Stanley's Story

In December 2023 our beautiful boy, Stanley, was diagnosed with T-Cell Acute Lymphoblastic Leukaemia at just six years old.

In the lead up to his diagnosis we were told a range of reasons for his symptoms and illness.
It all started at the end of November ‘23 when Stanley experienced chest pains. We took him to the drs, where he was checked over and the dr wasn’t concerned.

The week before he was diagnosed, Stanley really went downhill and we began a real battle with many doctors to get them to listen to our concerns. We visited our GP surgery and A&E at our local hospital, Russells Hall a further 4 times that week, each time being sent away with different reasons for his symptoms such as a nasty flu, a viral infection, an ear infection, even constipation. I asked a Dr in A&E if Stanley should have a blood test as I was really concerned but he declined and sent us away.

By the time one Dr finally took us seriously, Stanley didn’t look anything like his usual self. He was extremely lethargic, he had pains in his legs, his face and eyes were really swollen and bruised, his stomach was extremely hard and swollen and it also had a purple rash on it.

We were sent straight to the peadiatric ward at Russell’s hall Hospital where Stanley was seen by many drs on the ward and they couldn’t put their finger on what was going on with him. After a really distressing day of x-rays, ultrasounds, many blood tests, two drs came to see us to tell us that Stanley’s blood results in their words “weren’t good” and that it was more than likely that he had leukaemia and we would be needing to go to Birmingham Children’s Hospital.

Our whole world fell apart in that moment. We knew he wasn’t right and we battled for a blood test, but the news really hit us hard. We spent the night at Russell’s hall hospital with Stanley having blood and platelet transfusions as these were dangerously low. Stanley was blue lighted by ambulance to Birmingham Children’s hospital the next day where our road to recovery began.

We were met with the kindest drs and nurses on the Oncology and Haematology ward who sat with us and explained that Stanley was very poorly and gave him an official diagnosis of T-cell acute lymphoblastic leukaemia. We were also told that Stanley’s liver and spleen were extremely enlarged, he had a large mass on his chest, he had fluid on his lungs and that one of them had collapsed. Stanley at that point was too unwell to go to theatre to have a central line fitted so we had to rely on many cannulas in his arms and hands until he was well enough for surgery.

Within a few hours of being on the ward, Stanley was experiencing breathing difficulties so we were moved to intensive care. It was the scariest time of our lives but Stanley was cared for so well and within a week, he was well enough to go back to the ward where we spent the next month and he was eventually able to have his central line fitted and his first bone marrow aspirate biopsy. We spent all of Christmas in hospital and the most amazing team on the ward made it as special as they could.

Fast forward a few months of steroids, infusions, chemotherapy and many hospital trips and stays at BCH and also shared care at Newcross hospital (who were also amazing), we were told that Stanley was fighting so hard, but his cancer was aggressive and not responding to treatment as quickly as they’d like it to, so it was highly likely that he’d relapse if he went onto maintenance treatment. Therefore they thought Stanley’s best chance was a stem cell transplant.

Again, a new journey began with us all having bloods taken for tissue typing aswell as a search for a donor on the SCT register. It took a lot of getting our heads around that! Luckily, Stanley’s younger sister Betsy, came back as a perfect match for Stanley! Drs weren’t sure at first whether to use her, due to her small size, but they decided it was Stanley’s very best chance. It was also hard for us knowing we were putting her through a procedure. Luckily, she was absolutely fine!

In April this year, Stanley started his conditioning treatment of chemotherapy and radiotherapy to destroy his own bone marrow and immune system. Betsy amazingly donated a whopping 8.1 million stem cells and Stanley revived those cells as a fresh transplant the day after! After spending 10 weeks in total on the Stem Cell transplant Ward, Stanley was able to come home and we received the best news that he was in remission!

There have been many ups and downs and we still have our hard days but Stanley is doing well and we’re hoping he’ll be back at school really soon! He is currently monitored weekly in the stem cell transplant clinic and the whole team at BCH have been phenomenal in ensuring he receives the very best care.

Thank you so much for allowing us to have this break, we’ve had quite the year and your generosity means so much. We’d love to be able to ‘give back’ like you do in the future. Thank you again.

Kind Regards,
Claire (Stanley’s mum)