and stabilised it but the best this will do is buy us precious time with our baby boy.
What is certain is the that tumor will still be there and will soon regrow, what we don’t know is how much time he will have left with us, but it will be counted in weeks or months, not years. While there is no cure there are vital medical trials for DIPG occurring around the world that provide us with hope.
Since the diagnoses we have been filling our days with life experiences with Curtis and the family. Everything from trips to the Gold Coast to visiting the circus. This has immense sadness as we do these trips, knowing that they could be our last. We as parents try to push on as we know we have to be positive for us and our other children.
We were advised by our Oncologist in Melbourne, that a Clinical trial was available to us in Sydney and it is called Intravenous EEDVsMit in Children with Recurrent / Refractory Solid or CNS Tumours Expressing EGFR (ECREST). The trial is looking at an ingenious method of delivering chemotherapy drugs to the brain, which has often been difficult with conventional chemotherapy treatments. As a DIPG patient it is very risky having a biopsy, we decided not to have this done and we are not sure if Curtis has the EGFR receptor. We were advised that DIPG patients had a 50/50 chance of having the EGFR receptor. As there are no other treatment options for the type of tumour we decided to take the opportunity and see if the treatment would work for Curtis. It’s been a big risk and we initially thought it was working but now we are not so sure as Curtis’ walking has declined and has weakness again on his right side.
Fortunately the trial itself was free for Curtis, but we as parents had to find money for flights and accommodation for the ongoing treatment. We are paying up to $1000.00 weekly on flights to and from Sydney. This quickly adds up over time and we need to pay this every week, seeking out the cheapest flights we can from month to month.
It is amazing how generous people have been in assisting us but we know we do not have enough to cover all the costs.
We are appealing for all of your help to give Curtis what he deserves: stability, comfort and the best treatments possible.
Right now, the best way of making a difference for Curtis and his family is to take your feelings of helplessness, hope, sadness, anger, shock and confusion and turn them into action by donating or switching with Energy Pledge. With each switch, Energy Pledge has offered to donate $80 to towards our flights for each switch and each utility. That means only 13 people have to switch to fund out next trip to Sydney, or half of that if you switch both your electricity and gas.
Thank you for your support
Jacqui and Kevin Dyt