Lois' Story ....

Lois was so fit and healthy Lois was nine years old in 2019 and always on the go. She attended so many after school clubs, especially loving her weekly Stagecoach theatre school classes. She was so fit and healthy and during her time in Year 4 she had never had a day off school. Then one Sunday in June 2019, she woke up complaining of a sore throat, had a temperature of 40 and generally felt very groggy. I didn’t want to leave her until the next day so with it being a Sunday I called 111. They actually sent paramedics to us who said she had a severe throat infection and they took us to our local A&E to be checked over. She was sent home with a dose of antibiotics after being seen by a paediatrician.

The spots were the first symptoms By Friday she was back to being lively Lois again and was ready to go back to school but she pointed out some spots appearing on her arms and legs. Our immediate reaction was; “oh no she has chickenpox” and feeling grateful, that if it was, she had caught it now, rather than just before our summer holiday. I managed to get an appointment with our GP that day who wanted a precautionary blood test carried out to confirm whether or not Lois actually had glandular fever and due to this had reacted to the antibiotics. Luckily I managed to get the last appointment of the day for a blood test at our local hospital and they said they would let me know the results some time the following week. Well, the phone rang about 6pm that evening and the hospital asked if we could bring Lois straight in. I remember saying; “It’s not serious is it, could her rash just be the sign of an infection?” The doctor just replied, I would rather get her seen tonight, than wait until Monday.

The devastating news no parent should hear We left the house that evening with nothing packed as we fully expected to be coming back home. How wrong we were. The more tests and examinations they did, we soon realised this was far more serious than we had first imagined. As soon as the doctor said, a nurse will sit with Lois so we can move to a separate room, we just knew it was bad news. Then we heard the word no parents ever expect to hear; “we believe Lois may have leukaemia”. The bottom fell out of our world at that point. I just felt numb and panic stricken. I kept thinking, how can she? She doesn’t have any of the usual symptoms I know you associate with leukaemia such as being excessively tired, bruising etc. Quite unbelievable to think that we saw the doctor at 11am that morning for a rash and by 10pm, we had a diagnosis of leukaemia. 11 hours in total. We are forever grateful at getting such a swift diagnosis. We were immediately moved to the children’s ward and from there Lois was transferred to a hospital in Sutton where the diagnosis of acute myeloid leukaemia was confirmed. We stayed as an inpatient all summer, eight weeks in total for her first round of chemotherapy. As her mum, I found it impossible to leave her side, so I stayed with Lois while her dad Gary and older brother Joss used to visit every day. We often watched films together in the family room. Luckily we lived very close by.

Lois’ treatment plan

Lois would receive four rounds of intensive chemotherapy but she never moaned. She was absolutely amazing with her resilience and attitude. That’s not to say there weren’t any moments of tears and upset, especially when she was feeling very low from the sickness due to the chemotherapy side effects. She also lost lots of weight as she completely lost her appetite. She struggled to take some of her medicines orally and due to also needing liquid top up feeds, had to have many NG tubes fitted over time, which she hated. I dreaded having the conversation with her about losing her long hair, so I approached the subject by saying her hair will start to get very thin and may start to fall out at some point. She shrugged her shoulders and said; “will it grow back? If so, then I’m ok with that.”

Beads of Courage UK Programme While in hospital, we were introduced to the Beads of Courage UK programme by the play specialist. These beads are very important to us as they give Lois the opportunity to record her own unique journey in a child friendly way. Her string of beads allowed her to create her own tangible, physical diary right from the day of diagnosis. It is something she can take out, play with or just look at, rather than only having a written journal of events. Lois loves telling people what each colour bead represents and they can then visually see for themselves what her cancer journey entailed and all she has endured. Some children may be too young, or some just too emotional talking and reliving their illness to people. Their beads are a great tool to help tell their story for them.

How the beads help children with cancer? Many children panic and have severe anxiety over pending procedures and treatments – I know Lois did as she became especially distressed at the thought of having a general anaesthetic for any bone marrow tests or having a NG tube inserted. Taking time to look at beads from previous occasions can really help them overcome those fears, show them how brave they have been in the past and that they “CAN” do it again. Not only do the beads help the children, as from a personal point of view, they help us as parents too. We have found it invaluable to look back on her journey. In the first few weeks after diagnosis when we were thrown into this oncology world, it is all a complete memory blur and we cannot remember all the procedures and exact diary of events. We now look at her beads to help us recollect the journey she has been on. We can now see for example, she had 45 blood/platelet transfusions and spent 101 nights in hospital over a six month period.

Lois featured in a music video for Beads of Courage UK Chemotherapy may have finished but Lois is still supported by the programme. She

continues to collect and add to her string of already over 820 beads, whether it be for a blood test or outpatient appointments. Lois is extremely proud of her beads as it shows her and everyone around her all she has achieved and overcome. When Lois was fortunate enough to be asked to be involved in the recent Beads of Courage UK documentary and music video, she jumped at the chance. We were so pleased and privileged to be involved as it was a great opportunity to help raise awareness and the much needed funds for such an important charity. Story as told to Children With Cancer UK by Juliette, Lois’ mum, January 2022