When Libbie was 13, she was diagnosed with leukaemia and subsequently went through a six-month period of intensive chemotherapy treatment. After that, she had a course of maintenance chemotherapy, before eventually returning to school. However, in August 2018, Libbie became unwell once again, and found out she had relapsed.
This time, the leukaemia had spread to Libbie’s brain fluid as well as her bone marrow, and so she began another course of intense chemotherapy in preparation for a bone marrow transplant. On the day she started brain radiotherapy, Libbie played piano at the St James Hospital Christmas Concert, she had practised on an electric piano brought into the ward and did an outstanding performance.
Prior to the transplant Libbie had an ovary removed and had a gastronomy tube put in.
Libbie’s bone marrow transplant took place four days before Christmas. To add to this challenging time, Libbie also became very unwell with swine flu. She finally came out of hospital in March 2019 after 4 months in isolation.
Despite being fed through her stomach and having a Hickman line in (a silicone tube that goes under the skin into a vein in the chest), and after missing 2 years of school, Libbie was determined not to fall back a year at school, so she taught herself at home. Libbie achieved 4 GCSE’s passing with 9s and 7s and was later accepted into 6th form to take her A levels.
Going to camp!
Libbie had looked forward to her family attending camp for some time, and in September 2019, they attended the Over The Wall Anthony Nolan Family Camp. “Camp was the first time Libbie had been on any kind of social outing, for over a year- and she was really ready for something like that.” said Libbie’s mum Susan. “She had spent so long in isolation and had been so poorly for such a long time, and so camp came at a great time for her and for us all for that matter.”
“We all had an absolute ball. It was great for us to just get away.” adds Susan. “We had so much fun, did loads of fun activities, from climbing on the hay bales to laser quest -we did so much, in fact, we didn’t stop! And the food at camp was amazing. It felt so good to see Libbie eating so well, as her appetite had been so poor. The volunteers that were with us were also brilliant, and we all became great friends -it was a really wonderful experience.”
“It was also a great opportunity to meet other families who had children who had recovered from a bone marrow transplant. Before camp we only knew of two children- one had died in hospital and the other had survived. The child who lived was just 12 months ahead of Libbie – so in our heads, we had always thought that Libbie had a 50-50 chance of living. Meeting other families that had been through what we had, really reassured us, and changed the way we thought about everything.”
“We are friends with a couple of camper families now. It was such a positive thing to meet other people who had experienced what we have. Libbie’s chimerism had dropped and the bone marrow donor gave more cells that Libbie was having every 6 weeks and we met another family who had similar experiences- so we were able to ask questions and get advice and guidance- that is such a positive part of camp.”
“I remember when we arrived on the first night- seeing everyone doing the Waka Waka dance, we thought ‘we’re not doing that!’ By the last night we couldn’t stop dancing- and we still do the Waka Waka dance at home! Camp has been a wonderful thing, for our whole family.”