“Harvey is crazy!” says his mum Sallie in the most affectionate of ways. “He loves to laugh, will challenge anyone to a duel, and is Lego obsessed. He’s hyperactive, almost fearless and very cheeky” she laughs.
But when Harvey was five, Sallie’s hyperactive young man started to lose some of his spark. He was constantly tired, congested, and regularly running a fever. At the time GPs were restricted because of Covid so Sallie found it difficult to have Harvey seen, but when he began developing bruises and becoming short of breath, his needs became urgent.
“I knew it was bad when Harvey said ‘Mum, it hurts to breathe’” recalls Sallie.
The GP sent them straight to the closest hospital, and next thing she knew, Sallie’s world had been tipped upside down.
Harvey’s blood results indicated he had cancer.
“I was taken into a room while Harvey stayed with the nurse. I’ll never forget that poor doctor’s face. The empathy and sadness in his eyes when he had to tell me “I’m so sorry.... We think Harvey has leukaemia”.
Harvey was diagnosed with High-Risk T-Cell Acute Lymphoblastic Leukaemia, a rare form of blood cancer.
Scans also showed Harvey’s heart had been pushed to the right side of his body, his left lung had completely collapsed and there was a build-up of fluid and cancer cells collected between his chest wall and lung. He was transferred by helicopter to the nearest children’s hospital where he underwent emergency surgery to drain his chest and begin intensive treatment for his cancer.
After his surgery Harvey was placed in an isolated area of the Intensive Care Unit as doctors feared he wouldn’t survive.
“I was in complete shock,” recalls Sallie. “Then I went into robot mode which enabled me to stay strong for Harvey”.
Sallie was in her first trimester of pregnancy at the time with youngest son Archie. Her daughter Amelia was just one year old when Sallie and Harvey were whisked away in the helicopter, causing them to be separated for the very first time.
Separated by distance, and ongoing Covid restrictions, it was a hugely difficult time for the whole family.
Thankfully Harvey recovered sufficiently to be moved out of ICU but would go on to spend over 400 nights away from home. When Sallie gave birth to Archie, who was born profoundly deaf, she did so at the hospital next door to Harvey’s. And when Archie was ready for his cochlear surgery, they were still at the children’s hospital with Harvey, so he had it there too.
Over his 400 days in hospital Harvey would undergo a series of painful and distressing treatments including 12 rounds of chemotherapy and 2 weeks of daily radiation.
For Harvey it was a particularly traumatic time. Unlike 95% of children with his condition, Harvey did not go into remission after his initial treatment so his ordeal was ongoing. His treatment affected his mental health and weakened his body. Devastatingly, Harvey also lost his best friend, who had been receiving treatment and living next door to Harvey on the ward for six months prior to his passing.
Despite Harvey’s heartbreaking experience however, Sallie says Harvey has fond memories of his time in hospital, and in fact is always excited to go back for his ongoing appointments!
And whom does Sallie hold responsible for Harvey’s hospital good vibes? Captain Starlight of course!!
“Starlight is magic!” she says. ”The first thing I realised when they came to visit Harvey was we hadn’t laughed properly like that in avery long time."
”Over the course of his treatment, Harvey spent Christmas, Easter and two of his birthdays in hospital. Often, ongoing restrictions would mean that no-one could visit, so Captain Starlight stepped in to create all the fun, laughter and happiness of these special days for Harvey."
When he was able to visit, Harvey just LOVED the fun of the Starlight Express Room. The games and the crafting table were a big hit with Harvey, and for Sallie, the opportunity to grab a coffee and have some respite, knowing Harvey was happy and occupied, was a huge help in getting her through their hardest days.
After such a painful and traumatic experience for them both, Sallie could not be more thankful for the difference Starlight made to their time in hospital, or for those supporters who help make that happen.
In Sallie’s words;
“Thank you from the bottom of my heart for caring so much and giving so generously. My son has been through such a traumatic experience and yet he loves hospital! Amongst all the pain and sickness he suffered, there was enough fun, laughter, love and support for him to take away that hospitals are good! Hospital would be horrible without Starlight.”
