In a generally happy and healthy child, the thought of Amelia’s symptoms being leukaemia was not likely.
As a baby, Amelia was covered in red spots, but our GP could not tell us what this was a result of. We were told to go home and not to worry about it. But how could we? We couldn’t sit still knowing something just wasn’t right.
So, we visited our paediatrician who had been to a conference in London which referred to a new benign version of JMML that had been discovered. She felt it related to Amelia and her symptoms, so we were referred to the Great Ormand Street Hospital (GOSH) for a bone marrow biopsy.
The bone marrow test confirmed our suspicions; Amelia did in fact have an unusual version of JMML. More to the fact, Amelia had a version of JMML that only three children in Europe, including herself, had.
We were told Amelia would not have chemotherapy, and that we should wait to see what would happen. But, why should Amelia not have chemotherapy? It didn’t make sense. The only concrete advice we were given was to take her home and make sure she got plenty of greens!
When Amelia was 16 years old, she was finally discharged from paediatric care; something I insisted she would stay on until she was that age. However, not long after she began to experience bone pain. After confiding in her GP, she was told this was a symptom of her menstrual cycle.
After a family party, Amelia woke at 3am with a fever, shaking, severe abdominal pain and vomiting. We rushed to A&E where they took bloods and told us they suspected the leukaemia had returned. At first, they believed it was acute myeloid leukaemia (AML); they had never seen someone with a history of a myeloid leukaemia then develop as a lymphocytic leukaemia later on. But, that was in fact the case, and she was diagnosed with ALL which caused further confusion to her care.
As a parent whose career was spent largely in the NHS, working with doctors, complaints and good practice issues, Amelia’s care has been my focus. No one could tell me what her long-term outcome would be like with the rare version of JMML. I was constantly told that such few people were diagnosed with her leukaemia.
The conflict from Amelia’s diagnosis has been extremely difficult to navigate. JMML, which at the time only had a 50% chance of success if chemotherapy and a transplant was given, was a strange and bizarre situation to explain to others, as many knew that JMML left untreated is fatal. We could not risk Amelia’s life; every doctor we repeated her story to would listen, but then a seemingly blank expression would come over them and they would dismiss us.
As a parent, this has been an ongoing background stressor before her ALL. Since that, her treatment and clinical care during her diagnosis and relapse have been poor.
When it comes to your child, you want the best possible care for them and it is difficult to think they might not be receiving the care they deserve. As someone who has spent her career caring for others largely in the mental health arena, offering psychotherapy and counselling, it was a relief to find that Leukaemia Care’s Advocacy Service could support me.
Amelia is currently undergoing her second attempt at maintenance chemotherapy after her ALL relapse. She now, however, has a number of new illnesses attributed to her first round of chemotherapy treatment, such as severe peripheral neuropathy, chronic obstructive pulmonary disease (COPD), two brain bleeds and a compromised immune system.
Despite these effects, Amelia remains strong and we are incredibly proud of her. We will continue to advocate for her care, and as a parent, I will do whatever it takes to ensure she has the support she deserves.
Dee wanted to add…
“My interaction with Leukaemia Care’s Advocacy Officer was positive; I felt heard and supported. The team communicated with the Queen Elizabeth Hospital Birmingham (QEHB) on my behalf, advocating for timely responses and sharing my concerns. The Advocacy team was reliable in any commitments they had, and accommodated my various communications where I may have been simply speaking in frustration.
I felt reassured that the majority of the issues I raised were reasonable and she was able to dissipate some of my distress.
I would definitely recommend other patients and carers to make contact with Leukaemia Care if they are facing concerns regarding their or a loved one’s medical care. It can be a lonely journey to go on, and the recognition, advice and acknowledgement received from LC is invaluable.”
Leukaemia Care’s Advocacy team can help you navigate through a range of tricky problems you may be facing. Whether it be to bridge the gap between you and a healthcare professional, offer support and advice on clinical trials or help with a complaints procedure, the team is here to support you.
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