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Isabella started to complain of backache at the beginning of March 2018. She said that she lifted a classmate, so I gave her some paracetamol.
Around two weeks later on the 15th of March, it was very cold and we were walking to go to school when she told me that both her legs were too painful, so that day I booked an appointment with the GP. The GP said that we should see an orthopaedic. However, on the 7th of April, we still did not get the referral and Isabella, following a sneeze, started to scream.
Whilst in Italy visiting family, we went to A&E and, following an MRI, we discovered she had four broken vertebrae. At the time, the possibility of a solid tumour was excluded, and the doctors were investigating for juvenile arthritis and tuberculosis of the bone. Two bruises were found on her legs, but they were consistent to a toy horse that she used to play with. Also, Isabella had what did look like an infection, so antibiotics were prescribed.
We were allowed to go back home on the 14th of April, when we were approached again by the GP that requested some bloods to be taken. It took 10 days to get the blood taken and get the results and still nothing happened.
On the 30th of April, Isabella was at a point where she could not walk anymore and was vomiting from the pain. We went to A&E in Southampton, where a paediatric oncological centre is available. We first saw the spinal doctor, then within 12 hours we saw an oncologist and we heard for the first time the word ‘leukaemia’. Isabella underwent a bone marrow aspiration to confirm the diagnosis and she started the UKALL2011 protocol A. However, after two weeks, when we got the results of the cytogenetics that discovered that she had acute lymphoblastic leukaemia (ALL) IAMP21, she was moved to Protocol C, the strongest protocol, with the hope that she could reach remission by the end of Consolidation, otherwise a bone marrow transplant would become our next plan.
Induction was very hard for Isabella, her bones were already hit hard by the leukaemia, which caused her excruciating pain with the steroids she had to take for 35 days. She could not walk at all; she also could not drink water as the taste was awful, so she drank only milk for the first few weeks. This caused hyperglycaemia, so we had to prick her and give her insulin. This, however, caused the opposite effect, so we decided to fight the problem changing food and we found the solution was to give her almond milk that is very low on carbs.
At this point, Isabella started to lose her hair and develop a temperature that we could not fight nor identify the cause. After around 22 days she started to feel better and we were allowed home. Consolidation chemotherapy was very hard for her as she vomited a lot and she lost a lot of weight. She did look like a ghost. However, at the end of Consolidation on August 18th, we were told that Isabella was in remission and we could continue with the standard Protocol.
Interim Maintenance was a breath of fresh air. Isabella tolerated methotrexate very well and her hair started to come back. She also had her nasogastric (NG) tube removed; that was causing her a lot of psychological pain and she has taken all her drugs via mouth since. We entered Maintenance in January 2019 and we will be finishing it, if all goes well, the 4th September 2020.
Cycle one of Maintenance was hard. We struggled to find the right amount of mercaptopurine (6MP), but after further tests reducing the amount, Isabella’s numbers started to be under control and at the end of that cycle she returned to school. We are now five weeks into cycle two and Isabella has been going to school full time. There is a physical pain associated with leukaemia, but for Isabella the biggest effect was psychological – she could not go to school, she was embarrassed by the NG tube and the loss of her hair. I thank God that, being only eight at diagnosis, for Isabella the word ‘leukaemia’ did not mean anything in particular, so we could avoid all effects caused by the association with the words ‘leukaemia’ and ‘cancer’.
Doctors have always been very sensitive on the topic. They said that leukaemia is treatable, but they never considered it a good cancer. Leukaemia is a cancer and it is terrible. However, other people were insensitive; for instance, Isabella has short hair at the moment so people that do not know hardly realise that she is sick. A few weeks ago, we had remarks for parking in a disabled car park by a person telling me that I should be fined for using a disabled car park being all well. I just ignored them, and Isabella did not realise what was going on, but that was incredibly disturbing.
It took over a month for Isabella to be diagnosed, because vertebrae fractures were not associated with leukaemia. It is important that people and GPs realise all possible symptoms in order to identify the problem as soon as possible. When you have acute leukaemia, even a day can count.