Fundraiser for children and young people with cancer

We share our story to help illustrate our experience of leukaemia and the vital work these charities do to improve outcomes and support for children with cancer. 

After feeling a little unwell over Christmas 2022 and not improving, we took Joseph back to the Drs where blood tests were requested. Following abnormal results at Wythenshawe Hospital he was transferred urgently to Royal Manchester Children's Hospital. The next day we received the devastating news that Joseph had acute lymphoblastic leukaemia (ALL), a form of blood cancer.  

The next six weeks passed in a blur as he began induction treatment: this included the insertion of a central line, intensive chemotherapy, high-dose steroids, lumbar punctures and blood transfusions. With George just two months old at the time, we moved into on-site hospital accommodation and focused on the practicalities of managing day-to-day life for us all.  After five weeks in hospital Joseph was able to come home and continue his treatment as an outpatient. It was a great relief to have the family back home together, but daunting as the reality of how our lives had changed overnight following the diagnosis, and the intensive three year treatment plan ahead, sunk in. The possible side effects of the treatment were extensive and those most keenly experienced by Joseph included changes in appetite, nerve pain, reduced mobility, lethargy and hair loss. 

Six months into treatment Joseph displayed slurred speech following intrathecal (spinal) chemotherapy which required urgent investigation and monitoring, thankfully this resolved. Fourteen months into treatment we faced a relapse scare and endured three weeks awaiting additional tests that fortunately came back clear. In his final four months of treatment Joseph developed sudden onset neurocognitive processing difficulties linked to the cumulative effects of chemotherapy - this was possibly the most difficult phase since diagnosis, but thankfully this subsided after treatment finished. 

Alongside side effects the treatment for leukaemia involves immune suppression resulting in frequent illnesses due to infections. With his limited immune system we were required to attend A&E within an hour of a fever presenting because of the risk of sepsis. These sudden and unplanned upheavals of life were disruptive and frequently resulted in the disappointment of missed school plays, friends parties and family activities. A&E waits before inpatient admissions were tiresome and challenging whilst trying to juggle work and childcare. 
  
In total, Joseph spent 1,155 days undergoing treatment, including 105 nights in hospital across 22 separate admissions. He attended 89 hospital appointments, received 41 intravenous chemotherapy treatments and underwent 16 intrathecal lumbar punctures. He spent 220 days on steroids and received more than 3,000 syringes of medication. During this time Joseph missed 6 months of nursery and 89 days of school (32 planned days and 57 unplanned absences). Despite this, Joseph's treatment was considered straightforward and many others experience more life altering effects.

Throughout his treatment Joseph has been incredibly resilient, starting pre-school and now finishing Year 1 alongside all of this and we are immensely proud of him. We are extremely grateful for the care and expertise we have experienced and for the research that has helped make Joseph's positive prognosis possible. For these reasons we want to raise money for two charities that make an enormous difference to families and children facing leukaemia.  

Children's Cancer and Leukaemia Group (CCLG) funds vital research aimed at improving outcomes for children with cancer. This is particularly important to us because advances in research have already transformed the outlook for children diagnosed with ALL, improving from just over 30% to over 90% in our lifetime. However, there is still much more to be done to develop increasingly personalised treatments and reduce the short and long-term side effects experienced by young patients. Samantha now volunteers as a parent reviewer for CCLG research proposals, helping to advocate for the experiences and priorities of families to be reflected in future research.  

Young Lives vs Cancer supports children and families as they navigate the challenges of childhood cancer. Their specialist social workers provided both emotional and practical support during one of the most difficult periods of our lives. From helping us process the shock of diagnosis to advising us on services and support available to our family, their guidance had a meaningful impact on our lives.  

Thank you for taking the time to read Joseph's story and for any support you are able to give. Every donation will help support families facing similar challenges and contribute towards improving outcomes for children diagnosed with cancer. Please see the updates below for photographs that help tell our story.