My husband Benedikt and I have twins; Ben, who is a healthy four year old and Hadley, who was diagnosed with leukaemia two years ago. Since then our life has been a rollercoaster; a blur of antibiotics, chemotherapy, blood transfusions, school runs and daily chores.
We’ve been able to get through it because of Rainbow Trust Children’s Charity. They picked us up when we were at our lowest. They gave us the support we needed to get back on our feet.
“Hadley was fighting for her life, but we were all suffering.”
As parents, we were stretched to our limit
Benedikt often travels for work and we’d recently moved to the area; we had no friends who could help us out. Benedikt’s father had been diagnosed with cancer too, so it was a particularly hard time for us all.
We were at a critical point when Rainbow Trust came to help. Within a month of Hadley’s diagnosis, Mandy, our dedicated Family Support Worker was a part of our lives. We quickly bonded with her – all of us. Ben and Hadley aren’t really sure what Mandy does, or where she comes from. They think she might be a fun Aunty. Hadley calls her the ‘Rainbow Lady’.
“The last two years, we didn’t notice summer had arrived. We didn’t have time to feel the sunshine.”
Before Rainbow Trust, there were long days for me at hospital with Hadley and Ben. I felt lonely and isolated. I was lost in a whirl of medical jargon, medications and appointments. Because Mandy helps so many families like ours, she knows her way around hospital wards and could explain the processes to me as well as help me care for the twins during hours of chemotherapy.
Mandy helped me establish a routine, which gave the twins some stability. It meant Benedikt and I could return to something close to normal. We had some room to breathe. Mandy’s companionship meant I had someone to confide in too. She’s amazingly calm, despite the chaos all around us! I know Benedikt is comforted to know I’m not alone at home, worrying about our little girl.
We were worried that Hadley wouldn’t be well enough to start school last September. Ben didn’t want to be at school without his sister but with Mandy’s help, Hadley went and has kept up with Ben all the way. She particularly loves her art and crafts classes, as well as cookery and after-school activities.
Not everyone at school knows about Hadley’s cancer. It’s not a nice thing to have to repeat to everyone we meet, and it stops Hadley being treated as normal, which is what she wants. It gives her the freedom to be a regular four-year-old.
We’re hopeful for the future
For now, Hadley is on maintenance, which means she takes daily chemo medication and we have to travel to hospital for monthly treatments and tests. In August, we’re hoping for the all-clear, so we can enjoy our first real family summer. It’s given us the confidence to book our first family holiday - a week in Spain – the first time we’ve been able to spend time away together. Hadley is looking forward to practicing the Spanish she learns at school, as well as meeting some real pirates and catching sea creatures!
“We’re looking forward to seeing who our brave little girl really is.”
Since Hadley was two she has been on so much medication, especially now with her steroids, which make her hungry and moody. In August, all being well, she’ll come off regular medication and we can see what personality she really has.
We’re hopefully through the worst now, and can see Hadley getting stronger each day. But thousands of families are still without the support that can make a world of difference and brighten up their darkest days.
Just knowing we could call on Mandy if we needed to, at any time, meant the world to us. With every donation, Rainbow Trust can give struggling families, like mine, more support when they need it most.
Supporting Rainbow Trust with a donation - big or small - will mean they can reach more families who need them, and give more families a summer to look forward to.
Click here to donate online or call to make a donation on 01372 220083.