Maxi’s mum, Julie has shared her son’s story and how, despite after everything he has been through, he always makes everyone smile and lights up a room.
On 26th October 2016, we noticed Maxi’s foot was turning outwards as he walked and he was struggling to put any weight on his leg, so we took him to see the doctor, there we were told he had a temperature and virus in his knee. Over the next 7 days he got worse, not wanting to bear any weight on his leg and he reverted back to crawling. We went back to the doctor and we were told that is just the way a baby walks. We pushed for an X-ray, which was done. On the same day we got a phone call and we were told that there was shadowing on his right knee and to go to straight to A&E.
Maxi had a full body X-ray and we were told it could be childhood cancer, a cyst or a low grade tumour. We didn’t believe it could be cancer and we were quick to hold on to it being the other alternatives.
We went back to hospital the next day for an MRI scan, this followed by a biopsy and then Maxi was sent home with a cast on his leg.
Following his biopsy, 14 days later we received a call on the 17th November and were told we had to fly to Melbourne for more scans.
I begged on the phone to find out what was going on and that’s when we were told Maxi had osteosarcoma in his right knee.
Three days later we were in Melbourne and on the 25th November Maxi had PET scans and Hickman line to receive chemotherapy through. It was then it was confirmed that it was a high grade malignant tumour - osteosarcoma. Thankfully this tumour was isolated bringing Maxi's chances of survival up to 75%, from around 35% if it had of spread.
We were to spend the next 9 months in Melbourne. We had an apartment in Melbourne, Maxi’s dad had to stop working and our eldest son, who was 5-years-old at the time, missed a lot of school. My wonderful sister set up a gofundme to help us with the costs and the support from our family and friends was incredible.
Maxi’s treatment regime was 11 weeks of chemotherapy followed by surgery and then another 18 weeks of chemo following his surgery.
Nothing could have prepared us for how sick Maxi was about to get. We were told there was a risk Maxi would lose his leg but never thought that it would happen. We were so hopeful right up until the decision by surgeons was revealed.
Maxi was very ill during his chemotherapy treatment and we were on edge all the time. We took it in turns to look after him inside the hospital to ensure we didn’t become too exhausted, keeping up with everything. Maxi had bad mouth sores from the methotrexate, and he needed blood and platelet transfusions throughout. He lost his hair, eyelashes, eyebrows and he had really bad bruising, especially when his platelets were low. He would fall very ill between his chemo sessions and we would often spend up to 7 days or more back in hospital.
An MRI and a PET scan showed that after his first 2 blocks of chemotherapy, the tumour had reduced in size.
We were then given two options for Maxi; an above the knee amputation or a rotationplasty (This is where the bottom of the femur, the knee and the upper tibia are surgically removed. The lower leg is then rotated 180 degrees and attached to the femur. Resulting in a backward facing foot to replace and act as the knee). We were told limb salvage surgery was not an option because of Maxi’s age. We were just in shock and disbelief. With the help of a lot of people we decided on a rotationplasty.
We were able to go home for 5 days before Maxi’s surgery and on the 23rd of February 2017, we returned to Melbourne with my mother, father, Greg’s mother and grandmother for support.
Maxi’s surgery was on the 23rd February and lasted for 9 hours. This time was excruciating waiting in all hopefulness that the surgery would run smoothly.
After surgery I remember peeking under the blanket to look at his leg. It was like falling in love with him all over again. After surgery he became very poorly and had Clostridium difficile (‘C Dif’, a bacterium in the bowel that can cause diarrhea). Maxi wasn’t himself, no smiles and in a lot of pain. Day 2 Maxi's Dad, Greg and my Dad managed to get him to smile back. Surgeons wanted to put him in a hip spica, a half body cast, to ensure as little movement for healing as possible. Maxi was too ill with the diarrhea so they agreed against this. 5 days later, he developed bronchitis and was ill again and on Medical Emergency Criteria, high watch from hospital staff.
12 days later Maxi was discharged, and we took him back to our apartment. Maxi tried to get around and managed things in his own way.
On the 15th of March, Maxi started his post-surgery chemotherapy, which would last 18 weeks. He fell very sick again and contracted a type of bacteria called Capnocytophaga. This can result in limb loss and can become fatal. Luckily Maxi was already an inpatient in hospital, so he was given antibiotics quickly.
In May, he started his physio while still having his chemotherapy. Maxi had an outer metal brace on his leg which was screwed into his bone. We knew physio would take a long time. On the 22nd June the metal work was removed, and Maxi could get around well. He loved having the brace off.
His last chemotherapy was on the 1st August 2017, 4 days before his 2nd birthday. We had a celebration for Maxi on the hospital ward and a birthday party at the apartments.
We went back home to Tasmania on the 8th of August, which was very long awaited.
We had to go back to Melbourne on the 4th of September for the fitting of his prosthetic leg. Maxi tried it on for the first time and looked like a baby lamb waking for the first time, very unsteady.
On the 6th of September 2017, Maxi’s MRI, PET and CT scans came back clear and he also took his first steps with his new leg.
He had physiotherapy and hydrotherapy over a short period of time when we arrived back home to Tasmania. It took 2 years for Maxi to start intensive physiotherapy and Hydrotherapy due to medical staff from Tasmania and Melbourne trying to communicate and be on the same page. Maxi has since experienced issues with his prosthetic services because very few people were used to working with this type of surgery and we live in a state with literally only one accessible prosthetist who is very busy.
Maxi is now four years old and still has around 15 appointments a month including Physiotherapy, Hydrotherapy, Speech therapy, Occupational therapy for sensory and other behaviours, hearing tests (he has high frequency hearing loss) and Prosthetic appointments. Maxi is referred to as a severely picky eater, which we think is due to the ill effects chemotherapy has had on his taste buds. Maxi will continue to have scans for the next ten years.
Maxi makes everyone smile! He has the biggest personality and blows people away with his knowledge of his favourite animals and dinosaurs. Maxi is always happy and he’s always asking if you’re happy too.
Below is a video that Maxi's mum, Julie, has created
You can follow Maxi's journey on Facebook by clicking here.