Ted, our 5 year old boy, is the bravest and most inspiring person we know. On March 19th he will complete ‘Run For The Kids’, a 4.6km run. It will be an impressive effort by any 5 year old. But, Ted is not just any 5 year old. Ted had Leukemia, and in remission, and still undergoing treatment. In June last year, could barely walk, and had almost no muscle or fat on him. Yet, due to amazing care he has received through the Royal Children’s Hospital (RCH), guidance to complete exercise to get strong (i.e. ‘feats of strength’), support from his brothers and friends to play, and his determination to by physically active, he can now run further and faster than a lot of grownups I know.
Like all kid’s with Cancer, Ted’s journey has been unique. Support with exercise and physical activity has been vital to his quality of life during intense treatment phases, and more recently his recovery. We hope that Ted’s story can give kids and families hope during challenging times, and it will inspire people to donate so that more kids like Ted can be supported to engage in physical activity and exercise through their journey.
A bit about Ted’s journey
On Friday September 3rd 2021, a GP consult for some small lumps in Ted’s neck prompted some blood test. We hoped this would rule out the worst. But, the test results led to a phone call requesting us to immediately present to the Royal Children’s Hospital Emergency Department. Sara, Ted’s mum, took him in. Sara worked there as a nurse – she knew the type of news we were about to receive. Ted and his little brother Archie hugged, and off he went to the hospital.
Ted’s blood test had indicated he had a form of Leukemia. We would learn more about his diagnosis and prognosis the following week, following bone marrow testing. The news was devastating.
Ted was admitted, and immediately begun treatment. We were in the middle of a COVID-19 lock down in Melbourne, so Ted was only allowed to have one of us be with him at the hospital, and his brothers, 6 year old Frankie and 2 year old Archie were not allowed to visit. Sara and I would swap each day so we could each spend time with all the boys. While away from the hospital, the expected anxiety, fear, anger, and so many other emotions would kick in. But, while at the hospital, I would get a sense of calm. Ted, 4 years old at the time was happy, and very interested in all the medical tests and what was happening.
The following Monday, we learnt more about Ted’s specific diagnosis, treatment options, and the initial plan. It was hoped that through a combination of intense chemotherapy (induction) that Ted’s Leukemia could be brought to remission within a few weeks. Initially blood tests at about 1 week were positive and we stayed at the hospital for treatment for nearly 2 weeks. Sara and I continued to swap between hospital and home each day, receiving amazing support from all our family and friends.
The staff at RCH were amazing, providing exceptional care to Ted and us as parents. Things continued to go to plan, and we brought him home on Wednesday the 15th of September, reuniting him with his brothers. We did not realise at the time, but having an older and younger brother to reunite with was going to be vital to help him recover his physical capabilities, which had already been impacted greatly. He had play mates, and that meant exercise mates.
Over the coming weeks, Ted was able to mostly stay home, receiving chemotherapy at day oncology, and via hospital in the home. We did have a few more short stays where Ted would become acutely unwell from his treatments or a virus/bug he had picked up.
Ted’s brothers continued to play with him and help him wherever they could. Ted’s physical condition gradually deteriorated though, to the point that he could no longer get himself out of bed. We would have to pick him up and carrying to the lounge room to sit on the couch and watch his brothers play or try to eat some food. One morning I entered lounge room and Ted was already on the couch – unsure how he got there, Frankie, his 6-year-old brother informed me he had carried him there to play. Ted could walk a little with stiff knees (his legs looked like pegs). As soon as he tried to bend them though, he would fall down. He resorted to crawling to get around the house, and up and down our two front porch steps.
Ted didn’t make it to remission at the 1 month follow up as expected. We were devastated. But still, whenever we were around Ted, he would calm us. His treatment was intensified, and he continued brutal chemotherapy, with this planned for at least another couple of months. He continued to struggle physically, with Ted now a shell of his former self – beginning to lose the weight he had put on due to the high dose steroids he took in the early stages of treatment. On Monday November 15th, he had another bone marrow aspirate to check how well treatment was working. The next 3 days were long, as we waited for the results. On Thursday November 18th we learned Ted was in remission – how amazing, the best day of my life. This was great, but Ted’s journey was far from over.
Ted would get a break from intense chemotherapy a couple weeks later, entering what is termed interim maintenance. This involved ongoing lower dose treatment, including some planned hospital stays. On New Year’s eve of 2021, I settled in for the evening with Ted at the hospital, reading some books and watching some fire works on the TV. Ted was asleep early, and I never made it midnight. Our next news eve would be more exciting, I hoped……
In April 2022, Ted entered a phase of treatment called delayed intensification. Like his early treatment in the first 3 months, this was another 3 months of brutal chemotherapy. He had regained some physical strength in the lead up to this and had been able to return to kinder a little bit. But, he quickly lost strength and weight as his treatment intensified.
For weeks we did all we could to get enough calories into him, to avoid needed a feeding tube. He was too nauseous to eat. We resorted to giving him liquid meals via a syringe. It was the only thing that seemed to work – every 10ml was valuable. We had more hospital admissions due to dehydration. By June, Ted was a shell of himself, struggling to walk again, and barely had any muscle or fat on him.
The intense treatment ended. He would now start maintenance therapy, involving low dose chemotherapy, and monthly hospital treatments. Ted could focus mostly on recovery now, restarting kinder, and getting ready to start school. Seven months on, he is a normal active 5 year old kid, now in prep at school with his older brother. He is thriving at school, learning and having fun playing all sorts of games in the school yard – Tag, Basketball, etc. He will continue treatment until at least the end of this year, including daily medications and monthly visits to the hospital. We have everything crossed that all is going to be good for Ted.
Ted is now a runner
Illustrating how far he has come on March 19th 2023, he is planning to complete the 4.6km circuit at ‘Run For The Kids’. We know he will complete the run too.
During Ted’s treatment he would often come for runs with me, sitting in the pram while his brothers rode their bikes or did some running themselves. Every now and then as he felt better, Ted would get out of the pram and run himself – it always made me smile ear to ear. More recently, Ted had been watching his older brother Frankie run the 5km most weeks at Parkrun. Ted would run a bit with his younger brother Archie, and then retire to the pram. He had run about 1.5km a couple of times, which was impressive. He would run other sections following that too, but when he got tired would hop back in the pram. Ted even started requesting to go for his own runs with me around the block – we started with about 600m, very slowly – he got faster. While on holidays in November, he did a 2.2km run – impressive!
On December 31 2022, I was with the three boys and a good friend at Parkrun. 12 months earlier on that day, Ted and I were in the hospital – this was much better. Ted ran the first 1 km, and I asked him how he was going. He said:
“Good. I am going the run the whole thing today.”
I acknowledged this positively but was convinced he would ask to get back in the pram, as he normally did. Only 3 days earlier he had been to the hospital to receive his routine treatment – a lumbar puncture and intravenous chemotherapy.
How wrong I was.
At about the 2km mark, I asked if he needed a rest – “no”. Around the 2.5km mark, same question – “no”. Around 3km – “no”. I stopped asking, and Ted kept running. 37 minutes and 19 seconds after starting, Ted had completed the 5km circuit! He got faster at the end. As of last week, Ted’s PB for Parkrun was 34 minutes and 56 seconds. He has done it 7 weeks in a row.
Support with exercise and physical activity is vital for kids like Ted
From the start, Ted had ideal support to assist his recovery. As mentioned earlier, his mum is a nurse at RCH, so has been able to help explain everything going on to him (and me), provide vital reassurance during treatments, and advocate for what Ted needs.
I am a physiotherapist, who has a strong focus in both my practice and as a researcher on supporting people to engage in physical activity and exercise. Supporting kids to stay active or be more active has so many health and quality of life benefits. But exercise and physical activity participation becomes a lot more challenging (and important) when a child has cancer. Treatments required have so many side effects – nausea, pain, fatigue, muscle wasting, effects of the nervous system, and the list goes on.
Ted needed support with staying active and getting strong again. I have really enjoyed being Ted’s own personal physio. At times where Ted was struggling the most physically, we reached out to the hospital for physiotherapy support. They were amazing, providing may ideas and activities to maintain and recover strength and function. We would play balancing games on the floor, play bowling games to work on his trunk strength, and many more fun and creative things. Collectively Ted and I would come up with our own things too – we called them “feats of strength” – Ted was one of the most diligent patients I have ever had. We worked on getting his trunk, legs and arms strong again, and created some healthy competition with his brothers.
As Ted got stronger, he was able to play more with his brothers, ride his bike, climb on the playground, and up trees. Where he had trouble with things, we would practice them, and I would support him to complete the activities – e.g. hold him up a little while he did the monkey bars, until he could do them independently again. It was so rewarding to see him grow in confidence.
Ted’s running journey started small. I looked back at entries in my Strava from August and September 2021. There are multiple entries of 600m runs around the block titled ‘Ted’s run’. Back then he would trip a lot still and struggled with balance – we were practicing hopping to help, and completing ‘feats of strength’ with weights from K Mart to help regain strength in his thighs.
Ted, our 5 year old boy is the bravest and most inspiring person we know. Putting some of Ted’s story on paper has made me cry a few times, mostly in a good way. We have had amazing support from the Royal Children’s Hospital, our family, our friends, Ted’s kinder.
Ted has also had had unique support to help him with exercise and physical activity – a nurse mum, a personal physio, and two amazing brothers to play with and support him. Ted hopes that you might consider supporting Little Big Steps to help other kids like him receive support with exercise and physical activity, so they can be supported to undertake “feats of strength” to help them get strong and play again – ultimately helping them have the best life they can during and after treatment.
Christian (Ted’s Dad)