Addenbrooke's Charitable Trust

Lottie's story

Lottie was five when she was diagnosed with cancer of the kidney. Her treatment is divided between Addenbrooke’s and her local hospital. The logistics of care between the two centres can be difficult and Lottie’s mum, Beckie, explains how, when things go wrong, the effects ripple across the whole family.


“It was a bit of a whirlwind. We got told about Lottie’s cancerous mass on Thursday 14 September 2016 and we were in Addenbrooke’s talking to Dr Amos Burke on the following Tuesday. Lottie was booked in for her biopsy and Hickman Line two days later. She started her very first chemo on 28 September, two weeks after they identified the mass. 

From September to December 2016 we were alternating every other week between our local hospital and Addenbrooke’s. Since this January, after Lottie had her operation to remove her tumour and her kidney, she’s only had her chemotherapy here, once a month. 

In the midst of her treatment I’ve had to be brave not just for Lottie but for my eight-year-old son too, trying to convince him that everything’s going to be alright. 

I’m a single parent and that can make treatment logistics difficult. Sometimes I get a call asking me to come into the hospital with very little warning – but then I have to sort out arrangements for my son. I can’t always just drop everything.  

We live 45 minutes away from Addenbrooke’s, if the traffic is good. When Lottie’s having her chemo we can be here for a couple of hours but, like today, because of human error made by my local hospital, I’m anticipating being here for about six. 

Lottie needs to have a whole range of bloods done before chemo can go ahead. But because the LFTs, Us and Es samples weren’t taken before our visit, the knock-on effect has been considerable. 

We’ve come in today but the chemo hasn’t been made up for Lottie. So we’ve had to wait for a nurse to be free to take the blood, then take it down to the lab, among her other duties. We’ve then had to wait for the technician to test it and take it to the computer to log the results for the doctor to look at. The doctor then has to feed that information back to the nurse - and in the middle of this, the chemo has to be made up because it has to be made up fresh – and then the nurse can give the chemo to Lottie. 

The knock-on effect of that is that we’ve had to wait so much time that I’m not able to pick my son up from school. So I have had to make arrangements for my mum – who has just finished work - to pick up my son, take him home, give him dinner, to then bring him back. 

Which has the knock-on effect that we don’t know what time they’ll get into bed. I’ve also got to start Lottie’s feed when we get home; she’s fed with a Gastrostomy  tube. It’s all those little things that escalate - and all because of one person not checking that the bloods are being done. 

The new children’s cancer co-ordinator new post would undoubtedly have improved the situation today, not just for me and Lottie but for all the staff involved too.”  

Children’s Cancer Coordinator

Ensuring the right appointments, tests and scans are organised and analysed in the right order can be difficult, particularly if multiple hospitals are involved in that child’s care.

Lottie’s experience shows the disruption caused to the whole family when that co-ordination breaks down.

Addenbrooke’s Charitable Trust has fundraised for a new staff member to specifically coordinate all the administrative aspects of cancer care on the Paediatric Day Unit. The co-ordinator will provide a continuous point of contact for families, help with shared care when multiple centres and agencies are involved and ensure that appointments run on time, with test results and treatments ready promptly.

This will not only ensure that children and families have a smoother, quicker and less stressful experience but will also be a major benefit for staff involved in their care.

The Children’s Cancer Coordinator post will ensure that each child, and their families, gets the care and treatment they need for their own personal battles against cancer.

 

Find out more about how you can make more amazing things like this happen for children at Addenbrooke's by clicking here.