Lila’s Pink Bunny Fund is a CCLG Special Named Fund raising money for research into anaplastic large cell lymphoma (ALCL). Lila was eight months old when in June 2017 she was diagnosed with ALK-positive ALCL.
Lila’s mum Julia shares her story.
I was on maternity leave when one day Lila started spiking temperatures. After five days of persistent temperatures, I decided to take her to A&E. I knew something was wrong, but nowhere in my mind did I think it could have been cancer. From there onwards, what unfolded was hell.
It’s fair to say that should we have taken her a few days later, she perhaps wouldn’t be here today. It took two weeks to diagnose her and she was deteriorating by the hour. I saw my precious little baby become unwell very quickly and we felt helpless. I thought she wouldn’t make it. It’s strange to think that on the day we were told she had cancer, her dad Phil and I actually felt relief. We finally knew what she had and we could start treatment to make her better.
Lila’s journey has been far from easy. From the start we were told that ALCL is extremely rare in infants. Therefore, she was a high-risk case with a poor prognosis. To complicate matters, Lila progressed three cycles into frontline treatment. Her disease was not responding to standard chemotherapy. This was chemotherapy that had given her horrible side effects and complications. These included mouth sores, skin infections, bleeding nappy rash, gastro-intestinal symptoms, and more. So, she had not only suffered horribly for three cycles, but it wasn’t even working!
The only curative option for her at that stage was to attempt a bone marrow transplant. Lila was put on a combination of chemotherapy and target inhibitors to bring her again into remission and, in March 2018, she received the stem cells from her donor - her only match. Sadly, she relapsed again two months later. This time her disease was accompanied by central nervous system disease. That is, disease in her spinal fluid and brain.
At that point, her prognosis was really poor. The initial attempts to stop the spread of the disease made her critically ill but she recovered and was able to receive more treatment. Lila’s been on cancer treatment ever since. She’s been in remission since November 2018 but as she’s high-risk, an interruption of treatment may increase the chances of a new relapse. There’s statistically a 1% chance that she may be cured and the rest is hope. We may have to treat her cancer as a chronic illness or stop treatment some day and wait and watch.
It’s entirely our decision as parents, but it’s a decision that no parent should ever have to make.
Lila is now over four and half years old. She’s spent all her life on cancer treatment, having to attend hospital several times a week, having to be admitted regularly for temperatures, needing to have multiple interventions and tests. For almost three years she lived with a nasogastric tube, being fed formula milk as she wouldn’t eat. She had several central lines (Hickman lines) inserted and removed, which didn’t allow her to bathe or play as any other child could. An adult would struggle coping with all of this, but she got on with her toddler life, smiling and playing.
It is comforting to know that she doesn’t remember the worst and sometimes asks why in her baby pictures she has a tube. Today, she thinks going to hospital is normal, and she helps the nurses access her portacath and do her finger pricks for blood tests. Lila started nursery a year ago and will start school in September 2021. She loves having friends and we love seeing her developing into a happy and confident child.
She is truly remarkable.
However, Lila is an outlier. There aren’t statistics that apply to her. Our clinical choices are guided by consultation with international experts, the little evidence available on kids who relapse multiple times, the drugs available, their side effects and our sense of what’s best for her and her wellbeing. As parents we spend a substantive part of our time doing research on ALCL and its treatment. If it wasn’t for new generation target therapies Lila wouldn’t be alive today. And yet, little is known about the effectiveness of target therapies in children and whether they can bring long-term remission.
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 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.
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Text CCLGLILA to 70085 to donate £5.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Lila's Pink Bunny Fund so that your donation is allocated to the correct fund.