Words from Saxon’s Family:
On February 27th 2023 Saxon aged 10.5 was presented to the ED at JHH. Where is was discovered he had a Brain Tumour.
3 days later on March 2nd he was taken down for surgery to have the tumour removed- this was an 8hour surgery- where we sat outside the operating doors waiting for a miracle.
Friday the 4th March it was discovered by his after surgery MRI that Saxons tumour had spread- it was found he had one 3mm growth on his spine and two 1mm growths in his brain cavity- luckily all 3 growths were not attached to anything.
One week later on the 9th March, we were given the horrifying news that his tumours were cancerous- and he was diagnosed with Medulloblastoma.
Saxon remained in hospital for 3 weeks after his surgery to recover, but unfortunately he lost mobility to his right side of his body. He was unable to walk without us assisting he required a wheelchair, and he was unable to use his arm.
This was a complete shock to all of us.
2weeks after being at home to further recover, we were transferred to Westmead Childrens hospital where Saxon would undergo his Radiation treatments under General anaesthetic. With Saxon having autism this was our only option. We stayed at the Ronald McDonald house Westmead for nearly 2 months while he had his treatments, he also required a PORT surgery while we were there to help with his bloods collections and ready for his chemotherapy.
Our time at RMH was lonely, and isolated. But staff there helped us. We are forever grateful for all their support!
30 rounds of both cranial and spinal radiation.
Saxon was seriously ill and lost a dramatic amount of weight- he went from 54kgs down to 36kgs in just 2 weeks. He could not manage food or liquids and was on the verge of being hospitalised. Saxon was deemed malnourished!
His hair loss was very traumatic for him and us watching it fall out was devastating and made it feel too real and that Cancer was apart of our lives. So my husband Pete shaved his hair to help Saxon feel comfortable and confident with what was happening to him.
Once home from Westmead, we took it easy and prepared for the next step- Chemotherapy.
Hospital stays scared Saxon, so his oncologist and team arranged for us to have a few nights stay in the ward where fluids and checks were done to help settle him and get him ready for the day.
We had intensive conversation and discussed with JHH and Westmead Oncologists – regarding Saxons Chemotherapy treatments and what was best for him medically and mentally. His protocol to treat his Medulloblastoma is performed in 7rounds of chemo at JHH, but in Westmead it is only 4 rounds. Juggling the idea of each treatments and hope that we were making the right decision to where have his treatment done at was a hard choice. Not knowing or understanding these 2 different treatments and what is better to kill the cancer but what was better for Saxon to handle was extremely difficult.
JHH agreed to have the 4 rounds of chemotherapy protocol done here in Newcastle so Saxon could be close to home. After lots of paperwork signed, Saxon was the first ever patient for Medulloblastoma to be treated in 4 rounds of chemotherapy at JHH.
Saxons chemotherapy started on July 20th.
His first round ran to plan without hiccups thankfully. But by his day 10, Saxon had woken feeling and looking like death. I rushed him to the hospital where his team ran tests and found he had infections.
Saxon had developed a Staph infection and Rhinovirus infection.
We were placed in an isolation room where he received multiple antibiotics and fluids and blood products, his bloodwork was checked every day to see how the infections were holding. We were told it was very serious and that we could possibly lose him.
Thankfully he fought it!
He spent 23 days in isolation and once all clear he was well enough to start his 2nd of chemotherapy.
On Monday 15th August Saxons oncologist came in with news – HIS FIRST MRI WAS CLEAR NO EVIDENCE DETECTED!
This news had us all in tears and brought us to our knees.
Just 2 days later he started his 2nd round of chemo and ready to kick cancers butt!!!
This round was tougher on his body, he required lots of blood and Platelets transfusions but was still able to be home to recover.
With each round he faced there was something coming around the corner. From infections, illness and nausea to misery missing out on life outside and being around friends that had him seriously depressed. It was hard.
Saxon finished his last round in November and with still CLEAR MRI SCANS.
During 2023, Saxon has undergone intensive rehabilitation for his mobility to regain strength to improve his right leg and arm.
Doctors declared he is left with a ABI from the damage his tumour caused. Saxon continues to walk with a walking frame and requires a wheelchair for big trips as his body fatigues quickly from heat and long distances.
Saxon has severe PTSD from his cancer journey, as most do. But his bravery is something we speak of fluently.
We are so proud of him ♥️
Saxon is 16months out of treatment and is still Cancer free and in remission!
He is now 12yrs and looking forward to everything this world has to offer!
❤️ The Knoester family
