Tilly Rae Rhodes, eight, from Lilleshall, and her family have endured more over the past 20 months than most people will in a lifetime.
After being diagnosed with stage four liver cancer in January 2020 Tilly underwent months of treatment, including a multiple-organ transplant and chemotherapy – all while she and her family had to shield due to the pandemic.
As she has been recovering from the treatment – and a major operation – Tilly created a logo with the help of her firefighter-father Tony, and the family have been selling merchandise to raise money for the hospitals which treated her, as well as goody bags for the youngsters they treat.
Now, on August 26, as Tilly Rae marks her one year transplant anniversary, her mum, Jodie, and the family have been busy preparing a combined celebration – Tilly Rae Fest.
The event, which will be taking place at Newport Rugby Club from noon to 7pm, will be packed with family entertainment, with Jodie saying she wanted to make it a real family event.
The day will be free to enter but some of the activities will charge, with a variety of stalls, activities such as bouncy castles, and a bar available.
The event will also include live music, and even school-style sports events for children with medals for those taking part.
Money raised through Tilly's merchandise stall, will be going to children’s cancer and transplant charities, and Jodie said they are hoping the event will demonstrate the importance of being a donor.
Jodie, 38, said they were looking forward to the celebration after going to “hell and back” over the last 20 months.
It started in January 2020, with Jodie explaining: “We ended up in hospital, we took her in because she had a pain in her shoulder. That was all we knew. It was because it had taken over all of her liver and it was pushing on the diaphragm and it had trapped a nerve in her shoulder.
“After we spoke to Shropdoc we took her to A&E and we never came back out.
“The doctors sort of knew what was wrong, they were thinking leukaemia and kept us on the children’s ward for about a week and then Tilly was taken by ambulance to Birmingham Children’s Hospital because she really deteriorated.”
Jodie said the doctors always thought Tilly would need a liver transplant but the situation became even more serious after a scan showed another lump on the outside of her liver.
The chemotherapy effectively broke the cancer up but sent it into some of her veins – meaning she required a bowel transplant as well.
After a lengthy period being assessed for suitability on a transplant ward the family were at home when they got the call that it was going ahead.
Jodie said: “They tell you that when you get the call you have got plenty of time, to calm down, ‘you have got plenty of time to get to us’.
“Well they rang at 1am and they said ‘you are an hour away, can you leave in the next half an hour?’, it was like a scene from Home Alone. You have all the bags ready but there’s always other bits you have to grab.”
While Tilly was undergoing the transplant operation Jodie said they had been encouraged by hospital staff to get out, rather than waiting for the lengthy operation to be carried out.
She said: “They were like, ‘go and get something to eat, have a walk around town’. We had been shielding for so long we were just like ‘no way’.
“They gave us these really good masks just to get us out of the hospital so we walked to the Bull Ring, did one lap of the Disney store and went straight back to the hotel and just sat there. How can you do anything?”
After the operation the surgeon updated Jodie and Tony on how it had gone – explaining that Tilly’s liver, large and small bowel, stomach, oesophagus, and pancreas had been replaced, while her spleen was also removed.
The operation is the only of its kind to be carried out on a patient with Tilly’s illness in the UK, and only the fourth in the world.
Tilly was expected to need 12 weeks recuperating at the hospital but her mum revealed that her determination saw her home a lot sooner.
She said: “They said we would be in for three months but Tilly being Tilly she was out in three and a half weeks.
“They call her the superstar, the miracle, that’s what they call her.”
Jodie said she was full of pride for the way Tilly, and her 15-year-old sister Tia had coped with the past 20 months.
She said: “She has dealt with it so well. Better than I have. And her sister, she has been amazing, she’s been a rock through it all.”
As they gear up for the anniversary of Tilly’s transplant Jodie is still busy planning for Tilly Rae Fest.
She said: “I always promised the girls a really big party because we had to shield for so long so I thought 'what better way than to have a festival?'. We want to make it the best day we can – a real family day people can enjoy.”
Jodie is still looking for large rides or activities for the day, such as trampolines or bumper cars, and anyone interested in providing them for the event can email her at firstname.lastname@example.org
To find out more about Tilly’s fundraising efforts visit shopwithtilly.com/ or the Facebook page TillyRae Merch.