"We were in a state of total shock and knew at that point that whatever it was, it was going to be serious."
When nine year old Lily woke up complaining of a sore leg, parents Sam and Darren never imagined the diagnosis would be anything more than that.
"Lily is a very bubbly nine year old girl, who is always smiling or laughing about something. She loves reading and learning and has a very curious mind – nothing gets past Lily!" Describes mum, Sam. "She’s kind, caring and thoughtful and growing in confidence each day. Lily loves drawing and building Lego, horse riding and seeing her friends. She also enjoys baking, riding her scooter and playing with her cat, Pixie. She dislikes being told what to do and having her hair and teeth brushed… also spiders and the dark!"
Lily had been perfectly well throughout her young life up until early February 2018 but woke up on the Monday morning complaining of a sore leg. Her mum sent her to school with a bit of calpol, telling her she'd be fine. On the Tuesday it seemed worse, and she was in some discomfort and was limping.
Sam says, "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."
At this point, Sam began to be fearful that something was wrong. The GP examined her and he thought it might be a ligament strain on her knee but to be sure he said he'd like her to go to A&E, and ask for a blood test and an x-ray.
Sam took her straight to the A&E department, but was told to go home, rest and ice her knee and to let her have the rest of the week off school. They did as advised but Lily was uncomfortable and didn’t sleep very well that night as she was in quite a bit of pain. Sam explains, "my instincts were telling me that something wasn’t right, but rationally we had to trust what the doctors had said."
On the Thursday Lily was in a lot of pain which worsened throughout the day and 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 she was in so much pain without moving around; we’d been icing it, we’d been giving her pain relief and it didn’t seem to be working."
Sam rang the out of hours service, and they said ‘go back to A&E, this sounds serious’. By that point, Sam and Darren were fearful that it was something more sinister, but they had no idea what it would turn out to be.
They went to A&E at five in the morning on Friday, where they were told again that they couldn’t see anything out of the ordinary. Sam explains, "ee were very angry to be turned away again so took her back to the GP, who 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."
By this point Lily was unable to walk and had to be carried by her Dad. The GP then called them that afternoon, saying ‘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.’
Sam remembers, "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." The GP then called again as they were packing to say, “you will be going to Great Ormond Street as soon as possible after admission”.
"We were in a state of total shock and knew at that point that whatever it was it was going to be serious.. It was very difficult to remain calm for the sake of Lily and our older daughter Ruby." They took Lily to hospital, and they started monitoring her. About an hour after Lily and her family arrived, Sam and Darren were pulled out of the room and told by a doctor that they thought Lily had leukaemia.
"We were completely distraught. Making phone calls to tell our parents was the hardest thing I have ever had to do."
Sam remembers, "we spent an anxious night in hospital and then had it explained to us that the leukaemia required specialist treatment, which needed to start immediately. They blue lighted us to Great Ormond Street Hospital where they gave Lily morphine and a blood transfusion and tried to make us as comfortable as possible. We were all very distressed and scared at this point."
"We met our consultant quite early the following morning and she was brilliant. She explained leukaemia to us in very simple, gentle terms." They waited a week while Lily had scans as well as genetic tests to properly diagnose which type of leukaemia she had. "Lilys’s illness was, by the consultants own admission, something of a puzzle. The following Tuesday we were told Lily’s diagnosis - acute myeloid leukaemia (AML). She started the chemotherapy that day as with acute myeloid leukaemia, time was of the essence."
Sam recalls, "We tormented ourselves in the beginning that we didn’t spot it. But the consultant reassured us that AML comes on so, so quickly – we’re talking one to two weeks, it’s that fast moving." By the time they were admitted to hospital, Lily’s leukaemia cells had already matured, which is why it was so important they started treatment as quickly as possible.
During Lily’s first cycle of chemo, they spent 50 days in hospital and eventually were allowed to go home to recover after it’s completion. During that cycle Lily had 3 operations, numerous tests and scans, lots of intravenous drugs, fluids and blood products and she was monitored really closely to make sure the chemotherapy wasn’t damaging her other organs.
Sam remembers, "this first cycle was the most gruelling. Lily was in a lot of pain at the start, it was all very frightening. She had an allergic reaction to penicillin and also, we saw the obvious side effects of the chemotherapy as it began to take hold which was very painful to observe."
"By the second cycle, we’d got into a bit of a routine", explains Sam, "and we were handling things much better, although watching our daughter deteriorate due to the treatment and her obvious suffering was indescribably painful and difficult for us as parents to witness. "
Lily’s leukaemia was 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. Lily's Dad Darren explains, "we were extremely fortunate to be offered a place for Lily on the Myechild clinical trial which gave access to an innovative drug being used to combat AML. Lily received several doses of this drug which gives higher chances of full recovery. The decision to go on the trial was an easy one to make; it allowed access to this amazing drug and also gave us comfort that the study would help improve treatments for children in the future, a win win situation."
"Throughout the process Lily was very scared of the medical side of things" Darren explains. Current AML treatments are extremely toxic and take a brutal toll on a young child’s body and mind. It is a very difficult and lengthy treatment and requires long stays in hospital, often spent in isolation.
"Lily also had frequent blood and platelet transfusions, as well as antibiotics to counter infections. By the end of treatment, she looked much more unwell than at the start. Lily lost so much weight and was as white as sheet, with no hair, sallow skin and shadowed eyes. She had zero appetite and had to be tube fed for several months. She was often sick, had continual diarrhoea, and developed terrible mouth ulcers and sores as the mucosal membranes eventually break down due to the toxicity of the treatment.
"She missed being at school so much and especially missed being able to see her friends and spend time at home doing what normal 8 year olds would do. She has developed a terrible needle phobia and is also very sensitive to any testing that needs to be done.
"Recovery has been good but very gradual, both physically and mentally. The treatment we received has been incredibly effective but does come at a cost in terms of suffering of both the child and those standing by to witness that suffering."
Sparks are looking at a new, kinder and more effective way of treating AML.
Darren explains, "I think anything that can advance the treatment of the condition beyond pumping a child full of highly toxic drugs and depleting their systems to an extent where they are too weak to leave their bed, too sick and sore to eat, too tired to do normal activities and isolated for months at a time, is only going to be a good thing - an amazing thing!
"If this new treatment in any way minimises the suffering of children with AML it will be well worth it."
"Our wish for the future is less invasive and less aggressive treatments for AML and anything that can prevent it from occurring would be simply wonderful."
Sam and Darren believe, "No child should have to face such a thing happening to them, but the reality is that far too many do, and so child health research is so very important to enable effective and efficient treatments for serious diseases and conditions that both minimise suffering and improve outcomes for all."
After Lily finished her treatment, Sam and Darren had to keep a close eye on her and watch for any symptoms, which they're now much more aware of. "They’re so subtle which is why we didn’t notice when she first became ill – paleness (she has always been pale and fair skinned so this is a difficult one), tiredness, bruising. Now we’ve been through it, we watch her like a hawk all the time and we are very attuned to her" says Darren.
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" explains Darren. "She’s been monitored once a quarter by her doctor for one year and now this has recently changed to annually."
"Lily’s hair has now fully grown back. It is now shoulder length and curly and the envy of everyone she meets. I think her hair growing back has helped her a lot, along with her positive attitude and ability to live in the moment – as far as she is concerned the cancer is just something that happened and she is over it now. She looks healthy, has rosy cheeks again and an appetite and zest for life and is able to enjoy all of the activities she used to do before being unwell. In particular she loves horse riding and the thought of being able to do this after her treatment finished was a key milestone in her recovery" says Dad, Darren.
"Family time is very special, we don’t ever take it for granted as we know that life can change in an instant. We are incredibly grateful and blessed that Lily is well and that her AML is behind us all. She is a wonderful and brave little girl who’s strength and courage has carried us through." Sam and Darren.
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