Bodhi was diagnosed with acute T-cell lymphoblastic leukaemia when he was five years old. His mum, Alice, shares his story.
It was an ordinary half term, October 2022. One Monday was spent trying to contain the energy pouring out of Bodhi and his 18-month-old little sister.
Bodhi came downstairs one morning complaining of a sore throat. The nodes in his neck were enormous and protruding, and his tonsils were almost blocking his entire throat. They weren't white, so I knew as a tonsillitis sufferer, something didn't seem quite right. I phoned the GP, but they couldn't see him until the next day.
That night was quite scary as his breathing was pretty laboured. The paramedic practitioner had assured us over the phone that it could wait until the next day, so we tried not to worry. We arrived to see the GP the next day, where the nurse practitioner took one look in Bodhi's throat and sent us straight to the hospital, calling ahead so they were ready for us.
I don't remember feeling particularly worried that day. There were lots of blood tests and meetings with the ENT team about removing his tonsils and adenoids. The next day, they planned to see him as an outpatient, and we were waiting for an appointment when paediatrics came to see us. They weren't entirely happy and wanted to do a chest x-ray and stomach ultrasound. After that, the world stopped for a bit. The consultants came to see us to tell us that a number of masses had shown up, one the size of a tennis ball in his chest.
We were to be immediately transferred to Bristol Children's Hospital for further tests, but it was not looking good, and then suddenly, they were discussing chemotherapy. I don't think I'd understood that they were talking about cancer until they mentioned the word chemotherapy.
We spent the next few weeks in Bristol. Bodhi had a major surgery where they removed his tonsils and adenoids because he couldn't breathe. They did a bone marrow aspirate, lumbar puncture, biopsy on the tumours in his neck and put in a PICC line as the Hickman was too dangerous, given the neck and chest tumours. He started treatment straight away with steroids and IV chemotherapy, and we received a diagnosis of acute T-cell lymphoblastic leukaemia.
I had to leave our other children at home with my husband, and I'd been breastfeeding our 18-month-old up to that point. It was a challenging and worrying time for everyone. Our oldest was in her GCSE year, and the youngest suffered from pretty severe separation anxiety. We quickly got into a routine where I would be in hospital from Sunday to Thursday, and then my husband came up for the day on Thursday and took over until Sunday.
It just always felt like we were in the wrong place. At home, it felt like we should be with Bodhi and in the hospital, it felt like we should be at home with the other kids. After a few weeks, we were able to transfer him down to our local hospital and then home, where he continues treatment as an outpatient.
We've hit pretty much every bump in the road, including potential blood clots, unexpected blood transfusions, and blood count not allowing chemotherapy to take place but we're remaining as positive as we can.
There's still a long road ahead for us and some intense periods of chemotherapy to come, but Bodhi is incredible. He's strong beyond any imagining, and he keeps us all going.
We're currently stuck on a 2-week chemo pause while we wait for his blood count to rise enough to have the final week of this particular block, and then it's a two-week break before an important bone marrow aspirate to see what comes next.
We've started an Instagram page (@bemoreBubbi), which has documented his story so far and allowed friends and family to support us along the way. One foot in front of the other, step by step.
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