Little hero – Lily

“It was early February 2018 and Lily had seemed perfectly well up until then. She woke up with a bit of a sore leg, and she went to school after she’d taken some Calpol. The next day it seemed worse, and she was in some discomfort and was limping. We didn’t know whether she’d fallen out of bed, or if she’d hurt herself in PE at school.

“I took Lily to the GP who examined her and thought it might be a ligament strain on her knee, but to be sure he advised we went to A&E for a blood test and X-Ray. I took her straight to A&E and again the doctors thought it was a ligament problem.

“By Thursday she was in a lot of pain, which worsened throughout the day. I rang the out of hours service, and they said to go back to A&E. By that point, we had an inkling that it was something more sinister.”

“After blood tests at our local hospital, our GP called us that afternoon with the results. I remember them saying ‘I don’t want to alarm you, but you need to go straight to the hospital. They are waiting for you to arrive; Lily’s blood results aren’t good.’

“We panicked, chaos ensued in the house as we ran around packing bags and trying to sort out where our older daughter Ruby was going to go. We were very concerned.

“About an hour after we arrived at the hospital, we were pulled out of the room and told by a doctor that they thought Lily had leukaemia. That was the first that we’d heard of it. We were in absolute shock and we just couldn’t believe it.”

“We were told leukaemia required specialist treatment, that Great Ormond Street Hospital (GOSH) would take over her care, and that we would likely go to GOSH after the weekend. But about an hour later we found out something else had shown up on the test results which meant we needed to go to GOSH immediately.

“We were blue-lighted to London in an emergency ambulance, and we arrived at GOSH that evening, very distressed and scared. But as soon as we arrived, the staff took control and took care of us all. We were admitted to Giraffe Ward, and the nurses were superb. They gave Lily plenty of pain relief. They had a really caring approach.

“We met our consultant quite early the following morning and she was brilliant. She explained the diagnosis in very simple, gentle terms. When I look back at that moment now, I remember knowing nothing at all about leukaemia. We’ve gone from knowing nothing, to knowing everything about it.

“We waited while Lily had some tests to properly diagnose which type of leukaemia she had. Then we were told Lily’s diagnosis — acute myeloid leukaemia (AML). She started chemotherapy that day.”

“During Lily’s first chemotherapy cycle, she spent about 50 days in hospital and I stayed with her. The first cycle was the most gruelling for Lily, she was in a lot of pain, it was all very frightening because we didn’t know what to expect.

“My husband Darren (Lily’s dad) stayed in a hotel at first, then in the family accommodation arranged for us by the social worker at GOSH who was fantastic. She arrived on the scene once we had our diagnosis, talked us through all the things that were available for us and organised the accommodation, which was so valuable for us as a family as it meant he could be at the hospital with us both in just minutes.

“By the second cycle, we’d got into a bit of a routine and we were handling things much better. I would stay a few days in hospital with Lily, then Darren would come to take over and I would go home to rest. That way our eldest 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. It can be quite hard.

“I tormented myself in the beginning that I didn’t spot she was poorly. But the team at GOSH reassured me that AML comes on so quickly and that it’s fast moving. By the time we got to GOSH, Lily’s leukaemia cells had already matured, which is why it was so important Lily started treatment as quickly as possible.

“The chemotherapy led to Lily’s long blonde hair falling out, but it has started to grow back now, and it’s quite dark and fuzzy. She looks like a little gosling, but she looks absolutely gorgeous with her little crop. I think that’s helped her a lot towards the end of her treatment.”

“As well as the medical staff treating Lily’s leukaemia, there are other teams at GOSH who look out for Lily’s needs too.

“The Play team in particular have been fantastic with Lily. She is a very sensitive child and because of all the needles and the blood tests through her treatment she developed a real phobia of them. They’ve been excellent at helping her with this and have prepared her for everything — from having blood taken to having her dressings changed — with activities like drawing and practising procedures on toys before she has them, so she knows what to expect.

“Lily also started to lose weight because the chemotherapy made her lose her appetite, and because of this she had to have a nasal gastric tube. The play specialists, play workers and nurses have worked really hard to minimise her distress with having this too.

“Other members of staff at the hospital have played their part as well. Lily has a lovely tutor from the hospital school who comes in every day, and she has an hour of lessons which she absolutely loves.

“Both Darren and I tell everyone about how good GOSH has 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 such a special hospital.

“I don’t feel I’d have been in anywhere near as good a state as I am if we’d been staying in another hospital. It's just a really special place, it’s totally set up to deal with such serious conditions like the one Lily had.”

“Lily has now finished her treatment and rung the end of treatment bell! She’ll be monitored monthly at her local hospital, with a quarterly review at GOSH. After that, she’ll be monitored annually at GOSH.

“We still 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, and bruising.

“I can’t even describe how proud we are of Lily, she is amazing and takes everything in her stride.

"She has handled everything so well and is so brave, bouncing back after every setback. Her positivity and sense of humour is what has saved us, she’s so funny and upbeat. She’s kept us going.”