Supporting families of children and young
 people with cancer in the East Midlands

“I am Evan and I live in Draycott in the Clay, near Uttoxeter. I live with my Mummy, my Daddy and my little sister Emily. We like walking and camping in our caravan.

“I’m eight years old. I am truthful, loving, kind, cheeky, and a little shy. I love Lego, sloths and dinosaurs and I am a very big bookworm, with me loving books.”

In 2017 I had just started in reception when ‘Tuba’ erupted in my tummy. ‘Tuba’ was a kind of cancer called a Wilms’ tumour in my left kidney.”

Fast-forward four years and thankfully Evan is now doing well. So well in fact that he’s chosen to walk an impressive 40 miles with his family to raise money for PASIC, to say thank you for the support they received during his cancer treatment.

We spoke with Evan and his mum Jenny about his cancer diagnosis and their fabulous fundraising efforts…

“When Evan was diagnosed with cancer it was a complete shock to all of us,” said Jenny.

“He was a happy healthy boy and was settling in well at school. He came home from school one day and complained of having a bit of belly ache. Within 20-30 minutes he was in agony, doubled over in pain and vomiting.

Jenny and Evan’s dad, Chris, took him to Derby Hospital, where initially he was diagnosed with suspected diabetes. However, during the night a consultant became concerned Evan’s high blood sugar could be a sign of something else and wanted Evan to have an ultrasound scan. After the scan, Evan’s parents received the devastating news that a tumour had been found in Evan’s kidney.

Evan on treatment

When we broke the news to Evan his response was that he couldn’t say the word ‘tumour’ so he was going to call it ‘Tuba’.”

Evan began treatment at Queens Medical Centre in Nottingham…

Speaking about this time, Jenny said: “We had to split our time being at the hospital, as well as being at home to spend some time with our daughter, who at that time was 18 months old.

“Emily enjoyed visiting the hospital as it meant she got to see Evan, as well as her Mummy and Daddy, but she often got upset when she had to leave.”

Evan went through several treatments over the coming months, including chemotherapy, radiotherapy and surgery to remove his tumour. Jenny and Chris realised the treatment was having an impact on the whole family, including little Emily.

“Soon Emily started using words like ‘tuba’ and ‘chemo’ when she was playing with her toys. She also saw Evan being sick when having chemo and would often remind us to get a sick bowl ready.

Evan ringing the bell

“Evan would often get signs of possible infections which meant it was hard to plan any activities. If we did risk planning something we wouldn’t tell the children until the day due to the risk of it not happening. We felt we were always on tender hooks, wondering if you were doing the right thing, and always thinking ‘is this the time there is something wrong?’.

All throughout his treatment Evan was a superstar, not wanting it to stop him doing anything.”

“For example, he wanted to do his school nativity play despite two performances being on his chemo day. Evan did the morning show and then went straight to the hospital for his chemo. On the way home we asked if he still wanted to do the evening show and his reply: ‘Yes, why wouldn’t I?’”

Evan with his thumbs up

During Evan’s treatment his family were supported by PASIC…

“We first met our PASIC support worker Jo on the ward (with her chasing down the sweets trolley for us!) where she explained who PASIC were and how they could help,” said Jenny.

“Following on from that Jo would often come to visit us, either while we were staying in hospital, or when we were in day care. Just seeing Jo’s friendly face during this time was what we all needed.

The days out organised by PASIC also gave us something to look forward to and gave us some ‘normal’ family time.”

“Jo recommended the parties as a way of us meeting other families going through something similar, and she was right. Going to the parties showed all of us that there were a surprising number of families having their own cancer journey.”

Evan adds: “I liked the PASIC parties because they were fun and there were some people like me there. This made me feel a lot better. I liked going to Thomas Land with PASIC because it was extremely fun and I might not have got to do it otherwise.”

Evan and his family are now taking part in PASIC’s #4the400 challenge to raise money to help other families facing childhood cancer. At any one time PASIC is supporting around 400 families in the East Midlands.

Evan, Jenny, Chris and Emily are walking an amazing 40 miles between 21st June and 21st July.

Evan and Emily in PASIC T-shirts
Talking about his fundraising, Evan said: “I am raising money for PASIC because they helped me throughout my treatment and afterwards. They also helped all of my family by being there to talk to us and have given us enjoyable days out.

I want PASIC to be able to continue so other people know they’re not the only child battling cancer and they can have fun while they have treatment for cancer.”

If you’d like to support Evan and his family please visit their fundraising page. And if you’ve been inspired, you can find out more about taking on your own #4the400 challenge by clicking here.

Evan and Emily