Chester's Acute Lymphoblastic Leukaemia Story

A typical 4 year old boy

Chester was a typical 4-year-old boy. Bubbly, chatty, full of energy, and with a great sense of humour. It wasn’t long before he got ill that we were going to the zoo and playing in the park daily on our walks back from school. Chester first started getting poorly in February. He came back from school on the last day before half term with a red, swollen eye. He didn’t know how he had done it. It got so swollen he could not open it. After a trip to the doctors, they said it was infected and gave us antibiotics.

Unexplained pains and growing concerns

Throughout the week, he became quieter and not himself. Later in the week, he came in our room at night crying, saying his arm was hurting. It got worse daily, and then both arms were hurting, and he then couldn’t move them at all. He got a high temperature and became more unwell, and after a GP visit, we were sent to our local hospital to the children’s ward. Chester became worse and was literally screaming hysterically in pain if he had to move his arms. They did X-rays and blood tests and gave lots of Calpol, but couldn’t get to the bottom of it. To cut a long story short, over the week the pain was really bad for Chester; he was hysterical and screaming if anyone went to touch him, including me and his dad. One doctor still went and yanked his arms in all directions, even though he was screaming in agony. The pain seemed to move around his body as it then went to his legs, and he stopped walking. We were discharged and told they didn’t know what was wrong.

He was pale like a ghost

We had him at home just not being himself and not being able to walk or lift himself. But Chester couldn’t explain to us where the pain actually was and what it was, just that it hurt and kept moving. He had other weird symptoms of strange rashes, spiking temperatures, and being really tired and extremely pale. They finally offered an MRI after a week. They found a subtle swelling on his spine but didn’t know what it was. They said it definitely wasn’t neurological, but that his bloods were off and not normal. And the swelling wasn’t normal, but we could ignore it for now. They then said he had suspected arthritis even though his ultrasounds came back clear. But we were then discharged and left with the odd hydrotherapy session booked in to help his joints. They just kept saying he had a mystery illness and had never seen his symptoms in their whole careers. The whole time they just didn’t listen to us when showing them symptoms and how he wasn’t himself. He was pale like a ghost, had become extremely skinny, and lost his appetite.

One side of his face started to droop 

After weeks of being ill and poorly, having episodes of spiking temperatures, and not being able to walk or move his arms on and off, we took him back into the hospital as no one would talk to us or see us at the hospital. They said we could only speak to one consultant who had been off for weeks. So, we just turned up and finally got referred to another bigger hospital. When we got there, they didn’t know we were coming; no notes were sent over, and we were sat in the hospital for a week with no assigned doctor. We were supposed to get a second MRI scan for Chester, but they refused and said it wasn’t their department with his symptoms. One side of his face even started to droop, but nobody was interested. After being passed backwards and forwards between neurology and rheumatology, we saw a lovely consultant who asked how long Chester had been deathly pale and not himself. She got him straight in for an MRI. Unfortunately, they found several “masses” on his spine, eye, and kidneys. They originally thought he had neuroblastoma or lymphoma, and our world was totally destroyed.

The heart-breaking diagnosis

After being referred to the oncology team and several more tests, we got a diagnosis of Chester having the thing all parents would dread to hear, and that is cancer, and that it was leukaemia, and that he needed to start treatment straight away and have a central line fitted. It was like a whirlwind, and we were shocked and heartbroken. He hadn’t been himself and just wasn’t right for several weeks, but unfortunately, we were not being listened to and not getting a diagnosis at all and just told he was a medical mystery and that his bloods were not normal, but no clue what was wrong.

He is already more himself

Luckily we were persistent, and we saw the right consultant at the right hospital, and we finally got a diagnosis, although it wasn’t one we wanted to hear. It was also the last thing that crossed our minds, as cancer didn’t even occur to us, and we thought Chester had some sort of weird virus or infection, as the doctors kept saying they had never seen his symptoms. When he was diagnosed, he wasn’t his usual bubbly chatty self and didn’t even want to play with any of his toys, and it felt like our Chester wasn’t there. But he has now started his chemotherapy and treatment and is already more himself.

Our hearts couldn’t sink any lower

We were on a roll, and he was coming back as all low-risk with his ALL diagnosis. But then we got the devasting news that he had B-cell acute lymphoblastic leukaemia (ALL), but with the rare Philadelphia positive chromosome. Our hearts couldn’t sink any lower. This means that his standard treatment changed, and we were moved to a different protocol/clinical trial as the prognosis for people with Philadelphia Positive ALL had been very poor until the latest trials. But his treatment would have more side effects, be more intense, and have more potential to harm Chester.

We are very proud of him

I was heavily pregnant when he was diagnosed, and Chester has a new-born sister, Aurora, who is now 4 weeks old, and we also have another 16-month-old at home called Willow. Chester has just finished his induction part of his chemotherapy. He is soldiering along and being so brave. We are very proud of him. He will have a bone marrow biopsy next week to see how he is responding to the chemotherapy and to decide if he will go on the standard-risk treatment or the high risk which could end with a bone marrow transplant.

You can follow along Chester’s journey on our blog here: https://chestersjourney.com/

Laura, Chester’s mum, July 2024

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