Maxi's Journey (Osteosarcoma Survivor)
This is the incredible story of Maxwell’s (Maxi) sarcoma journey told by his mum, Julie.
Numbers behind Maxi’s journey will astound you, and you cannot but feel so proud of him for being so brave and strong. All these by the age of 2.
- Over 90 appointments
- Over 90 tests and scans
- Over 60 leg and Hickman line dressing changes
- Over 40 finger pricks
- Presented to the emergency department 27 times (admitted 23 times)
- Received chemo 23 times
- 13 cannula or other injections
- Received 7 blood and platelet transfusions
- Underwent 4 surgeries (longest duration was nearly 9 hours)
Maxi was diagnosed with localised osteosarcoma in his knee at 15 months old when Julie sensed something was amiss after noticing Maxi became clumsy while walking, his foot turned outward and that he didn’t want to weight bear.
Maxi’s parents were presented with three treatment options, and after much consultation with the doctors, they chose to go with rotationplasty, an innovative yet confronting surgical procedure to treat osteosarcoma that occurs on the knee.
“To us, the visual outcome from this surgery was and still is the last thing on our mind, and to us, it doesn’t matter. We’re just so thankful we can hold our son and watch him grow up,” said Julie.
Following the surgery, Maxi had to learn how to walk again, and with pure strength and determination, he is now walking and running around and is adjusting well.
According to Julie, this journey was the hardest thing her family has ever faced, but it has brought them closer together as a family. “We couldn’t have done it financially if it wasn’t for my sister who started a GoFundMe page and had our close friends and family fundraising for us.”
Julie recalled that they initially did not want any help from others but was glad that they accepted all the help they were offered. Her advice to anyone who’s going through a similar journey is to let people help – physically, financially and emotionally.
“It takes a lot to get through a journey like this, and you need all the support you can get. Meet new people and enjoy their company. Spend as much time enjoying what you have, someone to love and encourage towards better days.”
Today, Maxi is 5 years old and finds ways to do everything his way. He is nearly 3 years off treatment and is cancer-free.
Maxwell attends frequent Physiotherapy, Hydrotherapy, Occupational Therapy, Speech Therapy, Oncology follow up appointments and his high-frequency hearing loss is monitored.
Maxi now attends kindergarten and that’s another journey in itself. Maxi has a Global Development Delay, Sensory processing difficulties, Autistic traits and has trouble self-regulating all thought to be effects of his complex medical history. Maxi has an Autism assessment and Neuropsychology assessment coming up.
Maxi doesn’t let any of the above slow him down, he loves to say that he is as fast as Sonic the Hedgehog and has a massive love of animals which he is super knowledgeable of.
Julie made a short video about Maxi’s Journey you can watch here. You can also follow Maxi's Journey via Facebook.
Julie shared Maxi's story with us in August 2020.