Supporting Terminally Ill Children

Hadley had been ill on and off for months and when I look back now, I wish I had made the doctors do a blood test. In December 2014 she had a double ear infection and she had never had ear infections before. It lasted a long time, so she was put on antibiotics for it and it went away but she just never seemed right. We went through that winter with her being sick on and off. Her twin brother, Ben, would get a cold and Hadley would get it too but Ben would get over his cold quickly whereas Hadley’s would last a long time. She kept getting sick and the periods in between illnesses were getting shorter and shorter.

I eventually made an appointment with the GP who suspected that she had leukaemia. She didn’t tell me that immediately, but told me to take Hadley to the hospital for some blood tests. It was when the doctor came in and pulled the curtain across that I felt something was wrong. It was a chilling moment and still brings tears to my eyes when I think of that awful moment. He pulled up a chair next to me and told me they suspected that Hadley had leukaemia.

I felt scared for her, for what she would have to go through but I was convinced she would survive. I couldn’t even think she wouldn’t. Her prognosis was good and I clung to that. It was only when things didn’t go to plan that I didn’t feel as sure about things.

My husband was not well at the time and wasn’t able to help me as much as he could so I was grateful when Rainbow Trust Children’s Charity was recommended to us. Logistically I was struggling to manage two small children with one needing to be in the hospital. We contacted Rainbow Trust and a whole team arrived to offer their help. We discussed what we needed and met Mandy, a Surrey based Family Support Worker. It was so good to have the support.

I wasn’t in a good place so just knowing there were other resources available made a difference. For us it was practical things so Mandy stepped in and helped with, such as taking us to the hospital appointments. It was just so helpful having someone else there for us.

When Mandy couldn’t drive us to hospital appointments due to other commitments, Cliff, a Rainbow Trust volunteer driver, would take us to the hospital and wait for us. He was such a kind man and was so good to talk to. He was reliable and we knew if he was driving us to the hospital, that we’d be in safe hands.

Mandy provided me with companionship which was so nice for me. I was in a foreign country with no network of friends to help and it was so good to have someone to help me navigate through things like the NHS or tell me how things worked.  She helped me at the hospital too and would play with the children while I focussed on talking to the consultant or doctors. Having her there also meant I could go get a coffee or take a break which is so hard to do in the hospital and it’s the little things like that that made a big difference to me. It was peace of mind for me. It helped take my mind off of Hadley’s treatment or tests and also gave me space to talk to Mandy about anything I was worried about.

I would definitely recommend Rainbow Trust to anyone who needed them. They have made a big difference to our lives and we are very grateful for that. Your donations have made it possible for families like mine to receive help at hospital and at home, which has given us so much hope.