chat
Zara was three and a half years old when we first noticed a bruise had seemed a little dark. Being well in herself, we thought we would just keep an eye on it.
A few days later she woke up one morning with a swollen face. Thinking that there was something not quite right, I took her to the GP. The doctor was unsure what it was, so he called in another doctor. The other doctor said it looked like she had fallen over, and as she wasn’t poorly, told me just to take her home and keep a good eye on her. They did not perform any other checks.
Two days later on 12th February 2016, the swelling on her face had gone down, but she became very poorly. She had a very high temperature, was floppy and lethargic, and a red spotty rash appeared all over her body. It looked very similar to the rash you get with meningitis as it did not disappear when we rolled a glass tumbler over it. As soon as the rash appeared, we rushed her down to A&E at Ipswich Hospital. She was kept at the children’s ward overnight and a lot of tests were run. The next morning, we were told the devastating news that Zara had leukaemia. We did not know which type at this point.
Zara’s blood levels were very low, so she was given a blood and platelet transfusion straight away and then later that day was transferred over to Addenbrookes Hospital, onto C2 ward.
While at Addenbrookes, they did more tests to find out the type of leukaemia she had. It was found to be acute lymphoblastic leukaemia (ALL).
They started chemotherapy a few days after she arrived and told us because of her age, the type of cancer, and the amount of cancer there was, that her prognosis was good. Unfortunately, a few weeks after chemotherapy started she got a high temperature and an infection called Pseudomonas.
She then became very poorly, to the point where she wasn’t sleeping due to an open sore on her bottom, and she found it hard to breath as her lungs were beginning to fill with liquid. She was then transferred to Intensive Care and they discovered she had not one but a few infections. Her chemotherapy was stopped early, and she was put in an induced coma to allow her body to recover and to try and control her breathing.
She was in an induced coma for about three weeks. Over that time, they used all the top-shelf antibiotics to try and give her body a chance to fight the infections. After two weeks we noticed that her swelling, hard skin on her chest and open wounds were starting to heal. It was then decided that she needed a tracheostomy fitted as she would be ventilated for a long period of time. Once fitted the decision was made to dial-back her morphine, and sedation. She also had a severe allergic reaction to an antibiotic called meropenem which was given too fast in a bolus injection. Fortunately, she recovered from that quickly.
During her stay in PICU we got the news that, even though she had only completed part of her induction phase of chemotherapy, she was in remission.
As the weeks passed and she was slow getting better, she was eventually moved to the High Dependency unit. At this point, she still couldn’t move much or talk, she just nodded or shook her head.
It was there at the HDU where she had to learn to walk again, start eating solid food again, learn to talk with a tracheostomy and generally get stronger. She was also being weaned off of many drugs including morphine. She was slowly having longer and longer of periods of time off the ventilator. Chemotherapy was then started back up once Zara was strong enough.
Finally, we were both trained up on tracheostomy care and emergency tracheostomy changes and sent back to C2, by which point Zara was no longer on the ventilator but still had the tracheostomy fitted in case she deteriorated again. While on C2. she had an operation to have a Hickman line inserted.
In September 2016 after 200 days in hospital, Zara went home having finally completed all of her intensive chemotherapy. In the October she had her tracheostomy removed and started school.
Zara carried on with maintenance chemotherapy and weekly bloods and check-ups with the Ipswich team, and every three months a visit to Addenbrookes for a lumbar puncture under general anaesthesia. She also had regular physiotherapy.
Once home, we had a few setbacks and a few stays at Ipswich Hospital for high temperatures. About seven months before treatment was due to end, her Hickman line was removed after it had continued to become infected. Blood tests were then done by finger prick and IV chemotherapy given by having to insert a cannula each time.
On 14th May 2018, Zara rang the bell for the end of treatment and, apart from a few high temperatures, Zara is doing really well. She celebrated her 6th birthday in June and now only has check-ups once a month. She now just needs to have plastic surgery to cover her tracheostomy scar.
It is so important to be aware of the symptoms for leukaemia as it is pretty simple to spot and diagnose. Early diagnosis increases your chances of survival as with every cancer.
Zara in 2021
Zara finished treatment in May 2018 and is now down to checkups every six months. She’s now eight years old and is doing really well – she has had no further health problems so far since finishing her treatment. She has almost caught up at school and will be going into year five in September. She now does karate three times a week and enjoys walking her dog Leia at the weekends.
Zara’s diagnosis did not just effect Zara, but it affected the whole family. From the day Zara was diagnosed it turned our whole family’s world upside down. I think it affected everyone’s mental health in some way. Zara spent seven months in hospital when she was first diagnosed. Myself and my husband took it in turns to be at the hospital so that someone was always with her. The hospital became our home for a long time, so it was a bit of an adjustment for us all when Zara finally came home. I would advise others to take all the help offered. I think it’s also important to talk to people who are going through the same experience as you.
On reflection, I wish I had taken her back to the doctor or asked for a second opinion when I was not happy with the response I got from the GP. Also, we did dismiss a few of the symptoms she had at first as we did not associate them with leukemia.
To others, I would say do not wait or put it off – if you have any symptoms, go straight to your GP. Make a list of the symptoms and how long you have had them for, so you have a clear picture of what has been happening to pass on to your doctor. If you are not happy with the answers you get, ask for a second opinion or keep going back till your questions are being answered and the doctor has a plan. Spotting symptoms of leukaemia is important because the earlier it’s diagnosed the better the patient’s outcome can be.