December 29 2024, two hours after we brought our third baby home from the hospital, Lee went up to the doctors for a follow up appointment as he had been “feeling off” the entire Christmas period. They took him to hospital in an ambulance with suspected sepsis. Blood tests, a CT scan and (unsuccessful) antibiotics later he was sent home. He was admitted into hospital twice more over the next three weeks, eventually ending up in ICU. While in ICU they managed to stabilise him enough to perform a biopsy and the following week a PET CT. This confirmed the least likely diagnosis: peritoneal mesothelioma, advanced and extensive, in multiple lymph nodes in the abdomen and thorax. Lee was 38 with no known asbestos exposure.
Lee started palliative chemotherapy on 12 February. With him starting treatment, we thought he would get better but he got steadily worse. He could barely walk or hold a conversation. We felt hopeless and it was like he was fading away before my eyes. We were taking it day by day but didn’t know how many days we would have left.
After the third round, which included immunotherapy, three blood transfusion and various procedures to alleviate symptoms, Lee turned a corner. His appetite came back, and energy levels steadily rose. He went back to work with an electric wheelchair, which gave him more focus. We could begin to joke again.
From here, he improved with each round.
That takes us up to now, 10 months since diagnosis, and 13 rounds of combined chemotherapy and immunotherapy. Lee’s latest scan shows something we never dared hope could happen: a near complete metabolic response. There are no active sites anywhere but the primary site, where the uptake was below background and so can be considered inactive.
Moving forward, Lee will have 6 weekly immunotherapy and periodic scans. He is (ironically!) healthier than he has ever been and we feel infinitely blessed to be here.
In February Lee didn’t know if he would be around to see his youngest child turn 1 and, while no one is promised tomorrow, we are hopeful there are many more tomorrows ahead of us 🩵
Lee the day our third child was born, two days before his first hospital admission:
March: back in work as a teacher, in his wheelchair and 25kg lighter than in December.
Now:
