Ozzie Rogers was only 15 years old when he was diagnosed with Acute Myeloid Leukaemia. His mum, Miranda, has shared his story …
Ozzie was only 15 years old when he started to feel ill.
One Saturday, after a rugby training session, he came off the pitch and said to me “that was the best game ever!” But just four days later, he came off the same pitch saying, “I don’t know what’s the matter with me, I just don’t feel very well, I’m really short of breath”.
The next morning the glands in his neck were swollen and he had flu-like symptoms. He was very tired, pale, and while the doctors originally suspected glandular fever, the test came back negative.
I took him back to the doctors to have his bloods done, and that evening we got a call to say to take him straight to A&E.
Ozzie was admitted on the 8th October 2018, and the following morning he was diagnosed with Acute Myeloid Leukaemia.
Ozzie had to spend the next three months in the Royal Belfast Hospital for Sick Children receiving chemotherapy.
But his leukaemia did not respond as well as hoped.
He developed a fungal infection in his lungs, sickness, and constant temperatures. He also suffered moderate heart damage, and lost 17kg in weight.
It was during these dark days that Helen, a Cancer Support Specialist from Cancer Fund for Children, was introduced to us. She would become our lifeline. Helen quickly bonded with Ozzie and supported him during his time on the ward, spending time with him and reducing the isolation teenagers can feel on the ward.
It is thanks to supporters like you that Cancer Fund for Children can offer this help to children like Ozzie.
With chemotherapy not being an option, the doctors recommended a bone marrow transplant. So, on Christmas Eve, Ozzie had a bone marrow aspiration and lumbar puncture to check his bone marrow.
My husband, myself, and Ozzie’s younger brother, Luke, were devastated that none of us were a match for him, so we had to hope a search of the registry could find a match. We were over the moon to find out a couple of months later that Ozzie was fortunate to get an unrelated match.
We travelled over to Bristol for Ozzie’s bone marrow transplant in March 2019, because they don’t do transplants in the Children’s Hospital.
Ozzie went through his treatment, came out the other side and got home just after his 16th birthday.
He started back to school and repeated some GCSES, because he’d missed most of a year of schooling.
Helen supported Ozzie in the community during this time, providing one to one support largely focusing on his emotional wellbeing and peer support, introducing him to other young people who had experience of living with cancer.
We enjoyed a break at Daisy Lodge, Cancer Fund for Children’s therapeutic short break centre. We’d been a few times as a family. It is a fantastic facility and it’s so badly needed.
Ozzie was doing really well, he was going back to the gym. He was working with a personal trainer to get him back into fitness because he was keen into his rugby and liked his sports.
He was back playing his guitar. Ozzie was a talented guitarist and he loved rock music. He used to hear a rock tune and just pick up the guitar and just play it. He was never musically trained, he just played by ear.
Then in April 2020, just at the beginning of lockdown, Ozzie relapsed.
We got transferred over from the Children’s Hospital to Belfast City Hospital because by the time Ozzie got admitted he was coming 17. He was in the City Hospital for six weeks initially, for another chemotherapy to see if it would fight the leukaemia again.
But sadly, it didn’t work.
Helen supported Ozzie on the ward again, spending time with him to process his relapse, what lay ahead, and reduce the increased isolation he felt with covid restrictions. It gave me a chance to take a couple of hours away from the ward.
After months in hospital (with only one parent being able to stay), numerous visits to outpatients for blood transfusions and palliative treatment, Ozzie became very unwell in August.
He was readmitted to hospital with pain in his lungs and a high temperature.
A few days later, I was given the devastating news of just how serious Ozzie’s condition was.
His dad Simon was allowed to come and stay close to the hospital, where we both cared for him until he passed away on 10th September 2020, aged 17.
During Ozzie’s last month, Hannah, another Cancer Fund for Children Cancer Support Specialist, supported us intensively in the hospital, helping us navigate the tragic circumstances we found ourselves in.
We would have been lost without Helen and Hannah to be quite honest. Helen just always seemed to appear at a time when Ozzie was at his lowest. Cancer Fund for Children is a very special charity, they build up a relationship with your child and that relationship becomes like a friendship. They’re not just a client, they become friends.
We’ll never forget how the charity helped bring Ozzie some joy throughout his cancer journey. We were so lucky to have their support through the pandemic.
Unfortunately, there are many more families in need of their help.