At this year’s Rockinghorse Ball, we were joined by parents Kerry and John Leppard from Haywards Heath.
Kerry, kindly and bravely, came along to tell our guests a little bit more about her family’s experiences. She delivered a poignantly moving speech to the room about the positive impact Rockinghorse has had on them.
In her own words, here is Kerry’s story…
“So, let me tell you a bit about us; John and I were delighted to be expecting our second child in 2011. Baby Leppard was due on Christmas Eve but made a slightly early appearance on the 16 December. Her timing made daddy miss his work Christmas party! This is something that I’ll never forget, because his first response to me telling him that I was in labour, was ‘but it’s my Christmas party tomorrow night’.
However, the Christmas party was the furthest thing from his mind as he welcomed our baby into the world. We delighted in our new little girl, who we finally named Florence three days later. Happy as we thought we could be with our two little girls, Daisy and Florence, we were blessed again with another little girl born in April 2013. Elsa was a very special gift and most definitely completes us.
Elsa’s first birthday serves as a milestone not only in her own story, but Florence’s too. With hindsight, I look at pictures of Elsa’s birthday party, and days out at that time, and I knew Florence was unwell. She was tired and wanted to get back in her pushchair instead of walk; she was under the weather in a non-descriptive kind of way.
I remember saying to people that I thought she might have chicken pox, and I waited for those spots which are often preempted by the poorly-ness. The spots never came, so I booked an appointment with the GP. I went along not really sure what I was going to say, except that Florence now appeared to have a bloated tummy and just wasn’t herself.”
“The GP was the best kind. He listened and validated my parental instinct entirely. When he felt her tummy, he told me something was indeed wrong. Sitting in the waiting room whilst he sought advice was one of many of the worst times in my life to date.
That evening was spent in the Royal Alexandra Children’s Hospital (the Alex) in Brighton. Florence underwent tests and as Friday 16 May 2014 drew to a close, we were told that she had a liver tumour which was probably cancer.
The next day John and I cried. The radiologist comforted us as we all saw on screen the mass encompassing Florence’s abdomen. Over the next four days we journeyed from the Alex to King’s College Hospital in London (our first and only ambulance ride) to the specialist liver team for a biopsy, and then the Royal Marsden in Sutton.
On arrival at both hospitals, I felt my fear and dread heighten; I just didn’t want to be here. I was away from two of my children and my husband, surrounded by poorly children and scared parents. I had to tell my two-year-old it was all ok, whilst she was being prodded and poked.
At one point, the only place they could get blood was from her foot and I was holding her down for them to do it. At King’s I signed the consent for her biopsy during which they would fit her Hickman line too. I wanted to scream ‘no’ with every fibre of my being but had no real choice.
Beginning the treatment
“On Wednesday 21 May, John and I met with the consultant who confirmed Florence’s diagnosis as Hepatocellular Carcinoma. It’s a rare cancer in children with a poor prognosis. Florence also had secondary disease in both her lungs. The 5% chance she was given loomed over us like a dark heavy cloud.
We did, again, what was our only real choice – to go for the chemotherapy and to do it now. That night once Florence was settled in her hospital bed, John and I cuddled together in the single bed next to her and sobbed silently.
What ensued was an epic journey. An adult protocol was adapted for a two-year-old, seven cycles of chemotherapy, light sensitive bright red doxorubicin (that is so toxic we had to wear gloves to change her nappies).
She had meds given through her line, blood taking from her line, flushing of the line and changing her dressing as she screamed. Neutropenia, blood transfusions, fevers, late night dashes to hospital, antibiotics, scans, X-rays, kidney function, heart and hearing tests. Overnight we became Florence’s nurses, doctors and advocates.
Worst of all, the ‘there is nothing more we can do’ conversation. Florence could have only one more round of chemo. She had reached the limit for her size and the tumour hadn’t shrunk enough. Then came the call we hoped for; a conversation with an angel in human form.
He was a softly spoken, gentle man who would try his best for our daughter. He made no promises but worked a miracle and removed the tumour, along with two thirds of Florence’s liver. The surgery and Florence’s recovery weren’t without incident, however. The margins weren’t clear, and she was in pain but from that moment, her journey changed direction toward remission.”
“I have squeezed one of Florence’s soon to be eight years into three minutes. There is so much more I could tell you about her and about what happened to her, but the real reason I am here, is to tell you how Rockinghorse have helped us.
So, Florence is now in Year Three at school. She is a bit of a model pupil; she is attentive, curious, clever, confident, imaginative and creative. She also loves her Irish dancing, swimming and football, and has a great group of friends.
Her friends and many of our family would not recognise Florence as angry, rude, unkind, demanding and unreasonable – which is what we were frequently seeing at home. It felt hard at times to like the little girl we had come so close to losing.
In the aftermath of Florence’s cancer, we were struggling to support her. We ourselves were struggling to find help to support her and gain some harmony in our new normality. Florence’s situation is like her cancer, rare. We had been referred to the wonderful Chestnut Tree House but of course, for good reason, Florence no longer fitted their criteria.
Private services are costly and other wonderful charitable services just aren’t equipped to deal with Florence’s psychological needs. I felt like I was banging my head against a brick wall, trying to find the right service for us.”
The Rockinghorse Clinical Psychologist
“During Florence’s treatment, I had discussed the need for some psychological support with the team at the Alex. I was absolutely delighted to hear that the children’s Oncology service now had a clinical psychologist in post. Dr Alice Emond is better known as the Rockinghorse Clinical Psychologist and is funded by the charity.
She has been supporting Florence for six months now. Alice provides a safe place for Florence to be heard and understood. She understands the emotional impact of her illness and it is recognised and treated accordingly.
Whilst putting Florence at the centre of the treatment, the sessions are also equipping us all with the tools to respond to challenges in a supportive way. The impact has been quite amazing, and we are very grateful. I only wish Alice had been available to us throughout Florence’s entire treatment. She would have been able to help identify early on, the potential impact of Florence’s cancer journey on her emotional wellbeing.
Rockinghorse fund Alice’s post and do so in response to needs identified by the medical teams working directly with sick children. This year Rockinghorse increased provision by another day. This means that Alice is able to reach even more children and their families, preparing them for extensive treatment plans for cancer, including surgeries.”
Supporting Aidan’s Christmas Dinners Project
“I cannot separate my involvement with Rockinghorse from a very special friend of mine, Lucy Pond. Lucy joined the Rockinghorse team in 2018 and is now the charity’s Challenge Events Fundraising Manager. Lucy is also a mum of three and her son Aidan should have been in Florence’s year at school.
Aidan died at 19 months of mitochondrial disease, something which I had never heard of before then. Just two months after Aidan passed away, Florence was diagnosed with cancer. As part of our church and school community, we supported each other through our very different traumas.
Lucy has channeled huge amounts of energy into a wonderful legacy for Aidan called ‘Aidan’s Christmas Dinner Project’. When we brought Florence home from her surgery to recover over the Christmas period, Lucy gifted us one of Aidan’s special hampers.
That year, John’s eldest daughter (my wonderful stepdaughter) volunteered at the Alex. She helped prepare meals for children and their families in hospital on Christmas Day. As time has gone on, the bond between Lucy and I, has gone from strength to strength. I have found great comfort in our friendship so when she asked if I wanted to take part in the charity’s iDrop event at the British Airways i360 this year, how could I resist!
There are no two children I would rather have done it for than Florence and Aidan, and no two projects that mean more to me. Thank you to Rockinghorse for supplementing our remarkable NHS with much needed services.”