Chandler’s Story
Chandler was such a loving boy. He was wise beyond his years with an intelligence to match. His empathy for others and kindness was second to none. Chandler had always been a very healthy, fit and active child. He loved rollerblading, skateboarding and playing basketball. Chandler is the younger brother to his big sister Cammie, who he absolutely loved, adored and admired. They had the most remarkable bond. A love that cannot ever be broken.
At the beginning of 2022, Chandler displayed with symptoms of lethargy, a sore neck, nausea, vomiting, extreme headaches and double vision. GP after GP put his symptoms down to a virus or perhaps migraines. About 1 week later, I noticed that one of Chandler’s eyes were looking lazy. Again, I took him to the GP and specifically had them check his eyes. Once again, we were dismissed and I was told that his eyes looked fine. This was a little boy who had presented to a medical clinic on at least 4 separate occasion, presenting with neurological symptoms, and not once was his health and symptoms taken seriously. It wasn’t until I took Chandler to the Optometrist, that we were referred that day to an eye specialist. After few more tests at the Ophthalmologist, we were told to go straight to the Emergency Department at Monash Children’s Hospital. The fear and the sheer look of sorrow in the optometrist’s eyes made my stomach sink and I knew immediately that there was something seriously wrong with my little boy.?
On the 10th of February 2022, Chandler underwent a series of MRI’s. I knew something was wrong, but never did I suspect that my 8 year old son would be diagnosed with terminal brain cancer. That night I had to leave my son’s side to be taken into a small room on my own, where I was told that they had discovered a large tumour in Chandler’s brain and that it did not look good. I remember, finally being moved out of Emergency and onto a ward. This night, I lay awake next to Chandler. I put his soothing rain sounds on so he could sleep and I put guided mediations on for myself, to try and calm myself and breath. I remember this night so well. All the thoughts running though my head, praying with every ounce of my being that Chandler would live to experience life. I remember asking the Universe to please give my son at least 10 more years. 10 more years to live so he could experience falling in love, driving a car, travelling to places he had dreamt of visiting. Even though I hadn’t yet heard the words terminal brain cancer, I look back now and realise that my mother’s instinct knew innately what was coming. My heart and brain on the other hand, lived in constant hope from this day onwards.
The following day we met with Dr Peter Downie, an oncologist at Monash Children’s Hospital, along with his nurse and social workers. This is where the reality of Chandler’s diagnoses came forward, yet thinking back it is all a complete blur. We were told that Chandler had a large mass in his brain, located in the right thalamus and pushing over the midbrain. Due to the location of this mass, we were told it is inoperable and there is very little that can be done. Generally, for this type of tumour, radiotherapy is a treatment option, but it will not cure it. Other than that, there is nothing more that can be done. This is when we discussed and signed consent forms for Chandler to have brain surgery. Not to remove the tumour, but to retrieve a sample of the tumour through a biopsy. From this biopsy, we would know exactly what the tumour is. We also signed consent forms for PRISM Clinical Trial project, a program that would look at the make up of the tumour to see if there are any drugs that could be trialled on Chandler. I remember signing any paper that I could get my hands on that could give us any hope at helping my son.
On the 14th February, 2022 I had to walk my little boy into brain surgery. This was one of the most harrowing experiences of my life. Staying strong for Chandler, all the while shattering inside. Eight days later Chandler was finally diagnosed with DMG, Diffuse Midline Glioma. Our life was shattered in an instant.
Throughout his journey there were so many ups and downs. Chandler underwent radiation therapy. 33 rounds, 5 days a week. His beautiful little face being pinned down with a mask, where he couldn’t move and an inch. He was left all alone in this room every single time, while the radiation took place. My amazing little boy never once complained. He made his radiation playlist on Spotify, to help keep him calm and soothe the experience for him.
Radiation worked well for Chandler. It shrunk his tumour by more than half its original size. Throughout radiation and for some months following, Chandler was symptom free. Myself, and all that loved Chandler had fallen into a false sense of security, thinking that Chandler was the miracle. The child who would beat this cruel disease. He was going to be that 1%. HOPE. Those four letters are what parents like me cling to. HOPE is what families deserve. We were faced with such little hope, but that 1% was still enough for me to never let the what could be get in the way of loving my son and doing all I could to save him.
As there were no treatment options other than radiation, I researched and went down the natural pathway. I found a Naturopath located in Queensland who had helped to treat children with this same deadly disease. We accessed CBD oil, fish oil, Curcumin, Vitamin D, Turmeric, Boswellia. We worked on Chandler’s diet, to ensure that eggs and salmon were a major part. I was making fresh juices for him, which he detested but still drank. I needed to know I was doing anything and everything that could help my little boy. All of this, I had to research myself. No team of professionals helping me to navigate treatment options for my son. NOTHING. We were given the diagnosis, the prognosis, the option for palliative radiation and that is it!!! Go home, make memories.
August of 2022, Chandler had a seizure. One of the very cruel symptoms of this disease. More common in DMG, where the cancer is located in the Thalamus. This was one of the most horrifying things to experience. The fact that Chandler had been doing well for so long, it was unbelievably shocking and gut wrenching.
This seizure was the beginning of Chandler’s symptoms returning, but this time it was so much worse. This time it affected the left side of his body, where there was weakness throughout. It was at this time, where I became desperate, and pushed and pushed for something more to be done for my little boy. I could not just sit and watch my son die, without knowing that I was doing all I could do with the little power I had.
Finally, in October 2022 after much angst, the PNOC022 trial opened out of Royal Children’s Hospital, in Melbourne. The first trial available for DIPG children since 2018. A combination of Onc201 and Paxalisib.?
To participate in this clinical trial, Chandler had to undergo re irradiation due to the fact that he was now in progression. This time, the radiation didn’t work as well as the first time, and his weakness continued to worsen. Throughout the months that followed, the drugs exacerbated viral skin rashes and hyperglycaemia. Chandler was hospitalised at the beginning of 2023 because of a simple virus that all children get. Children of his age would display symptoms like a sniffly nose.? Yet, due to Chandler’s immune system being compromised, this put him into hospital for over a week. He suffered the most hideous viral skin rash I have ever seen, where it was like his skin was burning from the inside out.
There were times his body was so exhausted, we thought he may not make it through. But Chandler had an inner strength and determination to not let this cancer beat him. Not long after recovering from this virus, in April Chandler had another seizure. He then had another seizure in May and then again in June. Each time Chandler had to be intubated with the fear that he may not wake up again. Each time he amazed us and the doctors with his determination. However, with each seizure Chandler’s symptoms and loss of abilities worsened.
Chandler continued the trial drugs until the last few weeks of his life. When the end was nearing, we knew they were not working. We did not want his suffering to be prolonged.
As Chandler fought and lived with DMG for 17 months, he taught us all how to live life to the fullest and enjoy every moment. Chandler battled with so much strength, so much tenacity and so much grace. The night before he passed away, Chandler spent time with myself and his big sister, where we watched videos of our life together and told stories. It was so beautiful. ?Chandler passed away peacefully at home, surrounded by love, 10 days after his 10th birthday.
Chandler didn’t deserve what happened to him, he deserved to grow up and live his life and our dreams for him!
With love and hope for a better future for children with DMG/DIPG,
Chandler’s Mum,
Jacqueline
Support Received
What does DMG/DIPG Research mean to you?
Advocacy, awareness, funding and research are crucial. There are so many variables for each individual child diagnosed with DMG/DIPG, so research is vital in finding a cure. Here in Australia we have world class scientists who are tireless in the pursuit to make their research count. They are determined, passionate and truly awe inspiring.
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WHERE THE MAGiC HAPPENS
For Memories in May, join the Woodlands School Community and purchase a copy of Where the Magic Happens to celebrate Chandler.
Where the Magic Happens is a heart-warming story about a young boys fight with brain cancer. The story sensitively deals with the realities of brain cancer in a way that is accessible to younger readers. It is an excellent resource for any child, parent, sibling, teacher or friend who has been impacted by brain cancer in some way.
