I am fundraising to raise money for Lila's Pink Bunny Fund at CCLG, to fund research into paediatric anaplastic large cell lymphoma (ALCL).

Our daughter Lila was eight months old when in June 2017 she was diagnosed with ALK-positive ALCL. This is a rare and aggressive type of non-Hodgkin's lymphoma. The frontline treatment for ALCL is a brutal regimen of 6 cycles of chemotherapy called ALCL 99. Despite advances in science, this regime hasn’t changed in 25 years. Around 75% of children treated with this regime achieve long term remission. Sadly 25% don’t and many relapse multiple times or even die. Our daughter who is now 7 years old is one of these children, having relapsed 3 times already and after years of grueling treatment, is now deemed incurable. Children who relapse may opt to have a bone marrow transplant, which is not always successful and may entail life changing side effects, or be treated on a longer term with targeted inhibitors which, although they provide stability and good quality of life, are not known to be curative. We are lucky that this disease shares the same mutation as a type of adult lung cancer, as many of the drugs discovered for lung cancer can be used for ALCL. However, these drugs are not trialed in children so their effectiveness is unknown and are only given on compassionate use grounds.

Lila’s Pink Bunny Fund is named after Lila’s soft toy bunny Chewy who has been inseparable throughout her entire journey and has given her much-needed comfort and love. The fund aims at fundraising for research on ALCL, as we believe there’s an urgent need to support research and clinical trials aimed at investigating the effectiveness of new ALCL drugs in children. There’s an urgent need to support studies that can demonstrate that long-term remission can be achieved with drugs that are kind and don’t increase the risk of short-term and late effects.

Children are meant to live long lives. Cancer drugs need to make this possible.