Month: January 2023

A generous donation from the Robbie Anderson Cancer Trust allows children with cancer to live a life outside of the hospital

At the age of two and a half Sophie Miles received a leukaemia diagnosis. Devastatingly in April 2019, she relapsed and didn’t respond to chemotherapy treatment and a bone marrow transplant was her only hope.

Whilst Sophie waited for her transplant, she was prescribed a treatment called Blinatumomab – currently the only cancer fighting treatment amongst children that can be carried out away from the hospital. This is possible thanks to a portable device called an infusion pump.

Because of the infusion pump, Sophie was able to receive treatment outside of the hospital and attend school

Sophie’s mum Nikki speaks very highly of the device:

“Sophie could carry the pump around in a little black bag that she’d have over her shoulder. It worked on AA batteries and was really easy to maintain. Only once did the alarm go off and it was really easy to fix. It really gave her a sense of normality as she would only need to go into hospital twice a week to change the medication infusion.”

Before this device, all children with cancer would spend long periods of time in Ward 27 receiving their treatment. For the patients on Blinatumomab, there was the option to be treated at home, but there weren’t any pumps purely for the children on the Ward.

Ward Sister, Jennifer Sneller, says:

“The situation wasn’t ideal. We needed to borrow pumps from the Adult Bone Marrow Unit, which involved a lot of coordination between teams and there was the risk that their patients needed to use them at the same time.”

Thanks to the generous donation from the Robbie Anderson Cancer Trust two infusion pumps now belong to the Ward for children like Sophie

The Trust was set up in December 2005 by the late 13-year-old Robbie to improve the quality of life for young people, like him, spending long periods of time on the children’s cancer ward. His parents Fiona and Kevin run the Trust which raises funds through donations and an annual rugby tournament which is returning in July 2022.

Kevin and Fiona Anderson were delighted to hear that the money raised has made such a difference for children like Sophie. They would love to thank the organisers of a rugby tournament – Alicia James and Georgie Fowle, for their support of the Robbie Anderson Cancer Trust for over ten years.

Sophie received her bone marrow transplant in September 2019 and is now doing well

Her mum Nikki was so grateful that more children like Sophie will have the chance to get on with life.

“Because of the pump, Sophie could play with her brother Harry in the garden with our pet rabbit Thumper. It allowed us to be a family together,” says Nikki.

Ward Sister, Jennifer Sneller, explained that the infusion pumps help children with cancer receive Blinatumomab at home but they have many potential uses for the future.

“Not only could the pumps allow us to administer total parenteral nutrition (TPN), where nutrition is given into the patients’ veins, but there is ongoing research into whether another drug called Methotrexate can be delivered outside of the hospital via an infusion pump too.”

2,300 patients will soon benefit from amazing state of the art immobilisation equipment during their radiotherapy treatment.

Robert Wait is one of the first patients at the Leicester Royal Infirmary to try out the brand new immobilisation equipment that gifts like yours provided.

Following a prostate cancer diagnosis, Robert started his course of 37 radiotherapy treatments in the weeks leading up to Christmas. To pinpoint the location of his cancer, he had a computerized tomography (CT) scan.

At each treatment the Radiotherapy Team must make sure that Robert’s body is in exactly the same position as it was in for the CT scan.

This way, they can deliver the dose of radiation into exactly the right place, targeting the cancer whilst avoiding damage to healthy parts of his body.

Most patients will have one treatment each day, with a break at the weekend. Treatments may go on for a maximum of 37 sessions over seven weeks.

Suzi Jordan, Head of Radiotherapy, said:

“Appointment times last around 15 minutes. We spend the majority of that time getting patients like Robert into the correct position. Immobilisation equipment keeps the patients comfortable and still during their treatment, which makes the treatment as accurate as possible.”

Most patients like Robert will use the ‘pillow fix cushions’ which are like head rests.

Robert told us:

“The pillow fix cushion feels amazing; it is much easier on your neck than when I had treatment previously. The foot rests are quite hard and slippery. I’d worry that I’d slip out of position, which may make your appointment even longer. To stay still I used to hold my muscles tight during treatment which made my neck feel really hot. Now I feel much more confident that I’ll stay in the right place.”

Robert goes on to say:

“Thank you for helping people like me. Not only am I more comfortable during my treatment but I feel my appointment time is much quicker. I count to 60 ten times and then I’m out of there.”

Suzi agrees that the new equipment will provide a much improved experience for cancer patients undergoing radiotherapy.

“We are so happy we can speed up the 32,000 patient appointments which we deliver each year. When the patient is comfortable in the correct position, we don’t need to take more images to verify their treatment positon.” – Suzi Jordan.

YOUR donations funded:

· Two ‘bottom stops’ which prevent many of the 600 patients with breast cancer from sliding off the breast board during treatment.

· Six ‘truncal cushions’ which are like thin mattresses that improve the comfort of roughly 120-150 patients with head and neck cancers plus the 1000 patients undergoing palliative treatment.

· Seven ‘pillow fix cushions’.

A freezer provides soothing relief for patients like Glenys.

Glenys Robinson, from Thurmaston, is a patient on Ward 41 at the Leicester Royal Infirmary. Following 16 years in remission, she recently received a Lymphoma diagnosis in January 2022 when she was feeling unwell and her daughter brought her into hospital.

“I wasn’t sure what exactly was wrong. I felt delirious. I didn’t expect a cancer diagnosis as I did not feel the same as the other times I‘d had it. I remember getting admitted and then I woke up here on Ward 41. It’s all a bit of a blur really,” Glenys says.

With visiting restrictions in place across the hospitals to prevent the spread of Covid-19, Glenys has faced her third cancer battle alone.

Glenys told us:

“At the moment we can’t have visitors to hold our hand or speak to us. The staff here are great. They work so hard and do their best to lift your spirits. I also managed a video call with my daughters and granddaughter. But it’s not the same. This diagnosis really slapped me.”

Before YOU stepped in to help, there was no freezer on Ward 41

Glenys has just finished her first of six cycles of chemotherapy and suffered from terrible sickness. This is a side effect she has experienced every time she has had chemotherapy.

“Thankfully this time round it’s not as bad because the Nurses gave me anti-sickness medicine but my throat is still very sore,” she says.

Thanks to you, Glenys can now have ice-cream to soothe her sore throat

“Because you helped fund the freezer we can have vanilla ice-cream for dessert. I’ve had it every day I’ve been here – I have it first, before my dinner before it melts. It’s such a lovely treat and is so nice on my sore throat. Thank you so much,” adds Glenys.

The freezer which cost £170 is of great benefit to haematology patients

Patients on Ward 41 have blood diseases such as cancer or sickle cell disease. For the patients undergoing chemotherapy the freezer you funded is so important for their wellbeing. Many of them suffer from a side effect called Mucositis. This is where their mouth or gastrointestinal (GI) tract gets sore because the cells they shed do not regenerate quickly enough. Having ice-cream provides some comfort to these patients.

Haematology Matron, Karen Pedley, says thank you:

“Not only does ice-cream provide some comfort when their throats are sore, but it also lifts morale. Many find their symptoms go away in the weeks between chemotherapy cycles and then they have to return for treatment. This is really hard going for them, but it’s the little things like getting an ice-cream that make the treatment more bearable. Thank you so much for helping fund the freezer.”

Glenys agrees that receiving an ice-cream every day is a massive boost to her morale:

“When you are ill and in hospital on your own, with nobody to talk to, receiving ice-cream is one of the highlights of the day. It really is something to look forward to – almost as good as being told you are going home tomorrow!”

Play is the centre of everything for a child

The new play-roof has been designed to encompass activities that holistically benefit the health and development of young patients. The conservatory divides it’s time acting as a storage unit filled with beanbags, bikes, toys and tents; and working as an indoor space to play and learn.

There is increasing research that a holistic approach to care accelerates the recoveries of young patients.

“Play is the centre of everything for a child,” says Elisha. It’s a normal behaviour and is crucial for a child’s mental and social health. Play helps to release tension and reduce negative feelings such as anger, frustration and isolation due to their condition. Play is also an indicator of their recovery. This space allows children and their families to escape from the wards and forget that they are in hospital, even if only for a brief moment.

The team of play specialists play a pivotal role in supporting the emotional health of children through therapeutic play. They use the play-roof to build a comforting bridge of trust and between the child and the clinical world through exploration of their fears and the development of coping strategies. They use a range of resources to explain procedures to apprehensive young patients and often accompany them to and from theatre. “Depending on the patient, we use age appropriate photobooks and teddy bears to demonstrate what is going to happen to them,” illustrates Elisha. “Especially when those procedures involve the insertion of cannulas, needles and lumbar punctures which are often distressing and uncomfortable,” she adds.

The play-roof also serves a vital function in the rehabilitation of young patients. The Physiotherapy Department often utilise the space to improve the physical health of young patients through exercise and mobility development. The space also serves as a “half-way” sensory experience for patients who from birth have never left the hospital and experienced sounds and sensations that we take for granted. “Imagine never hearing noises such as traffic, or feeling the wind or rain on you face,” emphasises Elisha. For these young patients, the experience of leaving hospital for the first time in their lives can be really overwhelming and the play-roof provides a safe space for these children to be exposed to such stimuli, develop their resilience and ease their anxiety ahead of discharge.

Kirsty’s son Arthur, aged 6, spent over two months in hospital with stays in the Intensive Care Unit (ICU) and Ward 10. Until the play-roof opened, he was unable to go outdoors and enjoy the summer weather. Kirsty explains the importance of this outdoor space. “During that summer Arthur was getting very down and depressed. He was feeling quite excluded and frustrated because he was so poorly. We were very lucky that we were able to benefit from this fantastic play-roof before he was discharged.

As a parent, it was so moving to see his face light up with when he felt the sun and rain on his face. I will never forget his beautiful smile when he was enjoying a lollypop outdoors – a simple treat that most of us take for granted. It’s my fondest memory of our time at the hospital. To go outside and benefit from the fresh air is so crucial for mental health – being confined to a hospital bed may treat the physical condition but it can be really hard-going emotionally for the children who have to face uncomfortable treatments day after day.

The ability to play or learn outdoors gives children and parents like us, a break from the hospital bubble. It presents an opportunity for the children to play with each other and spend time with the play specialists. It also allows us parents to socialise amongst ourselves. It provided a great sense of belonging to a community during those hard times and we made lifelong friends.”