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Lily's story

Lily first became unwell

“It was early February, and Lily had been perfectly well up until then. We’d not had any issues other than coughs and colds, the usual things that children get at school. She woke up on Monday morning with a bit of a sore leg, and I sent her to school with a bit of calpol, and said ‘you’ll be fine’. On Tuesday it seemed worse, and she was in some discomfort and was limping. We were trying to ascertain if she’d fallen out of bed or if she’d twisted it in PE at school. I wasn’t overly concerned at that point but on Wednesday morning she seemed worse and tearful, so I didn’t send her to school and took her to the GP. The GP examined her and he thought it might be a ligament strain on her knee but he wasn’t entirely sure as he couldn’t isolate where the pain was coming from, so he said: ‘I’d like you to go to A&E, and ask for a blood test and an x-ray’.

“I took her straight to the A&E department, and the doctor there didn’t want to do a blood test or an x-ray, they thought it was a ligament strain on the knee, and we were told to go home, rest, ice, compress and elevate the knee and to let her have the rest of the week off school. We went home that day, she was uncomfortable, she didn’t sleep very well that night and she was in quite a bit of pain.

“On Thursday she was in a lot of pain which worsened throughout the day, on Thursday night she didn’t sleep at all, she was just writhing around the bed crying and distressed. We didn’t know what to do next because we had already been turned away from A&E but it seemed apparent that it couldn’t be a ligament strain because we’d been icing it, we’d been giving her medicine and it didn’t seem to be working.

“I rang the out of hours service, and they said ‘go back to A&E, this sounds serious’. By that point, we had an inkling that it wasn’t a ligament strain, that it was something more sinister, unfortunately.

“We went to A&E at about five in the morning, they said they couldn’t see anything out of the ordinary. We took her back to the GP, and the GP was fuming and said: ‘I’d like you to go to the local hospital, here’s a form for a blood test to have there’, which we did. The GP then called us that afternoon with the blood test results and said on the phone ‘I don’t want to alarm you, but you need to go straight to the hospital. They are waiting for you there, Lily’s blood results are not good.’ We panicked, chaos ensued in the house as we ran around, packing bags, trying to sort out where our older daughter was going to go. We were very, very concerned. We took Lily to hospital, and they started monitoring her. About an hour after we arrived, we were pulled out of the room and told by a doctor that they thought Lily had leukaemia.

Coming to Great Ormond Street Hospital

“We spent an anxious night in hospital, they explained to us that the leukaemia required specialist treatment, that Great Ormond Street Hospital would take over her care, and that we would likely go to GOSH on Monday. But about an hour later we were told something else had shown up on the blood results in the lab at GOSH which meant we needed to go there immediately. They arranged an emergency ambulance and we arrived in London at about 10 o’clock on Saturday night. We were all very distressed and scared, but the staff at GOSH took immediate control and immediate care of us. We were admitted to Giraffe ward. The nurses were superb, and just took control. They gave Lily plenty of pain relief. They had a common sense, and caring approach.

We met our consultant quite early the following morning and he was brilliant. He explained the diagnosis in very simple, gentle terms. We waited a week on Giraffe ward at GOSH being looked after by the nurses, who are excellent, while Lily had some genetic tests to properly diagnose which type of leukaemia she had. The following Tuesday we were told Lily’s diagnosis - acute myeloid leukaemia (AML). It took a little while to diagnose it as Lily had some unusual results. She started the chemotherapy that day.

We’ve gone from not knowing everything about AML to knowing everything about it. I tormented myself in the beginning that I didn’t spot it. But the team at GOSH reassured me that AML comes on so, so quickly – we’re talking one to two weeks, it’s that fast moving. By the time we GOSH to GOSH, Lily’s leukaemia cells had already matured, which is why it was so important we started treatment as quickly as possible. That’s why they blue-lighted us down to GOSH.

Lily’s treatment

“During Lily’s first cycle, we spent about 50 days in hospital, and eventually we were allowed to go home to recover after the completion of the first cycle. During that cycle she had numerous tests and scans, and she was monitored really closely to make sure chemotherapy wasn’t damaging her other organs. “The first cycle was the most gruelling and she was in a lot of pain, it was all very frightening. By the second cycle, we’d got into a bit of a routine and we were handling things much better. I would do a few days in hospital with Lily, then my husband would come to take over and I would go home to rest. That way our elder daughter was always being looked after by one of her parents at home, and she could continue going to school, leading a normal 12-year-old girl’s life. It also meant we were managing the intense time in hospital between us. GOSH is a wonderful place, but there are very seriously ill children and very distressed parents around you, which makes it very intense.

Support at GOSH

Darren stayed in a hotel at first, then in the family accommodation provided for us by the social worker at GOSH who was fantastic. She arrived on the scene once we had our diagnosis, she talked us through all the things that were available for us, organised the accommodation for my husband, helped us with some benefits and other things for Lily, and was just generally very good at supporting us as a family. “We didn’t think we would need this type of support but she’s been brilliant, she’s just so helpful so
that was another positive aspect of being at GOSH, it’s very holistic.” “Both Darren and I tell everyone about how good GOSH have been. We can’t complain at all, we’ve
had excellent treatment. The clinical care nurses are amazing, the nurses in the ward are amazing, they do a fantastic job. It’s just the feel of the place as well, it’s such a special hospital. “Lily says it’s fun, she has a lovely tutor from the hospital school who comes in every day, and she has an hour of blended lessons which she absolutely loves. The play team come round to ask her to decorate some cakes, to do some arts and crafts, they always bring round activities for them so that
mums and dads can get a break. “I don’t feel I’d have been in anywhere as good a state as I am if we’d been deadline with another hospital. The children’s hospital is just a really special pace and they’re totally setup to deal with such serious conditions like Lily had.

Support from the play specialists and play workers

“A positive aspect of being at GOSH is it’s very holistic. You have the nurses, doctors and medical staff, but you also have people like the play specialists, who have been fantastic with Lily. She’s very scared, she’s very sensitive, and she has developed a very nasty phobia of needles and blood, which is difficult when you have leukaemia. They have been excellent at trying to work through some of those challenges around having blood drawn, having pinprick tests, and have dressings changed. She’s had to have a nasal gastric tube to be fed because she’d lost her appetite and we didn’t want her to lose lots of weight. These are all potentially scary things for Lily, and the play specialists and nurses have worked really hard to minimise her distress. They’re very good, you don’t have to ask twice for them to know you need them to help. There are people coming and going all day, doctors and nurses, and they are very respectful and they understand that it’s difficult but it is hard for the families, you don’t get much private time.

End of treatment

After she finishes her treatment, Lily is classified as a low risk because of the type of genetic mutation that caused her cancer. They’ve given us an 80-90% chance that it will not come back. Once she’s finished her treatment, she’ll be monitored once a quarter by her doctor at GOSH, for one year. After that, she’ll be monitored annually at GOSH.

After she finishes her treatment, we have to keep a close eye on her and watch for any symptoms, which we’re now much more aware of. They’re so subtle which is why we didn’t notice when she first became ill – paleness, tiredness, bruising. Now we’ve been through it, we watch her like a hawk all the time and I’m very attuned to her.
Additional information on treatment “Lily’s leukaemia is treated with four cycles of chemotherapy – the first two are ‘induction’ cycles, designed to kill off the leukaemia cells. The second two cycles are called ‘consolidation’, and they are designed to stop it from returning. The cycles use the same drug, but a higher dose, for the consolidation cycles.

Ringing the end of treatment bell

We’re going to ring the end of treatment bell on all three wards! She’s stayed on Elephant ward and on Giraffe ward, she’s not stayed on Lion but we’ve walked through it many times when we’re going backwards and forward to say hello to people, or to visit the family room or the kitchens. Lily’s hair has started to grow back., it’s quite dark and fuzzy at the moment, she looks like a little gosling but she looks absolutely gorgeous with her little crop. I think that’s helped her a lot.

The future

We’re all looking forward to having some time together as a family, whether we make our family holiday abroad or just spend some time somewhere in the UK – it will be really special