Oscar started showing symptoms with a rash on his chest that appeared to be a typical viral rash - red and blotchy. However, we decided to take him to our GP when he spiked a temperature. The doctor checked him over and told us that his ear was inflamed.
The doctor prescribed antibiotics and sent us home. Oscar seemed relatively well the following day, but as I went about my daily routine, I noticed a pinprick purple rash on his eyelids. On closer inspection, I saw the rash on his chest.
I started to worry because it was non-blanching, so I called my GP. They saw him right away and advised us that he needed to be checked by a paediatrician but not to be overly worried. I called my husband and made my way to our local hospital. When we arrived, I checked Oscar in, and due to his temperature and rash, the doctors told us he needed a blood test.
Diagnosis
The medical team quickly cannulated him and took blood samples. It was late at night, and the usual time for the results to return came and went without any updates. We were left waiting all night. Then, at 10:30 the following day, a doctor asked if she could speak with us in another room while a play worker stayed with Oscar. As we entered the room, I noticed a box of tissues on the table, and my heart sank. The doctor informed us that our son had suspected leukaemia; it felt like my world had ended.
From that moment, everything became serious. A blue light ambulance transferred us to the local children's cancer treatment centre. When we arrived at Sheffield Children’s Hospital, they placed us in our own room. The consultant then came to see us and explained Oscar’s diagnosis.
Treatment
During the Jubilee weekend, the hospital was operating with bank holiday staff. As long as he remained stable, they planned to delay starting his treatment until Monday, but they started him on hyper-hydration in the meantime. Beginning on Tuesday, his treatment intensified significantly. He had a portacath fitted, started chemotherapy and had a nasogastric (NG) tube inserted.
He needed scans and investigations, which he took in his stride. He asked lots of questions and wanted to see everything done to him. He became a little celebrity on the ward. Our initial stay in the hospital lasted just over two weeks. The staff were fantastic, not only with Oscar but also in supporting me, my husband and our other three children.
Since completing his initial induction block, Oscar has finished consolidation 1, 2, and delayed intensification. During consolidation 2, Oscar experienced a severe allergic reaction to one of his chemotherapy drugs, which led to a frightening 999 emergency call and a hospital stay. This reaction meant a change in his treatment plan. Doctors introduced a new drug, which required Oscar to visit the hospital every other day for 28 days.
After doctors performed a bone marrow aspiration, they found no visible leukaemia cells, and they downgraded him from intermediate-risk to standard-risk. This was amazing news, but it also brought fear as we had to make new decisions about his treatment. We'd just learned about the treatment Oscar would receive, but since we had signed up for the ALLTogether1 trial, we now had to decide whether to allow randomisation. This study aims to determine if standard-risk children can safely receive reduced chemotherapy while achieving the same outcomes. After days of sleepless nights and extensive research, we decided to allow him to be randomised. He was chosen for the reduced treatment option. Although this was scary then, we believe it has positively impacted his overall treatment.
The oral chemotherapy drugs he needed to take reduced his appetite and caused nausea. As a result, he required a lot of anti-sickness medication and nutrition through NG tube feeds. The first time I gave oral chemotherapy, I felt very anxious. I almost felt like I was poisoning my child. However, it quickly became part of our new normal routine.
After treatment
Oscar has completed his treatment for ALL, but it's not been an easy journey. Throughout maintenance, he picked up several serious infections, including respiratory syncytial virus (RSV), line infections and many other seemingly simple infections that wouldn’t pose a concern to the healthier population. These infections led to hospital stays lasting several days or even weeks. Seeing my child needing oxygen support, wired to drips, unable to stay awake and shaking with high temperatures was very difficult as a parent. Despite this, the support and care provided by the staff were nothing short of exemplary.
Oscar started primary school while still undergoing treatment, which was a very scary time for us. However, the paediatric oncology nurses provided invaluable support during his transition to school, ensuring his needs were well understood and that he received the best possible care. Oscar was mostly absent from school due to the risk of catching illnesses from others rather than being unwell himself. Nonetheless, the open lines of communication between the school and us have been vital. This strong partnership has been key to Oscar’s success at school - he's made friends and kept up academically with others.
Since finishing treatment, we’ve been supported by psychology services to help Oscar transition back to normality and to support us as parents in taking back some control. During treatment, Oscar was always very compliant and a model patient, but this often meant we needed to encourage him with gentle persuasion or gifts. When his treatment ended, Oscar found the transition hard. He wanted to take back some control for himself - something he hadn’t had for a long time - and we had to learn how to support him while taking back some control for ourselves.
The psychological support we’ve received has been amazing, and no one should ever feel ashamed or worried about seeking help from a specialist. Reaching the end of treatment and facing the unknown was just as challenging as starting treatment in many ways. Losing the safety blanket of the hospital when Oscar became poorly was very challenging. However, six months on, we're working through these challenges and looking forward to taking our first family holiday abroad in seven years.
The treatment for ALL often feels like a mountain to climb, with no clear summit in sight. However, advancements in medicine throughout my lifetime show that we can conquer this mountain. I am forever grateful to the fantastic staff who cared for Oscar - the remarkable consultants, doctors, nurses, support staff, play workers, cleaners, administrative staff and social workers - they are true angels.
We’ve also connected with other parents, supporting one another through our journeys. This support has been invaluable, providing me with an outlet during tough times. We’ll forever be grateful for the support and care we’ve received.