Ciara's mum Deborah shares their story.
Ciara was born in March 2011 with Down’s Syndrome and, despite some fears, she is our perfect child. She had a few health complications and needed a small heart operation, a tonsillectomy (due to sleep apnea) and there has been a couple of serious chest infections. But Ciara loves life and in September '16 she started Year 1 of her mainstream school and was flourishing.
In November '16 Ciara started limping and a few days later she couldn't walk so our local A&E admitted her with suspected septic arthritis. An adult orthopedic surgeon drained lots of fluid from her hip and operated on the joint. She was treated with high dose IV antibiotics for several weeks and seemed to be getting better (due to reduced pressure in her hip) but she was still in pain. So at Christmas we took Ciara to a Children's Hospital where we knew she'd be able to have an MRI. The paediatric consultant was shocked by the MRI and aspirated her hip again. Then Ciara stopped using her left arm and an MRI showed fluid in the humerus bone.. so her arm was drilled and drained too. Specialists scratched their heads (Rheumatoid, Infectious Diseases, Orthopedic). There had been no indication of cancer in her blood but eventually Haematology ordered a bone marrow aspirate 'just in case'.
On 21 January Ciara was diagnosed with B-cell acute lymphoblastic leukaemia and her bone marrow was 79% cancerous. She was blue lighted to the Royal Marsden in Sutton and her gruelling treatment of chemo and steroids began. We weren't allowed to leave the hospital for 5 weeks because of the extra problems kids with Down Syndrome experience. Myself and my partner tried to function, we tried to talk, we tried to tell people, we took it in turn to stay at home and feed the cat, we tried to understand what was happening......but there is nothing you can do to protect your child from cancer.
Leukaemia treatment comes in phases, each phase lasts six weeks or a month but the doctors only tell you what is going to happen a phase at a time. Some phases are worse than others. The first phase is called induction and it’s a gruelling combination of drugs. At the end of induction Ciara's bone marrow hadn't done as well as we'd hoped, so she was put on the longest and most intense protocol. It has taken a year to complete frontline treatment and she's needed many chemo holds due to side effects or infections. We've spent weeks at a time in isolation in our local hospital. Ciara couldn't complete the usually required course of one drug (methotrexate) as it endangered her life. This adds to her likelihood of relapse which is curretly a 30% chance. There are relapse options such as bone marrow transplant or immunotherapy but prognosis isn't good and we hope never to be there.
Ciara is now in the maintenance phase which means daily chemo, monthly steroids and still the occasional horrid lumbar punctures, but she's due to finish treatment in July 2019. She started back to school (for shorter days) and hasn't been an inpatient at hospital for several months. However, like most parents of a child with cancer the 'why' bugs me everyday. Our lives are forever changed. Via social media 'cancer kid parents' connect and we debate how to protect our children from relapses. We all have opinions about 'what / why' cancer might have occurred and so far science only has a few leads.
In the last 50 years there have been amazing improvements in the survival rates of children with ALL via the improved treatment regime, but we still use the same poisonous drugs, and increasing numbers of children are getting diagnosed. There are about 400 new diagnoses of ALL every year in the UK (children aged 0 to 14 years) and currently about 1 in 10 of those children will die.
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