Jessie’s leukaemia story: cancer free after four years

Four years after being diagnosed with a rare form of leukaemia, Jessie Stocks will be able to celebrate her fifth birthday in remission after ringing the bell signifying the end to her treatment at Sheffield Children’s Hospital.

Jessie was only a year old when she was diagnosed with Philadelphia positive acute lymphoblastic leukaemia, a rare form of cancer. After ringing the bell at the Sheffield Children’s haematology and oncology clinic in February this year, Jessie’s mum Mel has been reflecting on the past four years, she said: “It’s been a long rollercoaster that we never bought tickets for.”

Mel added: “I can’t thank the staff enough for supporting her. I wouldn’t have my Jessie if it wasn’t for the hospital – they all played their part. ICU, admin, the chaplain, the cleaners, the welcome desk. I can’t thank the people enough. The amount of hugs I’ve had from the cleaners – they just know. Ollie the surgeon, our consultants Ajay and Katherine. Sian, our transplant nurse, she went above and beyond. I have so much love for all of them. All the nurses became friends and family. They would take your mind off things, it felt like you mattered.”

Jessie came to Sheffield Children’s and was diagnosed with Philadelphia positive acute lymphoblastic leukaemia (ALL) in January 2016. She began treatment four days after her diagnosis. Acute lymphoblastic leukaemia (ALL), affects about 4 in 100,000 children per year in the UK. Less than 5% of these children will have Philadelphia positive ALL.

Her first treatment was chemotherapy, but the rarity of her condition meant that chemotherapy alone was ineffective, so Jessie needed a bone marrow transplant. Although Jessie’s family were not compatible, an anonymous bone marrow match was found soon after. Jessie went in to surgery for seven days in a row to receive high-dose chemotherapy to prepare her for the transplant.

Whilst recovering from her bone transplant Jessie’s body encountered numerous life threatening complications. She had graft versus host disease, where the donated cells and the new immune system attack the body’s own cells. She also had by RSV virus, adenovirus, Epstein-Barr Virus (EBV) and transplant associated microangiopathy that caused seizures, high blood pressure, kidney problems, and bronchiolitis obliterans. Any of these complications alone could be fatal for a child who is already poorly.

During Jessie’s treatment and a particularly difficult time, Mel went to the chapel at the hospital. She said: “All of the notes in the chapel had Jessie’s name on, all of them from staff. I knew then that she wasn’t just mine. She was yours, your hospital’s.”

As well as being recognised in the hospital, Jessie became quickly known all over the world after a social media post from mum Mel was shared internationally. Jessie received thousands of postcards containing well-wishes which decorated her hospital room.

After an intense period of treatment and 18 months in isolation on Sheffield Children’s oncology ward, Jessie was allowed to go home. This February, Jessie rang the bell at the haematology and oncology clinic to celebrate the end of her treatment.

Katherine Patrick, one of Jessie’s consultants, said: “Jessie took every day as it came and although it was difficult for the family as they couldn’t be together all the time, looking at her now you would never know what she’s been through.

“It’s seeing children who have been as poorly as Jessica was and then seeing them now looking well and living normal lives – that’s why this job is so rewarding.”

Mel talks fondly about the staff on the ward: “People have cried at their desks seeing Jessie now, she’s so different to when she was being treated here. Your whole hospital, even those who hadn’t met her, they all knew Jessie. It was that love that got me through. Staff would come to check on us daily. They became family. Our nurse Carly (Carly Bell) stayed three hours after her shift to be with us – she went above and beyond and even though she has kids of her own but she said ‘I’m not going anywhere.’ Carly stood in our room for six hours just rubbing Jessie’s back whilst I slept.”

Jessie doesn’t have a fully functioning immune system and will still need to have daily medicines and treatment at her local hospital monthly – but she’ll be starting nursery in September – a feat that the family didn’t think was possible.

Jessie and her family are also now keen fundraisers for the hospital, as another way of saying thank you, and are currently raising funds for The Children’s Hospital Charity’s ‘Build a Better Future’ appeal for the Cancer and Leukaemia Ward.

The Children’s Hospital Charity is fundraising a total of £2.75million to revitalise the cancer and leukaemia ward by opening up the space, bringing in more natural light, while providing more private spaces with en-suite facilities and more opportunities for parents to sleep comfortably alongside their children.

Mel said: “The ward is where people stay for a long time, we need to fundraise so we can improve the space to make it feel like a home from home for them. That would be amazing. For us, it’s just another way of saying thank you for the care Jessie had and to the staff who helped us.”

The family also took part in the Make It Better Day last year and Jessie was the face of the campaign, encouraging other supporters to join in with fundraising for the hospital. In total, the appeal raised over £10million, creating three world-class new wards which opened to patients in April 2018.